Category Archives: Eosinophils & Mast Cells

Mast Cell Activation Head Trip

One of the most frustrating things with Mast Cell Activation Syndrome (MCAS) is getting an actual diagnosis. The condition mimics so many other illnesses and conditions that it fakes out the patient, and even more so, the doctor(s). Sadly, some doctors, without the ability to make a diagnosis of what is wrong with a patient, will say “maybe it’s all in your head.”

I heard those words from various doctors when I was attempting to get diagnosed with what was wrong with me. It took me 5 years of suffering before I finally got a diagnosis, and that was 10 years ago. Once I did get a diagnosis, I would still hear variations of it. And it was very disheartening.

I saw a Chiropractor for a few years, who said to me once, “I should have someone sneak a new food into your meal. I’ll bet you’d be fine eating it.” I was mad and shocked that she would insinuate that the severe gut issues I was experiencing was caused by something I was making up in my head or by anxiety. She knew that I was seriously ill, and eating only 4 different foods. At the time, I knew that I was having reactions to trace amounts of foods (and chemicals). I had to be careful of pots that weren’t thoroughly cleaned, or a knife put into my vegetable oil based “butter” that cross contaminated it. Right around that time, I had awakened in the middle of the night at least twice feeling as if I couldn’t breathe. I finally found the source – my mouth guard I wore overnight. I had not thoroughly cleaned my mouth guard of the cleaning chemicals I had used. It’s frightening to awaken in the middle of such a severe reaction, and it taught me to be much more careful. It also taught me that trace contact with items could be severely affecting me. My body was really amped up, and I needed to be much more careful. I knew that this chiropractor wasn’t the right one for me anymore, and chose to see a new practitioner who honored the experiences I was having, and who knew that my symptoms weren’t all in my head!

Then there was the allergist at a food allergy conference that I attended about 5 years ago. I asked a question about Mast Cell Activation, to which he replied that there is no such thing. It is made up! That was difficult to hear, but I realized that in his pediatric allergy practice he didn’t have the training to understand mast cell issues. I couldn’t imagine being one of his patients trying to find out what was wrong, and having to hear him negate their experience! I decided to unfollow him on Twitter as my final goodbye to his way of thinking.

When I would hear comments like these from a doctor, I felt he/she was suggesting that my physical symptoms weren’t real. And I knew they were very real, and were causing me a lot of pain.

Yet, I also knew that my mast cells activating had a mental/emotional component to them. And I’ve understood and tracked this better through the last few years. If I feel stressed because of pollens in the air, or feel overwhelmed with work, or not getting enough sleep, my gut hurts more. And why does my gut hurt? Because the twitchy mast cells in my body are most prevalent in my gut. The receptors on those cells are constantly looking for a reason to protect me. And there’s nothing like stress to activate those receptors.

I’ve gotten better at being able to identify when I’m stressed. I have a local allergist’s office that posts the local pollen counts daily, and this helps me to check their website when my gut feels especially cranky. Inevitably, the pollens have gotten higher, and I might need to increase my antihistamines.

I can clue into my body when I’ve been working a lot to see what is occurring in my energy levels. Am I overtired? How am I sleeping? Am I anxious with a new client? All of these help me to monitor whether my mast cells are likely to activate in an attempt to safeguard me. And a lot of those feelings are actually sourced by what’s going on in my brain. What am I telling myself?

This is where I’ve learned that there is communication between my brain and my body that is important to recognize. The desire to be perfect at work and to never make a mistake is sadly a familiar mantra in my brain. Yet, recognizing that I’m human, and mistakes are part of the human experience is something that I still struggle to accept. And when one of those mistakes occur, my brain is likely to chastise me with harsh language. And guess what? The mast cells activate!

Another way that my brain affects me is how I view my condition. I’ve learned with a chronic illness that if I awaken in the morning feeling less than optimal, and I then kick into telling myself, “Another day of feeling terrible,” I’m guaranteeing that I will have a joy-less day.

If, on the other hand, I tell myself, “Okay body, you’re not feeling as well as you would like, but let’s get going and see if this gets better,” it’s amazing how my body starts to shift. Inevitably, I find that I can still take a slow walk in the neighborhood, or even just have a loving conversation with my husband or a friend. And my mood begins to lift, and my body begins to feel better.

Spending time with the family!

I’ve learned that if I wait until I feel wonderful, or even normal (whatever that is/was!) to do things, then I will never go and do anything. Sometimes, going and doing things is what helps me to feel better. And if nothing else, just having a conversation with someone and connecting to them allows my brain and body to shift.

So, while MCAS isn’t all in my head…the thoughts surrounding the symptoms and conditions of MCAS are certainly affected by my thoughts. I’m continuing to learn more about the brain and its wiring with the body with an app called Curable. I will write more on this blog about what I’m learning as I continue to practice the exercises. So stay tuned!

Slowly Healing from Mast Cell Activation Syndrome

I was diagnosed with MCAS (Mast Cell Activation Syndrome) almost 10 years ago. It took a few years of trying every prescription medication my GI doctor could find to begin to get my symptoms stabilized, and even then I still was suffering from weight loss, fatigue, stomach pain, insomnia and an inability to increase my diet.

I have written at length about how I got diagnosed in a series of posts here. I have continued to work toward healing, and the question that has come into my mind a lot recently is, “Why is it taking so long for me to heal?”

I know that I am SO much better than I was 6 years ago when I first started with Dr. Xiu-Min Li and Traditional Chinese Medicine. (If you want more detailed information about Dr. Li and her protocol, read this.)

I was hoping to get back to New York City to see Dr. Li in person last year and to discuss my slow progress of healing, but the pandemic altered those plans. Thankfully, our almost monthly Zoom calls have kept her up to date and have kept me receiving all my digestion teas, creams and herbal foot patches. However, unlike other MCAS patients of hers, I am still unable to tolerate almost anything that goes through my digestive system, and that severely limits my progress. I have been able to sloooowwwwly increase the herbs in my digestion tea in milligram quantities, and the same is true for the herbal foot patches. I would so love to just be able to take herbal pills and begin to eat a wide variety of foods and feel great! For some reason, that isn’t the path of healing that has been laid out in front of me. And the only way to tolerate more herbs in my digestive system is to heal my digestive tract. Dr. Li reminds me to practice patience and to be grateful for small amounts of progress.

Acupuncture is helping to heal my stomach and gut, but it too is a balancing act of my doctor using enough needles to create healing without stimulating my system too much with too many needles. Thankfully, I don’t have to worry about how she does that, but I can tell you that she has learned my internal system quite well over the last 6 months. I explained to her at my first visit that my nervous system gets amped up and goes into fight or flight mode if my body gets overstimulated, which defeats the entire purpose of acupuncture! Dr. Debbie thinks that my body needs to detox the toxin that she believes remains from when I reacted severely to a wasp sting almost 15 years ago. She has begun a detox regimen where every 2 months she pokes my ears and encourages them to bleed. It sounds barbaric, but I can attest that my body is feeling less toxic, and according to her my pulse and tongue appear to be showing signs of the detoxification which is very encouraging. This detoxification is currently showing up in my skin which has flared with eczema and other rashes that itch furiously. So again, we are working slowly and methodically toward healing.

Both of these Traditional Chinese Medicine modalities have allowed me to decrease my medications, which is a real gift. I no longer need the swallowed corticosteroid that I was using for EoE, because the combination of acupuncture and digestion tea has healed my esophagus. (To read more about acupuncture and EoE, read this.) And I’ve decreased my Zyrtec dose to 1/2 of a pill daily because I no longer suffer from extreme pollen allergies in the spring and summer. Additionally, I haven’t had to take any Rhinocort AQ nasal spray so far this year. That is amazing!

I continue to see my Network Spinal Analysis (NSA) chiropractor, Dr. Munn, weekly and have learned that my spine is unwinding. In the years that I was so sick and unable to sit or walk for long periods of time, my spine was apparently twisting. I just knew I hurt, and didn’t realize everything that was going on with my body. My body is now healing, and the unwinding of my spine has created a tingling feeling on the left side of my back where it feels like it’s been asleep – probably because it has! This unwinding has been alternating between pain and relief as years of energy are releasing. Once again, Dr. Munn tells me that we can’t force my body to unwind because we don’t want to overload the nervous system, and the body is going to take its time…patience, patience. Read more about my experience with NSA here.

Wisdom Healing Qigong is assisting my body with releasing all of that energy, and I practice it daily. I have found the meditative practice not only helps my body, but it also calms my mind. MCAS created a lot of anxiety inside my mind, and I used to get jumpy with every sound and was constantly worrying about every symptom I was experiencing. Meditation and Qigong have quieted my mind so that I can now distinguish when I am jumpy, and can use detective work to determine what is creating that anxiety.

The only way out is through. The unwinding of my body is also the unwinding of my mind, and I continue to learn more about myself through this journey. I now experience more connection between my mind and my body, and the herbs and other healing modalities create even more opportunities to be with any painful or challenging areas along with the ability to be with the good stuff. My body is no longer asleep, and I’ve learned how to breathe through pain and not need to take a medication immediately to numb it. I would certainly love to not itch, but this too will pass!

Acupuncture & Eosinophilic Esophagitis

I have been a patient of Dr. Xiu-Min Li’s for over 5 years now, utilizing her Traditional Chinese Medicine (TCM) herbs to assist with healing my gut, and minimizing the symptoms I have experienced from the dual diagnoses of Eosinophilic Esophagitis (EoE) and Mast Cell Activation Syndrome (MCAS).

I have also been slowly weaning myself of other medications that are standardly given for EoE and MCAS. I am currently on a very small dose (1/4 of a 10 mg tablet) of Zyrtec (antihistamine) and an even smaller dose (1/20 of a 1mg capsule) of Ketotifen (mast cell stabilizer) in addition to one puff of swallowed Asmanex daily. The reason why I am on such a low dose of these medications is that my gut has been healing, and taking higher doses of any of these medications makes me feel worse rather than better.

Additionally, while Flovent is generally given to be swallowed to mitigate the symptoms of EoE, I recently found out I’m reactive to it. I experienced hives and eczema on my upper chest after being on the drug for a few weeks, and even with lowering the drugs, the itching was severe. Therefore, I went onto Asmanex, also swallowed, and no longer have any itching!

There is no cure for EoE or MCAS currently. These traditional drugs are to assist with symptoms, and prevent further damage to the gut. I wanted to find a cure, which is why I became a patient of Dr. Li’s in 2015. (Find out more about my Healing Through Traditional Chinese Medicine here.) For patients who live in and around the New York City area, Dr. Li will provide acupuncture treatments to assist their body in healing during regularly scheduled appointments.

Since I live in Colorado, I have monthly or bi-monthly Zoom chats with Dr. Li to check in with her about my progress and to order more herbs. I needed to find a local practitioner who was willing to provide me acupuncture without over-stimulating my body. Dr. Li’s biggest concern was that my body could overreact to acupuncture, and I needed to ensure that any doctor I saw would understand the level of stimulation that I could withstand that would be helpful and not hurtful.

I’m happy to report that I have found a wonderful doctor here, Dr. Debbie Hsaio Ki Ting in Colorado Springs, who received her degree from Samra University of Oriental Medicine in Los Angeles, CA and the Beijing Academy of Traditional Chinese Medicine in China. Dr. Debbie was happy to communicate with Dr. Li if that was necessary, but Dr. Li said that she trusted her to understand what my body needed.

What we all want: A Healthy Esophagus

When I first met with Dr. Debbie, I went into a long explanation of my various diagnoses to ensure that she understood everything I thought she needed to know about me. I have to laugh now because her response to all of that information was similar to Dr. Li’s – Traditional Chinese Medicine isn’t concerned with “Western medicine” diagnoses. They view the body in an entirely different way: energy balance and restoring the flow of Qi (chi). Dr. Debbie’s conclusion was that I have a lot of inflammation in my body, and she would be able to mitigate that inflammation through acupuncture.

Dr. Debbie has found the perfect balance of stimulation without overdoing it. The first few sessions were a little too much for me, and I found myself with severe stomach aches a few days after the treatment. I shared this information with her, and she backed off by using fewer needles until I could tolerate more needles. And I began to feel MUCH better after having acupuncture. I noticed especially that my intestines calmed down tremendously. That was especially nice since the fall flare of pollen was beginning to ramp up, and I continued to feel better and better!

My gut is much calmer and not so reactive, and the only thing that has changed is that I’ve added acupuncture into my healing regimen. I continue to take all of the herbs and apply the creams that Dr. Li has prescribed for me in addition to having acupuncture every other week from Dr. Debbie. I continue on the road of healing, and not just symptom relief, but true healing! I’m very hopeful to soon be able to increase the number of foods that I eat from my paltry four. It has been a long road of recovery for my gut, but I was very sick when I began TCM.

If you’d like more information about Dr. Li’s research, she has published a study about Traditional Chinese Medicine and Acupuncture, Successful Management of Eosinophilic Esophagitis Using Traditional Chinese Medicine: A Case Report.

Mast Cell Activation Syndrome and Post COVID-19 Illness

A recently published article by Dr. Lawrence Afrin, the author of Never Bet Against Occum: Mast Cell Disease and the Modern Epidemics of Chronic Illness and Medical Complexity, and two other mast cell doctors, have found a consistency of symptoms of Mast Cell Activation Syndrome (MCAS) and those of “long-haul COVID-19”. They also postulate that those patients with severe COVID-19 symptoms of hyperinflammatory cytokine storms may in fact have undiagnosed MCAS, a chronic multisystem inflammatory disease.

If you are not familiar with the illness of Mast Cell Activation Syndrome, it is a beast of an illness to live with and to diagnose, mainly because the symptoms can look like so many other illnesses. (I have written a series of informational articles about MCAS here. )

For some people, the symptoms of MCAS aren’t enough to actually seek medical care. They may have an occasional stomach ache, or rash, and have never needed to become a detective to determine why they were able to eat blueberries, for example, last month and this month their stomach hurt horribly after eating them. Or the few hives that they get in the autumn season aren’t enough to bother them. Yet underlying these symptoms and others, the body’s mast cells are overreactive, while the person will declare themselves perfectly healthy. Then, when the body begins to fight off a virus such as COVID-19, the body overcompensates its response to the viral load and releases thousands of chemicals (cue the cytokine storm) that end up doing more damage to the body than the virus itself.


SARS-CoV-2-Reactive T Cells Found in Patients with Severe COVID-19

Recent statistics regarding COVID-19 suggest that only 15-20% of patients will experience a severe form of the illness. It is interesting to note that previous research on the prevalence of MCAS in the developed world is 17%, with the abundance of individuals unaware that the symptoms they are experiencing are in fact from mast cells acting abnormally.

Any virus would call forth a response by mast cells in order to heal the body. The problem with MCAS individuals who remain undiagnosed and therefore untreated, is that their mast cells are dysfunctional and react inappropriately to COVID-19 causing thousands of chemicals to be released into the body.

Fatal cases of COVID-19 are frequently caused by cardiovascular conditions, and heart damage has been one of the frequently cited long-term affects of the illness. Mast cells play a significant role in cardiovascular complications seen with COVID-19 such as pulmonary embolisms. Additionally, mast cells patients frequently cite “brain fog” as one of their symptoms, a common complaint of long-haulers with COVID-19.

Fatigue is a classic symptom of MCAS, frequently made worse by insomnia. Once again, these are common complaints of individuals who are still experiencing symptoms months after being diagnosed with COVID-19. In the research report, the doctors provide a table of symptoms by organ/system comparing MCAS with COVID-19 patients. The similarities are striking.

For individuals in the midst of the virus, doctors are finding that medications used to mitigate the symptoms of MCAS, inhibiting mast cell activation, are also helping COVID-19 patients: cromolyn; leukotriene inhibitors, dexamethasone, low-dose naltrexone, quercetin, and H1 and H2 blockers (antihistamines such as Zyrtec and Pepcid). These drugs might mitigate the severity of the illness, helping patients to not progress to the severest form of the disease.

An interesting note in the article concerned MCAS patients who had been previously diagnosed and were being treated for their mast cell activation. When these patients tested positive for a COVID-19 infection, all fared well enough that the doctors stated that “none have required mechanical ventilation, let alone died”. Their conclusion was that the patients had their mast cells at least partially controlled so that they did not suffer the most severe courses of the disease, but that they were still at increased risk for suffering from the post-COVID-19 illness.

For those of us with a diagnosis of MCAS, the volume of research that is currently occurring on COVID-19 will undoubtedly help us to have more understanding of our illness. And hopefully, a cure!

You can read the full article, Covid-19 hyperinflammation and post-Covid-19 illness may be rooted in mast cell activation syndrome in the International Journal of Infectious Diseases.

Happy 20th Birthday to AllergicChild!

Twenty years ago this month, I started AllergicChild.com. The Internet was still barely beyond the idea stage, and there were VERY few websites pertaining to food allergies.

I had just written my book, “Allie the Allergic Elephant: A Children’s Story of Peanut Allergies,” which my husband and I had self-published. It was the first edition of the book, and several newspapers across the US and Canada had run an article about the book giving out our office telephone number as a way to buy it. I was getting phone calls from numerous families managing their child’s peanut allergies wanting to make a purchase. Hence the need for a website to reach across the world, and to help with lowering the number of phone calls!

The website opened up a lot of communication with families trying to figure out how to send their child to school safely; how to go to worship services and how to explain food allergies to extended family members. I literally received hundreds of emails every week asking me every question you can imagine about how to manage their child’s food allergies.

I answered every email I received. I knew that I had one of the few websites on the Internet that had information about food allergies, and people were always so thrilled to be able to reach a real person who would answer their questions. And many times, I had questions for them as to how they were managing issues that we had yet solved. It was a healthy exchange of ideas.

The website soon included pages detailing our experience of sending our son to preschool. He turned 4 years old the end of January in the year 2000, and we had several months worth of preschool stories to share. I continued to add pages to the website with other experiences as we tried to navigate life safely.

In December of 2005 I began to send out a monthly newsletter. Blogs had yet come into being, and this was the best way to share food allergy news with our followers. My son was almost 10 years old by that time, and he had his own column in the newsletter called “Morgan’s Corner” where he answered questions. Readers would send in inquiries about how Morgan dealt with the emotional aspects of food allergies, such as bullying or being left out of activities. The American with Disabilities Act had yet to be amended to include eating as a major life activity, and sadly schools were not as aware of accommodations to keep children with food allergies involved in all of a classroom’s curriculum.

We had a lot of information on our website about how to read a label to ensure your child was safely avoiding their allergen since labels had no laws governing what had to be listed. In January of 2006, the Food Allergen Labeling and Consumer Protection Act (FALCPA) became effective. This changed our family’s ability to be able to read an ingredient label and know what was in the food. Labels still had a long way to go to become as reliable as they are today, but it was a great starting point!

The ADA Amendments Act of 2008 became effective January 1, 2009. Morgan had been attending a school that was very aware of 504 Plans and had already placed him on one at the start of kindergarten in the fall of 2001. This Act helped many other students across the US have access to accommodations where school districts weren’t as educated about food allergies.

Facebook seemed like a good place for us to extend our reach, and in 2009 we started our AllergicChild group on the platform. It has grown organically up to over 13,000 followers today.

In 2011, we started the blog that I continue to this day. Morgan has added many of his own experiences to the blog including middle and high school trips, preparing and going to college, studying abroad in college, and being in the work world. Raising a good self-advocate was my primary purpose as Mom, and that took all of his 18 years of living at home!

We added a category of Eosinophils & Mast Cells to the blog in 2013 after both my daughter and I got diagnoses. We found there is a big overlap in families who have food allergies, to manage these issues and even celiac disease too. And we continue to share our experience and our hope for a cure.

Thank you for coming along for the ride these past 20 years! We couldn’t have done it without your support, emails and readership. Hopefully we’ll have a cure for food allergies so we won’t need to be here in another 20!!

Mast Cell Activation Syndrome and Chemical Exposure

Many MCAS patients have difficulties with scents and odors. The Mastocytosis Society lists these items along with many other triggers on their website.

My daughter, Michaela, has been experiencing mast cell degranulation upon exposure to certain chemicals, and not just the scent or odor. Most recently it has been to chlorine in a swimming pool. It’s also been to an exposure of carbon monoxide, and to the off gassing from new floors and paint in a house.

The result of all of these exposures has been the sensation of a reaction followed by gut pain. She has taken Benadryl to mitigate the symptoms, and has never had to use an epinephrine autoinjector since the reaction hasn’t been that severe. Within a day of the exposure, she gets a terrible cold virus. Each time she has used her detective skills to determine what caused her symptoms, and came back to these chemicals.

Her recent reaction to chlorine is disappointing because she loves to swim. She swam every day during the summer when she was a child, and never had any issues. However, in the last year, both times when she went swimming, she has ended up with swollen nasal passages and a sore throat within hours after swimming, along with a painful stomach. She takes Benadryl, which helps the inflammation and then the next day she comes down with a cold virus. She is hoping to find a pool in the Denver area, where she currently lives, that uses minimal or no chlorine, but has yet to find one!

The carbon monoxide exposure was the weirdest because there is no smell. After touring a newly constructed hotel in Denver, she was feeling nauseated and having trouble breathing without coughing. She couldn’t figure out what was going on, and the symptoms quickly ceased. Two days later, she awoke and felt the familiar symptoms of a mast cell reaction along with the breathing difficulty and dizziness. She immediately went to the emergency room where the doctors said she exhibited all the signs of carbon monoxide poisoning and that the hotel that she toured was in the news after having a carbon monoxide leak. They put her on oxygen for several hours and then released her. Because her lungs had been compromised two years previously during aspiration pneumonia, she has to be very careful about exposures to breathing in chemicals.

Michaela also experienced a strange reaction two summers ago. She began experiencing what she thought was a mast cell reaction at a house she was staying at taking care of the owner’s dogs. She felt dizzy, nauseous and began having the shakes – classic signs for her of a mast cell reaction. She took Benadryl and an extra Ketotifen, and felt only slightly better. The next day she began getting a terrible cold virus, and chalked up the entire situation to getting sick. After three days, at the end of the job, she returned home and then went to our Network Spinal Analysis chiropractor. He immediately asked her how she came into contact with chemicals. He stated that the cold she had was from an overload of chemicals running through her body. He could feel her body’s negative response the minute he began working on her. She called the home owner and found out that they had just had their floors redone and new paint applied to the interior walls! The off gassing from the renovation had created organic compounds to be trapped in the house, and she reacted violently. The good news is that she has learned to ask more questions about her environment when she is staying somewhere other than home.

Mast Cell Activation can be a serious issue, and one that she has learned to manage on a daily basis by asking questions and being very aware of her environment to mitigate exposure as much as possible.

Stress and Mast Cell Activation

white blood cell. mast cell or a mastocyte, labrocyte. mast cells are the cells responsible for causing allergic reactions or anaphylaxis, also aide in the healing of wounds and defense against invading pathogens.

There are many stresses in our world that can cause a mast cell to degranulate: pollens, chemicals, foods, illness, injury and even good old emotional “stress.” If you have a mast cell activation syndrome (MCAS) diagnosis, being mindful of stress is key to keeping your condition from negatively affecting your life.

I have found that there are some stresses that are more easily managed, such as the foods that I eat or the chemicals that are in my home. I make sure that I never “cheat” with foods. I know which foods I can tolerate, and I always maintain my diet with only those organic foods. Is it hard to be that vigilant? Yes, it is! However, I know my body well enough now to understand that adding any extra stress doesn’t make me feel good, and certainly puts my physical and mental health at risk if a stressor comes along that I can’t foresee.

My husband and I have recently begun using only non-toxic products in our house for cleaning. We’ve found that the Better Life brand is great, and they have every kind of product you can think of for glass cleaning, dusting, dishwasher soap, etc. (By the way, I’m not receiving any funding for this endorsement. It’s based purely on my experience.)

Other stresses are more difficult to learn how to manage. I’ve gotten better through the years to be able to recognize when my work is creating too much of a burden on my time, thereby creating stress. I am blessed to be able to work out of my home, which assists not only with the environment in which I work, but also that I can make my own foods in my own kitchen, and I can take a 20 minute afternoon nap if I feel so inclined.

I can’t stop the spring or fall pollen flares, but I can be mindful of increasing my use of antihistamines, taking a shower before bed, and keeping the windows of my home closed and the air conditioning on. All of these actions help to lower the stress load of pollens on my body.

Having an allergic reaction to a bee sting last summer created a storm of mast cells that necessitated a round of Prednisone to calm down the reaction. Any type of allergic reaction creates tremendous stress on the body, and especially for those of us with MCAS. I am always aware of bees in my environment since I’ve had a bad reaction previous to this one, and I carry an Auvi-Q in case the reaction is severe. Sometimes, though, a bee comes out of nowhere which is what occurred with this sting.

Late last year, I got a case of bronchitis that lasted 6 weeks, and left only after taking an antibiotic, which I haven’t had to take in over 12 years. The stress of the illness plus the medication was difficult for my body to recover from, and my mast cells were trying to be helpful by degranulating. Instead, I felt sick to my stomach in addition to coughing! Bodies do heal, and slowly I got better.

Also, over this past year, I have twice had injuries. I fell on a gravel path last year, spraining my ankle. It took months to get back to “normal” of being able to walk. My mast cells reacted for about two weeks with a storm of activity while my nervous system responded to the bruising and swelling of my ankle. I increased my Ketotifen to calm down my system, and took care of myself. Because of my sensitive stomach, I’m unable to take any type of pain medications – even Tylenol or Advil – without having more mast cell degranulation. Therefore, I get the opportunity to rest, breathe into the pain and to heal instead of taking pain medication and moving back into life right away.

Last week, I was in a car accident when a 1/2 ton truck ran into my car going 40+ mph. I thankfully was able to walk/limp away from the accident, however my car was totaled. The impact on my muscles, and the bruises that continued to show up for days, showed me what a stress the accident had put on my body. Sometimes, there’s nothing we can do when a big stressor shows up. I’m very grateful that my body had been doing really well with no illnesses or issues for a good 5 months before the accident occurred. And it’s been a difficult recovery where once again I’m unable to take any pain medications.

My goal is balance – balancing the stress in my life which plays out on my mast cells. It requires for me to be constantly aware of my body and my environment. I have to be a good advocate for myself, especially if I’m in a location that is filled with perfumes or smoke, and get out immediately! I worry less and less about what others think about me, and whether they think I’m weird. I’m sensitive, and that’s a good thing!

How to Obtain a Mast Cell Activation Diagnosis

I have recently been hearing from numerous people asking me how to obtain a mast cell activation diagnosis. What kind of doctor should I see? What kind of tests should I have done? Is there a blood test for it?

I share what I had to go through for 5 years before getting a diagnosis. I saw numerous different doctors – a primary care medical doctor, a D.O. primary care doctor, a private practice allergist, a private practice gastrointestinal doctor, an allergist and a GI doctor in a medical research facility…the list goes on and on. While I had numerous blood, urine, skin prick and food allergy tests, endoscopy and colonoscopy tests, no one could figure out why my stomach hurt 24 hours a day and I was continually losing foods in my diet. Everything came out “normal” in these tests; however, no doctor was actually biopsy testing for mast cells.

The food allergy and skin prick tests showed that I had some food allergies, but I wasn’t able to eat the foods that I wasn’t allergic to without severe gut distress. In other words, I was still reacting to foods that I wasn’t allergic to, and this was baffling for my allergist. This is a common refrain of those with mast cell issues. When I read online about someone who says that they are down to only tolerating a few foods, I ask the question, “Has anyone mentioned a mast cell activation disorder to you?”

Sadly, at this point, there is no blood test to determine a mast cell activation disorder. I got a diagnosis of a mast cell activation disorder when I saw a GI doctor who sent out my endoscopy lab biopsies to be stained for mast cells and tryptase. He also stained for eosinophils, and there were plenty of those in my esophagus and intestines also. By the time I finally saw a doctor who knew what to look for and how to accurately test me, my mast cell count was 30-40 per high powered field, and my eosinophils were 80-90. Most doctors agree that you want these counts below 15 per high powered field. Finally, I knew why I was feeling so terribly!

Mast Cell granules which contain mediators

What I found is that medical doctors know a protocol to test for systemic mastocytosis, and they are more than willing to do that. I had one doctor who wanted to do a bone marrow biopsy on me. Thankfully I knew that I didn’t want that type of an invasive test. I had read enough about the systemic form to know that I didn’t have those symptoms.

There’s a great write up on diagnosing all types of mastocytosis and mast cell activation syndromes on The Mastocytosis Society website here. The interesting item to point out when it comes to mast cell activation disorders is that one of the criteria for diagnosing it is to put the patient on H1 and H2 inhibitor medications (generally Zyrtec and Zantac) to see if they feel better. If the patient feels better, then it must be a mast cell disorder! Backwards logic.

Most people seeking a diagnosis have been dealing with all kinds of odd manifestations of mast cells for years before they get to a breaking point and decide they need to get a diagnosis. Most mast cell activation issues manifest with gut involvement. A person’s bladder may be affected (a diagnosis of Interstitial Cystitis involves mast cells), but they also have gut issues. The good news about the gut involvement is that an endoscopy can be completed and biopsies can be stained to determine if mast cells are proliferating.

So, first thing I suggest to people is to have a food allergy testing to see if there are foods to which they have a true allergy. The second testing I suggest is to get an endoscopy and have the biopsies stained for mast cells.

If you do receive a mast cell activation diagnosis, you want to get on some type of antihistamine (and maybe even a mast cell stabilizing medication) as soon as possible. The longer that a person delays, the longer that mast cells will be activating, and the worse you will feel. This activation can create havoc on organs, and the cycle only gets worse. Soon it’s not only your gut that is affected, but the mast cells are proliferating at such a high rate that they can even move into your brain. You then begin to experience “brain fog.” This is a neurological issue where it’s difficult to concentrate, to remember things and to follow conversations. This cognitive dysfunction can affect people of all ages when there is mast cell involvement. I’ve experienced it myself when I was the sickest. Thankfully, by getting on a cocktail of antihistamines, a steroid, and a mast cell stabilizer for a few years, I was able to come back to my body. From there, I’ve done many other non-Western modalities to help my body heal.

I don’t know of one person who was suddenly able to get better without any type of medical intervention when it comes to a mast cell activation disorder. But you can get better! I am living proof of that.

Mast cell issues are increasing at a phenomenal rate currently. Ask any allergist if they have mast cell patients, and virtually every one will say yes. They will also probably say that they are some of the sickest patients they have, with so many symptoms it’s difficult to know where to begin to help them!

As a patient, we need to advocate for ourselves. Listen to your intuition. If a test doesn’t seem appropriate for you because of the cost or because it’s too invasive, speak up.

Read up on mast cell issues. The Mastocytosis Society website in the US and the Mastocytosis Society Canada have great resources to help patients get treatment.

I’m always willing to chat and to assist you by sharing my experience of what has worked for me! Feel free to contact me at Nicole@AllergicChild.com

 

 

 

 

 

 

Progress and Setbacks with Mast Cell Activation Issues

For those of you who manage mast cell activation issues, you know how things can go great and then reverse direction within a day! Mast cells can be triggered by foods, chemicals or scents, and by environmental triggers and seemingly by 100 other items where we’re constantly playing detective. I work hard to keep my diet completely organic and to stay away from foods I’m allergic to; to not be exposed to any chemicals (such as hair dye or cleaning solvents) and to mitigate dust, pet and other pollen exposure. That has helped me to progress tremendously since my activation issues began 12 years ago. I’ve also found a few new areas that create setbacks, which I’ll share below.

Progress

My daughter, Michaela, and I have both been on Dr. Xiu-Min Li’s protocol of Traditional Chinese Medicine herbs to assist with calming down the inflammation in our bodies from mast cell activation. We both use the herbs topically only, as neither of us is able to tolerate swallowing the herbs for consecutive days or periods of time. Dr. Li has been especially helpful in assisting each of us to feel better with an herb paste that we put on the bottom of our feet overnight. These specific herbs help with acid reflux and calming the gut. I also use a special cream on my entire body that helps to calm down the mast cells throughout my body – skin, gut, nasal passages, etc.

Dr. Xiu-Min Li of Mount Sinai Medical Center

I’ve been on this protocol for 3 years; Michaela for 1 year. Each of us would love to be able to increase the foods that we are able to eat AND to have no stomach issues. We’re moving in the right direction, which is really wonderful.

Me and Michaela June 2018

Both Michaela and I also see a chiropractor in Denver who specializes in Network Spinal Analysis (NSA). This has helped our energy levels to increase and to balance out energy in our bodies. Mast cell activation can affect sleep patterns and also can affect how energy flows through the nervous system creating pain in the back especially. It’s not unusual for me to have hot flashes and awaken in an anxious state scratching an itch that isn’t prevalent during the day! NSA helps me to get better sleep, and has also helped me to be able to exercise again without extreme pain.

Setbacks

In May of this year I fell on gravel after tripping over a 3 inch lip in a trail. Not only did I cut up my hands and knees, but I also sprained my ankle and pulled muscles in my chest. My entire body went into a nervous overdrive. Within a few hours of the fall, my mast cells began going crazy causing me to feel nauseous and dizzy. I knew a mast cell degranulation was occurring because I’ve experienced it frequently enough in the past. I choked a few bites of food down and took an antihistamine along with extra Ketotifen (a mast cell stabilizer) to begin to calm my body. While it took a good month for me to be able to walk on my ankle, it took only a few days for my mast cells to calm back down. However, for those few days, I was so tired and nauseous it was reminiscent of years ago when I felt like that every day! Now, it was a minor setback. I learned that stress to the body (or to the mind) can have big ramifications for mast cells.

I also wrote about my bee sting that occurred in the summer here, which was also a minor setback. Thankfully, I know to respond quickly to bee stings and to get on Prednisone as soon as possible!

Michaela also experienced a strange reaction during this past summer. She began experiencing what she thought was a mast cell reaction at a house she was staying at taking care of the owner’s dogs. She felt dizzy, nauseous and began having the shakes – classic signs for her of a mast cell reaction. She took Benadryl and an extra Ketotifen, and felt only slightly better. The next day she began getting a terrible cold virus, and chalked up the entire situation to getting sick. After three days, at the end of the job, she returned home and then went to our NSA chiropractor. He immediately asked her how she came into contact with chemicals. He stated that the cold she had was from an overload of chemicals running through her body. He could feel her body’s negative response the minute he began working on her. She called the home owner and found out that they had just had their floors redone! The off gassing from the renovation had created organic compounds to be trapped in the house, and she reacted violently. She has now learned to ask home owners where she will be staying overnight if they’ve had any recent renovations! The good news is that she has learned to ask more questions about her environment when she is staying somewhere other than home.

Mast cells activation issues require constant vigilance and awareness of one’s environment. Injury and chemicals stress the body. Mast cells are only trying to protect, but with an activation disorder they end up hurting the body!

 

Bee Stings and Mast Cell Disorders

There are many people who suffer from a bee sting allergy, and most don’t have any food allergies. Thankfully, so far, neither of my grown children – Morgan and Michaela – have experienced any reaction to the bee stings that they have received.

It’s a different story for me. As a child and into my early 20’s, I received several bee and wasp stings without any issues other than a little discomfort. That all changed in 2006 when I was stung by a wasp on the back of my thigh. That was the beginning of my entire immune system going on “tilt”. I was later diagnosed with a mast cell disorder, which honestly could have been active for years prior to this bee sting. And the reaction to the sting brought my system over a threshold from which it hasn’t yet recovered.

The wasp sting reaction lasted for 3 weeks with hives on my thigh and itching. I didn’t realize then that I should have gone to the doctor and gotten steroids or some other treatment. Foolishly, I toughed it out.

I did tell my allergist at our next visit, and she gave me a prescription for an epinephrine autoinjector because of the severity and length of my reaction. I never experienced any breathing issues, which I’m grateful for. However, as with any type of allergic reaction, you never know what the next one could bring.

This past week, I was stung by a bee while out walking in my neighborhood. I sustained the sting on my left pointer finger right below the knuckle. I pulled out the stinger immediately and headed home to put on ice. I truly didn’t think I’d have a reaction this time since my mast cell disorder is better maintained with antihistamines and mast cell stabilizers, and I’ve never reacted to previous bee stings. Yet, the swelling began the next day.

18 hours after the sting

 

24 hours after the sting

 

36 hours after the sting

By a day and a half after having the sting, my hand looked more like the Incredible Hulk’s than my own! It was itchy, and the swelling was so bad that I had to hold my hand above my head to keep it from throbbing. Again, I had no breathing issues thankfully, but the swelling was getting to the point that I was concerned that the skin on my pointer finger was going to burst.

I set out for my allergist’s office, ended up seeing a Nurse Practitioner since my allergist wasn’t in the office that day. She sadly had no knowledge of mast cell disorders, and thought a few extra antihistamines would do the trick. I had to beg her for a prescription of Prednisone. She acquiesced and said I should take 20mg of Prednisone each day for 5 days and then stop. I’ve never heard of this, with no titrating off of the drug. I asked her about that, and she said it wasn’t a problem. Again, not what should be done for someone with a mast cell disorder!

When I got to the pharmacy, the pharmacist had thankfully noticed that the 20mg tablets of Prednisone contain dye, which I react to, and asked if I’d prefer the 10mg tablets. I was so thankful that he noticed this! He then told me that she had prescribed two 20mg tablets a day for 5 days. So that’s 40mg of Prednisone a day with no titrating off!

I called the Nurse Practitioner and asked about this mixup and what should I be taking? She said the 40mg was fine. At this point, I knew I’d better get in to see a doctor, and went to my family practice doctor to get everything straightened out.

The doctor put me on a short course of Prednisone, starting at 20mg and titrating off over the next 4 days. The drug quickly began to lessen the itching, pain and swelling.

A few reminder lessens learned:

  1. Past reactions to bee stings/wasp stings don’t indicate current reactions.
  2. With any type of serious reaction, see a doctor! And if you have a mast cell disorder, it’s always better to see one who understands the nuances of reactions with mast cell patients.
  3. Make sure to have any type of dye allergies listed at your pharmacy.
  4. Never go off of a steroid suddenly. Always titrate down!

 

 

 

 

Healing Eye & Skin Allergy Issues

Both my son and I had a childhood filled with eczema. For me, it was long before anyone knew that eczema was related to the atopic march of allergies and asthma. For my son, Morgan, we learned various ways to combat his eczema and make him more comfortable, which I have written about here.

Through the years, we’ve learned of many more skin issues that can occur related to mast cell issues and environmental allergies, and have found various products that have really helped both of us.

Morgan frequently had itchy skin, and not always from eczema. When he would play outside in the summertime, when the pollens were high, he would frequently itch afterward. We didn’t want to have to give him Benadryl or cover him with steroid cream each time. We found a product called Sarna which really worked. It was steroid-free and you can purchase the “original” or “sensitive” which is fragrance-free. My daughter says the original “smells like my childhood!” because we applied it to Morgan so frequently.

Morgan also has ocular allergies. Sometimes his eyes got so red and puffy we had to resort prescription eye drops and steroids. We tried to not allow it to get to that extreme by using Zaditor eye drops. These drops have Ketotifen as the active ingredient, which is a mast cell stabilizer. With my daughter and I having a mast cell activation diagnosis, we use these drops frequently during tree pollen season and enjoy great relief.

Colorado winters are extremely dry, and everyone in our family has been in need of more skin moisture this past season. We’ve found Vanicream to be an answer to our alligator skin issues, and to ensure that eczema doesn’t flare. It is naturally fragrance free, and can even be applied to facial skin without clogging pores.

My mast cell issues have created another issue on my facial skin – Rosacea. I will react to most makeups by just getting redder skin. I found the company Rosaceacare years ago, and love it! I use the ZincO cream that includes a sun block on my face. I also love the cleanser and moisturizer.

Kiss Freely has great lip balm that my daughter loves, and their body butter is amazing! It really helps dry skin and is free of all allergens and gluten that have caused us to react previously.

Lastly, I have eyelid issues. Specifically, it’s called blepharitis, and is frequently seen in people with mast cell issues and rosacea. My eyelids get red and swollen and need to be cleaned daily. This is important to keep me from having to ingest oral antibiotics or to be putting antibiotic drops in my eyes frequently. I’ve found a product called HypoChlor can be used on gauze to scrub my eyelids and keep them from becoming inflamed.

One last note – I am not being paid to suggest any of these products. They are what works for us, and I hope that if you have similar skin and eye issues, you might find the suggestions helpful!

 

Traveling to Orlando FL with Mast Cell Issues and Food Allergies

For the first time in 14 years, our family took a week long vacation with just the 4 of us: my husband, me and our two grown children – Morgan (almost 22 years old) and Michaela (27 years old). We headed to Orlando, Florida for a week’s worth of fun and sun in December. With Morgan on the quarter system for college, and Michaela already working, this was an ideal time to vacation during “low season”.

Denver International Airport

We flew Southwest Airlines on a non-stop flight from Denver to Orlando. Southwest has worked great for all of us in the past, and has allowed Morgan to preboard and wipe down his area. Traveling to Florida, we were on a brand new plane which was on its first day of flight, which was wonderful! That flight and the flight home worked perfectly – both were mid-morning flights, so not the first flight of the day, but we’ve never required that as part of our travel plans. When we boarded the flight home, the flight attendant told us that the previous flight also had no peanuts served, which made for a nice, clean plane. But we still wiped down the area where Morgan sat.

Traveling and managing Morgan’s food allergies – peanuts, tree nuts, sesame, fish and shellfish – along with his pet and environmental allergies pales in comparison to managing Michaela’s and my mast cell symptoms. She  and I both eat only organic foods; however, her diet is vegetables and fruits, while I tolerate only a few foods – chicken breast, turkey breast, frozen Cascadian Farms hash browns and broccoli. My husband, Robert, is on the Whole 30 food plan – so cooking for all of us requires a short order chef!

Actually, we don’t ever eat out because of the organic food requirement, and the mast cell issues require much more vigilance than even food allergies. The type of water that I drink can affect my stomach! Unbelievable, but true. And for those of you with mast cell issues, I’m sure you know what I mean. So, braving a family vacation is a big deal. It also requires a lot of patience on each person’s part since each of us has different needs depending upon the situation. We’ve learned to also have activity days and rest days to keep positive attitudes!

We rented an AirBnB house that guaranteed it was pet and smoke free, and had a full kitchen since we would be cooking every meal. We planned ahead by finding out where the local grocery store (Publix) was, and I special ordered from them a week’s worth of the frozen potatoes that I eat. We also found a  Whole Foods for Michaela’s foods, although it was 30 minutes from where we were staying. Morgan and Robert purchased their foods from each of these stores also.

The pool area in the community center where our AirBnB was located.

I didn’t bring the organic ground turkey that I usually eat because I had called ahead to Publix and Whole Foods to ensure that they would carry it – plain with no spices added. However, when we arrived neither actually carried it, despite their reassurances that they did. This created a search across Orlando to find such a product. We finally did find a different brand, but I learned to bring it in the future since it’s so difficult to find elsewhere!

In regard to bringing food, we got a letter from our allergist to allow us to bring food onboard the plane through TSA. This letter was never requested, but we had it just in case it was. Also, the allergist’s letter delineated that we would be bringing frozen food in a cooler and checking it through as baggage. This too worked just fine with Southwest Airlines, and they never requested the doctor’s letter.

We found that the home we stayed in wasn’t well equipped with kitchen supplies, so thankfully I had brought a few frying pans and lids in my luggage. I always bring my own yellow colored spatula so that even my family knows which spatula is mine! I also brought my Instant Pot in my luggage. Since Michaela and I are part of Dr. Li’s private practice of Chinese Herbs for Allergies, Dr. Li has asked that I only eat meat cooked in the Instant Pot to help my stomach heal, and purchasing another one in Orlando didn’t make sense. So we brought a second suitcase with all these kitchen supplies!

All the grocery shopping and driving took us half of the first day in Orlando to set ourselves up. Then the fun began!

We went to the Kennedy Space Center and Cape Canaveral for our first outing. We packed our lunches and left them in a cooler in the car while we visited the Cape. We neglected to call ahead to see if a microwave would be available, and later we were told it wasn’t. In fact, they wouldn’t even allow any outside food in the space center, even with a medical condition from what we were told. So we ate our lunch cold (cold potatoes, broccoli and chicken will fill up the stomach, but doesn’t make a tasty meal!)  in the car. Not the ideal situation, but we enjoyed each other’s company. And with my husband being a space enthusiast, we had a great time seeing all the exhibits.

We headed down to Cocoa Beach that same day. Being from Colorado, getting to see the ocean is a big deal. We enjoyed it thoroughly, especially since it is “low season” and there was hardly anyone else there, despite what we would call hot weather in December – mid-70’s!

Cocoa Beach

The next day, we went to Disney Animal Kingdom. We wanted to especially see the new Pandora – World of Avatar, and to visit the Tree of Life. Michaela and I had to pre-make our meals the night before so that we would just have to heat them in the park. Morgan and Robert were able to bring salads and sandwiches – no heating required!

The Tree of Life in the Center of Disney Animal Kingdom

We searched online and found that they have lockers near the opening gate, which is where we put all of our lunchboxes plus snacks. Thanks to an inquiry on my AllergicChild Facebook page, I found out that the park does have one microwave for the public in the Baby Center area.

The park doesn’t have a lot of air conditioned locations, and with the temperature in the lower 80’s plus the humidity, our daughter began to have heat issues. You may remember me blogging about this issue here when she ended up hospitalized after having two grand mal seizures.

Thankfully, right next to the Baby Center, there was a First Aid office. She was able to get a bag of ice and sit in air conditioning for a little while to cool off. Twice more during the day, she went to First Aid to get more ice. I can’t say enough nice things about the Disney employees in First Aid – they were just magnificent. Each time she would come in, they provided a large plastic baggie of ice, and remembered her name from the first time. They treated her with such kindness, and we were so grateful for that.

Since the lockers we chose were at the park entrance, and the baby center was in the center, Michaela would walk with her plate of food piled high with cauliflower, carrots and squash nibbling until she got to the microwave. Several times, we had people stop us asking where she got her food! Dozens of people in the locker area brought their own food. Disney asked no questions about the coolers or even the water I brought in, which was wonderful.

The day was really long since we stayed for the River of Lights nighttime show, but it was well worth it.

River of Lights Show at Disney Animal Kingdom

We had all walked miles, and with feet hurting, we headed back to our AirBnB ready for bed!

We took a rest day the next day, and Michaela and I headed out to visit a Network Spinal Analysis chiropractor in the Orlando area. These doctors are specifically trained in a type of chiropractic work that involves gentle, precise touch to the spine cuing the brain to create new wellness promoting strategies.

We’ve found that part of the mast cell symptoms is extreme back pain, and all the walking we did the previous day was wreaking havoc on our spines. We found a lovely young woman who had recently opened her practice, and got us aligned and ready to walk the next day at Universal Studios Wizarding World of Harry Potter!

This was the big event that we were most looking forward to.  Universal  also had no issue with us bringing food into the park. And I brought my own water without anyone asking anything about it.

The lockers were once again near the opening gate of the park, however this time the microwave was very close in a “nursing room” in the family center.

We decided to purchase the 2-park pass since Hogsmeade is in one park, and Diagon Alley in another. My husband owns a marketing consulting firm, and he declared that as good marketing! And, of course, much more costly, but well worth it.

The Knight’s Bus in “London”

The weather was much cooler on this day (mid-60’s), and foggy which made for a great day to visit the magical world of London,  feeling it was somewhat realistic to their actual weather.

We next went to Diagon Alley where Morgan got to taste his first Butter Beer.

Tasting Butter Beer for the first time!

Morgan had previously emailed Universal to inquire about whether Butter Beer would be safe for him. He listed his food allergens, and got this response:

Burdick, Bob (NBCUniversal, Orlando) (bob.burdick@universalorlando.com) wrote:

Hi, in Universal Studios, we have fruit stands in the parks with apples, oranges, grapes, watermelon on them. Also have lemon and strawberry slush carts which will be ok, also have turkey legs on carts that are just smoke plain. We have a full service unit it is Lombard’s landing and Finnegan’s, we have a chef in each unit have the server bring the chef to the table and he can go over all the things he can do for you In Islands of Adventure we have 2 full service units one called Confisco’s and one is Mytho’s, we have Chefs in both of those units, have server bring Chef to table and he can go over the things he can do for you, we have another walk up unit it is Thunder Falls, we have smoke chicken, smoke pork ribs, and roasted corn on cob and roasted potatoes with fresh herbs and salt and pepper, also have French fries all natural cooked in soy blend oil that is the only thing cooked in those fryers too.  I will also say no desserts at all from any of the restaurants too. 

We also have three broomsticks which have smoked chicken and smoked pork ribs, roasted corn on cob, baked potatoes, roasted potatoes with onions, garlic, salt and pepper, and fresh herbs and some salads too.  

The butterbeer is nut free, is made in a separate room. Pretzels and popcorn are ok too. The soft serve is ok at florean ice cream shop, not the hard pack ice cream. The restaurants in citywalk will be able to help you with your allergy all units have 4 chefs in them   

If you need any more information or help feel free to give me a call at 321-388-2123, Chef Bob.

We never purchased any food product in the park, but it was lovely to have all this information if we did. There was a lot of fish and chips on the menus in both Diagon Alley and Hogsmeade, but obviously there would have been safe food items if Morgan had wanted to eat.

There were several shops with candies and sweets in them. This is the ingredient label on the back of Chocolate Frogs which states, “Contains Milk and Soy. Allergen information: Shares Equipment With and Produced in a Facility Containing Milk, Egg, Peanuts, Tree Nuts, Wheat and Soy.” We didn’t find one candy that didn’t have this labeling. The candies were great for gifts, but not safe for Morgan to eat.

The Wizarding World overall was superb. If you go, you have to purchase a wand! There is a map of all the locations where the wand will work it’s magic…I’ll leave it at that because that’s part of the fun figuring out how to create the magic!

There were rides and shops throughout both parks, and once again we walked until our feet swelled! We road the train, the Hogwarts Express, in between the two parks.

Mischief Managed!

The next day was a rest day to pack up and get ready to fly home. We realized that we had cooked 21 meals on the 4-burner stove in the Air BnB kitchen, and no one went hungry!

If your family is like ours, and doesn’t or can’t eat out, it’s still possible to have a wonderful vacation and cook every meal yourself. With a lot of pre-planning and preparation, we had the most wonderful, magical vacation!

 

 

 

Mast Cell Disorders and Other Medical Conditions

Through the years I’ve shared our stories of managing food allergies (in our now college age son). Rarely have I shared stories about our adult daughter with celiac disease and mast cell issues. This time, I’m going to share about her recent experience, since there are so many things we learned.

Earlier in July, Michaela got overheated while being outside in the Colorado sun enjoying a festival. She was mostly inside a tent, but since there was no electricity, the air was stale and approaching 100 degrees. She estimates she drank 8 bottles of water during 4 hours of being at the festival trying to keep herself hydrated. She knew that she needed to keep pushing the fluids, even if it activated her interstitial cystitis.  It’s a constant balancing act for her to drink enough to stay hydrated, but not end up in the bathroom every 30 minutes.

She began to feel drained and went back home and drank more water thinking she was still dehydrated. Her first mistake, we learned, was to not drink fluids with electrolytes. With her mast cell disorder centered in her gut, she is very careful to eat only organic foods and pure water. She doesn’t drink Gatorade because of the coloring in it, but there are electrolyte alternatives, we’ve since learned!

A few hours later she began vomiting every few minutes and having diarrhea, and felt thoroughly awful. At that point, I felt she probably needed an IV of saline to help her body get regulated. On a Sunday evening, there wasn’t any choice but to go to the Emergency Room. At the ER, we told them about her mast cell disorder and wondered if she could be triggered by the heat of the day and having a mast cell reaction. The nurse on duty was somewhat aware of mast cell issues, which was nice. They put in an IV, gave her saline, and Zofran (to ease the nausea), and gave her oxygen since her pulseox was low. She still wasn’t feeling great, so they gave her 25 mg of Benadryl with some extra saline so it wouldn’t burn on the way in.

Shortly thereafter, she began saying “I feel so disconnected” over and over again. Then, within a few minutes, she had a grand mal seizure right in front of my husband and me!

We’ve been through a lot of medical issues with our children through the years, but nothing compares to the horror of observing a seizure of this magnitude. It lasted for about 20 seconds, which seemed like 20 years. She was frothing at the mouth, with a horrible guttural sound emanating. Her arms were drawn up to her chin, wrists bent, while her face and chest turned beet red. Her eyes rolled back into her head and she became unconscious. We screamed for help and the medical staff came running and gave her 2 mg of Ativan.

Once the seizure stopped, they took her in for a CT scan of her brain to see if there was something occurring there, and she had another seizure, from what we were told, during the scan and received another 2 mg of Ativan.

Since we were at an Urgent Care Facility that transforms to an ER in the after hours, they needed to get her to a hospital for observation overnight. She was transported by ambulance to St. Francis Hospital, and my husband joined her for the ride while I drove behind in the car. She was completely unable to respond to any commands during the ride to the hospital. My husband said that the EMTs kept talking to her trying to get her to squeeze a hand or say something. There was no sign of any cognition or awareness at that point.

I called our son, Morgan, during my drive to let him know what was occurring. He is in Denver working this summer, and by this point it was 10 pm. He jumped into his car to make the hour drive to the hospital.

By the time I arrived, she was processed into a room. We were told there was nothing on the CT scan that would indicate it was a brain disorder causing the seizure. The hospital doctor thought that it was too much water, and not enough electrolytes since her sodium count was at 126. (Her normal sodium count is 140 from previous blood tests).

Morgan arrived by 11:30 pm and walked into the room, got really close to Michaela’s face and called out her name. It was the first sign of any recognition or response when she mumbled “back hurts” and then a tear rolled down her cheek when he was talking with her.

She slowly was able to respond to commands, but was completely confused as to where she was and why. We would go through the entire story, and 15 minutes later, she would ask again, “Where am I?” It was frightening, and we worked on not jumping to conclusions.

My husband remained in the hospital overnight with her, while Morgan and I went home to catch a few hours of sleep. All night she was writhing in back pain as the doctor and nurses tried to figure out why. They took an x-ray, which showed nothing broken in her back, and they summarized it as muscle spasms from the seizures.

The next day Michaela was sent home with instructions to do a follow up with a neurologist and her primary care doctor. The chest x-ray showed no issues of aspiration, so we felt she’d do better at home getting some sleep. She had virtually no short term memory though. We were frightened that there was a serious cognitive issue occurring, and spent a lot of time Googling seizure side effects and the aftermath.

Within 24 hours of her release, she was running a 103 temperature, and back to the emergency room we went – this time to the ER attached to St. Francis hospital. The ER doctor was concerned about meningitis, so a spinal tap was ordered in the ER. It thankfully showed negative. Then the chest x-ray came back and showed that she had aspiration pneumonia. She was hooked up to an IV for saline, and put back on oxygen because her oxygen percentage was plummeting into the low 80’s.

There wasn’t one doctor or nurse who was aware of mast cell activation disorders, so we were explaining over and over again what medicine to give her and what not to give her. Thankfully, each person was receptive enough to listen and to learn.

She was put into the hospital overnight again. She began receiving IV antibiotics immediately. She cannot tolerate Tylenol or any NSAIDS (NSAIDS are a mast cell degranulator and not recommended for those with mast cell issues). Therefore, the nurses brought cool cloths and ice packs to bring her temperature down.

Her back pain was still horrific, so she was started on an IV pump of Fentanyl, the only pain medication suggested for mast cell patients, other than Tramadol. That began to help the pain subside, and to allow her to rest.

The neurological tests were ordered while she was in the hospital. She had an MRI and an EEG of the brain. Nothing appeared to be abnormal, which was an incredible gift. The short term memory loss, we were told, was a normal by product of the seizures and should get better over time.

An MRI of her lumbar spine showed two bulging disks, which were the source of all her back pain. It was postulated that the seizure caused these, which is amazing that the body can hurt itself so badly!

2017-07-13 20.18.40

Since Michaela owns a pet sitting and dog walking business, she was trying to keep up with everything while in the hospital. The short term memory loss made for some interesting issues as I tried to work her phone and to ensure all the dogs, cats, and pet sitters were taken care of! At one point, I had to ban her from being on the phone unless I was there to ensure she didn’t schedule something and then forget!

While she was in the hospital, my husband and I were running home to cook her safe foods to eat and then transporting them to her room. There was nothing on the hospital menu that was organic. And the hospital had no refrigeration that we could use, so we were bringing coolers from home or getting ice from the nurse’s station and adding it to mini tubs in the room to keep her food refrigerated.

It was a very long week. By Friday, we were both so exhausted from tag teaming. I slept in the hospital for 3 nights (if you’d call 3 hours of interrupted sleep really sleeping!) and then went home for a short nap. After that I monitored her pet sitters and her business during the day. My husband slept at home and then cooked safe food for her. He worked from her bedside during the day, and continued to train doctors, nurses and CNA’s about mast cell issues and celiac disease.

The infectious disease doctor wanted to release her with oral antibiotics since she’d had 3 days of IV antibiotics by the time she was being discharged. We nixed that idea since she has had so many gut issues with antibiotics, and were thrilled that she was tolerating the medication as well as she was. The doctor agreed to have a PICC (peripherally inserted central catheter) inserted into her arm to her heart, and to have her Dad and I taught by a home healthcare nurse how to administer the antibiotic every 6 hours around the clock for another 5 days.

In the almost 4 days she was in the hospital on the second round, we ran into only one CNA who had heard of mast cell activation. She had just taken a biochemistry class in school where it had been discussed. There were so many conversations where we had to explain what could occur if she was triggered by, for example, contrast dye in an MRI. There is so much need for the medical community to be trained on Mast Cell Activation!

Once home, we began the around the clock antibiotic administration. It was almost like a feeding schedule of a newborn baby.

After being on antibiotics for a few days at home, she began to experience burning mouth – a sign of oral thrush. We then added Fluconazole to her list of drugs administered through her PICC line.

When she visited her primary care doctor, as a follow up to the hospital visit, he thought that the heat had triggered a mast cell “event” creating the massive purge of vomiting and diarrhea that she experienced. On top of that, her not drinking electrolyte water created a sodium imbalance. The two issues combined to drop her sodium suddenly, creating the seizure. That was his best guess as to the cause of the seizures. We may never know for sure. However, we’re very grateful that it doesn’t appear to be anything related to her brain function.

She visited a wonderful chiropractor that has helped to re-align her back so that the 2 bulging disks are slowly dissipating.

With mast cell issues, and the various autoimmune diagnoses that she has, keeping her body in balance is a daily struggle. She has learned that she’s going to have to be FAR more careful about being in high temperatures and getting overheated. She’s also discovering many electrolyte drinks to enjoy.

It’s amazing what the body can go through, and that it can heal! We so appreciate all the love and prayers you have provided to her and to our family through this harrowing episode.

Healing through Traditional Chinese Medicine for EoE/Mast Cell Diagnosis

I have been a patient in Dr. Xiu-Min Li’s private practice for about a year now, and it was time for me to meet her in person. We have been having once a month telephone appointments. Meeting Dr. Li in person was like meeting a rock star! She and I hugged each other like long lost friends, having spoken on the phone for a year.

I have written about Traditional Chinese Medicine (TCM) before, and you can read that blog post here.

Most of Dr Li’s patients travel to New York City to meet with her before they start treatment. However, it is VERY difficult for me to travel, and being an adult, she was willing to consult with me after receiving a battery of blood tests and endoscopy results for my eosinophilic esophagitis and mast cell disorder diagnoses. I also have IgE allergies to several foods – peanuts, onions and corn.

Because of these diagnoses, and gut issues every time I try a new food, I am currently eating just 4 foods: organic chicken breast, organic turkey breast, organic broccoli and Cascadian Farms organic hash browns. (For some reason, those potatoes, having been parboiled to perfection, work for me while homemade hash browns parboiled do not.) Mast cells and eosinophils are crazy!

When I travel I must either bring these foods or be able to purchase them. And because all of these foods are low in calories, I eat 6 times a day, about 2 hours apart. I have to cook all the foods for my stomach to tolerate them – not that I would be eating raw chicken! But even raw broccoli doesn’t work for me currently.

My recent trip to meet Dr. Li felt like a big accomplishment. I was able to stay with a fellow food allergy Mom, and to use her kitchen to cook all my meals. I ordered my food from FreshDirect and had it delivered to her apartment prior to my arrival. What a wonderful service that is in New York City! And what a wonderful friend I have to put up with me cooking non-stop!!

As far as the Traditional Chinese Medicine that I’ve been taking – I’ve been on a cream IIIvb, which looks like avocado dip, and I apply it once a day, every day. I’ve recently begun an herbal foot bath, which is all that I can tolerate currently. Most of Dr. Li’s patients use herbs in a “real” bathtub, however I am currently too sensitive for that. The combination of these two treatments, which permeate the largest organ – the skin – have begun to decrease my body’s sensitivities. I have yet to begin to swallow any TCM treatments. Again, most patients are able to start with this, but my system is still in need of healing more before I will be able to swallow any teas or pills. Dr. Li’s protocol is not something that I could manage myself, and I couldn’t go to a local store to purchase the herbs. I feel very grateful that I have a doctor, with such knowledge, managing my care.

I realized how much better I’m doing when I was asked by Dr. Li to rate my improvement. I’m far less reactive to smells and contact with the environment. I have much more energy. (That’s the real issue with mast cell degranulation for me – it zaps my energy). And I’m far less anxious. I really want to eat different foods, and Dr. Li thinks that’s in my not-too-distant future. She wants to try some Chinese vegetables because it’s something I haven’t ever eaten, so hopefully my mast cells won’t recognize the food as an invader!

For me, TCM is more about how I feel than any blood test result. We aren’t trying to cure any food allergy. I’m willing to not eat a few foods that I’m allergic to…I’d like to be able to eat all those other foods that currently I can’t tolerate because of the mast cell/EoE issues!

Dr. Li suggested that I purchase a pressure cooker to cook the meats that I eat to make them more easily digested. Upon returning home, I immediately purchased an “Instant Pot”. What a wonderful little device! I can cook my chicken in 15 minutes, while my potatoes are cooking on the stove. This allows me to always eat fresh, and to cease microwaving foods to reheat them, which Dr. Li wants me to quit doing – “as much as possible in our busy lives”. She’s always so patient and kind!

instant-pot

I’m continuing to increase the amount of cream that I apply, and to increase the amount of herbs in my daily foot bath. It’s so exciting to feel healing occur in my body.

The various medications that I’ve been on – Ursodiol, Zyrtec, Zantac and Ketotifen – only mitigate symptoms. They do nothing toward a true cure or healing. I’m grateful to have them, and I’ve been able to decrease the amount of medication that I take daily since starting on the TCM protocol.

The future looks very bright!

 

 

 

 

Traditional Chinese Medicine: The “Cure” for Food Allergies?

If you haven’t heard of Traditional Chinese Medicine, you’re in for a treat! And if you have, you know that Henry is the author of “Food Allergies: Traditional Chinese Medicine, Western Science, and the Search for a Cure”. Henry graciously offered to answer a few questions about this treatment option for eczema, food allergies, mast cells and even Eosinophilic Esophagitis!

Chinese herbs

Henry, what made you interested in writing a book about Dr. Xiu-Min Li’s research regarding Traditional Chinese Medicine (TCM) and her search for a cure for food allergies?

First of all, Nicole, thanks for giving me this opportunity to communicate with your readers. I hope they will find it informative.

The six most obnoxious words in the English language are “as I say in my book” so at the expense of stealing my own thunder…. I met Dr. Li when I went up to her office at Mount Sinai at the suggestion of my cousin and co-author of an earlier book, Dr. Paul Ehrlich, a prominent pediatric allergist. We also had a new website, AsthmaAllergiesChildren.com,  and he told me, “I have been practicing for over 30 years and this is the first thing that sounds new and hopeful to me.” So I met Dr. Li. When she showed me photographs of the dramatic changes her therapy had made on really bad atopic dermatitis, I knew something was up. I mean, these were bleeding, sores on the feet of a ten-year-old girl. Within a few months, the skin was clear and she was painting her nails. I have a daughter. That means something to me.

How is Oral Immunotherapy (OIT) different from TCM?

OIT, like all immunotherapy, works by essentially over-stimulating the part of the immune system that produces allergic antibodies—allergen-specific IgE—by feeding progressively larger doses of the allergen until it can’t keep up with demand, allowing the part that produces tolerogenic antibodies—IgG—to gain the upper hand. Instead of allergen-specific IgE occupying the receptors on mast cells and basophils, IgG starts to occupy them instead. Allergens that once triggered reactions by connecting with IgE on those cells are rendered harmless.

Traditional Chinese medicine as practiced by Dr. Li works on modulating the immune system. There are two kinds of helper cells involved, Th1, which helps fight infections, and Th2, which is associated with allergies. In a normal immune system, IgE is a tiny fraction of IgG. But for various reasons, Th2 and IgE gain a disproportionate share of immune response. Dr. Li’s therapies restore Th1 and Th2 to their natural equilibrium. Oh, and one thing I have to stress is that Dr. Li also treats digestion so that the gut has a better chance of breaking down allergenic proteins before they can be absorbed into the blood stream and find their way to different parts of the body.

Let me add that immunotherapy and TCM are not competitive or mutually exclusive. TCM patients are also receiving OIT, just as they are receiving shots and sub-lingual immunotherapy. There’s no single therapy that will help every patient in the long run.

How long has Traditional Chinese Medicine (TCM) been used by Dr. Li to treat patients for food allergies?

Her private, independent clinic got started to treat recalcitrant eczema while she did more conventional research in her “day job”. However, in the mid-1990s, food allergy mothers she met at a fundraiser for the Jaffe Food Allergy Institute, where she was doing research, upon hearing of her success with eczema, told her their kids’ stories and she was so moved she set out trying to find ways to help, backed by Dr. Hugh Sampson, her boss. It was a very bold move. Dr. Li was trained in both western medicine and TCM. She looked to the classical TCM formulary for answers, and started to find them, starting with a treatment for intestinal parasites. It is important for your readers to understand that while Dr. Li is following all the NIH protocols for her investigational drugs, she is also allowed to use versions of these medicines as supplements in her clinic.

Is she working on having fewer pills to take/teas to drink as part of her protocol?

Yes, Nicole. One of the problems with these treatments is that because they are derived from plants, therapeutic doses require lots and lots for prolonged periods. Compliance is a challenge for all of us, whether we have diabetes, asthma, or even just take a low-dose aspirin (as I’m supposed to do—don’t tell my doctor). Dr. Li works with her own lab and scientists in China to refine the medicines and reduce the burden on patients. Her food allergy herbal formula-2 had a dosage of 10 pills, three times a day for a phase-2 trial. Lots of subjects had trouble. The next trial will use B-FAHF-2–refined with butanol, a form of alcohol—that will take the dose down to six or eight pills a day total. Much easier.

Have there been any patients on TCM long enough to say that their immune system has been remodeled, and they are no longer allergic to foods?

Yes there have, although most of her patients have complex co-morbidities—and it’s a work in progress for many of them. I suggest your readers also check out an article published last year in a Canadian journal about three cases of frequent severe food anaphylaxis to see how dramatic the changes can be.

In a video at last year’s Food Allergy Bloggers Conference, you and Dr. Li were interviewed for a podcast. Dr. Li mentioned using TCM for patients with Mast Cell Activation Disorder (MCAD). Has she had any success with patients with this condition?

In the new book that Dr. Li and I have co-written, there is case of this, also called mast cell activation syndrome. Just so you know, MCAD or MCAS for mast cell activation syndrome is disease in which mast cell degranulation is triggered by all kinds of things, from foods, to exercise, to heat…really lots of things. It didn’t even have a name till 2010 or a practice parameter till 2011. It can be IgE mediated or not. We have one whole chapter in our book devoted to one case of a girl of 14 who suffered for 5 years without a diagnosis even, and almost died. Dr. Anne Maitland, a colleague of Dr. Li’s, is gaining a reputation as an MCAS specialist, and the two of them are doing great work. The case we write about it the book will tug your heart strings.

What about children with Eosinophilic Esophagitis (EoE) – are they able to tolerate the herbs? Have any children been ‘cured’ of their EoE?

The short answers are “yes” and “yes”. In my first book I have a case of a boy who was successfully treated, and according to his mother now has the enviable position of being able to eat pizza every day with his friends. Before he couldn’t tolerate dairy.

Let me add a key point here—all Dr. Li’s treatments are highly individualized. You don’t go in and get the food allergy pill, or the asthma pill, or the EoE pill. You get a combination of things that help with the multiple organ systems that are involved. The herbs overlap, and so do their effects.

And one more critical point: Dr. Li is a full-time scientist and a part-time healer. The scope and ambition of her research is breathtaking. Her chemists and biologists love working for her. A month doesn’t go by when I don’t hear about something new emanating from her lab or suggested by researchers elsewhere who have been following her work.

Tell us about the new book you are writing – when should we expect it? What’s the topic?

Think The Godfather and The Godfather Part 2, where the sequel is as good as the original. This book updates the food allergy research from the last book but also goes into greater detail on ASHMI—anti-asthma herbal medical intervention, which I only wrote about briefly the last time. But it’s huge for people with this condition. It also goes into the atopic dermatitis treatment at length, Crohn’s Disease, MCAS, and some other things. I wrote the first one the way I did because I was learning the science on the fly, but this story is much bigger than any single allergic disease. Dr. Li is getting an award next year from the Future of Health Technology Institute, which is normally very high-tech and where the people obviously see this as very important for the way we understand and treat disease. The new book will be out some time in 2016. After writing two books in three years, don’t expect a third one any time soon, although I know if there is it will be better than Godfather Part 3.

(For more information about Dr. Li’s practice, see liintegrativehealth.com.)

For more information, please also see Henry’s book, Asthma Allergies Children: A Parent’s Guide and the Facebook page, Chinese Herbs for Allergies

Henry Ehrlich is the editor of asthmaallergieschildren.com and co-author of Asthma Allergies Children: a parent’s guide and half a dozen other books. He was a long-time professional speechwriter, with three grown children and one granddaughter.

Henry (3)

Henry at the 2014 Food Allergy Bloggers Conference speaking about Chinese Herbs for Allergies along with Dr. Li.

 

Asthma of the Gut aka Eosinophilic Esophagitis

Most of you reading this blog are probably familiar with asthma – the ‘regular’ asthma that is in the lungs, causing mucous production, coughing and wheezing. Asthma is a serious illness causing NINE deaths per day in the USA. For some people, it’s very hard to get it managed properly. For others, a cocktail of inhalers, bronchodilators and nebulizers are needed.

Now, imagine if you had asthma in your gut!

“Asthma of the Gut” is the best description I’ve heard yet to explain Eosinophilic Esophagitis (EoE). Gastrointestinal doctors are now using this term regularly to explain this debilitating condition.

EoE

What is EoE? According to APFED (American Partnership for Eosinophilic Disorders) it is: “an allergic inflammatory disease characterized by elevated eosinophils in the esophagus. EoE is a newly recognized disease that over the past decade has been increasingly diagnosed in children and adults.” APFED has more detailed information about EoE which you can read here.  There may be a genetic link in some families, and environmental allergies may also be a component.

According to AAAAI (American Academy of Allergy Asthma & Immunology) : “In EoE, large numbers of white blood cells called eosinophils are found in the tissue of the esophagus. Normally there are no eosinophils in the esophagus. EoE can occur at any age and most commonly occurs in Caucasian males. The symptoms of EoE vary with age. In infants and toddlers, you may notice that they refuse their food or are not growing properly. School-age children often have recurring abdominal pain, trouble swallowing or vomiting. Teenagers and adults most often have difficulty swallowing. The esophagus can narrow to the point that food gets stuck. This is called food impaction and is a medical emergency.”

Diagnosis of EoE

The diagnosis of EoE can be tricky since it can mimic other illnesses, such as gastroesophageal reflux disease (GERD), celiac disease, parasitic infection, Crohn’s or colitis. In general, if you have the symptoms discussed above, an endoscopy is going to be performed, where esophageal biopsies will be obtained. If you (or your child) have at least 15 eosinophils in at least 1 high-power microscopy field, then you are likely to receive the diagnosis of EoE.

Mast Cell Involvement/Treatments

I haven’t heard of specific research on this; however, I want to mention some anecdotal evidence that I have. Almost every parent of a food allergic child that tells me that their child is inhalant allergic to a food has later been found to have EoE. I’ve had two GI doctors tell me that if eosinophils are elevated in a person, then mast cells are also elevated. When mast cells are elevated, a person is much more sensitive to their environment, and more likely to react to even the smallest exposure of an allergen.

It takes a special lab staining technique to check for mast cells in the gut, and most GI doctors in the USA aren’t using this stain. Therefore, if the doctor checks for mast cell involvement, too many times they erroneously think there isn’t a mast cell increase. Yet, both my daughter and I have later had the Alcian Blue 3 staining completed on our biopsies and found that our mast cells were extremely high!

In adults, GI doctors are regularly prescribing mast cell stabilizers (such as Ketotifen or Gastrocrom) for their patients with eosinophilic disorders. Yet children with EoE are commonly not receiving these medications. According to AAAAI, “Glucocorticosteroids, which control inflammation, are the most helpful medications for treating EoE. Swallowing small doses of corticosteroids is the most common treatment. Different forms of swallowed corticosteroids are available. At first, higher doses may be needed to control the inflammation but they are linked with a greater risk of side effects.

Proton pump inhibitors, which control the amount of acid produced, have also been used to help diagnose and treat EoE. Some patients respond well to proton pump inhibitors and have a large decrease in the number of eosinophils and inflammation when a follow up endoscopy and biopsy is done. However, proton pump inhibitors can also improve EoE symptoms without making the inflammation any better.”

Elimination diets and/or elemental diets (amino acid formula) are other treatments for EoE. Yet even those don’t work well for some people.

You may have read about a family who chose a wildly different treatment for their son when none of the standard treatments worked. You can read what Gerson Therapy did for this little boy here.

Eosinophilic Gastrointestinal Diseases (EGID)

According to APFED, “Eosinophilic esophagitis (EoE) is far more common than the eosinophilic gastrointestinal disorders that affect the rest of the GI tract. ”

I am that rare bird! I have a diagnosis of  eosinophilic involvement throughout my gut – stomach and intestines in addition to esophagus – my diagnosis is Eosinophilic Gastroenteritis, which my doctor said is equivalent to the evil twin: Mastocytic Enterocolitis.

All of these terms just sound so much easier as “Asthma of the Gut”.

In the case of the gut, where 75% of the immune system resides, there is certainly a need for some mast cells to fight off parasite or bacterial infections. However, eosinophilic disorders create a gut with an abnormally high amount of eosinophils (and mast cells) in the esophagus,  stomach, duodenum, intestines and colon. Inflammation occurs, and the lining of the gut is damaged creating malabsorption. It is a dangerous cycle to get into.

What are the symptoms of EGIDs?

Healing EGID

Because there is virtually no research on EGIDs – there are so few people to study – I’ve taken on my own recovery. I do eat a very limited, organic diet currently to help my gut heal. I take several medications to manage my mast cells and eosinophils (Budesonide, Zyrtec, Zantac, Ursodiol and Ketotifen). My gut is healing enough now to slowly decrease my Budesonide!

The biggest healing force I’ve found is meditation. If I envision my gut healing, on a daily basis, I’ve found that my intention is stronger than any illness!

 

Food Allergies, Mast Cells & Hitting Your Threshold

Food Allergies, Eosinophilic Esophagitis (EoE), Autism, Asthma, Celiac Disease and Eczema all have mast cell issues in common. There is a huge need for research into food allergy and its relationship with these other diseases. You have probably heard of most of these diagnoses except for maybe a new diagnosis called Mast Cell Disorder.

My daughter’s and my diagnosis with a Mast Cell Disorder has led me to do some research into mast cell disorders and how they relate to these other diseases, especially since my daughter also has tree pollen allergies, celiac disease and ADHD; I have EoE, environmental and other severe food allergies; and my son has a diagnosis of multiple life threatening food allergies, eczema, environmental allergies and asthma. I believe there’s a huge opportunity to find a cure for these diseases by combining research efforts.

I’ve heard from so many families who have one child with celiac disease and one with food allergies; or some other combination of the issues above that there seems to be a link between these conditions. And as far as I know, no research has been done to look at a ‘main cause’ of all these diagnoses. Yet, all are on the rise in our children.

Additionally, with the Oral Immunotherapy (OIT) and Sublingual Immunotherapy (SLIT) research that’s currently being done in an attempt to find a cure for food allergies, it concerns me greatly that children participating in a research study may not be aware that they might be trading one disease for another. They may be getting rid of their food allergies, and end up being diagnosed with EoE or a mast cell disorder somewhere in their future.

In fact, some children have to cease participation in a research study because of a diagnosis with EoE, that later resolved after ending peanut desensitization. Research on milk OIT was reported at the recent AAAAI meeting where patients were found to become more reactive to milk after three to five years of desensitization. I’m wondering if this is because a threshold has been reached where their immune system has gone into a constant state of reaction – another way of explaining a mast cell disorder.

So much isn’t known about how the immune system functions, and approximately 75% of our immune system is in our gut. It’s quite a gamble in an attempt to find a cure for food allergies!

The Allergic Response

I’m not a medical doctor nor an allergist, but this is what I understand occurs in our body when the body senses an invader, or foreign substance, and the immune system is triggered. An allergy is an overcompensation of the body’s immune system when confronted with the protein of a food, a drug (such as penicillin), a bee sting or an airborne pollen that the body views as an invader. The body releases an overload of histamines in response to the attacker substance, which can create symptoms such as a runny nose all the way to the extreme of anaphylaxis.

The immune system normally protects the body from harmful items such as bacteria or viruses. In the case of allergies, the immune system has a hypersensitivity or an allergic reaction. During an exposure to an allergen, B cells are alerted and turned into plasma cells which produce IgE (immunoglobulin E) antibodies to fight the “invader.” These antibodies travel through the body until they come into contact with the immune cells called mast cells.

mast cell

Mast cells are present in the skin, respiratory system and the gut and are important to keep us healthy by fighting off  viruses, etc. The antibodies attach themselves to the mast cells via a receptor on the surface and remain attached. That way the next time the immune system meets up with the same invader, the system is primed to react again.

Eosinophils are white blood cells that are one of the immune system components responsible for combating parasites and certain infections. IgE, mast cells, basophils, and eosinophils are essential components of allergic inflammation. Mast cells are tissue resident cells and uniquely required for immediate hypersensitivity. Basophils are largely circulating cells, but home to areas of allergic inflammation during the late phase response. Eosinophils are resident to the GI tract, but also home to allergic inflammatory sites.

Patients with EoE have a high level of white blood cells, or eosinophils, in their esophagus. Research has shown the relationship between high eosinophils and high mast cells.  Dr. T. C. Theoharides of Tufts University has found that children with autism have high mast cells, which he postulates causes the severe form of “brain fog” that these patients experience. The brain-blood barrier is compromised and affected by high mast cells. Research has found that patients with untreated Celiac disease have depressed levels of mast cells, as do patients with eczema in different recent research.

Patients with mast cell disorders may or may not have true IgE food allergies; however most of these patients are triggered by high histamine foods. Many are triggered by pollen allergies, and/or certain drugs that increase mast cells. Some, like myself, are so sensitive that food dyes in medications can cause a reaction. It’s interesting that all of these conditions involve mast cells not being “normal.”

A Little History

Since my diagnosis of a mast cell disorder in 2010, I realized how long I have suffered from other allergic issues. I had severe environmental and pollen allergies as a child; got diagnosed with several food allergies in 1993, three years after my daughter was born; and continued to have more and more stomach aches after my son was born in 1996. I got stung by a wasp in 2006, which put my body ‘over the threshold.’

It took 4 years before I got a diagnosis of a Mast Cell Disorder from Dr. Philip Miner, a gastroenterologist with the Oklahoma Foundation for Digestive Research in Oklahoma City, OK. I later found out that Dr. Miner has been researching mast cell disorders since 1988, and only recently has his work been incorporated into medical literature. More and more patients are being diagnosed with mast cell disorders since Dr. Miner has developed the various criteria to review. There are only a few research centers in the USA that have knowledge about mast cell disorders. You can find a listing of these here. Dr. Miner has trained several of these physicians. He is the ultimate researcher, and tells his patients to ‘never give up hope’ that he can help you feel better.

Mast Cell Disorders

You may have heard of systemic mastocytosis or urticaria pigmentosa (also called cutaneous mastocytosis); however Dr. Miner found that there is a spectrum of mast cell disorders that don’t necessarily biopsy in the bone marrow or the skin. One can have a pooling of mast cells in any organ, and my daughter and I have such a pooling in our gut. Patients diagnosed with systemic mastocytosis or urticaria pigmentosa also frequently have stomach aches, since the high mast cell count is not only in their bone marrow or skin, but also frequently found in their stomach.

I’ve learned from Dr. Miner that those of us with mast cell issues have a threshold over which we begin to react. This is true with most of the allergic issues. A high pollen day along with a virus can send your child’s immune system over the edge to where they break out in hives for no apparent reason. Yet what’s really going on is an onslaught of mast cell activity that has made it appear that your child can no longer tolerate certain foods, for example. Or it appears they are having inhalant reactions; or suffering from stomach aches during the Spring and Fall when pollen season is high. Too many mast cells in the body react, and the child goes over a threshold, and begins to react to virtually everything.

The high mast cells in our gut affect the mucosal barrier in our stomach and intestines leading us to ‘leaky gut’ syndrome. This allows even more food proteins to pass into our blood stream causing more food allergies and more reactive issues. My daughter’s leaky gut was exacerbated/created by her celiac disease which she had for 10 years prior to a diagnosis.

The immune system threshold may be reached by a virus, a fragrance, pollen in the air, a drug or a high histamine food. If a patient with a mast cell disorder is skin prick tested or blood tested for an allergy, there may not be a true IgE allergy to the “invader.” The mast cells are just twitchy and ready to react to anything and everything. These reactions can be in the form of hives, stomach aches or life threatening anaphylaxis.

Patients with mast cell issues may be diagnosed with celiac disease yet find their stomach aches continue even on a gluten-free diet. Or the patient may be diagnosed with Irritable Bowel Syndrome, without any biopsy completed to check for high mast cells in the stomach or intestines. Information about mast cell issues is not in abundance on the Internet. Some information about Mast Cell Disease can be found at www.tmsforacure.org and emergency care can be found here.

Published research can be found here. Most of this information is about the systemic form of the disease.

Mast Cells, Histamines, Drugs and Foods

If you believe that you and/or your child is having some mast cell issues and going ‘over the threshold’ on a regular basis, what can you do? Dr. Miner has stated that there are 7 deadly sins for mast cell patients to eat: beef, pork, onions, tomatoes, wheat, oranges, and chocolate. These foods are all high in histamine and his research has shown that mast cell patients can clear up a lot of stomach issues by ceasing to eat these foods. If your child is suddenly “over their threshold” and seemingly reacting to everything, try removing these foods from their diet and see if their system calms down.

Additionally, bananas hold histamine in the body. You may not have an allergy to them, but can still experience symptoms, like hives, if you eat them.

My daughter and I are currently on a very limited diet of foods to try to calm down our mast cell activity. We eat completely organic currently and it’s working! We never had to go on a feeding tube (which many mast cell patients have to do to give their gut a rest), for which we are very grateful. It’s really hard to eat very few foods every day diligently. But constant stomach aches and hives are no fun, so there’s a lot of willingness that we both have to feel better.

If you remove preservatives, GMOs, food dyes and packaged foods from your child’s diet – even if you don’t go completely organic – you might find that your child begins to feel better. That has been our experience.

There are certain drugs that also increase mast cell degranulation. They are:

Aspirin
NSAID’s (Ibuprofen, Motrin, Aleve)
Morphine
Iodine
d-tubocurarine (used in anesthesia)
polymixins (in over the counter bacitracin)
decamethonium
alcohol (if it makes symptoms worse)
Taking even one Ibuprofen pill can affect my stomach. I’ve learned a lot of other ways to get pain relief for muscle aches!

Mast Cell Drug Regimen

There is a drug regimen that is necessary to stabilize the mast cell. Zyrtec and Zantac are used for H1 and H2 histamine blockers. Additionally, to stabilize the mast cell, Gastrocrom (Cromolyn Sodium) is often prescribed, but neither my daughter nor I could tolerate this. Instead, we are on Ketotifen in pill form, which we obtain from a compounding pharmacy since it isn’t formally FDA approved in the USA. Patients may also benefit from Budesonide, a corticosteroid, especially if EoE is also diagnosed.

For those of you with children diagnosed with EoE, you probably notice that many of these drugs are also prescribed to manage Eosinophilic Esophagitis.

In order for mast cell patients to get better, their food, drugs and environment all need to be managed. If a patient is constantly ‘bumping up’ to their threshold, the immune system is constantly firing. And likely they are miserable with stomach aches, nausea, hives, nasal congestion, etc. Eating a low histamine diet, taking all prescribed medications, and watching for individual triggers are necessary to begin the long road to feeling better.

Mast cell disorders are a chronic disorder, and one that will not be outgrown. A patient can go into remission, but it’s very difficult to get to that point if you have been suffering for years with a high mast cell count. It can take months and even years for mast cells in the gut to normalize.

Food Allergy Research & Mast Cells

I have read a lot about the research utilizing Oral Immunotherapy (OIT) and Sublingual Immunotherapy (SLIT) for a cure to food allergies. These desensitization protocols concern me greatly because of the mast cell involvement with food allergies. I’ve yet to see one research study wherein patients are first put through a biopsy of their esophagus, stomach and intestines to get a baseline of their mast cell count at the onset of the study. In my mind, this would give researchers a better idea of which patients are more likely to go over their threshold if their gut mast cell count is already high. I have queried this idea with a leading food allergy research doctor in the USA. His response was that it’s so difficult to get patients to enter into research trials, that asking for a child to have an endoscopy would likely have more parents decline to participate.

Ingesting small amounts of allergens is certain to increase the mast cell count in the gut, and the result could be mast cell issues in years to come. We just don’t have enough research to know what is going to happen to these study participants 10 or 20 years down the road. I say this because of the history of what has happened to me. A child with multiple food allergies may not be able to eat 4 or 5 foods. An adult with a mast cell disorder may only be able to eat 4 or 5 foods!

I receive dozens of emails from families whose children have been diagnosed with EoE, yet most have never heard of a possible mast cell involvement with their child’s EoE. Some GI docs are doing biopsies for mast cells in addition to eosinophils, yet they aren’t using the Alcian Blue 3 stain, which is the only staining that effectively picks up the true level of mast cells according to Dr. Miner. So the GI doc isn’t getting the correct information to properly diagnose the problem.

I’ve also had many discussions with parents who believe that their children have an inhalant allergy to a food. They tell me these stories that are heart wrenching about their children suddenly reacting to peanuts on someone’s breath or something similar. The reactions are frequently quite severe. Inevitably, years down the road I hear from the parent that the child has been diagnosed with EoE. This makes sense in light of the mast cell involvement. If a child has a diagnosed food allergy to peanuts, for example, that may be only part of the story. The child may also have a high mast cell count that manifests into a diagnosis of EoE. Wouldn’t it be nice if the allergist who hears a story of a child having inhalant food reactions could/would send the child to a GI doc for a mast cell disorder check up?

I wish there was more shared research on these various disorders so that children wouldn’t have to suffer needlessly without a proper diagnosis. There is still so much to learn, but I hope that my diagnosis with a mast cell disorder might help others who are suffering recognize some similar symptoms and get help!

I wish that we knew more about the workings of the immune system so that not only could we find a cure for food allergies, but also a cure for EoE, mast cell disorders, autism – the list goes on and on.

I wish that the research of all these conditions were more easily shared with all the various doctors (allergists, pediatricians, GI docs) so that patients didn’t suffer for years before getting a diagnosis.

In the meantime, our family is going to be cautious about what we eat to ensure that we do our part to cease adding diagnoses to our long list!

Read my daughter’s story of mast cell issues here.

You can also read all of the mast cell & Eosinophil blog posts here.