MCAS Diagnosis – Now What?
Some patients with MCAS have other conditions that can occur along with MCAS such as Celiac Disease, Lyme disease, POTS (Postural orthostatic tachycardia syndrome), EDS (Ehlers-Danlos syndrome), dysautonomia, hypothyroidism, interstitial cystitis, etc. Some of you reading this may have some or all of these diagnoses and conditions, or suspect that you do. If this is the case, you will want to seek out more and possibly different doctors with specialties in these areas. There are several organizations that are online pertaining to each of these conditions that can suggest doctors with specific specialties to visit, if not specifically named doctors who treat patients with these conditions.
Getting MCAS better managed will certainly help with any other conditions you may be experiencing. Food management is one of the key items that needs your focus.
Managing Your Food
Patients with mast cell disorders may or may not have true IgE food allergies; however, many patients are triggered by high histamine foods. Some are triggered by pollen allergies, and/or certain drugs that increase mast cells. Some, like myself, are so sensitive that food dyes in foods or medications can cause a reaction.
If you believe that you are having some mast cell issues and going ‘over the threshold’ on a regular basis, what can you do? It was suggested to me by Dr. M that there are 7 deadly food sins for mast cell patients to avoid: beef, pork, onions, tomatoes, wheat, oranges, and chocolate.
These foods are all high in histamine and this doctor’s research has shown that mast cell patients can clear up a lot of stomach issues by ceasing to eat these foods. Additionally, I’ve been told that 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.
Start keeping a food diary listing out what foods you eat and track any symptoms you may be having. Mast cells may take up to 72 hours to activate, so keeping a diary helps you to look back to see what you ate a few days previously and record any issues. Some foods may give you an immediate reaction, and it is important to cease eating those foods especially if the reaction is anaphylactic.
You may find that your varied diet is decreasing down to only a few foods. Sadly, this is all too common for mast cell patients. Or you may be able to tolerate certain foods during the wintertime when pollens are non-existent or lower, yet be unable to eat those same foods during high pollen season. Getting a diagnosis quickly will help you get onto some medication(s) to see if it will help your symptoms.
It’s really hard to eat very few foods every day diligently. But constant stomach aches and hives are no fun, so learn how to make it a game rather than cheat on a diet that is helping you to feel better. And for the foods that you are eating, make sure they are organic. Eating foods that aren’t organic exposes you to preservatives, food dyes and pesticides that are likely to activate mast cells.
How you prepare your foods can have an impact. I have my own cutting board, pans and spatula to ensure that no one else is cooking foods in pans that could end up leaving residue from a meal that triggers me. You might even want to get your own butter container, jelly, etc. so that there is no chance of cross contact.
How you cook your foods can make a difference to your gut. Grilling meats increases histamines, and believe me your gut will feel the difference. I was also given the suggestion by my Traditional Chinese Medicine doctor, Dr. Li, to prepare the meats that I eat in an Instant Pot, because the steaming makes the meat easier to digest. I definitely found this to be true for my stomach.
Prepare only what you’re going to eat for a meal. If you have any meat leftovers, freeze them immediately. Don’t refrigerate them since histamines increase in the food with this method. You can defrost and reheat food prior to eating a future meal. For fruits and vegetables, eat them fresh.
Make sure to always have safe food with you. Becoming too hungry and risking a meal from a restaurant may set your system back with a serious reaction. It takes planning and preparation to leave home with meals prepared, but it is so worth it to remain healthy!
Managing Your Environment
Spring and Fall can bring pollen flares and misery to those with mast cell activation, especially if you have allergies to grasses, weeds, trees and/or molds. Having a skin prick test to test for any of these pollen allergies is a good idea to know what to watch for in daily pollen counts during these seasons.
If you have pollen allergies, make sure to close the windows in your home and have an air purifier and/or air conditioning to keep your air healthy. Any known allergens, such as dogs, cats or other furry or feathered pets, should not be kept in your home.
Aromas from candles, air freshener sprays, perfume, or cologne may also activate mast cells. This can make it difficult to go to the shopping mall, movie theaters or out in public at all. It won’t always be that way, but while getting your symptoms under control, you will want to stay away from any of your triggers.
Being around chemicals in hair salons, gas stations or the hardware store can cause issues. Some of these chemicals are airborne, and others can be transmitted through the skin. It’s been necessary for me to cease getting my hair colored because of it burning my skin. My hair stylist and I spoke about my issues and determined it was no longer safe for me to have hair coloring touching my scalp. Additionally, to curtail my exposure to chemicals, I no longer even paint my fingernails or toenails with nail polish. It just isn’t worth the chance that I will react either to the polish on my skin/nails or the smell of it setting off mast cells.
Managing Your Medications
Once you receive a mast cell activation diagnosis, your doctor will want you to get on some type of antihistamine (and maybe even a mast cell stabilizing medication) as soon as possible. The longer a person delays, the longer that mast cells will be activating, and the worse you will feel. This activation can create havoc on body organs, and the cycle only gets worse.
Soon it’s not only your gut that is affected, but the mast cells are activating 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.
The drug regimen that most Western doctors feel is necessary to stabilize the mast cell is the combination of Zyrtec, an H1 histamine blocker, and Pepcid, an H2 histamine blocker. Additionally, to stabilize the mast cell, Gastrocrom (Cromolyn Sodium) is often prescribed; however this is a medication that MCAS patients either love or hate. It either works miracles or makes you feel awful. I’ve never met a patient who has an experience other than these two extremes! Ketotifen in pill form, which is obtained from a compounding pharmacy since it is FDA approved for compassionate use in the USA, is a cheaper alternative. I was not able to tolerate a Leukotriene inhibitor, such as Singulair, but this is a helpful drug for many patients with mast cell issues.
Your doctor is likely to prescribe an epinephrine autoinjector if you have experienced anaphylaxis, or if you are likely to experience it in the future. It is a good medication to have on hand, especially if your body is very reactive. I prefer the Auvi-Q because of its smaller size, and the fact that I can purchase it cheaper than an EpiPen.
There are certain drugs that increase mast cell degranulation, and The Mast Cell Disease Society website has a wonderful listing of these on page 6 of a document titled, Emergency Room Protocol. These medications aren’t just ones found in a hospital setting, and you should familiarize yourself with them to ensure your safety to not end up in the hospital!
A word about Xolair. I spoke at length about this medication with my allergist, Dr. B. She had several patients who had experienced anaphylaxis with their first shot, and was cautious about suggesting it for me with my history of recent reactions to small things like scents and fragrances. I know that some people reading this will tout the wonders of Xolair, but for me it wasn’t worth the risk. The black box warning of anaphylaxis but also the higher risk of cancer, heart and blood pressure problems was too much for me to consider this drug as the right choice for me.
Medications for Eosinophilic Esophagitis
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.”
Swallowed Flovent is the frequently used prescription for EoE. Elimination diets and/or elemental diets (amino acid formula) are other treatments for EoE. Yet even those don’t work well for some people.
My Journey after MCAS and EoE Diagnosis
After beginning to take Ketotifen, my body began the slow process of calming down, where I didn’t feel like I had the stomach flu every day. I still had so many health issues, and some of those were pressing. It took 5 years for me to get a diagnosis, and many other organs and body systems were compromised because of the mast cells activating for so long. And I had the complication of EoE further challenging my gut and my ability to eat.
Dr M. confirmed that he would support me getting a hysterectomy, a suggestion from my gynecologist. I had been experiencing tremendous pain with my menstrual cycle, to the point where I was almost blacking out. I couldn’t take any NSAIDs to ease the pain because of stomach issues tolerating the drug, and because these types of drugs aren’t suggested for those of us with mast cell issues since they cause mast cell activation. I had an ultrasound right before I went to have the endoscopy, which had confirmed that there were numerous fibroids in my uterus and a cyst on one ovary. Dr M. prescribed a 6-day course of Prednisone to calm my body down before having surgery in December.
My gynecologist did a complete hysterectomy and oophorectomy since in addition to the ultrasound findings, I also had endometriosis (another condition that has been suspected to have mast cell involvement). Having surgery with the issues that I had with swallowing and tolerating medications wasn’t easy, in addition to my limited diet requiring me to bring all my food to the hospital. At least I could be on an IV in the hospital, yet I still had horrible nausea from the Fentanyl (the only pain medication that wouldn’t increase mast cell activation) even with an anti-nausea medication. In consultation with my gynecologist, I chose to have a lidocaine infusion in my abdominal area which remained for several days after surgery before I was to remove the two probes myself at home.
I was sent home with a scopolamine patch and a Fentanyl patch, and ended up in the ER in the middle of the first night home having hallucinations. I was having an allergic reaction to the scopolamine patch, and didn’t realize that it’s a medication that I shouldn’t have used with my mast cell issues.
My gynecologist also put me on a hormone patch, which worked fine and actually helped my body to calm down with the consistent dose of hormones instead of the usual monthly cycle where my mast cells would increase dramatically during the pre-menstrual timeframe causing my gut to hurt and my entire body to be more reactive to what I ate and to my environment. It was difficult to determine what was hormonal-based hot flashes, and what was the flushing from mast cell activation, so finding the right hormone replacement amount took some time.
The next 18 months was a hopeful time for me. Being on the Ketotifen was helping my system calm down, and the lack of monthly menstrual cycles also helped. Yet, when I tried to add new foods to my diet, I still wasn’t able to tolerate them without severe gut reactions. My body felt like it was consistently right up against a threshold where one additional thing – a pollen, a cat, a fragrance – would send me into a reaction.
In the summer of 2013, I had another endoscopy and colonoscopy by Dr M to gauge whether my mast cell and eosinophil counts were getting lower. I got much sicker with the preparation for the colonoscopy than I had in the past, and spent the day of and the day after the procedure violently ill. My body didn’t have the ability to withstand these tests like it did previously. The results of the biopsies showed that both my mast cells and eosinophils were back below 15 per high-power field.
My esophagus however was still exhibiting symptoms of GERD, gastroesophageal reflux disease, based upon the pictures from these procedures. So clinically I showed that I was doing better, yet physically I didn’t feel better at all. Dr. M increased the Ketotifen up to 4 mg per day. I was also put back on Entocort, 9 mg per day, taken all at once in the morning, to help my intestines. I was also taking Ursodiol, Zyrtec and Ranitidine daily in addition to Zaditor (allergy eye drops) and Rhinocort AQ (corticosteroid nasal spray). I was prescribed a B12 injection that Dr M. suggested to help my gut absorb nutrients better, and because my B12 blood level was far below the healthy range.
Shortly after these scopes, the nurse at Dr. M’s office suggested that I take a break from eating food and get a feeding tube, since I couldn’t eat just four foods forever. I knew of a few other mast cell patients who were on feeding tubes, and I didn’t like the risk of infections, nor the fact that none of these patients were getting off the feeding tube permanently. This was not a path I was going to take lightly, and I wanted to see if there was an alternative. First, I took an inventory of where I was physically.
Despite knowing my diagnosis now, and being on the right drugs to stabilize the mast cells and eliminate the eosinophils, I was severely malnourished indicated by the blood test prealbumin. I was barely able to tolerate eating even small amounts of food, likely because of the inflammation in my stomach. My inability to sleep at night only made me feel worse, and my jaw clenching was damaging my teeth. I awakened constantly with stomach pain and acid. I had to wait at least one hour after eating before lying down to try to quell the acid running up my esophagus, since my lower esophageal sphincter was damaged and remained gaping open.
New blood tests revealed that my thyroid was not working properly, and my attempts at taking Levothyroxine and Armour Thyroid failed because of my gut issues. Sadly, there was no thyroid medication that came in a patch or cream. Everything had to go through my digestive system. My platelets were extremely low, and my bone density test showed osteoporosis. I was prone to fainting whenever I was coming down with a virus or flu or having been exposed to a trigger, some of which I knew and some that were still being revealed. The inflammation in my eyelids was severe, and I was diagnosed with blepharitis. I was experiencing reactions after being in public smelling various fragrances and scents, and being in a friend’s home with dogs or cats was no longer possible without serious allergic reactions. My world was closing in on me.
I had a friend who had a mast cell activation diagnosis tell me about a new GI doctor that she was seeing. I wanted to make sure I wasn’t missing out on anything in conventional medicine. So in early 2015, I went to see this new GI doc, Dr. G, traveling to yet another state to see if she would have any more clues as to what other diagnoses I could have since I was still having trouble digesting food comfortably and maintaining my weight. Dr. G was nice enough, but was obviously overworked and way behind schedule as I sat for an hour after my appointment time waiting for her to review my files and consult with me. She ordered up more blood tests on Interleukins, Cytokines, Chromogranin A and others. I got the blood work done, and everything came back normal except for Interleukin-5 which was high. (Interleukin-5 is produced by a number of cell types, and is responsible for the maturation and release of eosinophils in the bone marrow.) She also wanted for me to do a barium swallow test along with another CT scan once I got back home. I couldn’t stomach the thought of swallowing barium, and decided to not go back to see her. After calling to inquire about the costs of the tests, which were exorbitant, I felt I had further justification to head in another direction.
Right after this, my annual mammogram showed atypical cells, for the third year in a row. I went back to the same surgeon to have the area surgically removed again. I came through the surgery well because I asked the surgeon to remove much more of the breast tissue so I wouldn’t have to go through this yet again. After surgery, I thought that I might be taking more hormone replacement than what I really needed as I attempted to figure out whether the “hot flashes” I was experiencing were related to mast cell activation or to a lack of appropriate levels of hormones. I lowered the dose of the hormone patch I was using to as low as I could go without having unreasonable menopausal symptoms, which resulted in me applying ¼ of a patch for twice as long as suggested, and never had an issue with a mammogram since. I did continue to have flushing and hot flashes with mast cell degranulation, which wasn’t a good feeling, but was better than continually having atypical breast cells requiring surgery. It was frustrating that solving one issue created another, and issues just kept popping up that I would have to manage.
I had another endoscopy in late 2015 with Dr. L, my local GI doctor. The results showed that my lower esophageal sphincter was gaping open, and there were eosinophils in my lower 1/3 of the esophagus at a level of 26 per high power field. I also had 23 mast cells per high power field in my duodenum. I was told to continue to take 4 mg of Ketotifen daily to help with both of these issues, and I decreased my daily dose of Entocort slowly because of stomach upset each day after I took the pills. I believe I had reached a point with Dr. L where he really wasn’t helpful anymore with my condition. I had tapped out his knowledge of what to do next, and because of his beliefs around swallowed steroid not being helpful, I was sadly never prescribed it. Most of the focus of my issues was on the mast cell activation issues and not the eosinophils, yet EoE was clearly a mitigating factor in the results of this endoscopy.
The important part of all of these cellular responses was for me to understand that my body was reacting to many different perceived attacks by invaders and calling in “the troops” of mast cells and eosinophils to try to heal me, and the cascading issues were affecting many more body parts than just my gut. What I wanted to understand was – Why was my body feeling attacked and why was I so sensitive to my environment and to stressors in life? What could I do to change my cells to heal and become balanced? Is there something being called forth in this chronic illness that needed to be healed beyond my body?
It was clear that what I was doing, going from one doctor to another, taking loads of medications, and eating only four foods, wasn’t achieving any lasting results or lasting healing. And I wanted to begin on the path of healing, and not just symptom relief. I had no idea what I was getting into or even where to start, but I began my search to help me truly heal. I was mad and I let that anger fuel me. Life wasn’t supposed to feel like this and I began to pray for something to be revealed that would help me feel better.
To read about my experience of healing from MCAS, click here.