Category Archives: Eczema & Rashes

Eczema & Rashes, Eosinophils & Mast Cells

EoE and Barrier Dysfunction from Detergents

I recently had a friend in the EoE (Eosinophilic Esophagitis) world forward me a recent research study about detergents such as Sodium Dodecyl Sulfate (also known as Sodium Lauryl Sulfate or SLS) and their impact on the esophageal barrier. She had heard about this study at a recent conference. The research found that detergents can induce esophageal inflammation.

The research conclusion was “Detergents may be a key environmental trigger in EoE pathogenesis.” (You can read the research here.) This shocked me into looking into my cabinets to see how many products I use that contain SLS. I thought that I might find one or two, but I discovered that my toothpaste, hand soap, shampoo, dish soap and other items all contained SLS! I decided that if using products that contain this detergent could have anything to do with my EoE, I’m willing to find new SLS-free products and do one more thing to help myself heal.

It has taken me the better part of a month to find items that are truly SLS free. Part of the reason why SLS is put into so many products is to make the liquid lather up nicely, and that includes toothpaste. I was most concerned about finding a new toothpaste, because I have had so many reactions to anything new put into my mouth. I haven’t been able to use mouthwash since I was diagnosed with EoE and MCAS (Mast Cell Activation Syndrome) without getting canker sores and/or having terrible itching. I was thrilled to find mint flavored toothpaste by the company, Hello, that I can tolerate! No reaction whatsoever. Also, I can get it at my local Whole Foods store, which is an added benefit. (There is also a fluoride free version of this toothpaste.)

Many products made by companies that you would think would be free of SLS aren’t as safe as I thought. Seventh Generation has SLS in some of their dish soaps, but not all. Tom’s of Maine is the same with some of their toothpastes. I searched “SLS free” products on Amazon, and found sodium lauryl sulfate listed in the ingredients of the product even though the search pulled it up as safe. I’ve learned to carefully read all the ingredients, and to not trust Amazon’s search algorithm!

If you’re like me where you’re very committed to certain products because your sensitive skin can tolerate them, finding products without SLS that you can tolerate can be quite a feat! I’ve had atopic dermatitis to coconut oil, so Dr Bronner’s pure castile liquid soap was a no go. I went through numerous SLS free hand soaps getting eczema and rashes before I decided to continue to use what I know works for me – Dove Sensitive Skin Beauty Bar (also known as a soap bar!) I now have a soap dish by every sink in my house for me to deposit my soap bar after use. To date, it’s the only SLS free hand soap that I can use.

Shampoo was also very difficult to find without SLS and without coconut oil. My hair stylist suggested this product, and it has worked great for me and even lathers up! I was able to find it on Amazon.

Lastly, I found dish soap from Better Life that I had used before and just got lazy by picking up products at Costco. Of course, all of those products have SLS in their ingredients. The Better Life dish soap also comes unscented, but surprisingly this scented dish soap doesn’t bother me!

I’m now actively engaged in protecting my skin barrier and my esophageal barrier with the use of these products! If you’ve found others that work well for you, tell me about them at [email protected]

PS – I have not been paid to endorse any of these products. They are suggested based upon my experience. PLEASE make your own decisions of changing products to SLS free based upon what works best for you, which may be different products depending upon your own sensitivities!

Eczema & Rashes, Eosinophils & Mast Cells

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!

Eczema & Rashes, Eosinophils & Mast Cells

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!

 

Eczema & Rashes, Food Allergy & Families

Kiss Freely with Allergen Free Products!

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Kiss Freely products are free of the 8 major allergens and then some!  They avoid the use of other potential allergens such as sesame, shea butter, peas,coconut, avocado and sunflower seed. Below is an interview with Jennifer Kurko, the Founder of Kiss Freely, to find out about these wonderful products.

Hello Jennifer. Can you tell us how you thought of creating Kiss Freely?

My oldest daughter was diagnosed with multiple food allergies when she was 9 months old.  I really thought we were beginning to navigate life with food allergies pretty well.  Until one night when I kissed my daughter on the cheek and she broke out in horrible hives.  I knew it was not from the food I had eaten because we keep a house that is free from her allergens.

It actually wasn’t until a few days later that I realized it was my lip balm.  It contained almond oil,  Up until that moment, I had not thought to look at what was in personal care products.  I went through everything in the house and threw out almost all our lotions and lip balms.  All my makeup.  I wasn’t able to find a safe line of products and as most food allergy moms know, you are already making a ton of food so making my own lip balm didn’t seem like too much of a stretch!

From there I began making body butter and make up.  Friends began asking me to make them products.  My daughter one night at dinner said, “I can’t be the only one who needs special lip balm.  You should sell them.” We formed Kiss Freely so that people who did need “special” lip balm and other products would have those options.

What allergies do you manage in your household?

My oldest daughter is allergic to dairy, eggs, tree nuts, peanuts, sunflower seeds, flaxseeds, beef and sesame.  My youngest daughter is allergic to eggs and is in the process of being tested for EoE and celiac disease.

What makes Kiss Freely so special for the allergy community?

Kiss Freely is unique in that it is the only cosmetics and personal care items to cater to the food allergy community.  It is top 8 free.  I also took great care to make sure we did not include other highly allergic ingredients so we are free from a lot of thing such as coconut, sunflower, corn.

I completely understand cross contamination.  Our workshop is top 8 free.  We use dedicated equipment for all our products.

I also wanted the products to be as natural and environmentally friendly as possible, so all our products are vegan.  We use organic ingredients whenever possible.

I also take custom orders.  They are my favorite because I know someone is able to participate fully in an activity or finally wear their favorite color lipstick after years of being allergic to it.  I make a ton of custom dance orders and I am in the process of making the black under eye color for a young baseball player. I cry every time I get a picture of the person wearing our products.

What is your top selling product(s)?

Orange lip balm is our best seller.  Our face paint is a close second though!

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I love the face paint that you sell. Have you had any customers that can’t tolerate this product? 

It was so nice to see so many kids get to use face paint for the first time! We have not had any customers who could not tolerate it.  I try to use the least amount of ingredients as possible in every product.  The products are simple, natural and  that really helps most people be able to tolerate the ingredients.

I see that a portion of your income goes back to food allergy organizations. Which non-profits do you support?

We have supported FARE and FACCT both locally and nationally.  We also really like to be involved with supporting local allergy  and advocacy groups.  That’s the wonderful part of growing as a business is being able to give more back and be able to make a bigger impact in the food allergy community.

Is there anything else you’d like to share with us?

We are always looking to create new products.  We hope to have shampoo and mascara in the next few months.  Longer term, we hope to create a safe sunscreen.​

Thanks so much Jennifer! 

Note from Nicole: My daughter, who has celiac disease and a mast cell disorder loves these products. She too has had multiple reactions to other makeup and has thoroughly enjoyed the products made by Kiss Freely.

Eczema & Rashes, Eosinophils & Mast Cells, Food Allergies & Asthma, Research for a Cure

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.

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

 

Eczema & Rashes

Eczema: The Itch that Rashes

Living with food allergies and eczema has become quite normal for our family. Our son, Morgan, is now almost 15 years old and has lived with food allergies his entire life; however his eczema is our ongoing battle.
From his first few months, Morgan had severe, weeping eczema across his body. It was everywhere – behind his knees, on his hands and feet, and even behind his earlobes. His skin was constantly infected, and I coated him with lotions and over the counter steroid creams to not much avail.

Morgan’s eczema was helped by using Eucerin® lotion in the paste form, and by sparingly using Elocon® lotion (a steroid) when he was an infant. The Eucerin® is almost the consistency of lard.  Wal-Mart sells a generic brand of this that costs about 1/2 the amount of Eucerin®, and we’ve found it to be equally as good.  We slathered it on him every night.  When he was a baby, we applied it every time we changed his diaper.  The Elocon® lotion is a steroid cream, so we tried to use it only when his eczema got very severe.

The eczema moved around his body as he grew older, but it has never entirely disappeared.  For a while, he had one finger that regularly sported an eczema spot if he ate any food with food dyes!

The use of heat in the winter time dries out his skin, as does swimming in chlorinated water in the summertime.  So, there isn’t a season where he gets a break.  If we forgot to use the Eucerin® paste, his eczema would crack and fissures would form.  He has been put on antibiotics, which ended up curing the fissures.  However, we tried to not allow the eczema to get this out of control.  The Elocon® lotion will sting if put on eczema with fissures.  He would cry in pain which hurt me almost as much as him – and made me more aware of staying ahead of his skin problems.

Morgan’s eczema gets worse when certain foods are added to his diet.  We notice that processed foods with yellow and red dyes made his skin much worse, so we removed these from his diet entirely when he was young.  This helped the eczema to disappear, yet it would amazingly reappear for no apparent reason. When he was a baby he was severely allergic to eggs; when this allergy disappeared, we started feeding him foods containing eggs, only to find that his eczema flared up.

We live in Colorado Springs, which has hot, dry air in the summer.  However, combining the heat with sun lotions is a recipe for disaster.  We use titanium dioxide sun lotions since they seem to be kinder to his skin.  Certain fabrics such as nylon bothered his skin when he was younger, creating eczema-like blotches.  Long ago, I began using laundry soap that is free of all dyes and perfumes.  None of this cures his eczema, but it helps it to not become worse.

Now that he’s a teenager, he’s responsible for taking care of his skin. As with most teenage boys, hygiene is a difficult daily practice! For a while, the prescription medication Singulair® cured his eczema completely. Now it doesn’t work at all. Since he started allergy shots his eczema seems to be worse, yet he is also in the middle of puberty. Our allergist had told us that some patients experience worsening eczema with allergy shots, yet his environmental and pet allergies are much better. It’s a difficult trade off!

When he has a bad eczema breakout, we have begun wet wrapping his skin with CeraVe® moisturizing cream and Fluocinonide steroid cream. (He also takes an antihistamine, such as Xyzal or Zyrtec once a day.) We apply the steroid first, then the moisturizing cream and then hot, wet gauze to wrap his skin sealing in the moisture. Adding socks or ace bandages over the top insures the gauze stays in place. Keeping the wet wraps in place overnight helps the worst eczema spots. Twice a day wet wrap treatments can do wonders for his skin!

There is a prescription drug called Elidel or Protopic that is for severe eczema sufferers.  Our allergist didn’t think that Morgan’s eczema was severe enough to warrant such a treatment.  However, if your child is really suffering – you might want to discuss this with your allergist. There have been FDA warnings regarding this drug that you might want to read here first.

We feel like detectives on most days, attempting to find the cause of the eczema. It might be food related, contact related (such as grass or clothing articles) or none of the above. We would love to find the magical cure to make his eczema disappear. In the meantime, we’ll keep searching for what works for today to ease the itch!