My Own Struggle with Mast Cells Gone Wild

Published 12/15/2013. Last updated 2/6/2014.

See The Role of Mast Cells for information about what they are and how they serve the body.

 

 

 

The mast cells in my gut gave me a lot of grief about a year after I’d vanquished my Clostridium difficile infection and was back to eating more or less normally – the new normal, trying to eat gluten free but not entirely succeeding.

Dining on a lovely vegetable lasagna I’d made with an indulgent amount of cow’s milk cheese gave me acute diarrhea that clearly wasn’t a return of the C. diff. (A C. diff  infection has a distinct odor to it.) A GI test panel confirmed this but didn’t identify the cause.
So again I began suffering with chronic diarrhea that went on for a miserable nine months until, fortuitously (though it didn’t seem so at the time) I became sea sick while on another vacation and, in desperation took Dramamine. Much to my amazement, that not only stopped the mal de mer but also gave me a whole day with a well-knit together gut – fortuitously, the day I was on a long flight back to New York from Istanbul.

Some research on returning home and I learned that Dramamine is an anti-histamine. So I continued taking it and did some more research on why an anti-histamine would be effective on gut hypermotility – and learned about mast cells.
From the day after I’d enjoyed that wonderful cheesy vegetable lasagna, I felt as if a switch had been turned on in my gut. I’d eat or drink something – anything – and my gut reacted as if Attila and his horde of Huns was at the gate and a full-scale defense needed to be launched to expel the invaders.
A colonoscopy showed beautifully clean colon walls but the tissue biopsies I’d requested found a vast over-production of mast cells, just as I’d expected. Again I was desperate to feel better so reluctantly agreed to add a steroid to my usual probiotics to try to turn the switch off. A course and a half of generic Entocort, a corticosteroid used to treat severe Crohn’s disease, allergies, arthritis, asthma and skin conditions, did the trick .
Thermography images confirmed a huge reduction in inflammation inside my gut and chest areas.
I’m assiduously gluten free now. I also stopped eating all milk products, avoid refined sugar and artificial food dyes as much as possible. And continue to take high quality probiotics and other helpful nutritional supplements.
In recent months, I’ve been able to add plain yogurts, goat and raw milk cheeses back into my diet with good results. And I’ve fallen in love with kefir (the plain kind, no added sugar or fruits). It’s not only tartly delicious but is loaded with probiotics.

 

Two other interesting discoveries during this time:
  • During an appointment with my main health care provider, Dr. Denice Hilty, my chiropractor, she felt an imbalance and asked if I had consumed any artificial food dyes. I said I  didn’t think so, that I try to avoid all of them, even the FDA approved ones. The next morning, as I was about to take my daily steroid dose, I saw that its gel cap was colored fluorescent pink.
  • I learned, the hard way, that food products marked ‘Certified GF’ are not necessarily without gluten, that they may contain very low levels of gluten proteins so are considered safe for people with celiac disease, which is a t-cell mediated reaction to gluten. A gluten allergy, like mine, involves an IgE-mediated reaction to the wheat proteins albumin and globulin fractions and also sometimes an IgG-mediated reaction. Hence my ‘being hit over the head with a shovel’ reaction to snacking on some quite tasty ‘Certified GF’ granola.

A version of this page content will appear in my forthcoming 2014 Oriental Medicine Journal article THE MICROBIOTA-GUT-BRAIN AXIS: The constant two-way communication between our guts and our brains.

© Copyright 2013-2014 Joan Rothchild Hardin. All Rights Reserved.

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9 thoughts on “My Own Struggle with Mast Cells Gone Wild

  1. Hello Joan,

    You might have also DAO enzyme deficiency. I am a MD who focused on mainly to the gut microbiome and it’s diseases. So i have look at your history and find that you have cl. diff. enteritis for a very long time period. So you might have lost your diaminooxydase enzyme in your gut. So it is preferable to have DAO enzyme medications along with the useful probiotics.

    Bye

    1. Thank you, Dr Karaağ. I appreciate your concern & the suggestion that I might also be Diamine Oxidase (DAO) deficient. It’s possible: I’ve had chronic nasal congestion in the past, don’t do well with eggplants (which I love!), have had leaky gut (corrected by daily doses of GI Revive – 2 before each meal), react poorly to alcohol, and have a gluten allergy. But I don’t get headaches, generally sleep well, and don’t have most of the other common symptoms of histamine intolerance.

      If other readers are interested in learning more about histamine intolerance & Diamine Oxidase (DAO) deficiency, here’s a good article by the knowledgeable Functional Medicine doc Amy Myers, MD:

      Everything You Need To Know About Histamine Intolerance
      https://www.mindbodygreen.com/0-11175/everything-you-need-to-know-about-histamine-intolerance.html

      I also recommend Yasmina Ykelenstam (AKA The Low Histamine Chef)’s website:

      Healing Histamine
      https://healinghistamine.com

      I’m very glad to know there’s interest in Turkey in the gut microbiome’s huge influence on health problems.

      Joan

  2. You made two different posts regarding your colonoscopy. Which is correct, or did you have more than one procedure.?
    “I asked my GI doc to do a colonoscopy with biopsies to look for an overgrowth of mast cells. The colonoscopy found my colon to be in great shape visually but the biopsies found a problem at the microscopic level: not the overgrowth of mast cells I’d expected but an inflammatory condition called lymphocytic colitis up near the junction with my small intestine. This condition is characterized by an increased number of lymphocytes in the colonic epithelium.”
    “A colonoscopy showed beautifully clean colon walls but the tissue biopsies I’d requested found a vast over-production of mast cells, just as I’d expected. Again I was desperate to feel better so reluctantly agreed to add a steroid to my usual probiotics to try to turn the switch off. A course and a half of generic Entocort, a corticosteroid used to treat severe Crohn’s disease, allergies, arthritis, asthma and skin conditions, did the trick .”

    1. Lorna,
      Yes, I went to my GI doc for colonoscopies on two different occasions: once, about a year after I’d vanquished a nasty C. diff. infection but again started suffering with greatly speeded up gut motility, and then a few years later when the motility problem recurred.

      Looking back, I now think the inflammatory condition called lymphocytic colitis was actually the issue on both occasion, that ongoing histamine intolerance was inflaming my gut both times.
      HISTAMINE INTOLERANCE
      http://allergiesandyourgut.com/2017/08/31/histamine-intolerance/

      The naturopath I’m working with now, the wonderful Dr Gabrielle Francis, says her clinical experience is that histamine intolerance is a result of chronic inflammation in the gut and, when that is fixed, the histamine intolerance greatly improves. That’s been my experience too so I think she’s right.
      Here’s her website:
      http://theherbanalchemist.com

      Joan

      1. Hi Joan:
        I am very familiar with histamine issues / intolerance. However they can be genetic. I am homozygous for two diamine oxidase defects which result in greatly reduced activity in this important gut enzyme. I am also heterozygous for 2 MTHFR defects (C677T and A1298C) and homozygous for MTHFD1, making my ability to degrade the increased histamine via methylation impaired. I am also homozygous for certain HLADQ2 genes making me intolerant to gluten, which I gave up years ago. Thus GI issues have plagued me most of my life. I left my career as a Medical Laboratory Scientist, to obtain a Ph.D. in Nutrition with a concentration in nutritional biochemistry. I was ultimately diagnosed with collagenous colitis, which IMO was caused by the disordered histamine metabolism. Years of antibiotics from a botched surgery resulting in dysbiosis only added to the histamine load. That was the epigenetic component. Treating the methylation defects with supplements, taking diamine oxidase enzymes with each meal, removing gluten and dairy, and eating a low histamine diet have greatly improved my health and gut inflammation. I do not tolerate probiotics (not even Bifido species) as the increased amine load they carry with them (via production methods) divert DAO from degrading histamine. I also use herbal mast cell stabilizers. I currently work as a GI Nutritionist and specialize in GI issues. All of the above is why I asked the question. 🙂

          1. Joan:
            Yes, I am aware of Yasmina’s site. Her information can be quite useful. However, I do not agree with some of her postings/opinions/recommendations. My own experience and those of my patients often prove otherwise. That said, I think her site serves a much needed gap between the allopathic approach to HIT/MCAS and a more holistic one.
            Lorna

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