Question by Rusty: Could I have Mastocytosis or MCAS?
I have struggled with gastrointestinal problems for years: diarrhea, nausea, vomiting, weight loss, painful radiating abdominal cramps. I saw a pediatric gastroenterologist when I was an adolescent (I am now 22) and was checked for Crohn’s disease, ulcers, bacterial infections, etc. I am hypersensitive to foods (dairy, greasy or oily foods, high fat content foods) and sometimes get sick after heat and high activity exposure. Usually when I eat these foods, I get stomach pain that develops into diarrhea or nausea very quickly, sometimes before I am even done with the meal. I also was diagnosed with acid reflux disease and have unexplained bone pain and dizzy spells sporadically. When I was younger I used to get LARGE, red, itchy hives across my stomach area for unexplained reasons, but have not seen any in years. I was wondering if anyone has been diagnosed with systemic mastocytosis (particularly that affecting the GI) and would like to know how and if I should get tested for this disease?

Best answer:

Answer by thefoxxww2
Carrie – how did you learn about mastocytosis? Yes, your symptoms could be from masto. If you are in the Boston area, I’d strongly recommend seeing Dr. Marianna Castells who is one of the leading US authorities on mastocytosis and mast cell diseases.

Otherwise, I’d see an allergist who has, at least, a basic understanding of mastocytosis. I’d think a good starting point would be to check your tryptase levels (simple blood test), your histamine levels (24 hour urinalysis) and, if you have “spots” have them checked to see if they are UP spots (uricartia pigmentosa). They look like freckles but are salmon in color and typically turn to hives when you are in flair.

If your tryptase is elevated, you would need to have a bone marrow biopsy done. I know it sounds scary and horrible but it’s really not that bad. www.tmsforacure.org is a wonderful resource. If you click on links there is a link for a listserv you can sign up for. There are many wonderful people on the listserv that can answer your question.

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