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.

Answer by CertPsychRN
Hi….I was diagnosed with Systemic Mastocytosis in 2000 at N.I.H. in Bethesda, MD. following 2 skin biopsies, a 24 hr. urine for HISTAMINES, and a Bone Marrow Biopsy. I have both the Cutaneous and the Systemic Forms of this rare blood disorder, and, over the years, it has progressed to the point where I am now receiving IV Infusion of a Chemotherapy drug called CLADRIBINE. I have been treated at the Univ. of Michigan by Dr. Cem Akin(who originally diagnosed me at N.I.H.,) as well as at Mayo Clinic, Rochester, MN. I also have a contact at the Dept. of Leukemia, MD Anderson Cancer Center, Houston, TX. All that being said, your symptoms reflect many possible other sources…have you had your gall bladder checked? That could account for the diarhhea and stomach pain when you eat foods with a high fatty content. Have you had your Calcium and Parathyroid levels checked? Hyperparathyroidism can cause extreme bone pain, vomiting, diarrhea, and Gastrointestinal Reflux Disease. The large, itchy hives you get in the abdominal area are anybody’s guess…but because they seem to only be in the stomach area, instead of all over, that probably rules out Cutaneous Mastocytosis. Hives can also arise from anxiety and stress, or an allergic reaction to SOMETHING, but again, an allergy that produces hives in only one area probably isn’t due to an allergen like a new detergent, new body lotion, etc. As the previous source mentioned, a high Tryptase level is usually indicative of a MCAS. Get your Alkaline Phosphytase level checked..a high serum level might confirm that you are indeed having bone involvement and might be a starting point from which your dr. can correlate your unexplained bone pain….although you are very young, a DEXA Scan of your bones could show Osteopenia or Osteoporosis and Bone Fragility, but those scans are more often used in older women.

It has taken me YEARS to find appropriate help and I know just how nerve wracking it can be to find out what’s going on with you. How you ever even thought to think of any MCAS’s tells me you’re doing alot of online research, or that some Dr. at some time said something in an off handed manner about this group of disorders. If the latter is the case, GO BACK TO HIM!!! BTW, for your stomach cramps and diarrhea, see a Gastroenterologist and get a prescription for Gastrocrom…it really helped me! Also, when I was first diagnosed, all that was available to treat the symptoms were Histamine Blockers, such as Zantac, Zyrtec, Benadryl, and later Allegra, and Singulair. Also, real relief for my Reflux Disease as well as my Masto symptoms of the GI Tract, came in the form of Prevacid..it is a Proton Pump Inhibitor which, somewhere between 2000 and today became a STANDARD drug for treatment of Mastocytosis related GI problems.

Sorry this was so long, but regardless of what is causing your symptoms, I wanted you to at least have some things to think about in your quest to find some answers!! Very best of luck to you!

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