Excessive Mast Cells in Colon

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I'm 25, female and just trying to survive. I have had multiple procedures done, most recently upper and lower endoscopies. My gastroenterologist found an excessive amount of mast cells in my colon and started me on Pepcid twice a day. He said to see him in a month. I have been reading and have come to the seemingly correct conclusion that I might have some sort of mast cell disorder. But, I haven't been diagnosed and I'm not sure that my gastroenterologist is even looking in that direction. After my research I would think he would have me come in to check my blood for tryptase but he didn't. My symptoms fit, I have excessive mast cells, and It's been 5 plus years of this. I'm ready to know what I'm fighting!

My questions; should I see another doctor and what type is best for this? If he doesn't bring it up should I?

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3 Replies

  • Posted

    Tryptase is a good place to start, but not always helpful. If your tryptase is normal it isn't conclusive, as both Mastocytosis and MCAS patients can have normal tryptase. (Most Mastocytosis patients it's high, but not all)

    Best place to start, Allergist/Immunologists preferable an allergy/immunology clinic at whichever hospital in your area is the biggest/most respected. Here in Utah it's the university of Utah hospital that's the local experts.

    If you are uncertain where to start, call up your local allergy clinics and ask if they diagnose mast cell disorders. If they answer no, then ask where they would patients to for that.

    You might need to call a few to get a hit.

    • Posted

      Thank you for responding, I really appreciate it. This is my first time reaching out on a forum and didn't know if I would get a response! Again, thank you.

      I was traveling to see a rheumatologist at the University of Utah, I did like it there. But,I didn't get any answers and didn't think it was worth the stress of traveling.

      I am glad to read your reply because, on a whim I made two appointments today for next week. One with my primary doctor and the other with my allergist/immunologist, the same doctor who referred me to the GI doctor.

      Thank you, for the great information.

  • Posted

    Hi Mary, so sorry you are having symptoms / reactions, especially not knowing what the "issue" is. There are things you can do to feel better. Everyone is different, but generally when histamine levels are involved (released by mast cells), taking H1 histamine blockers like Zyrtec / Allegra / Claritin / Benadryl and H2 blockers like Zantac clears up minor symptoms. Look for versions without dyes and too many fillers - those often cause more problems.

    Find a low histamine food list and choose the lowest histamine foods you can tolerate. No caffeine, alcohol, preservatives, additives, etc. When possible, eat organic whole foods (not processed).

    Cook from frozen when possible. Don't cook foods longer than 2 hours (to keep histamine levels low) Freeze leftovers immediately - do not place in the fridge.

    Read about common mast cell reaction triggers and avoid as many as possible until you can figure out where your reactions are coming from.

    There is an excellent series on the website Mast Attack called "for the practitioner." It's symptoms, what to test for, what the disgnosis types are...

    I have MCAD with systemic and GI reactions, although I do get skin reactions on occasion. I see an Immunologist, but other mast cell patients see hemotologists, allergists, endocrinologists, gastroenterologists ... or a combo of several of them.

    Tryptase doesn't tell th whole story - mine is considered normal range at 7. My 24 hour methyl-histamine, IGE total and PGD2 were very high. We also tested thyroid (normal) dexascan for bone density (normal) RAST and ImmunoCAP (for allergies - all normal, no allergies)

    You have to take control. Most doctors aren't familiar with MCAD yet. Print out literature. Create a full history of all your weird symptoms over the years. ASK to be tested for MCAD. Your GI may be able to re-run you mast cell biopsy to check for KIT mutations (genetic, determines type of mast cell disease).

    I know that ^^ was a lot. There are adjustments to make but if you do have a mast cell problem, doing those things above will make a HUGE difference in your symptoms - very quickly, usually 2-3 days.

    I hope you find relief soon, and find things that work for you.


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