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Food Allergies/>20 mast cells per HPF in possible mastocytic enterocolitis

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Dear Dr.Pearson,
How are you? Here is an update on my current health issues:
In November 2013, I had a blood test for the KIT mutation  ( to r/o  systemic mastocytosis) done by a Genetics team at the Montreal General Hospital. Although the results were negative, I was told that this did not rule out the presence of mastocytic enterocolitis.

In December 2013 I had an endoscopic biopsy of the duodenum,etc. at the Jewish General Hospital.
Clinical History:
With history of collagenous colitis and possible mastocytosis, treated with Nalcrom. Gastroscopy shows fundic gland polyps (biopsied), normal esophagus, and duodenum (biopsy taken for Celiac Disease); rule out mastocytosis.

While the duodenal mucosa was unremarkable. CD 117 immunostain show up to 30 mast cells per HPF. The mast cells in the lamina propria do not disturb tissue architecture- features found in classical mastocytosis. The increased number of mast cells (so-called mast cell hyperplasia) in literature has been related to IBS (normal considered 13 - 15 +/- 3 cells).

Does this histological finding of ~30 mast cells per HPF indicate a probable mastocytic enterocolitis, a generalized mast cell activation disorder, or is merely indicative of intractable diarrhea common to my collagenous colitis? What do think about  oral Ketotifen as an adjunct treatment to the Nalcrom?  Nalcrom is a great drug but only partially controls my diarrhea and pseudo-allergic reactions to foods, despite being extremely conservative in my food choices. I have to wait ~ 4 months for a follow-up appointment with my gastroenterologist. I am not that hopeful that he can answer my questions.
Your thoughts?

Best wishes,
Harriet

Answer
Hi Harriet,

Happy New Year and all that stuff.

Firstly I must declare ignorance. I am totally out of touch with the mastocytosis situation. And the same about mast cell types. Both I and that branch of science have moved on a lot. But in different directions!

I do have an acquaintance with genuine proven mastocytosis. He tells me that there are 7 quite different types and that some are vastly more common in Nordic peoples. I did not know that either. However, and possibly useful for you to know: He thinks ketotifen the mainstay of treating his symptoms and that it does help control them. Even without knowing that, I would have said "Give it a try". Very few, if any, nasty side effects and as yet unknown benefits. It is not an answer to everything medication. But sometimes it does do something to some people. But you can never tell just who those people will be. When you do try it, attempt to be objective. Keep a daily symptom diary both before and during. It is all too easy to let hope overcome objectivity and you can end up taking yet another medication which could do things like interact with other medication.

Well, at least you are still alive! Stay that way. Please do continue to let me know how you are getting on now and again. Who knows I might have one of those sudden flashes of inspiration?

With kindest personal regards, David

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David Pearson

Expertise

Any in the field I believe. Only experience of questions that get asked will tell.

Experience

I am a retired medical academic from the UK. I have done major research on Food Allergy and have been a government adviser in the area. 30 years experience running an allergy clinic. And undergraduate and post-graduate teaching.

Organizations
Well, apart from the FRCP, I'm no longer active in the area. I'm too busy writing books. And I no longer have the cash to go to international meetings. But was active in many.

Publications
Will 120 scientific papers help? Chapters in books. Patient advisory materials. Magazine articles. TV appearances. Live and recorded. National and international invited lectures, etc. It was my job for 40 years. Do you think I count!

Education/Credentials
MD, PhD, Postgraduate Diplomas etc. Fellow of the Royal College of Physicians. etc. But I don't want that put out on the net! Just to let you know!

Awards and Honors
irrelevant.

Past/Present Clients
Too many to count, patients of course and a large number of all sorts of corporate consultancies and considerable work as an expert witness in the Courts. I'm volunteering because your Greek expert has been so helpful, I thought I'd offer something back.

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