Newly diagnosed with Mastocytic Enterocolitis

marciejones10 · Post by **marciejones10** » Thu Sep 06, 2012 4:53 pm

Ok, here's my story: I am 33 years old. For years I have had problems with severe, severe diarrhea. Had a colonoscopy about 5 years ago and GI doc said I was fine and put me on Welchol. Welchol helped some but not nearly enough. In June I changed GI docs and had another colonoscopy. My stains showed definite Mastocytic Enterocolitis. Doctor put me on Zyrtec and Zantac. Tried that for a month with no change. I have now been taking Gastrocrom 3 times a day for about 2 weeks, with no noticeable difference so far. Doctor says that if I don't respond to the Gastrcrom we will try Ketotifen next. I also went to an Allergy doctor and had skin testing done. I tested as allergic to a few environmental items (pollen, dust, grass, etc.) but no foods. I started taking allergy shots for the environmental allergies.

Question 1: Have I given the Gastrocrom enough time? Should I have seen a result by now or am I just being impatient?
Question 2: Are there any other drugs I should try?
Question 3: What else do I need to do or try to get my doctor to do (tests, medicines, etc.)?

Any advice is greatly appreciated.

Thanks
Marcie

Zizzle · Post by **Zizzle** » Thu Sep 06, 2012 6:07 pm

Welcome!
It looks like you've tried the right drugs for ME. At this point, I would suspect food intolerances in addition to the ME (the kind that would not show up on IgE blood and skin prick tests). Have you tried eliminating gluten and dairy to see how you feel?

marciejones10 · Post by **marciejones10** » Thu Sep 06, 2012 6:18 pm

I've been gluten free and dairy free for several years now so I don't think that that is the problem. Are there any tests for food intolerances or that just a process of elimination game?

mbeezie · Post by **mbeezie** » Thu Sep 06, 2012 7:16 pm

Hi Marcie,

Welcome! Hopefully we can provide some support and answers for you. I also have mast cell issues . . . let me see if I can answer some questions for you.

Since the GI found excess mast cells in your gut I think they need to consider ruling out systemic mast cell involvement. Tests that can be run are a serum tryptase and urine N-methylhistamine. An allergist might be more familiar with this testing, but that's a big maybe. The medical community is a bit behind the times where mast cells are concerned. My experience has been that you need to do your homework and go to the doctor and tell them what you want/need

Anyone with mast cell involvement should try a low histamine diet. If you do a search on this site you will find info on low histamine diet. Zizzle also is correct that you can also have additional food sensitivities, but I would try low histamine first.

Ketotifen is the preferred drug but as far as I know it is still not FDA approved in this country - might need to get it from Canada, which is possibile by ordering from a lab in Washington. Gastrocrom, ironically, can have diarrhea as a side effect. It is intended to prevent mast cells from degranualting, but you may be intolerant to the drug.

You need to carefully consider all sorts of things that can cause your mast cells to degranulate or cause your histamine levels to rise. For me drugs were a big issue. Do you take any medications? Hormones can also be a problem. Depending on your level of mast cell acitivity you could react to any number of things.

Here is a good article to get you started in understanding what is happening to you http://alford.grimtrojan.com/Mast_Cells ... isease.htm

Mary Beth

Zizzle · Post by **Zizzle** » Thu Sep 06, 2012 7:57 pm

Ketotifen can be shipped to the USA now from the manufacturer abroad so long as you have a prescription. See the August news release here:

http://www.tmsforacure.org/welcome.php

Leah · Post by **Leah** » Thu Sep 06, 2012 8:14 pm

Welcome! There are people on this site who are more knowledgeable on this subject than I, but soy is another big intolerance for many of us and eggs are for some. also Definitely check out the low histamine diet plan.
I hope other people chime in soon for you.
Good luck
Leah

Post by **tex** » Thu Sep 06, 2012 8:50 pm

Hi Marcie,

You're already received some great information, so I'll just say welcome to the group and never hesitate to ask any questions that come to mind.

Good luck with your treatment program.

Tex

marciejones10 · Post by **marciejones10** » Fri Sep 07, 2012 1:26 pm

Thank you all sooo much for your ideas. I think I will check out the low histamine diet and see if that provides any relief. And Zizzle many thanks for the info on getting the Ketotifen as my doctor had already told me I was going to have to get it from Canada if it came to that and sounds like you've found a much better alternative. My GI doctor has been useless but my allergy doctor has been such a help in trying to help me find a solution. I will mention the systemic mast cell involvement tests when I go back to him and see if he will order them for me. Thank you all so much!

Marcie