-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Hey there, Too Too. I came here to Lymenet, looking just for you, after I stumbled onto an interesting comment about microscopic colitis as a potential cause of MCAS. First, here's a link to the webpage where I found this tidbit of nerdy trivia, followed by a copy of the comment which caught my attention and made me think immediately of you: https://www.glutenfreesociety.org/why-are-gluten-free-diets-failing-to-heal-so-many-patients/ -- Scroll down to find this comment, posted by Zizzy:
Zizzy says: September 13, 2012 at 9:12 am Kerry, Sounds like she might have microscopic colitis (need a colonoscopy with biopsies to diagnose), which may be related to mast cell degranulation. Could be additional food intolerances too. Consider food sensitivity testing from Enterolab.com (you can order it yourself) or MRT/Leap testing (through a dietician).
The reasons this caught my attention was that I attended a celiac conference hosted by Enterolab in Dallas about ten years ago when the lab director spoke at great length about microscopic colitis and how much more difficult it is than ordinary celiac, which is not exactly simple to deal with either, especially for newly diagnosed patients. (Celiac becomes very simple to manage for experienced patients eventually, thankfully.)
Anyhow, we had known an MC patient and we knew how much trouble she had had, so the topic of MC really grabbed my attention. It wasn't until I saw this comment about MC though that it dawned on me that MC could perhaps (or perhaps not) explain a lot about your complex MCAS problems, too. It's certainly worth considering it though.
All I can really recall about MC is being very, very relieved that we didn't have to worry about MC in our family because it's relatively unrecognized and for that reason alone, it's still relatively difficult to deal with.
I can highly recommend Dr. Ken Fine's lab in Plano, TX -- namely, Enterolab. You can't go wrong by seeking their diagnostic services. https://enterolab.com/
BTW, both of these two websites (above) are related -- Finer Institute and Enterolab. Dr. Ken Fine owns both websites. (I'm also pretty sure that Dr. Ken Fine's interest in celiac and gluten sensitivity is deeply personal, based on having met him at conferences --i.e., that he is a complicated celiac patient himself.)
Posts: 4563 | From TX | Registered: Sep 2002
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Whoops, I guess I posted the above comment under the wrong topic. I should have taken time to hunt for another different MCAS topic of yours instead. However, I know you'll see it here, so I won't bother deleting it. I just hope that my previous comment doesn't derail your important topic about Lyme and MCAS.
PS -- Feel free to delete it yourself after you've seen it, if you wish, TooToo. It won't hurt my feelings at all if you do that.
Posts: 4563 | From TX | Registered: Sep 2002
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