Visit the Microscopic Colitis Foundation Website
So sorry to hear about your difficulties. I can't add much to the advice you have already received but will add a few brief comments.
As a physician, I can attest to the fact that continuing education is required - in my state it is 100 hours every 2 years. However, GI docs don't know about the "food" connection to MC because that info is still not out there, for the most part, on the medical radar or in the medical literature. There is a lot of good info on Dr. Fine's website (www.finerhealth.com), but unfortunately, he has not published anything for quite a while. At least nothing in the major medical journals. The info on the PP (our) website (which has been operating for 10 years) represents the best and most up to date with regard to the nitty-gritties of MC. We have the largest cohort of MC sufferers in the world, I'm sure, so the info you need to manage MC successfully is all here. You might enjoy seeing this list I wrote up some time ago of what we would like our GI docs to know about MC:
1. Suffering from diarrhea 24/7 is a life-altering experience. It is NOT a “minor inconvenience”, nor is it something anyone would wish to “live with”.
2. Every colonoscopy MUST include multiple biopsies from various areas of the colon.
3. A diagnosis of Irritable Bowel Syndrome (IBS) cannot be made without multiple biopsies of the colon that rule out MC.
4. MC can affect anyone…..from toddlers to pregnant women to seniors. Even dogs have been diagnosed with MC and prescribed Entocort!
5. Fiber does not help MC.
6. MC does not “go away” or resolve after several years. However, its symptoms can be managed successfully over the long-term with ongoing diet or medication or both.
7. Almost ALL with MC also have food intolerances, primarily gluten, but often other intolerances like dairy, soy, yeast, etc.
8. The gluten sensitivity that goes along with MC is NOT picked up by the classic tests for celiac disease (endoscopy, blood tests for IgA antibody or tissue transglutaminase). These tests will be negative. However, it is just as severe a sensitivity as it is in full-blown celiac disease.
9. Entocort must often be used longer-term than the literature would indicate………up to a year and even longer if an elimination diet is not being followed. Also, it must be maintained for longer periods before it is tapered.
10. The research, lab tests, and recommendations that have been most helpful to date to those with MC (after initial diagnosis) are from Dr. Kenneth Fine (www.finerhealth.com). Dr. Fine performs STOOL antibody tests for gluten, soy, yeast, dairy, eggs, etc. to determine food intolerances which must be eliminated. He also performs genetic testing and has found specific genes (other than the classic DQ2 and DQ8 for celiac disease) that predispose to gluten sensitivity.
Many have found it much easier to work with their primary care physicians than their GI docs after diagnosis. Often they will prescribe MC meds like Entocort, and in general, they seem more interested in working in a partnership with you and in considering alternative approaches.
Although many symptoms of MC can be much improved after a few months of meds and/or appropriate diet, it may take years for the gut to fully heal. This depends, in part, on how long and severely one has been suffering. For me, the symptom that took longest (several years) to fully improve was fatigue.
The rash, dermatiits herpetiformis (DH), will disappear once you are gluten-free. I had it, too, and found that Cortaid helped somehat with the itching. But the real cure is avoiding gluten.
Good luck on your path to health. You WILL get better because you are angry and will find your own treatment plan. Meanwhile, we are here for you, so feel free to rant and rave.
Love,
Polly
