Visit the Microscopic Colitis Foundation Website
I was there 2 hours and had my detailed medical history taken by a fellow. She briefed the doctor about it and he came in and gave me a synopsis to make sure he understood. Then he asked why I was there, since I already know I’m gluten intolerant. What did I want? I said I wanted to know if I have full-blown celiac sprue, because that would require being more careful about cross-contamination. It would also give me reason to test my kids and other family members. He agreed that was important but said having been on the GF diet for 3 months would mean the results would probably be negative. He said I would need a 3-4 week gluten challenge, and based on my symptoms, that might be too difficult to do.
Despite my having Enterolab’s gene testing results, he insisted we needed blood gene testing to see if celiac is even a possibility. He and his fellow both said they could not accept those results because they "can’t understand how they could test for genes in stool." I had to remind them 3 times that it was a cheek swab test conducted by the Red Cross. Still they want real proof, so they are checking to see if my insurance will cover the celiac panel and gene test. If they don’t, they will enroll me in one of their studies and I’ll get the tests for free. I suppose I’ll try to eat gluten for as many days as I can stand before I get the blood drawn. But he was unwilling to speculate based on the results from Enterolab. Frustrating.
Regarding the autoantibodies, he said he knows many people with circulating antibodies, some high titer, who never develop a disease. He said it’s a reaction to my leaky gut allowing too many foreign antigens in. When my gut heals, the levels should go down.
I asked how often he sees microscopic colitis in his celiac patients. I think he said about 20%, although statistics say 30%. He seemed to imply it was an incidental finding, but then admitted “we used to think celiac disease was limited to the small intestine and the bowel was spared. Now we know otherwise”.
I only had about 10 minutes with him, so I had to skip to my most important questions, and it wasn’t all that informative. Mostly stuff I already knew. He was clearly miffed by my GIs refusal to test me for celiac.
I asked about the drug he is developing to supress Zonulin and whether it will be meant only for celiacs, or also for people with MC and related conditions related to leaky gut. He said it would be available for a wide number of conditions. I asked if it is intended to allow celiacs to eat gluten with abandon, and he said his preference is that it serve to minimize damage from cross-contamination, but the clinical trials are going ahead with subjects eating a substantial amount of gluten.
Regarding my kids, he said there is no need to test them if they are asymptomatic until puberty (when symtoms tend to subside). When I asked if my daughter's addiction to gluten-containing foods could be a sign of intolerance, he said it's a sign that she is a normal 3-yr old. Phew!
That's about it. No nutritionist consultation. No earth shattering news. I guess I get the bloodwork and go from there.
