Visit the Microscopic Colitis Foundation Website
Not a chance. I began by telling him that Entocort is helping me very marginally now. I don't think he believes that using it off and on has much to do with the lack of effectiveness. He said some people use it, go off of it, and never need it again. He spent an hour and a half with me, which is to his credit. Most of that time was spent trying to convince me that I should have another colonoscopy while I refused to be convinced.
I brought up the mast cell issue pretty early and told him that I was avoiding high-histamine foods. I mentioned my mouth sores, the hives I had near my eye and on my cheek, the itchy head sores I have gotten the last two summers. I told him how I used to get UTIs and chest pains and no longer get them since I've reduced amines in my diet. My PCP was quite concerned when I told him about my symptoms, but my GI almost seemed amused, or skeptical at the least. He stopped short of ridiculing me for using diet to manage my symptoms and reminded me that it isn't working, saying there is no evidence that it works, using me as his example. He asked me at one point if I've Googled the term Microscopic Colitis. I told him that I did years ago, but not lately. I told him that I go to an MC support website.
I asked him if he's ever ordered a stain to test for excess mast cells. He said he did at Mayo. (That's it?) Then I asked him what treatment he prescribed when someone had the condition. He fudged and said it depended on the person's condition. When I asked him about Gastrocrom, he said he wouldn't prescribe chemicals just to test them.
I asked him if I could do the tryptase blood test and the urine test. No, he wants to rule other things out first. Interpretation - He's never heard of those tests. At least my PCP admitted that he's never heard of them.
At the end of the visit, he said he thinks I should have another stool test to see if I have excess fat in the stool. He also is concerned that I took Cephalexin last May 14 when I had the hive near my eye. He thinks my stool should be tested for C diff, since I was doing OK prior to that time. I stopped taking Entocort on April 12. I suppose it's a possibility, but my deterioration was gradual. I'm not having any cramping or pain, but I think my weight loss adds to his suspicion of C diff. I've lost the weight because I've reduced my calories. I think he's just going by the book with his analysis.
I showed him my spreadsheet containing the foods I eat and their nutritional analysis. I know it looks like I'm anal-retentive, so I explained that I'm a retired math teacher and I like detailed information. I shouldn't have mentioned it because kept referring to my being a math person from that point on.
As I was leaving, he said he wasn't sure if the pathology lab would be able to test for mast cells and would call me to let me know. Obviously, mast cells haven't ever been on his radar.
I don't have any faith in doctors right now. It wouldn't bother me to send in stool samples, but I'm not sure I want to invest any more time or money with this guy. However, he will prescribe Entocort, and he'll take me under Medicare, which I'll be on in another month. The sad thing is, he's very typical of most GIs.
Meantime, I'm taking 1/2 pill Sominex every evening. So far I haven't seen any improvement, but I'll give it a week or so. I seem to have gurgling every evening before bedtime. I wonder if it's because the Sominex has worn off by then.
Gloria
I can't believe he used you as an example to "prove" that diet doesn't work. How rude is that??
