Need Input that I'm not going to get from Dr.

[DawnVincent]

I am probably one of few microscopic colitis patients who can eat gluten, but after 5 weeks of going gluten free and not getting better, I accidentally discovered that vitamin B12 was a tremendous help. I also take Banatrol, which is expensive, but even that didn't last after a year or so. As for MDs, the two gastroenterologists that I have seen, have Zero experience with microscopic colitis. I had been taking B12, but one of them said I didn't need to--she was wrong! But there seem to be many ways in which microscopic colitis can be controlled, and none of them seem to last more than a year or two. Since I am 87, I hope B12 lasts until I die. I am definitely NOT going to have another colonoscopy.

[tex]

I am probably one of few microscopic colitis patients who can eat gluten, but after 5 weeks of going gluten free and not getting better,

Trust me, there are no exceptions. If you didn't see any improvement when you changed your diet, you either didn't stick with the changes near long enough, or you didn't avoid some of the foods that were causing you to react. All of us are sensitive to gluten. It took me over three months to get my antigliadin antibody level down sufficiently so that I could detect other food sensitivities in my diet. Up until that point, gluten was dominating my immune system, and I couldn't tell what I was reacting to. I reacted to everything and anything, and sometimes I didn't react. Once my antigliadin levels decayed sufficiently, it was a different ballgame, and I could see that I had a clear possibility of searching out and eliminating all of my food sensitivities, and I did just that, so about five months after I permanently cut gluten out of my diet, I was able to pinpoint my other food sensitivities and eliminate them from my diet, and once I did, in about two weeks, I was in remission.

That said, just like celiacs, some of us don't display the clinical symptoms of gluten sensitivity, but a colonoscopy with biopsies will prove that the damage is still accruing if we're still eating gluten.

We don't become gluten sensitive overnight, and we can't get rid of the effects of gluten in our system in just a few weeks (only a lucky few are able to do that, because their antibody levels are still low). We have to have the determination and perseverance to stick with the diet long enough to give it a chance to work. The journey back to good health is rarely easy, but no matter how difficult, it can be done.

And yes, I eventually developed a vitamin B-12 deficiency, so I had to begin taking vitamin B12 to stop the progression of various neurological issues associated with vitamin B12 deficiency. I'm 83 now, and in January I will have been in remission for over 20 years.

Tex

[DawnVincent]

I live in a senior community that includes all meals. I also have mild cognitive impairment and don't drive anymore (I am 87) There is probably no way I can go completely gluten free, as I have asked, but the amount of gluten I can remove doesn't help. I have found various things such as colestipol and Imodium to be helpful for 6 months or 6 years, but now I am stuck with Pepto Bismol--I don't like that it makes my teeth dark, but it does work to control BM over the years when other items have failed. I haven't been constipated in 12 years! Right now I see that Methyl B12 is helpful, but wonder if it will last until I die. If I go into assisted living that is probably what they will give me. Also there will be someone to change the diapers!

[tex]

I hear you. I'm 83. Senior living facilities and assisted living facilities should definitely be capable of providing safe meals for their residents who have food allergies or food sensitivities. Some of them are aware of the problem, and capable of dealing with it, but obviously many are not. Many of these facilities are becoming increasingly aware of the problem, because obviously senior citizens are more likely to have a need for safe, customize diets than any other age group. Such facilities are available, but locating them requires searching. Fortunately, sometimes Doctor Google can help with that.

And it's also fortunate that in your current situation, Imodium, and/or Pepto-Bismol can be safely used without worrying about any of the severe side effects that some of the powerful prescription medications can cause.

Tex