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

[dolson]

I still have watery diarrhea. My diet: I have dairy free yogurt with granola mix - no peanuts, and it's quite good. I don't seem to have a problem. For lunch I have a rice cake topped with almond butter and watered down apple juice. For dinner tonight we will have hamburgers and I will have one slice of rice bread and beef with ketchup, lettuce and tomato.

I have eliminated all citrus acid. I did an experiment last night and had a sugar-free popsicle and it's made with citrus acid. Boy oh Boy, I got watery diarrhea. I had to wash everything.

Cholestromyine used to work but it doesn't work as well as the beginning. I don't understand why it's not working like it use to be working. I now use Immodium - two in the morning and two at night...along with Cholestromyine.

To say I dislike this disease is an understatement. This is a hard disease to manage. I guess I inherited this from my daddy. My poor daddy. He suffered so but he never complained, not even in his autobiography.

I wish they could find a cure. I did not know about this disease and nothing was mentioned in nursing school. The only thing I remember was that the Jewish population gets all the GI problems more than we mere non-Jewish people. But does it really matter? I think not. I now have four auto-immune diseases. How long will I live with Type I diabetes? I don't know, but I will probably have a heart attack and die.

I met a woman in the back on the golf course and she told me that she forbids her daughter from marrying an Irishman. I asked, "Why?" She said, "Because she has five autoimmune diseases." I looked up on line to see what diseases that effect the Irish and its: Hemochromatosis and Celiac Disease. My Nana, Dorothy Winifred Cassidy- back Irish, did not have Type I diabetes but her son...my daddy did. I have always heard that Type 1 diabetes skips generations but not in my case. My brother also has diabetes and he can't read.

Tex has helped me tremendously and I love him. He is kind, helpful and simply wonderful.

Dr. Kenneth Fine is now in Athens, Greece and he told me on the phone that his house or apartment was ransacked in Dallas. I don't know if that's the reason he left the states or if he just wanted to live in a foreign country. I just hope he's happy.

This is my latest story. We never went to New Zealand. We got confused about the Visas. We are going in December to Yellowstone with my cat who had IBS. We give her Busoniide and it's helped her. She is our first rescue and her name is Cori.

If y'all want anything to add to my life and diet, give me a holler. Thanks, Dorothy

[tex]

Dorothy,

Despite the fact that they are usually considered to be vegetables by nutritionists, botanically, tomatoes are actually citrus fruits. This also applies to zucchinis and melons. That means that not only are the tomatoes you are eating loaded with citric acid, so is the catsup, since it's made from tomatoes. Also, I can remember that back when I was reacting, raw iceberg lettuce would almost turn me inside out, the diarrhea was so severe. I can eat it now, like most of us in remission, but when we're still reacting, raw iceberg lettuce typically has an almost toxic effect on our digestive system.

I hope this helps,

Tex

[Erica P-G]

Hi Dorothy
I’m 10 years into this healing thing…. I can’t eat spaghetti sauce without it giving me bad water diarrhea
Also the granola made with oats might not be helping…I know I can’t do anything with oat either.
It’s been a while since I’ve visited the forum…I wish I could say I’m in remission but I still waiver. The best I can do right now is try to eat safe and I don’t have emergency bathroom trips, I occasionally get stressed (I am still working full time) so my body empty’s every so often due to stress but it doesn’t make me run to the bathroom a zillion times a day anymore
Your diabetes may be making your symptoms harder to work around…I wish you the best that you can do.

Erica

[DawnVincent]

Last week I saw a new GI doctor who says he has "several" patients with microcolitis who are handled well with Colestipol. I was too for about 3 years, and suddenly I wasn't. I go as gluten free as possible, but I live in fancy senior community with all meals included and what is gluten free is up to my own guess. I try, but I am sure I miss a lot....the food here is very tasty! Right now I have discovered that vitamin methyl B12 and bananas twice a day is workable, even if I probably miss the gluten content of some of the items served. I also take Banatrol (very pricy) when bananas are not available. But no "solution" seems to work longer than a year and a half, except Pepto Bismol. I don't like to take that because it turns my teeth dark. However, if I am going to be away from home, that's what I take. At 87 and with mild cognitive impairment, I am definitely ready to die. I turned down the colonoscopy that the MD wanted to do to see if I have cancer, because if I do, I would not have surgery.