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Gloria
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Paging Pat

Post by Gloria »

I'm wondering how you're doing? Haven't heard from you for a while.

Gloria
You never know what you can do until you have to do it.
Pat
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Post by Pat »

Thanks for asking, Gloria.

I am doing somewhat better. I feel the Imuran and Entocort are helping and I have drastically changed my diet. I know this will get a rise out of most here on this board but after almost a year and seeing absolutely no change from diet I am no longer GF, SF, DF. I feel better and have gained a few pounds. The only foods that seem to bother me are high fructose foods. So I try to avoid them. I do eat fruits but only a little. High fructose corn syrup makes me nauseous. I feel better, sleep better, I don't feel so anxious about food. Life is just better. I know that many need to stay on the diet. I think you in particular, Gloria, have found that if you accidentally eat some gluten you can tell it. I couldn't. In fact I think that the gluten firms up my stools. I think we are all different and have to find what works for ourselves. I still peek in here occasionally and think you all are great! I just wish the diet had worked for me. I would have stayed on it. Some will say I just needed to give it more time but I think a year was long enough.

Additionally, I went to my gynocologist last week and she suggested that my symptoms started when my hormones started to fluctuate. She has seen over the years that a drop in hormones can trigger all kinds of random weird things. She suggested that with my GI's consent that I should try a round of low dose estrogen. She would never have suggested this except for all that I have tried and failed at over the past year and a half. I see my GI doc on 6/6 so I will run it by him.

Thanks again for checking on me. Hope everyone had a great holiday weekend. Let's remember all those who have fought for our freedom today and everyday!!!!!
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tex
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Post by tex »

Hi Pat,

That's a veeeeeeeerrrrrrrrrrrrrry interesting post. Please don't think that I'm criticizing your dietary changes, because I'm not even sure what I should be eating, let alone someone else, and I have changed my diet many times, in the last seven or eight years. Everyone has to decide for herself or himself what to eat, to best serve their needs.

Hormonal changes seem to have a very dominant effect on some individuals, as far as MC reactions are concerned. One of our newer members, Kimberley, (kimpat), is a prime example, and if you read some of her posts, you may be able to gain some insight into your own situation. Here's her latest topic, I believe:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=7651

Under the watchful eye of someone who knows what she or he is doing, hormonal treatment might possibly be very effective, though not without other risks, (as with all treatments, as I'm sure you are well aware).

Still, based on your Enterolab results, there's no question that you are intolerant to, (at the very least), gluten, casein, and soy. If the Imuran is working properly, it should be masking your intolerances pretty effectively, by now, though. The firmer stools are most likely coming from dairy, rather than gluten. Your fecal fat score was the highest I recall being reported on this board, (422), so you have a fair amount of small intestinal damage, making me suspect that you may well be a celiac, (possibly a latent celiac, but most likely below the threshold of the standard celiac serum tests). You are also carrying the most common celiac gene.

Good luck with your new diet - being able to gain weight, when your efforts have been frustrated for so long, is definitely a good thing. I would hope that you will ask your doctor to follow up with an occasional, (every year or so), small intestinal biopsy, in order to keep an eye on the risk of cumulative damage to the villi.

Please keep us updated. The information that we get from feedback is more valuable than the things we learn from any other source.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Gloria
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Post by Gloria »

I'm glad to hear you are doing a little better and are gaining a few pounds. I think you gave every effort possible to finding a dietary solution, but still couldn't achieve remission. I agree that we are all different and have to find our own way. I think that much of what we are doing is sharing and testing theories. If a given theory works, then it's a proven theory for that individual. If it doesn't, then it's a theory, not fact. I'm glad you are finding some relief in eating a wider range of foods.

My latest theory is that fiber is irritating my colon. Since I've eliminated almost all fresh fruit, fresh vegetables, salads, nuts and rice cakes, I'm doing much better. I'm hoping that once my colon is healed completely, these foods won't irritate it and I can resume eating them.

It's interesting that your gynecologist thinks there may be a relationship between your symptoms and perimenopause. I think a low dose of estrogen might be worth a try, if for nothing else than to see if it reduces your symptoms. We know that the symptoms seem to disappear when women are pregnant and have high hormone levels.

Stay in touch and let us know what is working for you. Your experience is helpful to others who have struggled like you have.

Gloria
You never know what you can do until you have to do it.
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