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Woobet added a topic in Celiac Disease - Coping WithBewildered And ConfusedI am a self-diagnosed celiac and I have been gluten free for one month now.
Since childhood I have been suffering from many diseases, the majority of which are digestive problems,.. kidney, bladder, and breathing problems, fatigue, depression, lips always being dry, hair loss, problems concentrating...Some have never been diagnosed. I have always been under weight and now I am extremely under weight (I am 5 ft 10).
About 12 years ago I was diagnosed for duodenal ulcer and had a bypass surgery. As a result, I developed even more problems. (Lactose intolerance and dumping syndrome). When I heard about celiac disease a little more than a month ago, I was exhilarated, because I thought I found the root cause of my life long (34) health problems. I searched about celiac disease on the internet, and this forum has helped me very much. As soon as I embarked on gluten-free food, I saw encouraging results. The 'D' subsided, though it didn't disappear completely and I had somehow managed to minimize its severity even before I learned about celiac disease.
Though, I now live in Canada and have been seeing several doctors and specialists for the past 7 years, none of them ever mentioned the words "celiac" or "gluten" to me. What is even more surprising is that I had somehow figured out that bread was one of my worst enemies and I had told this to every doctor, but none of them ever mentioned celiac! I only recently heard about celiac on CTV, just as I had decided to see a new family doctor. The new doctor, though very good otherwise, would not accept my plea to have me checked for celiac. I have told him that I am now on gluten-free and I have seen encouraging results and he says "that's good, why would you want to be checked then?"
Now, my problem is that the little improvement I saw for the first days since I was gluten-free, is now diminishing. I was never completely healed from the duodenal ulcer (which I suspect is because of the undiagnosed celiac disease) and as a result, not only do I have to avoid gluten from my diet, I also have to avoid many other foods that upset my stomach. In addition, though the dumping syndrome caused by the bypass surgery has greatly improved in the past 12 years, I suspect that it also may be the cause for many of the foods that my stomach cannot tolerate. The long list of foods that my stomach cannot tolerate has increased since I have been on gluten-free. I can no longer tolerate lactose free and/or skim milk, almost all gluten free packaged food (since they have too many chemicals), spicy foods, almost all fruits, all drinks (except pure water).
I suspect that I have chemical intolerance which is now more pronounced than ever before. It's has been many years now since I was able to consume orange juice or any other juice or soft drink. The gluten free bread I buy from the store was only good for the first few days. Now, even that makes me tired after eating it (though no 'D') because of some of the ingredients in it. I switched to plain gluten free bread with natural yeast. And now yeast is my problem. As a result, I tried avoiding bread from my diet for a day, and I almost fainted because of lack of glucose (I guess). I have now started backing my own bread. Again, that was only good for the first few days. I found out that backing powder is a problem for me. In order to avoid that problem I am using less than the recommended amount of backing powder in most recipes.
Before going on gluten-free, I used to chew my favorite flavor from the "Extra" gum brand. I checked recently and they told me that it is a gluten-free product. But, these days, even that has become a problem with me. I just gave that up too and I feel slightly better since.
In retrospect I now see that I had been gluten intolerant since childhood and all my other health problems were directly or indirectly linked to it. I think that because it has been misdiagnosed for all my life, the celiac disease I have now is very sever, and I am afraid that the recovery will not be quick.
I check my weight frequently and it fluctuates every day. Some times I gain a pound or so, only to lose it the next day. I have not been able to pin point the exact cause for it. What I think, though, is that the villi in my small intestine must have been damaged so much that it may take a long time before I see any true improvement, apart from the
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