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Is It Celiac Or Is It Nerves?

Susan M-G

By Susan M-G
in Coping with Celiac Disease

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Susan M-G Rookie
Susan M-G
Posted

I wanted to add a response to "Pinned/Pinner?z" but did not reply right. So I'm just going to ask questions here.. I too have been wondering about things like this term glutening? For quite some time I was sure I was sensitive to wheat, but that I was not celiac because of the negative test I had originally. So I, for at least two years religiously avoided wheat, not realizing that spelt, and other "wheat free" things that were glutinous were also bad. If I cheated on this diet I would feel poisoned, and have diarrhea. I don't recall becoming nauseous. My stomach would tighten up into knots, and then bloat, and it was terribly uncomfortable, to say the least. I had been having this kind of thing since I was a kid, however, and I think I just got used to having stomach aches. My mom always said it was "nerves." Earlier this year, I just got tired of dealing with the diet. And it did not really hit me as hard as it had in the past. In fact, it was only when I was at the doctor for another reason that I was describing feeling crummy (but not poisoned) and having stomach cramps etc., and it dawned on me (duh!) that it was the old wheat thing. the doctor, new doc in a new town was very astute and aware of celiac symptoms, etc. she mentioned this to me and I told her I was not celiac as I had been tested for it a couple of years earlier. Of course I had no idea what tests were done, and despite my repeated requests the previous medical clinic never sent out my records to the new doc. New blood tests have been "borderline" and in anticipation of the biopsy, I've been indulging on bagels - toasted with butter - and other non-gluten free goodies to my heart's content, with jsut mild gastric upset, and nothing like it was before. That really confuses me. So I wonder if the severity of the response is iwth the degree to which one adheres to the gluten-free diet... ie, a lapse after stricter adherence has more severe consequences and a lapse after loose adherence has less severe consequences. Since I never thought I needed to be gluten free, I have never adhered to the Gluten-free diet, other than restricting wheat products, and those are everywhere. now this was long winded but I am so uncertain about what is going on that I hoped some of you have had similar experiences and can comment. Thanks, Susan

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Lisa Mentor
Lisa
Posted

Susan:

Everyone reacts differently and you will not get the same personal experience from others.

I have , with great attempts, to be totally gluten free for well over a year.. I do know how difficult it is to be 100%, so there have been issues along the way.

I do know, for me, that the longer I go being gluten free, I do not react immediately (other do). I believe that it is the healing that I have achieved, and I do not show symptoms. But, that does not mean that I am creating damage. For me, it has to build up a bit for the symptoms to be very noticeable. When I ingest, gluten, I have a very dry mouth and have trouble choosing the correct words...that's a dead give-a-way for me.

You will not have a-cross-the-board answer to your question. You just have to know your own system to get you answers.

I hope that this has been helpful and I answered your question

miles2go Contributor
miles2go
Posted
I wanted to add a response to "Pinned/Pinner?z" but did not reply right. So I'm just going to ask questions here.. I too have been wondering about things like this term glutening? For quite some time I was sure I was sensitive to wheat, but that I was not celiac because of the negative test I had originally. So I, for at least two years religiously avoided wheat, not realizing that spelt, and other "wheat free" things that were glutinous were also bad. If I cheated on this diet I would feel poisoned, and have diarrhea. I don't recall becoming nauseous. My stomach would tighten up into knots, and then bloat, and it was terribly uncomfortable, to say the least. I had been having this kind of thing since I was a kid, however, and I think I just got used to having stomach aches. My mom always said it was "nerves." Earlier this year, I just got tired of dealing with the diet. And it did not really hit me as hard as it had in the past. In fact, it was only when I was at the doctor for another reason that I was describing feeling crummy (but not poisoned) and having stomach cramps etc., and it dawned on me (duh!) that it was the old wheat thing. the doctor, new doc in a new town was very astute and aware of celiac symptoms, etc. she mentioned this to me and I told her I was not celiac as I had been tested for it a couple of years earlier. Of course I had no idea what tests were done, and despite my repeated requests the previous medical clinic never sent out my records to the new doc. New blood tests have been "borderline" and in anticipation of the biopsy, I've been indulging on bagels - toasted with butter - and other non-gluten free goodies to my heart's content, with jsut mild gastric upset, and nothing like it was before. That really confuses me. So I wonder if the severity of the response is iwth the degree to which one adheres to the gluten-free diet... ie, a lapse after stricter adherence has more severe consequences and a lapse after loose adherence has less severe consequences. Since I never thought I needed to be gluten free, I have never adhered to the Gluten-free diet, other than restricting wheat products, and those are everywhere. now this was long winded but I am so uncertain about what is going on that I hoped some of you have had similar experiences and can comment. Thanks, Susan

Yes, yes, yes! And welcome, glad you found this wonderful place. I've never had a confirmed dx, only a high degree of atopy with wheat being a very big culprit and no endoscopy because I'd been so wheat-light for many years. I didn't know what to do with that so was wheat-free, but not gluten-free for a number of months. Since the beginning of 2006, I've followed a gluten-free diet and can say with much surety that the longer you go without gluten, the more pronounced your reactions will be in situations of accidental glutenings. It also takes some time for your gut to heal, so just because you don't feel better after the honeymoon period when you stop gluten all-together, your body will tell you when you're doing something wrong. It seems that we're all so programmed to go to the doctor when things go wrong and not all of them are as astute as yours.

What worked for me, and sure, I could get Enterolab testing when I rustle up the cash :ph34r: was trying the diet for a time. I don't think I need any more testing. Go buy Bette Hagman's "The Gluten-Free Gourmet Bakes Bread", if you're up for it and try the Touch o' Bean Bread, you'll never miss whole-wheat again, or better yet, try one of her sourdough recipes.

It is quite the blustery night here in Maine!

Margaret, searching, still searching for the raspberry doughnut recipe...

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