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What Do You All Think?


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My 84 year old mom has celiac disease. She nearly died because when it became full blown around 42 years ago, no one knew a thing about it. Doctors thought she "made up" her symtoms, that she was neurotic. She got down to 85 lbs. and the villi in her intentines were nearly gone. But she was lucky and met a doctor who knew about celiac disease and tested her. She felt her full blown celiac disease was triggered by her hysterectomy (trauma supposedly can trigger it???). Prior to that she had a sensitive digestive system, but nothing remarkable. Something like me, maybe.

I'm 56. My whole life, from infancy, I had a "sensitive stomach." But I've always thought I escaped getting celiac disease. At a point several years ago I was in such sad digestive shape, I thought there wasn't a darn thing I could eat. I felt sure I was lactose intolerant, and had very little dairy (I've never had much dairy, my whole life). Well....I really cut down on breads, eliminated almost all sugar, and ate very little dairy and all my symptoms really got a lot better. For awhile.

Occasionally, especially in the last year or so, usually a couple of hours after dinner I'll feel suddenly kind of nauseated and have to lie down. It usually goes away within a half hour to an hour and then I'm fine. About a week ago, I woke up around 2am with unbelievable nausea. I thought sure I'd throw up, but didn't. I didn't have D, but did have to go...several times. After about an hour my nausea just cleared and I suddenly felt OK and went back to sleep. Next day I felt fine.

Today was similar, but worse. About 5:30 pm I suddenly felt dizzy. And then nauseated. I had to sit down, and couldn't even lay down for awhile because that made it worse. Then I had to go again (no D, though), felt slightly better, but the nausea and mild dizziness went on for a good 3-4 hours. I still don't feel quite right (it's now 5 hours later), kind of exhausted feeling, but at least the nausea is gone and I finally could eat some chicken soup for dinner. I never did have a stomach ache or anything, mainly just very dizzy and nauseated. I was thinking about my diet since last night....although I only occasionally have something wheat any more, last night we went out to dinner and I had several slices of restaurant white bread. Today I had oatmeal for breakfast, then around 1:00 I uncharacteristically had 3 small slices of whole wheat toast/butter, and then about 3:00 I had a bear claw...a huge bakery one. This all started around 5 or 5:30 I think. So the crazy thing about today was aside from a 1/2 grapefuit, all I had today was grain and wheat stuff. I don't know why, but I really craved this stuff today. Usually I don't at all.

So I'm now facing seriously questioning that I could somehow be affected by celiac disease to some degree. I spoke to my mom, and she said some of what I described was similar to what she used to experience. But I've always felt to have celiac disease, wouldn't ingestion of wheat ALWAYS affect you? I have had SOME wheat items where I wasn't affected. The thing is, it hasn't been consistent enough to say for sure that wheat bothers me. Yet, I've had to give up my much loved wheat chex and other ww cereals because they ALWAYS give me huge bloating and gas. I just can't eat this combination any more. But a piece of bread, a cookie here and there, I don't always get an identifiable reaction. And I'm not overweight, but I can't drop my extra 20 lbs. very easily and I remember my mom got so thin, so if I don't lose weight how could I have this?

I'm just wondering if anyone here recognizes any of the symptoms I describe, or if I'm on the wrong track here. My experience today kind of frightened me. Is is this or is it something else, possibly? I just don't know where to go with this.

A couple of years ago I asked my GP for the gluten sensitivity test. He SAID he ordered it, and I supposedly got it when I got my cholesterol test done, but I never saw anything on the results that seemed to pertain to this. And this from what I read here, the blood tests aren't necessarily "truthful" anyway. I just don't know what to do here to verify anything.

Thanks for your input. :unsure:


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cornbread Explorer

Hello,

First of all, sorry you're going through this...

I used to have symptoms a lot like yours before I went gluten free. Massive waves of nausea but then nothing... I used to have to leave dinners, the movies, etc. convinced I was going to throw up. It would happens a few times a week - very often after eating but sometimes just out of nowhere, middle of the night, etc. Fun! :lol:

In your case, considering the family history, I would be really surprised if it wasn't celiac disease. I would suggest getting either a complete Celiac panel done, maybe seeing a GI specialist would be the way to go.

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