What Do You Think About This...

[CMCM]

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.

[Guest nini]

If you have a blood relative that was diagnosed with Celiac, the odds of you having it are very high. At the very least you could be gluten intolerant. You could insist that your Dr.s run all kinds of tests for it, keeping in mind you have to be consuming LARGE QUANTITIES of gluten in order for them to potentially be accurate, or you could order the Enterolab testing for yourself... OR you could just go with your "gut" (LOL) and go ahead and go on the gluten free diet, but remember, in order for this to work you would have to be 100% gluten free, no cheating.

Not all celiacs are thin, in fact, there are a lot that are overweight, I am one of them. Inability to lose weight is one of the symptoms, so is everything else you described.

The thing with the diet is, You can go on the gluten free diet and give it a 100% effort for at least several months before you rush to judgment as to whether or not it is helping you. And if it doesn't help, you can continue to press your Dr.s to look for other things. The only reason you would need to continue to consume gluten was in you feel like you want to have all of the celiac testing done.

You do not need permission from anyone to try this diet. It is a very healthy diet and if it helps you, GREAT!

Also, some people don't always experience symptoms every time they eat something with gluten, BUT if they have celiac, they are still doing damage to their insides.

I believe Gluten isn't healthy for anyone.

[jerseyangel]

Hi cmcm, Yes, you can be overweight and Celiac. I've always been 10-15 lbs. above what I should be. Only in the months before my DX when I was sicker than I've ever been did I lose about 15 lbs. Re: nausea and dizziness--Those were the only symptoms I had for about 15 years. The Drs. always said it was due to my allergies . I was also anemic but that never struck a chord with anyone. I had a sensitive stomach for as long as I can remember but the bouts of nausea were very much like the ones you described. It wasen't until 2 years ago that the frequent and urgent D began along with some of the other symptoms of Celiac. I was not DX until June of this year. I believe that in my case, the nausea and dizziness were the first signs of celiac disease (as it was a persistant thing) and I only wish that it could have been caught then. All of those years that I gritted my teeth to get through life's moments that most people enjoy and look forward to. Especially since your mom has celiac disease, there is a posibility that you could, too. Your symptoms also could point that way. I agree with nini, in that if you want to be tested, do not stop eating gluten--it will skew the results. If you try the diet, do it all the way. Its not only a diet but a lifestyle.

[CMCM]

Thanks so much for the input. How about the length of time of the "reactions", if that's what it is. An hour or two here or there has been typical for me. Many incidences of feeling sick a couple of hours after dinner, for example. Today, however, after my whatever it was yesterday, I still don't feel so great, so this is going on for a good 12 hours now, although the really bad dizzy part was just a few hours. I'm not dizzy any more, but still feel a kind of very small, under the surface half sick kind of thing. I ate breakfast (egg & egg whites only), but really felt "off" enough to not want my usual cappuccino. This length of reaction is new for me. I also lack energy today.

TESTING: I didn't realize you have to be eating gluten, but that makes sense. Can you get by on the test by just having small amounts, to keep it in your system?

Also, is the testing a huge expense, and what is the consensus of the actual value of blood tests. anyway..I got the impression the results can be quite misleading. I'm wondering if it's even worth the expense of doing it. Is there some basic test to be done? Also, I saw mention of a mail order type test....is that the same thing you would likely get done locally? If I do decide to get a test, I KNOW it will be a matter of me telling the doctor what to order. No one ever seems to know about celiac disease.