Newbie

[Idiote Savante Goddess]

I've known for over a year that I was allergic to wheat and rice, and except for falling off the wagon occasionally, have been pretty good about not eating either. However, I've noticed that when I do eat wheat -- I feel hungover afterwards, and rice brings on a migraine (as do wine, changes in the barometric pressure, and eyestrain).

Now, I've been having migraines much more frequently, so I hied myself to the neurologist, who was very interested in my allergies (I'm allergic to wheat, rice, eggs, pears, plums, pineapple, yeast, all grasses, most trees, dogs, cats, dust, and mold) and then asked me if any one had ever ruled out Celiac disease. No one ever has. I've never had any of the bowel issues, but have had depression, dry skin, mental fog, and migraines for years and often thought "Gee, if I had diarrhea I'd fit the bill for Celiac". Now he tells me I may be one of those folks who only has neurologic symptoms.

So now, I'm waiting for the blood test results. I find this all very ironic as I just helped a friend go gluten-free about 3 months ago after she nearly died from anemia -- her celiac disease was misdiagnosed as idiopathic anemia and IBS.

Now, if I come back as not celiac disease -- I guess it's back to the drawing board. In the meantime, I'm on a low dose of Elavil to keep the migraines at bay.

[Guest thatchickali]

Okay, first of all welcome!

Second of all, not everyone who has celiac disease gets a positive bloodwork result. Especially if you are not consuming gluten at the time (since you are avoiding wheat it could be possible that you hadn't consuming enough gluten for it to show up) But if it comes back negative and the diet is working for you, you might not want to rule out Celiac Disease or a gluten intolerance.

Third of all, I have a friend who has only neurological symptoms which allows her to eat gluten without knowing it sometimes. She might just have a headache and she doesn't know if she got contaminated or has a random headache, so yes, it is possible.

Give the diet a try though it might make you feel better. Those migraines have got to go!

Ali

[April in KC]

Good luck finding out! My GI symptoms are not very bad, but my neuro type symptoms were getting really bad prior to going gluten free. Fatigue, lack of motor coordination, headaches, etc. All much better now unless I eat the wrong thing by mistake!

Have you studied the diet carefully to see what you would need to eliminate (cereals with barley malt, for example)?

[rock on]

hi.

I just wanted to chime in that my husband has had migraines since he was a young child. About 10 years ago he started getting them much more frequently and for longer durations (ie, days in bed in the dark) and he began feeling really ill all the time. They ran scans & tests didn't find anything. One doctor fortunately tested him for vitamin B12 and he was low (with an extremely high level of methylmelonic acid which, if too high, indicates a B12 deficiency). He started on shots (I had to learn how to do it because he doesn't really like needles) pretty frequently and then tapered down. It took a while, but the headaches began disappearing & now it's the rare occasion that he gets a migraine.

You might want to take a supplement, or get tested for this.

I believe that my husband's B12 deficiency was a sign that nobody picked up on that said that something was haywire with his digestion/absorption.

Now we are thinking that he has Celiac because of multiple health issues (psoriasis, arthritis, depression). He got a blood test & it came back negative. They were supposed to run a whole panel, but only did one of the tests. By the time we got the results, we had already started the diet.

I am doing it too because of gastric problems. Like you, my husband doesn't really have the gastric issues. But, after reading so many personal stories of how people are affected by gluten here on this board, we are pretty convinced that what's going on with him is some sort of issue with gluten (maybe some other foods too). Don't let a negative blood test convince you that you shouldn't keep Celiac or gluten sensitivity as a possibility. It seems that there's plenty of false negatives out there.

My suggestion to you would be to keep reading here, get checked out for B12 (you could be deficient as a result of Celiac) for your headaches and really consider doing the diet. We've been doing it for 2 weeks and I am noticing - to my surprise- that I feel like i have more energy & my head feels clearer. Placebo? I say 'who cares if it is?!'

My husband just said yesterday that his thumb (which had really been bothering him) felt different...less painful. nice.

good luck to you!! You're lucky to have come across a doctor who even considers Celiac from your symptoms. And I agree with Ali....those migraines have got to go!