Can You Have celiac disease But Be Ok Eating Wheat?

[Zoide]

This sounds crazy, but yesterday my gastroenterologist said that I might be able to eat wheat even though I have celiac disease! His reason is that my allergy tests came out negative for wheat...

Now, as far as I understand, you can be allergic to wheat but not have celiac disease. That much makes sense, as someone may react to chemicals in wheat other than gluten, but he/she may have no problems with the gluten itself. However, I don't think it works the other way around. If you can't eat gluten, then you can't eat anything that has gluten in it (and wheat very clearly contains gluten).

The doctor's explanation was something along the lines of: "Yes, but the gluten itself isn't what harms your intestine. It's after your immune system reacts to what you ate that it acts on the gluten and then makes it harmful to your body. In this case it's possible that your body doesn't react to wheat, so the gluten in that wheat won't do you harm. Meanwhile, it could be that you do react to barley, rye, etc. so that when you eat those your body does make the gluten in them harmful."

Isn't this complete nonsense? I would love my doctor to be right, but unless I'm missing something big I see no logic to what he's saying.

Can anyone chime in please?

Thanks!

[Zoide]

For the record, I definitely have celiac disease (I see there are some threads discussing celiac disease vs gluten intolerance, etc.). I've been diagnosed via blood tests and biopsy. I also developed osteoporosis (at age 18!) and later anemia, as well as ulcers in my mouth and throat. And diarrhea, of course. I've also been diagnosed with ADHD in the past (in case you are one of those who believe in an ADHD-celiac disease correlation).

The part about the allergy test refers to those doctors that prick your arm in 20 places with tiny needles containing allergens, and watch for red spots. The doctor also put some patches on my back containing actual pieces of allergens (meat, wheat, etc.) that I kept there for something like 3 days.

He said I was sensitive to beans, mites (like bed mites), yeast, and a little bit to peanuts. But he said that there definitely was no reaction at all to wheat.

[happygirl]

Celiac and wheat allergies are two entirely separate entities. Since you have biopsy proven Celiac, you have proof that gluten (wheat/rye/barley/oats) cause you harm.

I may find a new GI.

[Amyleigh0007]

WHAT?!?! Your doctor is nuts. Find a new one. Quick, go now!

[cat3883]

Did he get his medical license out of a Cracker Jack box? You need to find a real doctor.

[curiousgeorge]

Oh my, did the GI do the allergy tests? The thing that concerns me is there is no such thing as a little allergic to peanuts. YOu need to check that out too.

[lizard00]

Definitely find a new doc! As happygirl said, a wheat allergy and celiac are two completely different things. You can have one or both, but being allergic to wheat doesn't make you have celiac and being celiac doesn't make you allergic.

The sad thing is, when I read this, it didn't completely surprise me. I am fortunate to have a GI doc who keeps up to date with celiac and understands the various problems it can cause, not just gastrointestinal in nature. BUT, he told me that while he was in med school, they only touched on celiac during the pediatric rotation. And when he was working on specializing in GI medicine, they STILL only touched on celiac during the ped rotation. He said they just really don't spend any time on it, even though it is nowhere near as rare as they once thought it was.

Moral of the story: Find a doctor who didn't finish med school thinking it was all the information they'd ever need.

[mastiffmommy]

I am am negative for a wheat allergy but definitly gluten intolerant. My health has changed dramatically after cutting it out. Gluten is gluten and it is in wheat - until they genetically modify it out or something lol. Good luck! (and look for another Dr. - I've been through ALOT and the search is worth it to get a good one.)

[Zoide]

Wow! Thanks guys, I really appreciate all the feedback. As I suspected, I'll need to switch to a doctor who actually knows about celiac disease. I think lizard00 is probably right. There can be very good gastroenterologists (I think mine is decent for non-celiac problems) who know nothing about celiac disease. Then again, a specialist who knows little to nothing about something so important in their field is hardly what you would call "good"... Especially when he's ignorant yet he affirms BS so strongly!

Thanks all, I'll be switching docs now...