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sallyalewis

Celiac Or Gluten Intolerance?

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I'm hoping someone out there can help me answer a few questions.

I have been gluten free just over 4 months.

I started this on the advise of my doctor.

I was having my "yearly" checkup, but actually it was my almost weekly apt for a 2 yr migraine/sinus infection, combined with horrible joint & muscle ache. I was lethargic and had mouth sores. I had itching and a constant rash. (There's more, but I'll stop there!)

Now that I have been gluten free for 4 months, is there no way to be tested for Celiac Disease?

Do I say that I have Celiac Disease, or do I say I'm gluten intolerant?

I have many many allergies, hypothyroid, sleep issues, anxiety, and stomach issues.

Just need to know what to tell other people.

:huh:

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You are gluten intolerant. Welcome to Club Well- Fed ! :D

If you break out in another rash, you can get the skin next to it biopsied for DH. You can also get a genetics test, but that won't tell much other than you have a probability of developing the disease.

Otherwise, you'd have to re- gluten a large amount for a long time, and there is still no guarantee you'd get a positive blood test.

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You are gluten intolerant. Welcome to Club Well- Fed ! :D

If you break out in another rash, you can get the skin next to it biopsied for DH. You can also get a genetics test, but that won't tell much other than you have a probability of developing the disease.

Otherwise, you'd have to re- gluten a large amount for a long time, and there is still no guarantee you'd get a positive blood test.

I've been told that even if the rash surfaces while the patient is gluten-free the biopsy will test negative. So the only way to know for sure is a gluten-challenge.

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I'm hoping someone out there can help me answer a few questions.

I have been gluten free just over 4 months.

I started this on the advise of my doctor.

I was having my "yearly" checkup, but actually it was my almost weekly apt for a 2 yr migraine/sinus infection, combined with horrible joint & muscle ache. I was lethargic and had mouth sores. I had itching and a constant rash. (There's more, but I'll stop there!)

Now that I have been gluten free for 4 months, is there no way to be tested for Celiac Disease?

Do I say that I have Celiac Disease, or do I say I'm gluten intolerant?

I have many many allergies, hypothyroid, sleep issues, anxiety, and stomach issues.

Just need to know what to tell other people.

:huh:

Gluten-intolerance means you get symptoms if you eat gluten but don't get damage in the small intestines as celiacs do. What does your rash look like though?

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The rash actually looks just like the pictures that "Aeriel" posted in response to your pictures, Dani.

:huh:

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The rash actually looks just like the pictures that "Aeriel" posted in response to your pictures, Dani.

:huh:

With the same symptoms? I've been told by several board members that based on research, having DH is an indication of having celiac disease.

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With the same symptoms? I've been told by several board members that based on research, having DH is an indication of having celiac disease.

DH (dermatitis herpetiformis) is generally accepted as a definitive diagnosis of Celiac. My GI doc did a lame one-sample check during endoscopy for Celiac and no bloodwork, the sample came back negative (shocker!) However, based on my dramatic illness, dramatic improvement gluten free (sound familiar, OP?) and the horrible, itchy rash I get when glutened, my GP says I have Celiac. He is actually happy to not have an official diagnosis, at the time (8-9 yrs ago) he was concerned about possible problems with life/health insurance.

Sally, it will be easier for you when speaking with restaurant staff/friends/family to refer to this as Celiac disease. You can even explain all of the above, sometimes people are very interested. Or you can say gluten intolerant. The only people it really matters to are here on the board and your doctor.

Club well-fed! Hee! I like it!

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I tell people I have Celiac. Even had a doctor offer to officially diagnose it after reading my past medical history and my response to a gluten-free diet. I preferred not to have a "preexisting condition." Had a negative blood test 10ish years ago and they had dropped the issue. Never did a biopsy for it when they scoped. Like many, I figured it out myself and then reported back to the doctors who had their "ahh. That makes sense reaction."

Personally, Celiac vs gluten intolerant is a label for me. While one means GI damage and one means just sick, they both have the same treatment. No gluten. I see no logic in adding gluten and being sick for weeks just to spend money on tests to have a fancy official label. Plus, if you use gluten intolerant you become more lax. That pizza will make me a little sick for a few days, but no biggie.

Telling people you are gluten intolerant comes across as saying you are lactose intolerant, ie you get some gas and bloating. Explaining that with Celiac you get actual gut damage from the body's response to gluten helps them take it more serious.

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