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Soccerspin Newbie

Hi - I am new here because I just recently heard of this disease - brief backgorund on me, had hiatal hernia surgery about 10 years ago, since then have had alopicia at times, folic acid deficiency, IC (bladder immune problem), have been dignoised with Meniere's Disease and Migrain Associated vertigo. Have had my esophugus stretched three times in the past 5 months for a stritcure at the hiatal hernia site. Recently had blood allergy test and it came back that not only am I allergic to Barley, rye, rice and buckwheat, I am allergic to everything outdoors, especially grass. Was sent to the Cleveland Clinic and I am undergoing testing, they mentioned celiac disease and as I researched I though OMG this is me........I have constant bathroom problems, what is your expereince, does this sound like celiac to you????

Thanks in advance for any opinions you can offer to me - : )


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Foxfire62 Newbie

First, request blood panel testing for celiac disease. Whether positive or negative, the only true way to confirm the disease is by a biopsy of the small intestine. Until the biopsy, eat as you have been...do not go gluten-free.

If the biopsy shows you have celiac disease, then you should go on a strict gluten-free diet. Recovery time varies, depending on age and severity of the disease but can take up to 2 years.

Good luck!

TrillumHunter Enthusiast

Biopsy as the only true way to diagnosis celiac is very questionable. Biopsy does not always catch the patchy damage that celiac causes. This is the focus of a number of researchers and isn't true in other countries that have a far better track record for diagnosing celiac. Biopsy is a tool to be used in companion with the celiac panel and a trial of the diet.

mamaw Community Regular

Hello & welcome

I just wanted to say welcome. Cleveland Clinic should be able to help you. Are you from the Cleveland area? There are several wonderful groups in Ohio... I'm from Western Pa....

LOts of good gluten-free shopping as well....

blessings

mamaw

Kim Hopkins Rookie

Hi there and welcome,

It's important to know what kind of blood test you had - you said "allergies." An allergy test is different than a celiac disease blood test. A true allergy is different from an intolerance - celiac is an intolerance. It is possible to be intolerant to gluten (celiac) OR to have a sensitivity to it OR to be allergic to wheat, barley, rye, and/or oats. The main difference is how gluten reacts in the body and what it does to the body, leading to your symptoms. Since true celiac disease damages the villi in the intestine, the biopsy is the go-to test for confirmation. If you have an allergy, it's a histamine reaction.

I hope you get your answers soon!

Kim, The Food Allergy Coach

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      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
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      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
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