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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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    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
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