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nobeer4me

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nobeer4me Apprentice

I have been gluten free for a few months now. But latley I have had some

re-occouring symptoms. I was found to be positive in a blood test in one catagory out of six. My doctor said I should have a biopsy done on my small intestine to be sure. But I understand that being on a gluten free diet may give the test a false reading.

My symptoms are not in my digestive system, but rather a condition called errosive oral Lichen Planus, which has caused my gums to recead, and sores which seem to have trouble healing. I am still on medication(from a previous doctor) which is a steroid mouth rinse, which helped for a while.

When I went gluten free. things got a lot better, although I was still taking my medication at a fraction of the amount as before.

To sum it up: I am still gluten free, can't completely shake my medication.

And wondering if I should go back on gluten to get the biopsy done?

Just wondering If I really have Celiac, or is something else causing my trouble?


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KaitiUSA Enthusiast

Were you gluten free when you had your original testing done? Which test came back positive? The tTG and EMA are very specific for celiac.

If you want a biopsy you need to go back on gluten for a good 3 months, eating gluten heavily.

Could you be getting gluten in your diet somehow? Could you be getting in through products like shampoo? Or have you changed products too?

Were the symptoms getting better for a while and then started up again or have they never gone away.

Also, with celiac it may take alot of time for symptoms to go away. It took me 3 months to have significant changes and then a couple more months to get back to normal.

Hang in there and if you have any questions feel free to ask :D

nobeer4me Apprentice

My dentist was the one who originally told me about Celiac disease, and changing my diet may help. So I started avoiding gluten about a week before my blood test.

My Dr. said it wouldn't affect the test. I will have to call my Dr. to find out which catagory was positive. Its possible I may have some contamination, but I'm trying my best to avoid gluten. I didn't know that shampoo may have gluten. Does it just seep into you, since you obviously don't drink it? Here is something else that came back to me the other day. As a teenager I remember having some allergy tests done because my sinuses were bothering me at the time. At that time the DR. said I was allergic to wheat, rye, corn, chocolate, dogs and cats. We have 2 cats, and I am basicly living on corn. <_<

KaitiUSA Enthusiast

Shampoos and soaps and things like that contain gluten. What happens with shampoo is it just has a high chance of getting into your mouth while washing your hair.

With soaps...say you wash your hands with gluten containing soap and then prepare your food...now the food has gluten on it.

There are just alot of avenues that are possible with getting gluten in you.

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    • trents
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
      This article, and the comments below it, may be helpful:    
    • Scott Adams
      That’s a really tough situation. A few key points: as mentioned, a gluten challenge does require daily gluten for several weeks to make blood tests meaningful, but negative tests after limited exposure aren’t reliable. Dermatitis herpetiformis can also be tricky to diagnose unless the biopsy is taken from normal-looking skin next to a lesion. Some people with celiac or DH don’t react every time they’re exposed, so lack of symptoms doesn’t rule it out. Given your history and family cancer risk, this is something I’d strongly discuss with a celiac-experienced gastroenterologist or dermatologist before attempting a challenge on your own, so risks and benefits are clearly weighed.
    • Greymo
      https://celiac.org/glutenexposuremarkers/    yes, two hours after accidents ingesting gluten I am vomiting and then diarrhea- then exhaustion and a headache. see the article above- There is research that shows our reactions.
    • trents
      Concerning the EMA positive result, the EMA was the original blood test developed to detect celiac disease and has largely been replaced by the tTG-IGA which has a similar reliability confidence but is much less expensive to run. Yes, a positive EMA is very strong evidence of celiac disease but not foolproof. In the UK, a tTG-IGA score that is 10x normal or greater will often result in foregoing the endoscopy/biopsy. Weaker positives on the tTG-IGA still trigger the endoscopy/biopsy. That protocol is being considered in the US but is not yet in place.
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