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JessicaB

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JessicaB Explorer

WELL... I HAVENT BEEN ON HERE SINCE JAN... I HAD POSITIVE BLOODWORK, THE DOC SENT ME FOR A ENDOSCOPY AND I WAS TOLD IT WAS NEG. SO I THOUGHT YEAH I DONT HAVE CELIAC. WELL I WENT BACK FOR A FOLLOW UP, STILL IN PAIN. THE DOC SAID I DEF HAVE CELIAC SINCE MY BLOODWK SHOWED IT, HE WANTS ME TO GET A ENTROSCOPY AND MORE BIOPSYS, UNTIL IT SHOWS POS. ANYONE HAVE EXPERIENCE? WHAT DO YOU THINK? IM GOING TO GEORGE MASON UNIVERSITY HOSPITAL TOMORROW....... HELP IM ABOUT TO GO TO BED AND NEED SOME ADVICE,


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Guest Robbin

Wow, I think they are giving you the run-around. I am fairly new here, but positive bloodwork is POSITIVE. I don't understand putting you through another biopsy. You probably had some healing or they just didn't take enough samples. I personally would not go through it and would stay off gluten. Positive bloodwork and positive dietary response is enough for most drs. Heck, positive dietary response is enough for a lot of people here, myself included. Maybe someone with more expertise will post here, but I would also check out what Dr. Fine says on the enterolab site--www.enterolab.com (not linked, you have to do a search-I am not too skilled at the computer) Look under FAQ Result interpretation. Even though you didn't have the blood work done by him, he explains a lot in that FAQ section and you will have a clearer picture of what you are dealing with than what I could tell you in a post. Take care & God bless. :)

Guest Viola

Jessica, I don't think there has ever been a false positive in blood work. Which means if your blood was positive you have Celiac Disease. From what I've read they are actually talking about doing away with the biopsy eventually, as the blood work is so reliable.

Guest nini

If you have positive bloodwork, you absolutely HAVE celiac. you do not need any more biopsies as they can ONLY confirm it, never ever completely rule it out.

I was dx'ed by positive bloodwork only. I never had a biopsy and never will. Your Dr. is giving you the run around. You DO NOT need your Dr.s permission to go on this diet and you ABSOLUTELY have celiac! (can I emphasise that enough?)

Go gluten free immedieately and forgo any more testing, you don't need it.

jerseyangel Proficient

Yes, I believe that with your positive bloodwork, you are Celiac. Why put yourself through any more testing? The best thing for you would be to make sure you're 100% gluten-free--checking everything you eat or use on your body. I hope you begin to feel better soon :)

zip2play Apprentice

Why is more testing necessary? I say, stick with a gluten free diet!

Monica

tiffjake Enthusiast
Why is more testing necessary? I say, stick with a gluten free diet!

Monica

Ditto!


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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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