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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

What Could A Pos Blood Test, But Neg Biopsy Be?
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About a year ago, I was referred to a GI specialist due to IBS symptoms. I am quite sensitive to lactose but was being pro-active about my health and wanted to make sure there was nothing else wrong. The doctor routinely ran some blood tests and it came back as high in gliadin antibodies. (I'll have to check which test it was). Shortly thereafter I had an endoscopy to confirm the celiac diagnosis, but no abnormalities were found and the doctor said I wasn't celiac. My question is this though, what could the high blood test be if I have the symptoms, but no villious atrophy? Anyone know or have this same issue?

Thank you!

GEF

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I have high Gliadin IgA not IgG.

I didnt want a biopsy, since I figured nothing was going to be there anyway. My Ttg was also totally negative, but that is the one test they have decided to run every few years to make sure I dont have full blown Celiac. Right now the most information I can gather is that it could be developing.

Maybe someone with more experience has more to share.

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Guest jhmom

Hi GEF, welcome :)

There are several people here that have had positive blood test results and negative biopsy or vice versa. Heck... some of us had both negative test results and biopsy and still have Celiac/gluten sensitivity. Hang in there and I hope you get some answers soon!

Maybe someone will be along soon with more experience on the Celiac blood tests.

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Thank you for your support. I have read so many of the posts and it does appear that many are in the same situations.. and many without the support of their doctor. I threw out gluten intolerant & celiac diagnosis when my doctor threw it out after the biopsy was normal. Looking back, I find myself disappointed that he didn't recommend gluten-free, especially when I hear how much damage can occur to your body if you are intolerant or celiac. He gave me the IBS diagnosis, which I can't seem to come to terms with. I was reading on EnteroLab's (enterolab.com) site that even someone with gluten intolerance can suffer malabsorption and all the celiac symptoms. I'm considering another dr's appointment to check for the level of malabsorption. I'm a frequent sufferer of "cloud-head", have many intestinal symptoms (diar, bloating, lactose intol), have clouds in my fingernails, poor teeth enamel, am borderline underweight. I would have to say the thing that bothers me the most is the "cloud-head" (there's nothing like feeling like that when you're paid to work well and productively) and if a gluten-free diet would cure that alone, it would be 100% worth it for me. I'm 28 and had GI symptoms for at least 13 years. Fiance is in total support of trying the diet and I'm finally to the point (after a year) where I can accept this.

(positive gliadin test, normal biopsy, IBS diagnosis)

GEF

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I am in the same boat althought now they say "borderline celiac" whatever that means. I started to think about it and came to the realization that practically nothing healthy is made from wheat and there are better sources of fiber. Its all just "filler" food and if staying away makes me feel better than I am all for it.

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Guest jhmom

You are welcome; this is a great place for support!

I too suffered for over a year and was given the famous IBS diagnosis; it should be called the IDK syndrome (I don't know) lol. I knew after losing 40lbs in 2 months that there was something more to it than the doctors could find. I went through all the conventional testing, emptying scan, colonoscopy, upper GI w/ follow through, endoscopy and CT scan. All of these came back normal with the exception of the endoscopy, which showed "patchy inflammation", but it wasn't enough to make a dx.

I finally decided to get tested through Enterolab and the $200.00 I spent for the tests was WELL worth it. I tested positive for gluten sensitivity and malabsorption due to intestinal damage. I immediately started the gluten-free diet and could tell a difference within a couple of days.

It is great that your fianc

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I called a new GI this morning and got an appointment...this morning. Can you believe that? The new doctor was actually very kind and listened compassionately to my plight. I did find out that the test I took last year that was positive was IGG. It was 33, with normal levels below 20. Lucky me has lupus in the family so I have to get more bloodwork and a colonoscopy done :blink: Anyway, since the igg test above is about a year'ish old, the doctor ordered some new ones just in case. I really do wish I'd get better with something as simple (I know it's not simple) as a diet.... I'd just prefer that over meds! But, I'll let you know. Anyway, I'm just like everyone one of you that just won't be satisfied until they've exhausted being proactive about their health. When you know something's wrong, you know it's wrong.

Igg 33, everything else negative... who knows????

Gretchen

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This may be hearsay, but my local celiac support group has discussed this topic (positive blood test, negative biopsy) a LOT. I also discussed rationale for doing blood tests and biopsies with my naturopath when I first suspected I had celiac. Here's what I understand about the blood test/biopsy disagreement phenomena:

The blood test indicates gliadin antibodies, but the biopsy shows damaged small intestinal tissue or flattened villi. Unless the patient has 100% of their small intestine damaged from longterm celiac, it's very possible that the biopsy tube can MISS the damaged area. Then it takes chunks of healthy tissue, rather than damaged tissue. So biopsies can be pretty hit and miss, unless a large percentage of the small intestine is damaged from long undiagnosed celiac disease. If you read Dr. Fine's speech under the Enterolab topic on this board (or just go to the Enterolab site), he also discusses the problems with biopsies.

I hope that helps. BTW I did the Enterolab tests for my diagnosis, after my naturopath explained how hit & miss the 'old' standard biopsies can be. :D

BURDEE

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Burdee: Thanks for that explantion. What I dont get, most people with celiac disease have high IgG. Many have low IgA.

I have IgA only, and I have not found much literature at all to tell me what that really means. Dr. Fine said Gluten sensitivity only........

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That is pretty interesting. I have lupus in my family as well and my GI didn't look twice at it. Also diabetes. I am curious as to what your new doctor says.

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From what I've heard, having lupus in the family can mean your risks of celiac disease are also there as well. It's something about those auto-immune diseases that stick close together. The doctor requested some auto-nuclear test to pick up lupus today, so maybe that'll give some answers. Since the family history is there, it's worth checking out. Although the colonoscopy doesn't sound so pleasant, I'm wondering what it will show (I won't have that until 7/16). I have never had any GI issues associated with my stomach... just mid to lower intestinal. That positive IGG certainly makes me wonder. I just want to feel better though, I don't care what they have to test. Know what I mean?? And by golly, I won't stop until I get some answers... a trait that most of you here have... tenacity ;)

Gretchen

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Guest jhmom

I'm also being tested for Lupus too, I show many signs of the disease. There has to be a link between these two diseases'.

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Stacie,

I'd be interested to hear what your doc finds... I'll keep you posted from my end. I'm assuming I'll know something by early next week.

Gretchen

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Guest jhmom

Gretchen,

I will let you know when/if I am diagnosed and yes please do keep me posted on your results as well.

All this started for me in January 04 and I've heard sometimes it can take months even years to be diagnosed. When I started feeling bad with the fatigue and other things I researched it on the Internet and it all pointed to Lupus, I went to my doc and explained my fatigue to him and he ran the ANA and it was POSITIVE! I was sort of scared and excited at the same time (if that makes ANY sense) ;) . You see with all this Celiac stuff all my test came back negative but I knew something was wrong and then these new things started happening and at least with the positive labs the doctors knew what path to take and in what direction to look at.

Anyway, let me know what your test show.

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