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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 FREE Celiac.com email alerts   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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Negative Blood Test?
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14 posts in this topic

I just got back my results...

...and they are negative!

I was tested for trans-glutaminase.

I definitely have some kind of reaction to gluten...(vicious, evil painful C & D)

I feel so much better gluten-free. (no bloating, no skin rash, no vicious painful C & D)

My doc is sending me for a barium Xray of my stomach next...

her logic is that a specialist won't make it a priority to see me without some kind of positive test.

In the meanwhile I have been viciously ill this week, despite not eating anything gluten-y, except a sprinkling of shake n bake someone accidentally put on my chicken a few days ago.

Just wondering, I thought there was more than one possible antibody they can test for in the blood?

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These are the ones they're supposed to test for. Hope this helps.

There is a particular series of blood tests called the

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Was you still eating gluten at the time of your tests??

Another blood test sometimes used in the coeliac panel is the Anti-Endomysial (Ema).

Also a Total Serum IgA should be run because if you have a condition called IgA deficiency you do not produce enough anti-bodies to get a positive on the bloods.

Be aware you CAN have negative blood tests and still have celiac disease,( my husband had negative bloods but biopsies proved celiac disease)

Good Luck! :)

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My blood test was negative but my Dr insisted I do the Gluten Challenge Diet - and - bingo - DEFINATELY Gluten Intolerant. 8 months later can say that I think I have Celiac. I had a rash that disappeared after going gluten-free. I react to a TRACE of Gluten for days...... I have to eat gluten-free - I am not fussed that I never had an endoscopy. I am happy with treating myself and eating right. I have never felt healthier!!!

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I just got back my results...

...and they are negative!

I was tested for trans-glutaminase.

I definitely have some kind of reaction to gluten...(vicious, evil painful C & D)

I feel so much better gluten-free. (no bloating, no skin rash, no vicious painful C & D)

My doc is sending me for a barium Xray of my stomach next...

her logic is that a specialist won't make it a priority to see me without some kind of positive test.

In the meanwhile I have been viciously ill this week, despite not eating anything gluten-y, except a sprinkling of shake n bake someone accidentally put on my chicken a few days ago.

Just wondering, I thought there was more than one possible antibody they can test for in the blood?

Dear 123glutenfree,

I had negative blood tests several years ago. I found out recently from a holistic physician that negative blood work and biopsies can be misleading. She says I am Celiac. I have had digestive problems since birth. They got more severe as I got older. My doctor said she has had a handful of patients who were Celiac but testing was negative. If I even ingest a microscopic amount, I get violently ill from gluten.

Sincerely,

NoGluGirl

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I was just diagnosed two weeks ago after several months of illness. My blood work tested negative for Celiac's disease, but my biopsy was positive. I don't know all the details of this disease, but my GI specialist told me that the most accurate way to illustrate Celiac Sprue is through a biopsy.

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From a recent study reported in 'Gut'

Celiac.com 01/11/2007 � Researchers in Finland have determined that many patients with untreated celiac disease show the presence of intestinal endomysial autoantibodies (EmA), even in the 10-20% of cases where their serum EmA is negative. The researchers also believe that the negative serum EmA test in these cases is an indication of more advanced and long-standing celiac disease. Normally positive serum EmA is close to 100% accurate, however there is a subset of around 10-20% of patients where the test is negative even though they do have the disease. Dr. Katri Kaukinen and colleagues at the University of Tampere looked at 177 celiac disease patients and found that 22 were serum EmA-negative. A common theme among the 22 serum EmA-negative patients was that they were older and had more abdominal symptoms and other comlications that indicated a more advanced stage of celiac disease than their serum EmA-positive counterparts. Th research team found that even though the EmA antibodies could not be detected in the blood of these 22 patients, they could be detected in the small-bowel mucosa in all of them, and none were detected in 20 control patients. Dr. Kaukinen and colleagues believe that the use of intestinal EmA antibody detection should be used in seronegative individuals who are suspected to have celiac disease.

This study futher supports Dr. Kenneth Fine's use of IgA antigliadin antibodies in the stool to detect gluten sensitivity, and one has to wonder if the EmA antibodies, if detectable in the small-bowel mucosa, would not also be detectable in the patient�s stool, and if so would that not be a much better and more cost-effective way to perform such a screening?

Gut 2006;55:1746-1753.

So, it seems that 10-20% of celiacs will be negative on the bloodwork, and from this study, these people had more advanced celiac!

I have twice tested negative on the bloodwork, but definitely responded immediately to a gluten-free diet, I feel no need to go through a biopsy to tell me something I already know!

Melie

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From a recent study reported in 'Gut'

Celiac.com 01/11/2007 � Researchers in Finland have determined that many patients with untreated celiac disease show the presence of intestinal endomysial autoantibodies (EmA), even in the 10-20% of cases where their serum EmA is negative. The researchers also believe that the negative serum EmA test in these cases is an indication of more advanced and long-standing celiac disease. Normally positive serum EmA is close to 100% accurate, however there is a subset of around 10-20% of patients where the test is negative even though they do have the disease. Dr. Katri Kaukinen and colleagues at the University of Tampere looked at 177 celiac disease patients and found that 22 were serum EmA-negative. A common theme among the 22 serum EmA-negative patients was that they were older and had more abdominal symptoms and other comlications that indicated a more advanced stage of celiac disease than their serum EmA-positive counterparts. Th research team found that even though the EmA antibodies could not be detected in the blood of these 22 patients, they could be detected in the small-bowel mucosa in all of them, and none were detected in 20 control patients. Dr. Kaukinen and colleagues believe that the use of intestinal EmA antibody detection should be used in seronegative individuals who are suspected to have celiac disease.

This study futher supports Dr. Kenneth Fine's use of IgA antigliadin antibodies in the stool to detect gluten sensitivity, and one has to wonder if the EmA antibodies, if detectable in the small-bowel mucosa, would not also be detectable in the patient�s stool, and if so would that not be a much better and more cost-effective way to perform such a screening?

Gut 2006;55:1746-1753.

So, it seems that 10-20% of celiacs will be negative on the bloodwork, and from this study, these people had more advanced celiac!

I have twice tested negative on the bloodwork, but definitely responded immediately to a gluten-free diet, I feel no need to go through a biopsy to tell me something I already know!

Melie

Dear Melie,

Thanks for the info! I am not surprised by this at all! I was seronegative, but have had symptoms all of my life. I probably was born with Celiac activated in me. I had a biopsy, but I do not believe the doctors I had knew what they were looking for. The holistic physician I have now is more familiar with the disease.

Sincerely,

NoGluGirl

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I was another person with negative blood tests but a positive biopsy. I am not sure which of the blood tests they ran, but nothing turned up until the biopsy. I asked my doctor if I could see the specialist anyway, since even though I had negative blood tests, I had a lot of symptoms. I got an appointment, then a biopsy - postive diagnosis.

Fight for your health and your right to see a specialist if you want to!

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I was another person with negative blood tests but a positive biopsy. I am not sure which of the blood tests they ran, but nothing turned up until the biopsy. I asked my doctor if I could see the specialist anyway, since even though I had negative blood tests, I had a lot of symptoms. I got an appointment, then a biopsy - postive diagnosis.

Fight for your health and your right to see a specialist if you want to!

THIS is v interesting because it MUST MEAN that the figure quoted over here in Britain of 1 in 100 people having celiac disease is too low. So it could be 1 in 80 then? Or something like that. REALLY COMMON. And if that were generally accepted the side effects of the disease might get more attention/funding.

AND ithe problems on blood testing mean that it is going to be very very difficult to run accurate scientific studies of the incidence of, let's say particular cancers, amongst undiagnosed celiac patients. Because all those patients who are celiac with cancers are likely to have advanced disease that could be scuppering their blood tests. My brother is showing many of the signs of celiac, but his blood test was negative. He now has Chronic Lymphocytic Leukaemia, and IF (big if) he is also celiac going off gluten could help slow its progression - at least make him feel better, stop the other symptoms. But you can't suggest dietary restrictions to someone already underweight and suffering cancer without good evidence. And how the devil would you get the evidence if the blood tests don't work in advanced celiac?

Hmm. Back to those guys with point heads in the labs - please keep the minds within the pointy heads open. If that isn't too grotesque a metaphor.

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Another one here - hubby had negative bloods - positive biopsy

Quite a few around :)

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My two year old daughter had positive blood tests and an inconclusive biopsy. But after a few months of a gluten free diet she is doing great and putting on weight and no longer has chronic diarrhea. Her doctor says that as long as the diet challenge is working, who cares if the biopsy was inconclusive? He has diagnosed Celiacs Disease on the this information. I guess the thing is, it would be great if all tests were 100% in favor of a positive diagnosis, but it doesn't always work that way. If the diet works, go for it!

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I am worried as well about getting a false negative. I am still waiting on my celiac blood test results...However, I have read that those with hashimotos (I was just diagnosed last month) often test for a false negative. I had the blood draw done after being off gluten for only 3 days, so hopefully the antibodies were still high enough to get a result. I have a question...I have been off gluten for over a week now, and on a high dose probiotic. Should I still request a biopsy or will my intestines have healed up by this point? What is the best way to progress? I have a feeling the bloodwork might come back negative based on everything I am reading.

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I am worried as well about getting a false negative. I am still waiting on my celiac blood test results...However, I have read that those with hashimotos (I was just diagnosed last month) often test for a false negative. I had the blood draw done after being off gluten for only 3 days, so hopefully the antibodies were still high enough to get a result. I have a question...I have been off gluten for over a week now, and on a high dose probiotic. Should I still request a biopsy or will my intestines have healed up by this point? What is the best way to progress? I have a feeling the bloodwork might come back negative based on everything I am reading.

I don't know if anyone can answer your questions with any certainty, but I know that blood tests often show a "false negative." And - I am an example of this - you can have negative blood tests and intestinal damage. If you have an intestinal biopsy one week after going gluten-free, it is illogical to expect that total healing would have occured in that short of time. But two weeks, two months, six weeks...who knows?

And the other problem is that intestinal damage is patchy and could be missed. Make sure the doc takes at least 6 samples and, as we often advise, go gluten-free afterward regardless of test results and give it a good, serious test to see if it helps.

Good luck and good health!

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