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    • Scott Adams

      Frequently Asked Questions About Celiac Disease   04/24/2018

      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 is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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
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    How accurate are blood-antibody tests?*


    Scott Adams


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    There are two classes of antibodies seen in untreated celiac disease. Antibodies directed against a fragment of gluten called gliadin, and antibodies directed against a particular tissue in the body itself. The two main areas in the body which can be attacked by its own antibodies are the aendomysial (the covering of muscle), and the reticulin ( the framework for kidney and liver), but there are others.

    To conduct the test, 5ccs of blood is drawn from the patient, and the blood cells are removed. The gliadin test is usually an automated machine-read test, which means there is little room for interpretor error. However, currently in the USA there is no standard methods for conducting the test, or normal ranges for the results. The endomysial tests are more dependent on the experience and ability of a pathologist who looks at a pattern of staining produced by the patients serum on a slice of monkey esophagus. While this test is done in similar way in most labs, there are many differences in how the results are interpreted.

    How good are these tests?

    If all of the blood test results are positive a celiac disease diagnosis is 90% accurate. However, there are several circumstances in which the tests can be inaccurate. IGA and IGG are two different varieties of antibodies which are produced by most peoples immune systems. There is a different blood test for each of the antibodies. Of the two tests, the IGA gliadin and IGA endomysial tests are the most accurate. However, this test can become negative relatively quickly after going on a gluten-free diet (3-6 months), which can cause a false negative test result. The IGG is less specific, and can sometimes be positive in non-celiacs. Also, about 4% of celiacs have no IgA at all! For these reasons it is very important that both tests are done for an accurate diagnosis. The biopsy is still considered the "standard candle" to confirm a blood diagnosis, and give a 100% sure diagnosis.

    For all tests for celiac disease it is necessary that one is on a gluten-containing diet, or false-negative test results could be given. Blood tests may also be useful in following up a known celiac and confirm that the diet is indeed free of large amounts of gluten. Also, because of the lack of standardization, keep in mind that blood test results may not be directly comparable from one lab to the next.


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    Guest Ginger

    Posted

    This is crazy...'a slice of monkey esophagus'. I had no idea they were killing monkeys for this. Also, I'm not willing to get on a gluten diet just to have some doctor tell me that I have celiac disease. That's just too risky for me. Although I do like the information about having a gluten test to see the levels of gluten getting into my diet that I am unaware of. Thank you for the information.

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    About two years ago I had a celiac's test. I was told at the time it was negative. Come to find out, now they're saying I was positive for one of the antibodies but not the other. They're redoing the test. If I get the same result, should I push for some other type of test?

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    There's no better indicator for what we need than our bodies own reaction to foods. I came up negative for antibodies, although which ones I am not aware. But when I get gluten in my food by accident, I am acutely aware of it. The immediate reaction is terrible gut pain, bloating and gas and later on my face is mottled by acne and inflammation. Clearly, these tests, although a god send for many, are not always a clear indicator of what is best for our health (as evidenced by the lack of a celiac diagnosis in my case). Some who are experiencing these symptoms but do not come up with antibodies should either look into the biopsy or just try the diet and see what happens. My livelihood was too large a price to pay for the convenience of eating whatever I wish.

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    Guest Beth

    Posted

    I agree with Maria. It's not always so clear. My blood test came back positive but when they did the endoscopy there wasn't any visible damage to my small intestines, just severe redness (stomach & small intestines are suppose to be a pale pink color). The doc didn't even bother to take the biopsy. The doctors say that I don't have celiac but just an intolerance to gluten along with gastritis and lactose intolerant. If I eat anything with gluten/dairy I become so sick, you would think I have food poisoning. The doctors don't know much more about the disease then we do by researching it ourselves. They told me to be retested in a year or so, but clearly there won't be any signs because I am forced to eliminate gluten from my diet. I hope that with all the research they are doing on celiac disease, they can develop a more precise way to diagnose.

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    Very informative. I am going through a lot of G.I. problems right now and am having an upper G.I. done on Wednesday to try and find out what's going on. I cut gluten out of my diet about 3 weeks ago in an attempt to see if it would help. It HAS helped to some extent, but not totally. It DID eradicate my diarrhea issues, but not my pain and nausea (which could be cause by something else, I guess.) I am going to request that I be tested for Celiac Disease. I'm glad I read this though - I guess it means I need to eat a sandwich or some crackers or something the day before. Yuck. I DO miss the gluten foods - but have enjoyed being diarrhea-free. I accidentally ate something with gluten and sure enough, the trots came back. (sigh) Anyway - so I guess I'll eat a little gluten prior to the testing.

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    Guest Patricia

    Posted

    Very informative. I am going through a lot of G.I. problems right now and am having an upper G.I. done on Wednesday to try and find out what's going on. I cut gluten out of my diet about 3 weeks ago in an attempt to see if it would help. It HAS helped to some extent, but not totally. It DID eradicate my diarrhea issues, but not my pain and nausea (which could be cause by something else, I guess.) I am going to request that I be tested for Celiac Disease. I'm glad I read this though - I guess it means I need to eat a sandwich or some crackers or something the day before. Yuck. I DO miss the gluten foods - but have enjoyed being diarrhea-free. I accidentally ate something with gluten and sure enough, the trots came back. (sigh) Anyway - so I guess I'll eat a little gluten prior to the testing.

    If you're still having minor symptoms after eliminating wheat, try eliminating soy or soybean oil too. This can be tedious (read labels on everything - jar spaghetti sauces, salad dressings, soups, butter spreads, chips, microwave popcorn, cereal, Worcestershire, etc.) but worth it! An article my sister sent me four years ago saved me because I was still not 100% well until reading it.

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    Guest Michelle

    Posted

    My son tested negative to celiac, but it runs in my husbands family, and my son severely reacts to gluten. His Pediactic Gastro. said that they now know that not all patients with celiac will even have a normal IGA response. He said follow the symptoms, not the test results. He also said that when you have celiac disease or a gluten sensitivity, you often become intolerant to soy and dairy (at least for awhile) until your stomach can heal. So, if when you cut out soy it is not helping much, cut out dairy too, or do a Total Elimination Diet for awhile. It sucks, but will help you get to the bottom of all the intolerances (which often cannot be found via a test).

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    Guest Leticia

    Posted

    There's no better indicator for what we need than our bodies own reaction to foods. I came up negative for antibodies, although which ones I am not aware. But when I get gluten in my food by accident, I am acutely aware of it. The immediate reaction is terrible gut pain, bloating and gas and later on my face is mottled by acne and inflammation. Clearly, these tests, although a god send for many, are not always a clear indicator of what is best for our health (as evidenced by the lack of a celiac diagnosis in my case). Some who are experiencing these symptoms but do not come up with antibodies should either look into the biopsy or just try the diet and see what happens. My livelihood was too large a price to pay for the convenience of eating whatever I wish.

    I completely agree with you Maria!

    My results keep coming back negative, but if I eat anything with gluten my face breaks out horribly and the gas and bloating with stomach pain are unbearable!

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    Guest Valerie

    Posted

    I've been off gluten for six months now (and am feeling better). Now my MD wants me to do this bloodwork for celiac. She said three days of gluten beforehand--- does this sound like enough? Does anyone know?

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    3 days of gluten is NOT enough. You have to be on a gluten diet for three MONTHS before getting an accurate diagnosis!

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    Guest Meredith

    Posted

    Very informative! My one year old daughter just had the biopsy and endoscopy test two days ago We are still waiting for results!

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    Guest Paula

    Posted

    This article was helpful - to a point. My 6 year old daughter has had tummy issues her whole life. To make a short story we had her blood tested & her antibody results were so high-off the chart- that her pediatrician said a biopsy wasn't necessary. She has celiac...period.

    My husband has had the same symptoms nearly his whole life (that's why we ignored our daughter's for so long). He got his blood tested. His antibodies were also off the charts - and again we were told by his doctor that a biopsy isn't necessary. "he has Celiac".

    We were told by 2 different doctors that a biopsy wasn't necessary. But all the research I've read said that the blood tests weren't 100% accurate.

     

    Both my husband & daughter have been gluten free for 2 months now. My husband's digestive issues have all but disappeared. My daughter however, still has very loose stools, but she's only going once a day instead of several times a day. I"m torn between giving her system a little more time, or requesting that biopsy after all.

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    Great website for someone new to celiac disease. I just got my blood test results and think it says I do not have celiac Even though I still think I do and will begin a gluten-free diet. Results were (ttg)ab,iga <3; iga,serum 141. The thing that is throwing me is the iga serum.

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    False negatives and false positives don't bode well for someone with tendencies toward hypochondria. When I do the gluten elimination diet strictly I feel better but it could be a placebo effect. That's why the blood tests are appealing to me; so I can take my double-guessing self out of the loop, but if they aren't accurate enough to provide greater certainty that the elimination diet then what's the point? Well, anyway this article answered several questions for me including the need to go back on gluten prior to the test and your insightful comments provided a ballpark figure for how long to go back on before testing.

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    Does anyone else get rhinitis (stuffy runny nose and sneezing) during their reactions or is it strictly gastro-intestinal for you?

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    Does anyone else get rhinitis (stuffy runny nose and sneezing) during their reactions or is it strictly gastro-intestinal for you?

    I have been having terrible gastrointestinal problems. Had an ultrasound and blood work. Nothing turned up. Since, someone mention perhaps gluten is the problem. I cut it out for 3 days, and the tummy troubles are gone. I have had rhinitis all my life, post nasal drip all night long, been on allergy pills of every type. I am hoping with a little more time on the gluten free diet, this will be alleviated. Keep me posted on your end. PS - going today for the blood work for the antibody to gluten. I am hoping 3 days off of gluten will be ok for an accurate reading. Although, prior to my gluten free diet, I could barely eat anything...that lasted more than a month!

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    Guest Ashley P

    Posted

    This article helps a lot. I have gastrointestinal problems, dermatitis rashes that appear on my foot every 3-4 ish months, and geographic tongue. I'm more at risk for celiac b/c I also have Hashimoto's thyroiditis, but the one antibody test(IA-2) came back negative. I'm thinking my autoimmune disease might be affecting the test results, and am going gluten free to be sure.

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    This article helps a lot. I have gastrointestinal problems, dermatitis rashes that appear on my foot every 3-4 ish months, and geographic tongue. I'm more at risk for celiac b/c I also have Hashimoto's thyroiditis, but the one antibody test(IA-2) came back negative. I'm thinking my autoimmune disease might be affecting the test results, and am going gluten free to be sure.

    A biopsy of your rash may be all you need. They say it is 100% sure indicator for celiac. I'd ask your dermatologist about it.

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    Guest Dianna

    Posted

    This article was helpful - to a point. My 6 year old daughter has had tummy issues her whole life. To make a short story we had her blood tested & her antibody results were so high-off the chart- that her pediatrician said a biopsy wasn't necessary. She has celiac...period.

    My husband has had the same symptoms nearly his whole life (that's why we ignored our daughter's for so long). He got his blood tested. His antibodies were also off the charts - and again we were told by his doctor that a biopsy isn't necessary. "he has Celiac".

    We were told by 2 different doctors that a biopsy wasn't necessary. But all the research I've read said that the blood tests weren't 100% accurate.

     

    Both my husband & daughter have been gluten free for 2 months now. My husband's digestive issues have all but disappeared. My daughter however, still has very loose stools, but she's only going once a day instead of several times a day. I"m torn between giving her system a little more time, or requesting that biopsy after all.

    Paula - I found your comment to mean the most to our situation. My son was diagnosed with Celiac and also has "off the chart" blood tests for all 4 antibodies. The strange thing was that he is asymptomatic. I made the connection myself based on a tooth enamel defect that was found at the dentist office. We have all been tested (my husband, daughter and myself) and are awaiting the results. I am sure that I have it was well. Anyway, our doc was pushing the biopsy even though the blood tests were so compelling. We have chosen not to do that as my son just had his tonsils out and I do not want to put him through that right now. We have chosen to just eliminate the gluten altogether. I hope we have made the right choice. Did you ever have the biopsy done on your daughter?

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    This article was helpful - to a point. My 6 year old daughter has had tummy issues her whole life. To make a short story we had her blood tested & her antibody results were so high-off the chart- that her pediatrician said a biopsy wasn't necessary. She has celiac...period.

    My husband has had the same symptoms nearly his whole life (that's why we ignored our daughter's for so long). He got his blood tested. His antibodies were also off the charts - and again we were told by his doctor that a biopsy isn't necessary. "he has Celiac".

    We were told by 2 different doctors that a biopsy wasn't necessary. But all the research I've read said that the blood tests weren't 100% accurate.

     

    Both my husband & daughter have been gluten free for 2 months now. My husband's digestive issues have all but disappeared. My daughter however, still has very loose stools, but she's only going once a day instead of several times a day. I"m torn between giving her system a little more time, or requesting that biopsy after all.

    My GI doctor told me there is no way to diagnose just on the blood test. My doctor told me the same thing yours did. I was way off the chart as well...she told me I had celiac and to go on a gluten free diet. My GI doctor was very upset that she told me to go on the diet BEFORE I saw him. He said he HAS to do a biopsy to say I have celiacs.

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    Does anyone else get rhinitis (stuffy runny nose and sneezing) during their reactions or is it strictly gastro-intestinal for you?

    I get a runny nose as soon as I eat anything with gluten in it. I went on an elimination diet for 4 weeks because I was suffering from diarrhea, skin rashes, canker sores, gas, etc. The elimination diet cleared all of my symptoms. In trying things afterward, I got an immediate reaction to bread, so now I am off gluten completely.

     

    I don't think you need a doctor to tell you that you are gluten intolerant. They seem to have a protocol for "diagnosing" someone with celiac that includes the biopsy and tests, but the disease is on a continuum. Not everyone will test positive for every test, but if eliminating gluten helps, you should do it!

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    I am 19 and since I was little I have had stomach issues and chronic constipation. Now more recently I am having severe acne issues, and now am missing periods. I had a colonoscopy about a year ago and everything was fine. I went to a gynecologist and she tested my thyroid levels and my general physician said an antibody level was high but the thyroid function was okay. He sent me for blood work to test for celiac because I have a family history on my mom's side. He called with the results today and said "everything was normal". I am so frustrated because all he is doing is giving me medicine to help me go to the bathroom but they either make me sick or don't work at all, the only thing that works is Exlax. I want to push for an upper g.i. but I don't want to waste the time and money if i really don't have it. I don't know what else to do and it seems like since he can't figure out whats wrong he is just giving up. What do I do? Please help.

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    Does anyone else get rhinitis (stuffy runny nose and sneezing) during their reactions or is it strictly gastro-intestinal for you?

    Tim,

    I get a runny nose immediately when eating something with gluten in it- I mean within 2-3 minutes! It is quite amazing and annoying at the same time!

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    I think that a diet based on Raw food is the best for everybody. And sure for celiac people. Try it. It's natural and its according to our physiology. Blessings to all.

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    Dermatitis herpetiformis (DH) is a severely itchy skin condition that often starts abruptly, affecting the elbows, knees, buttocks, scalp, and back. It usually starts as little bumps that can become tiny blisters and then are usually scratched off. DH can occur in only one spot, but more often appears in several areas.
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    Zyana Morris
    Celiac.com 05/17/2018 - Celiac disease is not one of the most deadly diseases out there, but it can put you through a lot of misery. Also known as coeliac, celiac disease is an inherited immune disorder. What happens is that your body’s immune system overreacts to gluten and damages the small intestine. People who suffer from the disease cannot digest gluten, a protein found in grain such as rye, barley, and wheat. 
    While it may not sound like a severe complication at first, coeliac can be unpleasant to deal with. What’s worse is it would lower your body’s capacity to absorb minerals and vitamins. Naturally, the condition would cause nutritional deficiencies. The key problem that diagnosing celiac is difficult and takes take longer than usual. Surprisingly, the condition has over 200 identified symptoms.
    More than three million people suffer from the coeliac disease in the United States alone. Even though diagnosis is complicated, there are symptoms that can help you identify the condition during the early stages to minimize the damage. 
    Here is how you can recognize the main symptoms of celiac disease:
    Diarrhea
    In various studies conducted over years, the most prominent symptom of celiac disease is chronic diarrhea.
    People suffering from the condition would experience loose watery stools that can last for up to four weeks after they stop taking gluten. Diarrhea can also be a symptom of food poisoning and other conditions, which is why it makes it difficult to diagnose coeliac. In certain cases, celiac disease can take up to four years to establish a sound diagnosis.
    Vomiting
    Another prominent symptom is vomiting.  
    When accompanied by diarrhea, vomiting can be a painful experience that would leave you exhausted. It also results in malnutrition and the patient experiences weight loss (not in a good way though). If you experience uncontrolled vomiting, report the matter to a physician to manage the condition.
    Bloating
    Since coeliac disease damages the small intestine, bloating is another common system. This is due to inflammation of the digestive tract. In a study with more than a 1,000 participants, almost 73% of the people reported bloating after ingesting gluten. 
    Bloating can be managed by eliminating gluten from the diet which is why a gluten-free diet is necessary for people suffering from celiac disease.
    Fatigue
    Constant feeling of tiredness and low energy levels is another common symptom associated with celiac disease. If you experience a lack of energy after in taking gluten, then you need to consult a physician to diagnose the condition. Now fatigue can also result from inefficient thyroid function, infections, and depression (a symptom of the coeliac disease). However, almost 51% of celiac patients suffer from fatigue in a study.
    Itchy Rash
    Now the chances of getting a rash after eating gluten are slim, but the symptom has been associated with celiac disease in the past. The condition can cause dermatitis herpetiformis, which causes a blistering skin rash that occurs around the buttocks, knees, and elbows. 
    A study found out that almost 17% of patients suffering from celiac disease might develop dermatitis herpetiformis due to lack of right treatment. Make sure you schedule an online appointment with your dermatologist or visit the nearest healthcare facility to prevent worsening of symptoms.
    Even with such common symptoms, diagnosing the condition is imperative for a quick recovery and to mitigate the long-term risks associated with celiac disease. 
    Sources:
    ncbi.nlm.nih.gov  Celiac.com ncbi.nlm.nih.gov  mendfamily.com