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  • Scott Adams
    Scott Adams

    Celiac Disease Screening

    Reviewed and edited by a celiac disease expert.

      What's involved in screening and testing for celiac disease? Here are the basics of celiac screening.


    Caption: Image: CC--Free Images

    Celiac.com 03/05/2019 - Doctors commonly suggest celiac screening for anyone with a family history of celiac disease, or of disorders such as thyroid disease, anemia of unknown cause, type I diabetes or other immune disorders or Downs syndrome. Otherwise, patients are generally screened on a case by case basis according to individual symptoms.

    Genetic Testing

    Celiac disease is influenced, but not determined, by genetics. That means that susceptibility to celiac disease can be inherited, but the disease itself is not inherited. At least two genes, HLA-DQ2, HLA-DQ8, play a major role in celiac disease susceptibility. About 95% of people with celiac disease have the HLA-DQ2 gene and most of the remaining 5% have the HLA-DQ8 gene. A number of genetic testing services can tell you whether you have these genes. Some will test specifically for celiac genetics, others will test for celiac genetics as part of a general test. Genetic testing can help to indicate whether you might have a greater risk for celiac disease.

    Antibodies Point to Celiac Disease

    People with celiac disease have abnormally high levels of associated antibodies, including one or more of the following: anti-gliadin, anti-endomysium and anti-tissue transglutaminase, and damage to the villi (shortening and villous flattening) in the lamina propria and crypt regions of their intestines when they eat specific food-grain antigens (toxic amino acid sequences) that are found in wheat, rye, and barley. Antibodies are the specialized proteins the immune system uses to break down and eliminate foreign substances from the body. In people with celiac disease, the immune system treats gluten as a foreign invader and produces elevated levels of antibodies to get rid of it, causing symptoms and associated discomfort.

    Testing for Celiac Antibodies

    A blood test, such as anti-tissue transglutaminase and anti-endomysial antibodies, can detect abnormally high antibody levels, and is often used in the initial detection of celiac in people who are most likely to have the disease, and for those who may need further evaluation. Since the immune system of a person with celiac treats gluten as a foreign substance and increases the number of antibodies, elevated levels of these antibodies are a sign of celiac disease.

    Clinical Celiac Testing

    Typically, initial blood screening for celiac disease is done at a doctor’s office or at a clinic. Typically, such tests are ordered by a physician for patients who show symptoms, and/or a family history of celiac disease. If the results are positive, doctors will usually seek to confirm the diagnosis with a biopsy.

    Home Test Kits for Celiac Disease

    In the last several years, a number of accurate, reliable home test kits for celiac disease have come onto the market. Some of these kits deliver quick results in the home, while others require the consumer to mail the sample to a lab and receive the results later. Some mail-in kits use the same tests and labs as clinics do.
     
    Home test kits can offer convenience, confidentiality, and savings to consumers. They can also provide confidence for people, with or without symptoms, who believe they may have celiac disease. It’s not a good idea to use home test kits to diagnose celiac disease. As with clinical test results, positive results from home test kits should be confirmed by a doctor, and proper diagnosis and care should be initiated. 

    Confirming Celiac Diagnosis

    To confirm a diagnosis of celiac disease, your doctor will likely want to do a biopsy. That’s where they visually examine a the small intestine to check for celiac-related damage. To do this, your doctor inserts an endoscope, a thin flexible tube, through your mouth, esophagus and stomach into your small intestine. The doctor then takes a sample of intestinal tissue to look for damage to the villi, the tiny, hair-like projections in the walls of the small intestine that absorb vitamins, minerals and other nutrients. If the biopsy shows celiac-associated damage, the doctor will confirm the diagnosis and encourage you to adopt a gluten-free diet.

    Edited by Scott Adams


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    This is a good post. Thanks for sharing.

    Can you request a Stool Analysis from your doctor? I just was tested (blood test) and my result was 14. They told me 0-19 was the normal range. But a 14 means there were some antibodies towards gluten...

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    My daughter has had symptoms for almost a year now. Been to the daughter many times, all kinds of tests, and nothing. After reading allot from this site I think I will start with the blood test and if needed the stool sample. Thanks everyone for sharing.

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    I was told from my doctor that you can't be practicing a gluten-free diet before your tests prognosis because it will decrease the levels of your natural antibodies.

    This is true. In order to produce antibodies against a substance (or have high enough antibodies circulating to result in a positive test) the antigen must be present. In the case of celiac disease, the antigen is gluten. DO NOT go on a gluten-free diet prior to testing.

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    Mt daughter just had a scope done and she had a lot of lymphoid nodules and was just curious if this also was a sign of celiac? They took biopsy's of it but I just wondered if other people had this problem when they had a scope done!

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    I have celiac disease and I want to get my children screened. Does anyone know how they do this my daughter is 3 1/2 and I have a sneaky suspicion that she may have it as well.

     

    Is it just a blood test or do they do a biopsy as well?

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    Enterolab is excellent & a valid method. As stated above " A blood test, such as anti-tissue transglutaminase and anti-endomysial antibodies, can detect abnormally high antibody levels, and is often used in the initial detection of celiac." Unfortunately, blood test may miss up to 70% of gluten sensitivities & an invasive biopsy is almost always uncalled for because DNA gene testing can confirm results. If one has the Celiac sprue gene or 1 or 2 gluten sensitivity genes from their parents & are experiencing an autoimmune response to their sensitivity they most likely have damage in the small intestine. A Biopsy only tells on how much damage; why bother with an invasive procedure when it is not needed! You need to stop the damage ASAP & go gluten free.

    How are we to be tested? Everyone is saying don't go gluten free before testing? what the heck should I do?

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    What do I do? Go gluten free now? Before I have tests done, which test do I have the doctor do? I don't want to end up in the ER with abdominal pain again.

    Don't change your diet before. I suggest an Adrenal Stress Test (I got @ my doc office but you can get online). I'm diabetic & had weight gain, swelling, high blood sugar, nausea, tireness, & trouble sleeping. When thyroid tests came back ok my doc request ADT. It only cost $120. Found out I had Insulin Resistance (causing high bloodsugar), high cortisol at night (trouble sleeping), & gluten intollerance (all other symptoms). The AST is done at home over a 24hour period, you have 4 small viles of cottom, each marked with the time of day to take the sample. I placed the cotton under my toung to fully saturate it with saliva, placed it back in the vile, wrote the time on it & put it in the fridge until the last of the samples are completed. Then I put them all in the box provided with my payment & dropped it off at the post office. About 2-3 weeks later I saw my doc for the amazing results.

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    Information I've been looking for. And my daughter had this website 2 years ago. It was nice to be able to give her the site she lost and a website I and my husband will use.

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    Information I've been looking for. And my daughter had this website 2 years ago. It was nice to be able to give her the site she lost and a website I and my husband will use.

    This is a fantastic resource. Thank you everyone for offering your experiences however...I remain confused. What about those people who are forced to eliminate those key foods from their diet prior to having blood tests drawn in order to survive? The love of my life is wasting away; 207# down to 139#. Is anyone on or considering TPN? Please help.

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    This is a fantastic resource. Thank you everyone for offering your experiences however...I remain confused. What about those people who are forced to eliminate those key foods from their diet prior to having blood tests drawn in order to survive? The love of my life is wasting away; 207# down to 139#. Is anyone on or considering TPN? Please help.

    Butterfly,

    I hope you find this answer helpful even though I'm not to the point of considering TPN. Is she vomiting a lot? I ask because I was only diagnosed with celiac disease 3 days ago after a week long hospital stay in which I kept a total of 3 meals down. But I have been suffering from the vomiting, diarrhea, debilitating abd and back pain and other related symptoms for years with the doctors telling me it was a virus, that I had severe IBS and a lot of other crap that I'm beginning to believe is common to people suffering with this disease and you come to the point that the frustration that no one will really help you, the depression that this is, apparently, your life from now on and the way you can see that frustration and depression affecting your family and you just become consumed by the frustration and depression and nothing really matters but making the pain and the vomiting stop.

     

    Was she been diagnosed recently? I ask because I was thrilled to be diagnosed, sure that a few IV's and follow up pills would cure me or at least give me enough relief that I could return to my former life. I was once again in charge of my own life, that I, with enough research, planning and sheer strength of will could kick this diseases' butt. But my bubble was certainly popped when the dietician arrived to explain the disease to me in a way the doctor hadn't bothered to (the big coward). I felt that control slipping a little but my determation didn't waver. So, I got on the internet and the remainder of that control was not taken away so much as buried under the bombardment of conflicting information that left me reeling in confusion.

     

    And that wasn't even the worst part. The worst part was that most of my beloved foods (hot yeast rolls smeared with honey butter, bread pudding with caramel whiskey sauce, birthday cake with whipped icing, ok going to stop now because typing this is just making me angry and very, very hungry:) My point is that knowing you have to change the eating habits of a lifetime (and yeah, I know the above aren't really healthy choices but they are definitely yummy;) and knowing that these changes have to be permanent, that your very life may depend on it is sort of overwhelmingly terrifying. And having too many things that you absolutely love in your diet taken away is pretty darn depressing, especially when the people taking it away smile, practically pat you on the head and tell you that you will be MUCH BETTER OFF, health wise with this diet than your own eating habits.

     

    Right now, I'm just so completely overwhelmed with the conflicting opinions (medical and otherwise) that I'm almost afraid to eat anything. I mean a product that has wheat, barley or rye in it can get around the labeling law by simply listing this as malt flavoring and you just don't know if it is safe or not without contacting the manufacturer of that product. Seriously? Knowing that I would have to be reading labels for the rest of my life didn't exactly fill me with joy but knowing those labels might be misleading and I will have to be, basically, researching my food before it can pass my lips kind of makes me want to pull my hair out in frustration but, hey, maybe that's just me:)

     

    So far I've used my admittedly fledgeling experience to let you know how the process of being diagnosed has affected me and, I'm guessing, to a degree, a large portion of celiac patients. Now, I'm going to give you some advice as an RN with 20+ years of experience. A weight of 68 pounds is significant, especially if she is eating much at all. I don't know what time frame this weight loss occurred so I couldn't hazard a guess as to whether it is completely Celiac related or if depression is playing a part in it. What I can tell you with utter certainty is that this is a trend you should be concerned about and if your doctor has discussed TPN with you then he, too, considers it a problem. I guess, it all boils down to do you trust your doctor or not? If you do, then know, that this is a recommendation I wouldn't expect him to make lightly if he saw an alternative. If you don't trust him then I can see you doubting the validity of TPN and I would strongly recommend that you find one you can trust because this is a lifelong illness and the more people you have in your corner the easier it will be.

     

    I know this was a rather long winded reply but I hope it makes you smile even if it isn't all that helpful.

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  • About Me

    Celiac.com's Founder and CEO, Scott was diagnosed with celiac disease  in 1994, and, due to the nearly total lack of information available at that time, was forced to become an expert on the disease in order to recover. Scott launched the site that later became Celiac.com in 1995 "To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives."  In 1998 he founded The Gluten-Free Mall which he sold in 2014. He is co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.

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