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Celiac Disease Screening

Celiac.com 02/08/2007 - 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, doctors may suggest routine screening. Otherwise, patients are generally screened on a case by case basis according to individual symptoms.

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 & Diagnosis

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 testing.

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.

To confirm the diagnosis, your doctor may need to do a biopsy, that is, microscopically examine a small portion of intestinal tissue to check for celiac associated damage to the small intestine. To do this, your doctor inserts a thin, flexible tube (endoscope) through your mouth, esophagus and stomach into your small intestine and takes a sample of intestinal tissue to look for damage to the villi (tiny, hair-like projections in the walls the small intestine that absorb vitamins, minerals and other nutrients).

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29 Responses:

 
an unknown user
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said this on
29 Oct 2007 10:24:10 AM PST
This site is extremely informative and helpful for a newcomer. Thanks.

 
Lucinda Crim
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said this on
24 Nov 2007 12:38:05 PM PST
I was diagnosed with Multiple Sclerosis in 1993 and I'm a R.N. who became disabled unable to continue working and I was put on SSDI. I got divorced and then re-married in 2001. My step-son HAS AUTISM and my husband is diagnosed with ADD. So I read Dr. Shari Lieberman's book and I decided to start my family on a Diary Free and a GLUTEN-Free Diet. I was a Dietian Major before. I was a Nursing Major in College. So I have had this interest in diets and how they affects us. So we have taken out dairy products already. So just need to add Gluten to things to remove from our diet. Ive removed sugar and chocolate already because of it's affect it had on me. Thank You for your time. I'm always open for suggestions.

 
Karen Adam
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said this on
10 Jan 2008 11:12:11 AM PST
I believe the serum test and the biopsy to give many false negatives. There is a new test designed by Dr. Harry Delcher in Atlanta GA that is quite accurate. I believe it to measure antibodies in a stool sample.

 
Karen Schmidt
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said this on
05 Oct 2008 10:58:10 PM PST
I was just diagnosed via a stool sample. I was told that blood tests can result in false negatives, where the stool test isn't accurate.

 
Lorraine
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said this on
09 Jun 2009 4:19:04 PM PST
Information is very helpful and informative.

 
Kim Grant
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said this on
26 Jun 2009 8:38:08 AM PST
Did you say the stool test is or isn't accurate. We just ordered the test kit for $394 for Enterolabs and would like to know if this is a valid method of testing.

 
Sensitive Bud
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said this on
29 Oct 2009 5:45:21 PM PST
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.

 
Sandra
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said this on
24 Mar 2010 7:14:05 PM PST
My daughter had the blood test and tested negative. She did have a gene for celiac sprue and one for gluten sensitivity on DNA testing. On stool testing, she was found sensitive to wheat. She then had a food panel done, but had been on a gluten free diet for two months and again tested negative for a wheat allergy. I am getting confused on what constitutes a "good" test for this condition.

 
Cinderfin
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said this on
03 May 2010 2:43:52 PM PST
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.

 
Jillian
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said this on
13 Aug 2011 7:27:20 PM PST
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.

 
kaycee
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said this on
25 Jan 2012 4:56:24 AM PST
How are we to be tested? Everyone is saying don't go gluten free before testing? what the heck should I do?

 
Robin Neudorfer
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said this on
16 Aug 2010 6:43:39 PM PST
This is still a confusing subject, because the anecdotal evidence is not in line with the "research".

 
Beverly Buxton
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said this on
05 Oct 2010 7:12:40 AM PST
I 'm looking this information up for a DEAR friend of mine,she is fadding away & I AM VERY concerned about her.

 
wheat intolerance
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said this on
07 Nov 2010 10:59:38 AM PST
This is a good post. Thanks for sharing.

 
Doug
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said this on
19 Nov 2010 7:35:31 PM PST
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...

 
susan gray
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said this on
08 Dec 2010 2:43:00 AM PST
Very informative

 
Christina
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said this on
05 Feb 2011 3:37:22 PM PST
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.

 
tasha
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said this on
29 Sep 2011 8:44:50 AM PST
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!

 
jeff
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said this on
13 Dec 2011 10:57:44 AM PST
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?

 
kaycee
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said this on
25 Jan 2012 4:59:22 AM PST
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.

 
Jendy
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said this on
12 Feb 2012 1:38:26 PM PST
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.

 
Debbie
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said this on
29 Mar 2012 10:53:28 PM PST
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.

 
butterfly
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said this on
16 Apr 2012 6:01:30 PM PST
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.

 
Teresa
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said this on
27 Apr 2012 1:43:05 PM PST
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.

 
Tara
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said this on
08 May 2012 8:51:25 PM PST
Extremely helpful.

 
Sue
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said this on
25 Jul 2012 1:20:08 PM PST
This is outdated. It doesn't talk about the newer deamidated gliadin peptide (DGP) antibody test. Things are changing rapidly, please update. Also, I would suggest more details like a table of what results of various tests mean in terms of interpretation, and also ideally info on when you need to get an endoscopy/biopsy and when you don't. Thank you!

 
Davinderjit Singh
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said this on
11 Nov 2012 2:20:59 AM PST
I am 44 years old. I was suffering from diarrhea, weight loss and anemia for a long time. My weight was 48 kg (5.10 feet height) and my HB was 8.0. My doctor advised me for ttg- anibody blood test in 2005. It was positive, so I started the gluten free diet. After six months, my weight was 85 kg, HB was 14.00 without any medicine. now my weight is 90 kg and my HB is 14.0. I am trying to lose weight. I am eating Maize grain chipati and sometimes rice. I got good information from your website.

 
Ann
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said this on
19 May 2013 2:51:06 PM PST
What do you do if you have been on a gluten-free diet for four years but didn't get diagnosed "officially" by a doctor? When I told my doctor that I hadn't eaten wheat in 6 weeks and my migraines, of which I was having about 23 a month, had all but gone. He said "don't eat wheat." I didn't think to have a test done. He did test me a year before I stopped eating wheat for high levels of inflammation in my body. He didn't know what caused it and that is when I started doing research and stumbled upon gluten-free/celiac disease. I suffered from debilitating migraines for years and found that they were triggered by wheat (even trace amounts or "processed in a plant with wheat") and MSG. The migraines just got worse and worse as I got older. Just wondering what to do now if I am considering the tax deduction aspect or anything else that may require a diagnosis. Will doing a test even see anything at this point?

 
Luana

said this on
27 Jun 2013 5:34:55 PM PST
The latest event I have been having was inflammation of veins, and bottom of heart inflammation again. My Sister had low iron and we started immediately cutting gluten out of our diets, and the fog my brain has been in is finally disappearing and I am feeling new day by day.
My adult son has suffered too. I am sure my mom who died of undiagnosed weird ailments at age 66 was celiac at a worst case. I am sad I wish she knew why now. I am gluten-free for life. My age is 45. Woman.




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