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Diagnosing Celiac Disease

UPDATE: I’ve posted a more current and thorough page with information and resources regarding celiac disease.

Celiac disease is a an autoimmune disorder that causes damage to the small intestine, which can lead to malabsorption of nutrients. A genetic intolerance to gluten, a protein found in wheat, rye and barley, triggers this destructive reaction of the immune system”, according to Dr. Peter Green of Columbia University Medical Center, and one of the premier celiac specialists in the world. Like diabetes, it is an autoimmune disorder, not a food allergy that people grow out of.

Celiac disease is considered a multi-organ system disease, with a variety of symptoms and is particularly challenging to diagnose. According to Dr. Green, the following blood tests aid in the diagnosis of of celiac disease:

  • Anti-gliadin antibodies (AGA) both IgA and IgG
  • Anti-endomysial antibodies (EMA) – IgA
  • Anti-tissue transglutaminase antibodies (tTG) – IgA
  • Total IgA level

For test results to be accurate, a person must be consuming gluten, as these tests determine if you are a having an immune response to it. The simple blood tests above can be ordered by any internist. If your doctor won’t order the test, find one that will.

Celiac is currently one of the most under-diagnosed diseases in the country, according to the National Instititues of Health (NIH). Some docs estimate that 1% of the US population has this disease. There is currently no cure for celiac disease; a gluten-free diet is the treatment.


posted on April 17, 2007

  1. Found my way here thru your food photos on flickr. Your website is gorgeous and full of information. My 19 year old son was recently diagnosed (finally!) so I am gathering all of the info and resources that I can.

    Thanks so much,
    Marci

  2. Jones

    I would like to know how the increasing number of Celiac disease suffering people in the world is connected to the growing use of genetically modified organisms in modern agriculture. In japan many people started to get ill on a soja (soy) “allergy” – after the country was flooded with genetically modified soja. This allergy never was known before.

    Many new illnesses are reported from heavy-usage gmo zones like parts in china and south America- there are many strange “allergies” and there is everywhere the same companion to these new plagues – it is the use of GMO crops.

    As there is only a very, very little number of scientists working *independently* on these topics, not much information on these fields of science is generated or disclosed – there is much more work to be done here. We should start now as this work has to be done for the safety of following generations. The GMO industry is changing the foundations of life now and forever. We must take action now.

  3. Colleen

    Found your website and great recipes…thank you!!Been researching gluten sensitivity, egg, milk, etc., Found ENTEROLAB.com – will send you stool tests that helps diagnose gluten, egg, milk sensitivity and intestinal malabsorbtion. Dr’s at lab say blood tests can show false negatives. Ask your MD, or order yourself!!

  4. Colleen-

    I was on the phone with someone explaining all of the above at length just a bit earlier today. I think Enterolab is a great resource and have been hearing more and more about the problem of false positives with the traditional celiac blood pannel. One doc told me she thinks there is more than a 50% chance of a false positive from the celiac panel at traditional labs.

    Thanks,
    Elana

  5. Vee

    This is a question on diagnosing food allergens, including wheat intolerances. Can someone tell me what specific testing they found to be reliable? My 9 mo. old grandson has had skin rashes & other reactions(colic symptoms) to some of what his mom eats and passes through breastmilk to him, since birth. The mom has put herself and him on a gluten-free, dairy-free diet, and this has helped a lot. But she suspects other allergens based on how he has reacted to other foods her doctor has told her to start introducing in his diet. He is on a very limited organic food diet to supplement breast milk, and is healthy. But due to a recent ER trip for the baby getting an extreme case of hives after sipping a bit of her smoothie at a restaurant the other day, she is now petrified of adding any new food to his diet, until she gets some decent guidelines of what he is sensitive to. Her pediatrician is no help on this topic. Thanks for some ideas of where to go for help and answers.

  6. Lolita Hanks, FNP-C

    The tests mentioned above actually will only diagnose celiac in an individual who has damage to their small intestines. Celiac/gluten intolerance is a systemic disease and may not manifest itself in just the intestines. For every person with gastrointestinal symptoms there are 8 who do not have those symptoms. A new saliva test will be available soon for gluten sensitivity that has a higher accuracy rate. The test listed above (tissue transglutaminase) fall in their specificity/sensitivity rate to 31% in a person who does not have their gluten sensitivity affecting their intestines. I am one of those people.

    Doctors will mistakenly tell a person like me to consume gluten but, in reality in the presence of high antibodies, multiple autoimmune conditions and I just plain feel better without it, that is detrimental advice. I am just a person that does not have damage that can be tested at this point in my life.

    Hope this is helpful.

  7. Vee

    Thanks for the comment, Lolita H. Would you mind posting more info on the not-yet-available saliva test on this site once more info becomes available to you? Thanks.

  8. Lolita -Thanks for your comment; I realize that this page is not up to date with the latest information and have placed a message at the top of it (thanks to your comment) directing people to a page with more current info on diagnosing celiac.

    Vee -Yes, we would all appreciate more information on that test. I know Enterolab does currently have a saliva test for genotyping that is much more accurate than the blood tests provided above –the blood tests are said to have a very high false negative rate, which is what Lolita is talking about above.

  9. Lolita Hanks, FNP-C @ grossmanwellness.com

    The test is available through an integrative physician. You can find these types of physicians/providers by going to http://www.acam.org. The test was developed by NeuroScience and will be eventually available directly to the consumer from their site, http://www.neurorelief.com. This test is looking for anti-gliandin antibodies in saliva. This is more accurate as saliva is where gluten is first encountered internally by our bodies. I know some people cannot shake hands with some who has just touched bread or can’t inhale any flour without difficulty. I believe this will be a valuable diagnostic tool.

    An elimination diet is a good way to go for some folks who are not convinced that they will feel better or that continually ingesting gluten is a problem for them. I have used this in the past. Unfortunately, if a person has neurological symptoms it could take up to 9 months of abstinence from grains and in some cases casein to notice a difference.

    Hope this helps.

    Lolita Hanks

  10. Lolita,

    Thanks for stopping by and for providing additional info!

    Elana

  11. Lolita Hanks, FNP-C

    I am disappointed to announce that the saliva test is no longer available. There were some issues with specificity.

    So we remain at that same place before by utilizing blood tests that can have false negatives.

    If you suspect that gluten is not your friend, eliminate the gluten laden foods for at least 4 months and try a reintroduction of one gluten containing food each day. Keep in mind that dairy and gluten have delayed reactions up to four days.

    Record any symptoms including gastrointestinal discomfort like bloating, constipation, flatulence and/or diarrhea as well as cramping or other pain. Phlegm in your throat within 15 minutes of eating the offending food and needing to clear your throat will tell you that your body is not wanting the gluten. Fatigue is a frequent side effect of gluten containing grains. And sometimes headaches and emotional difficulties such as depression, panic attacks, and/or depression or any mood changes can be an indication that you are gluten intolerant.

    Sorry for the confusion on the test. It was such an easy test to use especially for children.

    It would be wise to have an integrative (utilizes conventional and alternative therapies to achieve and/or maintain health)practitioner for help with evaluating food allergies.

  12. I know it’s not easy to get a good diagonosis for this disease.

  13. Reese idol lash @ idollashscam.org

    Well can you diagnose it via blood sample or only stool sample ?

  14. David

    Here’s a company that provides saliva testing for celiac disease. The test is called the Food Intolerance Panel and covers other food intolerance items. My integrative dr. used this company to test my condition.

    Hope this helps.

    Company: Diagnos-Techs, Inc.
    http://diagnostechs.com/Pages/FoodIntolerancePanel.aspx

  15. RM

    My son had no other markers on his celiac test other than elevated IGa to gliadin. Does this mean likely celiac, or just gluten intolerance? He took the test at 2 yrs old, now 6 yrs. old. Diagnosed with hypothyroidism (mild) and PANS. His older brother has been GF for quite some time so I put them both on the diet, and most of the little one’s PANS symptoms are gone when he stays on his diet faithfully, and low dose of thyroid meds, antibiotics for the infections he has.

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