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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

What Tests Should Be Done?
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4 posts in this topic

I've had all my children tested for Celiac, after I was officially diagnosed in December. They all came back negative, but my ped only did one test (and I cannot remember which one it was). I thought I read somewhere that there are several blood tests to confirm Celiac because you can possibly test negative, but still have it. I'm having 7 year old's thyroid checked next week and wanted to make sure I asked for additional celiac tests (if there are more than one). He still exhibits the signs and did much better on a gluten-free diet (that we started 2 months ago).

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If only one test is done it is usually the tTG IgA.  However, this test should be run in conjunction with a Total Serum IgA to ensure that the person being tested produces normal quantities of IgA antibodies.  If their IgA quantity is insufficient the test is invalid and IgG testing should be done.  If you are looking for the most sensitive celiac test, and the most specific for celiac, that would be the DGP, IgA and IgG.  It will pick up problems with gluten earlier than the tTG (which requires damage to have already occurred in the small intestine and which, though strongly indicative of celiac, can be caused by other problems).  The older AGA IgA and IgG are two other celiac tests, and the EMA (Endomysial Antibodies) is normally run if the tTG is positive (and is also very celiac specific).  None of these test results should be trusted as negative without testing the Total Serum IgA, an insufficiency of which is most often seen in celiacs.

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My kids tested negative too but two of them have problems with gluten so I removed it from their diet. My thinking is that it might be early in the disese for them so that they don't have intestinal damage that is causing a measureable autoimmune response, or they have non-celiac gluten intolerance - either way eating gluten-free works for them.

 

If the gluten-free diet is working for your kids, you might want to continue it for them. NCGI can cause real health problems (just no intestinal damage) if not treated so I thought it's probably better safe than sorry.

 

I've had thyroid problems in the past so my advice would be that when you see the doctor to have his thyroid checked, make sure you get copies of all blood tests. Doctors have a tendency to call thyroid labs normal if within range in spite of any symptoms the patient has... they did that to me and are doing it to my son. 

 

Anyway, don't let the doctors just request a TSH (which is a pituitary test really) but request a full thyroid work-up:

  • TSH (should be near a 1)
  • free T4 and free T3 (should be in the 50-75% range of your lab's normal reference range)
  • TPO Ab (should be very low, near a zero)

Sometimes doctors will simply request T4 or T3 which often results in a Total T4 or Total T3 test being done, these tests are not as helpful or give a really good idea of what is going on in the blood. The FT3 and FT4 show what is in the blood and are more accurate.

 

Sorry about the aside, I just get frustrated with doctors when it comes to the thyroid.  Best wishes.

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My kids tested negative too but two of them have problems with gluten so I removed it from their diet. My thinking is that it might be early in the disese for them so that they don't have intestinal damage that is causing a measureable autoimmune response, or they have non-celiac gluten intolerance - either way eating gluten-free works for them.

 

If the gluten-free diet is working for your kids, you might want to continue it for them. NCGI can cause real health problems (just no intestinal damage) if not treated so I thought it's probably better safe than sorry.

 

I've had thyroid problems in the past so my advice would be that when you see the doctor to have his thyroid checked, make sure you get copies of all blood tests. Doctors have a tendency to call thyroid labs normal if within range in spite of any symptoms the patient has... they did that to me and are doing it to my son. 

 

Anyway, don't let the doctors just request a TSH (which is a pituitary test really) but request a full thyroid work-up:

  • TSH (should be near a 1)
  • free T4 and free T3 (should be in the 50-75% range of your lab's normal reference range)
  • TPO Ab (should be very low, near a zero)

Sometimes doctors will simply request T4 or T3 which often results in a Total T4 or Total T3 test being done, these tests are not as helpful or give a really good idea of what is going on in the blood. The FT3 and FT4 show what is in the blood and are more accurate.

 

Sorry about the aside, I just get frustrated with doctors when it comes to the thyroid.  Best wishes.

I'm actually planning on getting his thyroid checked also. His TSH was checked recently because he was diagnosed with ADHD. It was 0.851 with the range being 0.3-6.0 as normal. I have Hashimoto's so I plan to get his antibodies checked. I'm wondering if he might be hyperthyroid since he is very underweight, cannot sleep, and very emotional (I read on that theses are common symptoms, as well as ADHD-type symptoms). I'm just trying to rule everything out before we give him meds for ADHD.

 

Thanks for the responses. I need to make a list to give his ped of the labs I want done. (Good thing I used to work there, so I can pretty much tell them what I want lol ).

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