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What Other Tests Should I Request ?


mum2girls

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mum2girls Newbie

Apologies for all the questions.   These are the tests the Doctor ran to rule out Coeliac Dissease for my 7yo,  would these not be considered definitive?  I don't even understand the results of these ones, if anyone could explain them to me, I would greatly appreciate it.    

 

Are there other tests which could provide more information or which are more accurate?   I am seeing a gastroenterologist on Tuesday,  but as we are based in the Middle East,  I am always a bit unsure about the competencies (medical & laboratory) and experiences in this part of the world. 

 

Thank you

 

Coeliac Screen :- 

 

Endomysial Antibodies - Negative

Tissue Transglutaminase  - 0.10 u/ml (ref range 0.0 -10.0)

Immunoglobulin A - 1.35 g/L ( ref range 0.34 - 3.05)

 

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nvsmom Community Regular

The immunoglobulin A (IgA) is considered to be a control test for celiacs.  It is a measure of the immune function in the mucosal linings of the body like the intestines and mouth.  For some reason, celiacs have a much higher tendency to be deficient in IgA - about 5% are IgA deficient whereas in the regular population it is more like 1 in 700.  IgA deficiency affects celiac disease tests by causing false negatives in IgA based tests such as the tTG IgA, DGP IgA and EMA IgA. Your daughters IgA is fine so IgA deficiency will not affect her test results.

 

Tissue transgluatiminase IgA (tTG IgA) is the most common test done.  It is very specific to celiac disease; somewhere between 91-99% of all positive results can be attributed to celiac disease. It is fairly sensitive but it can miss between 5 and 25% of all celiacs.  Bevause it misses a minority of celiacs it is smart to have other tests done.

 

The endomysial antibodies (EMA IgA) test is very similar to the  tTG IgA (both will indicate damage to the endomysial layer of the intestines) except that it tends to show more advanced damage.  It is tested as a titre, meaning they keep diluting it until the antibody is no longer detected.  The results will be written as 1:10, 1:20, 1:40, 1:80, 1:160, etc.  A positive is often a 1:40, which (I believe) is the last dilution the EMA IgA was found.  It is very unusual to get a positive EMA IgA if the tTG IgA was negative, but some celiacs do have negative tests in these - the sensitivity is around 80%.

 

The other tests yo want done are:

  • tTG IgG - some celiacs only have positive IgG based tests (even without the IgA deficiency) so this is good to run although many doctors don't agree for some reason
  • DGP IgA and DGP IGG - these are newer tests that are considered to be the best in detecting celiac disease in children. (deaminated gliadin peptides) I higher recommend having them run.
  • AGA IgA and AGA IgG - these are older and less reliable tests that were replaced by the DGP tests. I would have them run if you can't get the DGP test.
  • endoscopic biopsy - ensure at least 6 samples are biopsied; it can miss as many as 1 in 5 celiacs.

This report (pages 10-12) has great info on testing: Open Original Shared Link

 

This is an interesting article about why symptoms are not a great diagnostic tool in children:  Open Original Shared Link

 

Your only other option besides the tests I listed, as I see it, is to try the gluten-free diet. Those with non-celiac gluten sensitivity (NCGS) will feel better on the gluten-free diet but will have negative blood and biopsy tests.  Do not go gluten-free until you are satisfied that all testing is done.  A gluten-free diet will eventually result in negative celiac tests.

 

Best wishes.

mum2girls Newbie

Thank you very much for your reply and your explanation of the tests,  it is all so confusing.   Am seeing the gastro tomorrow and will request the lactose intolerance test,  similar symptoms.  

 

 

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    • trents
      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
    • Levi
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    • Lori Lavell
      The body reacts to all grain proteins in all grains from my observation. Call it Gluten, Gliadin, which is what they test for commonly, however, I am Celiac and react with dermatitis herpetiformis to corn and the glutenous protein in it is called Zein. They only test for Gliadin. Testing needs to be updated in my opinion. It only take a small parts per million to continuously create systemic inflammation. This is not productive to healing and all grains contain some for gluten like substance. It's called Molecular Mimicry.
    • Scott Adams
      Thank you for sharing your perspective. It's true that many grains contain proteins that are technically classified as "glutens" (like zein in corn and orzenin in rice), but it's important to clarify that these proteins are not the same as the gluten found in wheat, barley, and rye, which contains gliadin and glutenin. These specific proteins are the ones that trigger an autoimmune response in people with celiac disease. For individuals with celiac disease, the primary concern is avoiding gluten from wheat, barley, and rye, as these are the grains scientifically proven to cause damage to the small intestine. While some people with celiac disease or non-celiac gluten sensitivity may also react to other grains, this is not universal and varies from person to person. For most people with celiac disease, grains like corn and rice are considered safe and are widely recommended as part of a gluten-free diet. That said, you raise an important point about systemic inflammation and individual tolerance. Some people may indeed have sensitivities to other grains or find that eliminating additional grains helps them feel better. However, it’s crucial to differentiate between celiac disease, which requires strict avoidance of wheat, barley, and rye, and other conditions or sensitivities that may involve broader dietary restrictions.
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      I disagree, Lori. Gluten is a particular protein, not a category of proteins. It is found in wheat, barley and rye. Other cereal grains have proteins that resemble gluten to one degree or another but are not gluten. Gluten is gluten. Avenin is avenin. But yes, it is true, that informally speaking, some have used the term "gluten" to refer to the proteins found in these other cereal grains. It's like the term "kleenex" has come to refer to all facial tissues.
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