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New, And Lots Of Questions!

Guest momx3

By Guest momx3
in Parents, Friends and Loved Ones of Celiacs

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Guest momx3
Guest momx3
Posted

I'm Kate, brand new here, I've got three children, the youngest (13 months) of which I believe has celiac disease. I'm a nervous wreck right now, I FINALLY have a script to get the blood tests! I've had my son on a gluten-free diet for about 6 weeks (my idea....after a bad experience with wheat cereal, severe eczema, dramatic slow in weight gain, etc). My ped sent me to an allergist, turned up nothing. He also sent me to a dermatologist-who happened to have a nurse practitioner who worked GI at one point & is celiac herself-she ordered the test.

My biggest question is will my experiment with the gluten-free diet affect the results? He's been "glutenized" for almost two weeks now, after being gluten-free for six. (During which time, the eczema disappeared, diapers were normal & he gained 2 lbs!). I'm actually scared to take this test, worried that I will have somehow skewed the results. The tests ordered are the gliadin antibody assay, tissue transglutaminase IGA and iga immunoglobulin assay, are any of them particularly sensitive?

I believe that my other children and even I may also have it, so we will wait to see what comes back for my youngest. This has been quite a journey....

Thanks for any insight!

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tarnalberry Community Regular
tarnalberry
Posted

As the tests check for a reaction to the gluten, he needs to be having gluten for a while in order to see that reaction in the blood tests. He should be eating gluten for a few months. The fact that he's so young makes it tricky - the tests are unreliable in children under two years anyway. With being so young, having been gluten-free for six weeks is not insignificant, as he may well heal fairy quickly. Getting tested right now just isn't going to give you a good chance of having reasonable results.

There's a question of whether or not you need the blood tests, or can go off of dietary results (which are a valid diagnostic test as well). There's also the option of loading him up on gluten for another four to six weeks, doing the test, taking him gluten free, and trying again in two years or so if the tests are negative. It's a tough call, and there isn't an established 'right' answer, unfortunately

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    • Dr. Gunn
      Test interpretations

      By Dr. Gunn · Posted

      Exactly! Negative genetics can rule out celiac disease with close to 100% certainty. It takes tTg antibody testing and biopsy confirm the diagnosis in a genetically susceptible individual. 
    • trents
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      By trents · Posted

      What Dr. Gunn states is essentially true. It is a rule out measure. But be aware that to possess either of the two primary genes that have been identified with celiac disease (or both) doesn't necessarily mean that you have or will develop celiac disease. Almost 40% of the general population carries one or both but only about 1% of the general population will develop active celiac disease. It remains latent until triggered by some stress event which may or may not occur. So, there is a genetic component to celiac disease but there is also an epigenetic component. 
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      Have you had celiac genetic risk testing? A celiac genetic test is accurate with or without gluten in your diet. If you don't carry the celiac risk genes you can effectively rule out celiac disease for life. 
    • Scott Adams
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      By Scott Adams · Posted

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    • trents
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      By trents · Posted

      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
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