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Doubts About Tests


mom2lucas

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mom2lucas Rookie

Hi! My 2 year old son was recently diagnosed a celiac through a biopsy, but his blood tests were negative. He started the gluten free diet almost a month ago and we are now seeing some improvements. However, we were waiting on our blood tests, because even though we didn't show any simptoms, my son's doctor ordered them anyway since this is an hereditary disease. We did IgA, Anti-TTG and Anti-endomysium, and they were all negative :huh: So, where did my son get it from? I know blood tests aren't reliable in kids, but I thought they were in adults, and even though we don't have any simptoms I guess my gallstones and psoriasis could be blamed on the celiac disease. Do you think this panel of blood tests is reliable or should we have the genetics tests done? Thanks for any input. :)


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psawyer Proficient

The genetic factor alone does not create celiac disease. Many people have the gene without ever developing the autoimmune reaction.

It is generally understood that a trigger of some kind is needed to activate the disease in a person who is genetically susceptible. Obviously, gluten is also required for the reaction to occur--that is why the gluten-free diet works.

The trigger is usually something that puts stress on the immune system, such as an infectious disease, surgery or pregnancy/childbirth.

fedora Enthusiast

False negatives happen in adults too.

I have exzama. It is definately linked to wheat for me. I had to figure that out on my own.

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      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin and low vitamin D. I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
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