Celiac Disease

My daughter is Type 1 and was tested 6 months ago for Celiac, by a blood test, and it came back negative. Does that mean she’ll never get it? Does anyone know? Are we always going to wonder that she might one day develop it because of the diabetes? She’s not showing any on the signs. I was just wondering how to take the negative blood tests results.

My understanding is that there are some genetic issues that make people more prone to develop autoimmune diseases. So when a person has one autoimmune disease, like Type 1 diabetes, they may be more likely to develop others like celiac disease.

But there are plenty of people with Type 1 diabetes who do NOT develop other autoimmune diseases. So it is good news that she didn’t test for celiac disease, and there isn’t any reason you should be worrying about it now unless, perhaps, there are other people in your family with celiac disease.

Hi April,
Here is another topic about Celiac Disease you may want to read:

Hope it helps,

No one in my family has the disease, so I hope that’s a good sign. I was just wondering if she was going to keep being screened for it at her 3 month clinic. I didnt know if anyone had ever been tested (negative) for it and then got it later, even though they didn’t so the signs. So many things to worry about… Thanks for the response, though!

Celiac disease is one of those eluse illnesses that is very difficult to diagnose. Unfortunately there are many false negative results with the blood tests, and even the biopsies. There are certain labs that specialize in interpreting the test correctly so that matters also. Biopsies are needed in several different areas of the intestines but if one of the lessions is not biopsied directly, the results could still be negative. Some doctors are more successful with finding celiac disease with the pill cam. That is a very small camera sent through the digestive tract and pictures are taken and can pick up diseased places that other tests may miss. Some people do not have symptoms of celiac even though they may have the disease. As long as your daughter is asymptomatic, she should be tested once a year but may need more than just a blood test. Hope this helps. An online celiac support group may have more answers too.

Hi April,
I am sorry for the worrys about celiac disease. My youngest daughter has it, but is termed only wheat, gluten and fructose intolerant. She is one number away from the diagnosis by blood test. But the biopsies we had done were positive. If your daughter has no symptoms then a once a year blood check should be good. I am very glad you have a doctor who is so caring and observant and is taking all precautions for your daughter. That is a major plus for both of you and i hope that gives you a big sense of relief.

Your daughter"s doctor screened her for celiac,will do periodically for that or if she develops the symptoms,not growing as expected or her blood glucose control is irrational though every thing is done as expected.If I suspect celiac and antibodies are negative,I will screen for total serum Ig A
Gluten free diet is not recommended without proof for celiac or food allergy or in Autistic children

OK, Well thank you so much for all the info. She has pretty good blood sugars since we’ve gotten on her pump(omnipod) so I hope nothing changes. But I know someday it will. Can’t wait for those puberty years:( But I think right know I’m just worried for nothing. But I do appreciate all the responses. I’m so glad I’ve found this website!
Thanks again,

It depends on whether they tested for antibodies and/or did the genetic test. My understanding that theoretically if the genetic test is negative, you are not supposed to be at further risk for celiac and do not require re-testing; if it’s positive, it doesn’t mean you will definitely get it, but you are at increased risk and should continue to be re-screened. That said, I’ve also heard folks say that the genetic test is not as definitive as it is said to be—I’m not an expert on that and don’t know though.

I tested negative on the genetic test shortly after my T1D diagnosis when having some GI problems (which ended up being attributed to my positive lactose intolerance test). No one has ever suggested I be re-screened for celiac given that, although I also don’t have symptoms that match up with celiac.