Gluten Free For Two Months Now

[Emily35]

Hello, I am so glad that I found this forum. I have been recently diagnosed with Celiac and I have been following the gluten free diet religiously. However, I had my blood work repeated 2 months later, and all my numbers are still high, even though they are a little lower. Could it be that I am not responding? From your experience, is contamination a big problem? I mean, do i need to sterilize everything that comes in contact with gluten or just soap and water is enough? Another question i have is this: I had my son tested for celiac, and his pediatrician ran a test on him checking for deamidated gliadin antibodies and the results are a bit high but still within a normal range.

IgA 1.9 (range 0-10)

IgG 7.9 (range 0-10)

his pediatrician is saying that it is within the range and nothing else needs to be done. But I am so worried!!! He has asthma, he is very short, has multiple allergies, and his numbers are on the higher side. What do you think I should do? Should I push for more tests? Is anybody familiar with this deamidated Abs test? is 7.9 really normal?

thanks a lot in advance!!!

[GlutenFreeManna]

Hi, I don't know much about the tests, but CC (Cross-Contamination) could definitely be a problem, especially if the other members of your household are not gluten-free. Also what do you typically eat? If you eat a lot of processed gluten-free products you run a higher risk of CC. Gluten free just mean that they tested it and it contained under the legal limit, but those products could still contain a very, very, very tiny amount of gluten (different amounts depending on where in the world you live). If you are super sensitive you may have to cut out all processed gluten free grains. Also as far as "feeling better" have you cut out any foods besides gluten? Many here cannot tolerate other foods as well. The most common foods seem to be dairy and soy, so you might consider eliminating those as well, at least until your body has had more time to heal.

[Skylark]

I've seen folks on this board say their blood tests took longer than two months.

As for your son, the blood test is negative and deamidated gliadin is one of the better blood tests for celiac disease. You could push for a biopsy, or try the diet on him first. It is possible for people who are not celiac to still respond well to a gluten-free diet, especially if they have an affected first-degree relative (you!).

[Emily35]

Thank you all for reply!!! Yes, I think I was eating gluten-free packaged food, and I guess now I cannot trust anyone... I try to cook as much as possible now, so hopefully my tests improve....

Thanks again!!!

[LDJofDenver]

It took me awhile for levels to come down. I thought I was being so careful but I was getting a lot of cross contamination, and eating a couple things that I thought were safe and turned out not to be. Sigh. It's a process!

From what I've read children can often have false negatives on their blood work, so I wouldn't totally rely on that. Sounds like you are being mindful of other possible symptoms. Here is a link to University of Chicago Celiac Center with information on current tests used:

Open Original Shared Link

Hopefully that will help guide you.

I wish my son (and me, too!) had been diagnosed earlier. Could have prevented years of damage.