Newly Diagnosed And Concerned About My Kids

[Mrs. M.]

I was diagnosed with celiac disease a few weeks ago. I have mild symptoms consistent with celiac, and positive lab results. I am concerned about the risk to my kids, which I understand is empirically 10%. My oldest daughter, who is 8, just got tested. Her lab results (TTG IgA and IgG) were normal. This is the only testing recommended by her pediatrician. I am pushing for more, but want to get advice from this group so I can be better informed when talking to her doctor. I am concerned about her because she has frequent stomach pain, and an itchy rash on her knees and elbows. I know these things can be unrelated but in the context of my diagnosis they make me concerned. Has anyone had a similar situation of being diagnosed and trying to figure out whether your kids have it? I don't know whether to just be happy that for now they seem ok, or trying to push for more evaluation. Should I have her levels checked again in a few years? Have a dermatologist test her rash to see whether it is DH? Do genetic testing? Do nothing? If anyone has advice for me, please share. Thank you!

[Newbee]

My brother and I both have celiac disease but neither of my parents tested positive for it. I have no children but my brother has a daughter who has had stomach pains for awhile. I was concerned she might have the disease but she did not test positive on the blood test. For her they think it is just stress. But of course you know you can have the disease and still test negative on the blood test. I'll bug my brother to have her tested in a few years, but I know he will not put her through something like an endoscopy now. That's a hard decision to make. My brother is very laid back about having the disease but I am not. It is hard to know what the right thing is to do. Testing the rash seems like a less invasive test than the biopsy. You could also try putting her on a gluten free diet anyway and see if it gets rid of the symptoms. Some people are just gluten intolerant. It might help.

[Avalon451]

My daughter was the one who was diagnosed first, because of the itchy rash on her elbows and knees. The blood tests are notoriously inaccurate for children. I would ask for a referral to a dermatologist and have the rash looked at. It may be awhile before you can get in, so many derms are booked way out, but don't have her go gluten free before then, so the testing will be more accurate. The derm will need to test right next to a fresh breakout area. The skin biopsy is so much less invasive than the endoscopy, and anyway, your regular doc is unlikely to refer you to a gastroenterologist since her blood was negative.

After my oldest was diagnosed, we had blood tests on the younger two, and they were sorta positive and really positive, but we decided not to get them scoped.

Good luck!

[Mrs. M.]

Thank you for the advice. This fits with what I am thinking.

My daughter was the one who was diagnosed first, because of the itchy rash on her elbows and knees. The blood tests are notoriously inaccurate for children. I would ask for a referral to a dermatologist and have the rash looked at. It may be awhile before you can get in, so many derms are booked way out, but don't have her go gluten free before then, so the testing will be more accurate. The derm will need to test right next to a fresh breakout area. The skin biopsy is so much less invasive than the endoscopy, and anyway, your regular doc is unlikely to refer you to a gastroenterologist since her blood was negative.

After my oldest was diagnosed, we had blood tests on the younger two, and they were sorta positive and really positive, but we decided not to get them scoped.

Good luck!