New Here - Test Results - Questions?

[kvanrens1]

Our daughter, who was adopted internationally, has had a rough time over the past couple of years. She was very skinny and small when we first got her but she never seemed to "catch up." We got a referral to an endocrinologist (at my insistence) when she was 5 to investigate her lack of growth. She was diagnosed with idiopathic (unexplained)growth hormone deficiency. During her first round of blood work, she was checked for celiac disease and it was negative. She was too underweight to start growth hormone therapy so we were referred to a GI doc. More tests follow. She was found to have fat malabsorption (pancreatic insufficiency) which is pretty rare in children so they start testing for cystic fibrosis. That was negative (thank goodness). So more tests follow. During all this she is having horrible stomach pains, gas, constipation. She has an upper GI scope and they find acid reflux and severe lactose intolerance but her celiac biopsy is negative.

To make this short, after her GI doc said that she had "functional abdominal pain," I start into research overdrive and keep coming back to food. She feels worse in the afternoon than in the morning. We do our best to eliminate the lactose but the pain and GI issues are still there. Posted about her on an adoption board and several of the Moms said to look into gluten sensitivity and I find out about the lab in Texas.

We got her test results last week:

Gluten/Antigenic Food Sensitivity Stool/Gene Panel

Fecal Anti-gliadin IgA 163 Units (Normal Range is less than 10 Units)

Fecal Anti-casein (cow

[Skylark]

You can't tell anything about celiac one way or the other without fecal TTG. You mention a biopsy but did she have a full celiac blood panel including deamidated gliadin IgA and IgG? Do you have the biopsy report and how many samples did they take? If they only did one or two they can miss patchy damage. Also, many doctors fail realize that increased intraepithelial lymphocites can be an early celiac biopsy and they will declare the person healthy.

That particular anti-gliadin test comes up positive a LOT. Enterolab may still have her sample and I'd suggest you call and get them to run it since her anti-gluten is so high. Here genetics are equivocal because Enterolab doesn't test in enough detail. There is a kind of DQ7, called DQ7.5, that is a celiac risk gene but Enterolab does not test A chains in order for you to know.

Yes, gluten sensitivity can seem very much like celiac and it can be very severe. Take your daughter off gluten after you follow up on getting her the full celiac panel from her doctor (celiac tests won't work gluten-free). I'd suggest eliminating soy, dairy, and eggs initially but you can't tell whether she will tolerate them or not from low-positive fecal results. Soy and dairy seem to be particularly hard for folks with stomach trouble to handle. Tolerance can change once all gluten-caused inflammation settles down. You need to challenge them one at a time when she is feeling better and see how she feels. Challenge at least a week apart to allow time to see delayed reactions.

You can't "do your best" with gluten, by the way. It needs to be strict avoidance, with as much care as you can take to avoid feeding her cross-contaminated food. Medications, personal care products, and even toys need to be gluten-free. No macaroni necklaces or Play-Doh (it has gluten). She will need to bring her own food to school and understand that she cannot eat things other people give her. You will need toaster bags for her bread, a separate gluten-free cutting board, and separate condiments to keep her from getting crumbs in butter or mayo. You can't do something like stir gluten pasta and then gluten-free with the same spoon, or strain them in the same colander. Once she is feeling better you can start to sort out what her level of gluten sensitivity is, but many people with gluten intolerance have comparable sensitivity to people who are celiac.

[kvanrens1]

Thanks Skylark for your reply. I did not ask the doctors for specifics on her tests since they came out negative. She has had so many tests that I have lost count. When she got negative results, I just checked that off the list and moved on to the next possible explanation. I plan to get her medical records from her GI doc before we find another. During my last conversation with his office, I was instructed to ignore her pain.

I have called the Texas lab to see if we can do the other test. They are checking to see if they have her sample. It seems overwhelming right now. It has been such a long process to get to this point. I just want her to feel better and be without pain.

[Skylark]

Thanks Skylark for your reply. I did not ask the doctors for specifics on her tests since they came out negative. She has had so many tests that I have lost count. When she got negative results, I just checked that off the list and moved on to the next possible explanation. I plan to get her medical records from her GI doc before we find another. During my last conversation with his office, I was instructed to ignore her pain.

I have called the Texas lab to see if we can do the other test. They are checking to see if they have her sample. It seems overwhelming right now. It has been such a long process to get to this point. I just want her to feel better and be without pain.

Ignore her pain?

I suspect you have figured out her issue. It would just be a shame to take her gluten-free and have it work, then be in a position where you realize she never got proper celiac testing.

I might call the GI's office and ask them to fax/email the celiac panel results and biopsy report. They should be the ones to fish that stuff out of her records, not you. If there has not been a celiac panel, even her pediatrician can order it.

If you are stuck wading through the records yourself, you need to look for her biopsy report, and any testing for TTG (transglutaminase), EMA (endomysial), anti-reticulin, gliadin or gliadin peptide, and total IgA.