3 Y.o. Daughter Gluten-free For A Week--can She Be Tested?

[txmama]

My 3 year old daughter was diagnosed with reflux because of daily vomiting. Even after a Nissen fundoplication last year, she continued to vomit frequently and has only been able to eat small amounts of food at a time.

The doctor had ruled out celiac disease after a negative blood test and a not particularly successful trial of a gluten-free diet. The problem was that by the time we removed the gluten, she had stopped eating ANYTHING. In retrospect, I think maybe it was hard to see any results, because she had already developed such a huge aversion to food. Shortly afterward, we had to get an NG tube and enroll in an inpatient feeding program to get her eating again. As soon as she started eating again, the vomiting began. She was dairy-free, but otherwise had a regular diet.

Throughout this year of hellish vomiting, she would have a few good days where she didn't throw up, which seemed inexplicable. Then 2 weeks ago, she suddenly stopped vomiting and began to ask for food, to tell me she wanted to eat, stuff she's never done before. This lasted 5 days. I was looking for anything I could find to explain this. What was different?

I had bought that gluten-free Gorilla Munch cereal instead of her usual wheat-based--get this--because I had a coupon! And it just so happened that I didn't give her any pasta, etc. for meals. So, she had five good days, until I made pasta and lentil soup for dinner one night, and she threw up a few hours later. This took me several days to piece together, and as soon as I did, I stopped the gluten. It's only been 3 days (but no vomit at all since!).

We have an appointment with a new GI doc on Wed at Texas Children's in Houston. Will a blood test be more accurate at 3 than it was at 18 mo.? Will this short period of gluten-free (less than a week) interfere with the test? Should we ask for genetic testing? Should we expect the doc to give a lot of weight to the results of the diet, or are they skeptical about this?

Thanks for your help!

[debmom]

I wouldn't expect the doctor to give much credence to ancedotal evidence-- none of ours have-- but it is clear that the diet solved all of my daughter's terrible pain, etc. I would stick with the diet without question. I hope your new doctor is open to your interpretation of your daughter's improvement, but even if not, don't be discouraged. many of us have had to stick to our guns, and eventually prove that gluten is the culprit even if the tests say otherwise.

A new book about digestive diseases says that probably only 15% of celiac is caught by the current testing. In the next few years, better tests will show that many more people are gluten intolerant or have celiac than current testing can show.

[Genna'smom]

You have to fight for everything for your child.... My daughter at about 22 mos stopped eating and drinking altogether and ended up in the hospital and ended up wiht an NG tube and after 2 different hospitals they did a biopsy and it says she had early warning stages of celiac disease. She went gluten free in May of 2008 and now she is 3 and is eating better and has good days and has actually had 2 good weeks until today when she did not want to eat. My dr is telling me not to worry about cross contamination but others here are warning me that it could still be causing some of her concerns. Small, low weight and she has also been on a feeding tube for the whole year and had not slept through the night for her entire life.

OK back to your question - I know that the blood tests are very unrealiable and they only way they say is by biopsy or the change in diet and use that as your diagnosis. I am going to have her genetic tested (not covered by insurance ) to see if she has the gene that would make it so she has celiac disease. We had some genetic teting done on her when she was in my belly as her twin sister passed away from a genetic disorder so I really want to know.

Follow your mommy instincts, fight for what you feel is right and feel free to send me a private message if you want anything else answered.....

Bonnie

[lizajane]

i would really follow your instincts on this one. if she vomits when she eats gluten and does not vomit when she does not, i think it is already extremely clear what you need to do. my blood work was negative, but i ended up vomiting everything i ate for 2 weeks. it stopped immediately upon going gluten free. i started gluten-free before i got my biopsy results, which did indicate celiac.

the most important thing is that a doctor can't tell you what you can and can't feed your kid. (i mean... within reason! ha!) so even if the GIs all say she does not have celiac, you still don't have to feed her gluten. so just don't. she is better without it. so stay away from it.

[txmama]

Thanks for the encouragement. One thing I have going for me is that her dietary response is SO extreme. One day she vomits all day, the next she's vomit-free (on gluten-free). Hopefully, that will impress the dr, as I would like support and information from him (and not skepticism). I've written up the timeline ahead of our visit to go through with him.

My dh and I have already decided that continuing gluten for the sake of a diagnosis is out of the question given her reaction, and he can't stand the idea of putting her through endoscopy. So, we're prepared and decided on that front.

If there's anything else any of you can think of that we should know or consider going into the appt. tomorrow, I'd appreciate hearing it.

Carly