Doctor's Appt

[BensMom]

My 5 yo son went for his check up today. I had faxed the Enterolab results to him several days prior. He questioned the resulst which showed positive for both casein and gluten sensitivity. He also questioned the DQ 1 and 3 markers. He stated that since my son did not have the DQ 2 and 8 markers there was no way it could be Celiac. Of course his refulx as and infant then asthma, fine motor skill delay and now ADHD behavior is not enough proof. My 5 yo has had a a rough medical experience since 2 weeks of age. I explained that some research not only showed that the DQ1 marker was related to gluten sensitivity, but also neuro issues. Does anyone know what materials I can use to help his md reference to for help and support? Any comments would be greatly appreciated. I am getting so fustrated trying to get help for him with no support from any medical staff. I get the feeling everyone just wants to put him on meds for ADHD and leave it at that. It's hard for me to do when I am not convienced that is the fix. HELP!

[Nic]

Hi, I have read about other people on this board who were not DQ2 or 8 positive. I believe statistically it is like 90 some odd percent of people with Celiac carry one of those two. But it isn't 100% carry it so the change is still there. Also, maybe he isn't Celiac but instead gluten intolerant. The symptoms would be the same and so would the treatment. You could always go gluten free and see what happens.

Nicole

[gfpaperdoll]

Is your son gluten free & dairy free? You do not need a doctors permission to change his diet...

[kevieb]

i think the only research that claims that is the research done by dr. fine of enterolab----and he just doesn't seem to be able to get around to publishing anything to prove his work.

[EBsMom]

My 5 yo son went for his check up today. I had faxed the Enterolab results to him several days prior. He questioned the resulst which showed positive for both casein and gluten sensitivity. He also questioned the DQ 1 and 3 markers. He stated that since my son did not have the DQ 2 and 8 markers there was no way it could be Celiac. Of course his refulx as and infant then asthma, fine motor skill delay and now ADHD behavior is not enough proof. My 5 yo has had a a rough medical experience since 2 weeks of age. I explained that some research not only showed that the DQ1 marker was related to gluten sensitivity, but also neuro issues. Does anyone know what materials I can use to help his md reference to for help and support? Any comments would be greatly appreciated. I am getting so fustrated trying to get help for him with no support from any medical staff. I get the feeling everyone just wants to put him on meds for ADHD and leave it at that. It's hard for me to do when I am not convienced that is the fix. HELP!

I'm sorry you're in this position. It certainly ought not to be so difficult to get someone - an MD - to listen to you and to try to help your son. We tested my dd through Enterolab also. Like your son, she had DQ 1, 3 (subtype 6, 7.) She was already gluten free when we tested, which is why we didn't go the "usual" route for testing. The Enterolab results confirmed for me what her dietary response had already shown us - she was sensitive to gluten and casein. She's doing well gluten-free/cf and I've decided to take that as the ultimate "diagnosis" of her gluten problem. She had symptoms that fit with celiac disease - reflux, bloating, excessive flatulence, diarrhea, floating stools, pallor and decreasing energy level. All of that has mostly, if not completely, resolved in the last 2 1/2 months. I wish that we had a "formal" celiac disease diagnosis, but not enough to put her through a gluten challenge at this point in her life. I'm settling for a gluten intolerant label in my own mind, though I call her condition "celiac disease" when I need to - it's too difficult to explain the difference to most people. I've had a couple of moments of self-doubt since we got her Enterolab results, mostly centered around her gene test results. I was reading Dr. Green's "Celiac Disease, A Hidden Epidemic" and when I read the assertion that (paraphrasing here) if you don't have DQ 8 or 2, you don't have celiac disease, I felt very conflicted. I've given it a lot of thought since then, and this is what I've decided. Maybe my dd doesn't have celiac disease. I believe that she has an enteropathy, based on her high A-tTg level and her various GI symptoms. I believe that her enteropathy is caused by ingestion of gluten and casein, based on her anti-gliadin and anti-casein antibody levels, and even more, based on the fact that her symptoms go away when she doesn't consume these things. I think that, for practical purposes, that's all I really need to know. Whether she has celiac disease or a non-celiac disease GSE, the treatment is exactly the same.

I sure wish that Dr. Fine would publish his research, that his findings would be duplicated, and that his conclusions would come to be accepted by the mainstream of medicine and science. It would make things easier for a lot of us. We have no control over that, though, and so we have to work with a very imperfect system of testing and the limited knowledge that so many health care practitioners have of gluten sensitivity. If you think that your son benefits or may benefit from a gluten-free diet, then you may have to proceed without the endorsement or backing of his Dr. But, you can proceed *with* the backing of so many of us here that also do not have the "right" test results or a formal celiac disease diagnosis (or the helpful guidance of a knowledgeable Dr.) and still reap inumerable benefits from eliminating gluten (and other things) from our (or our children's) diets.

BTW, my ds has no GI symptoms, but has some puzzling behavioral/neuro type symptoms. I decided to put him on a gluten-free trial and he is doing wonderfully! He is more focused and clear headed than he has ever been in his life. I don't know of much in the way of research that backs this up - but there are a few things I've found. The research of Dr. Hadjivissilou (probably not spelled right) focuses on the DQ1 and neuro symptoms. I also read something by a Dr. Perlmutter about neuro effects of gluten - no mention of specific genes, though. I'll see if I can find some links, and post them if I do. Good luck to you!!!

Rho

[BensMom]

Thank you all for your support. I informed my sn's md about this site and explained that alot of the stories I read sounded very similar to my son. I have read some of the works of other mds mentioned below. He has been casien and wheat free for a year. The developmental delays and behavorial issues continued. He is now gluten free in every area of his life for the last two weeks. What I find most interesting is that at 5 yo he doesn't question it and appears to enjoy the foods he can eat. Since last year at this time he has gained 5 lbs. Not bad or a failure to thrieve. Thanks again for the support. I wish the medical world would catch up to see that not everyone fits the same marks.