Maybe Now Our Ped Will Test My Son.....

[wolfie]

Long story short.....found out I was possible Celiac on 1/9/2006...went gluten-free 1/13/06. Felt positive dietery response almost immediately. Gastro wanted to do an endocscopy with biopsy, but I was already gluten-free and wasn't willing to torture myself just to rule in Celiac, but not rule it out. Bottom line, I obvioulsy can't have gluten. Asked my kids Ped to test my 10 y/o son and 3 y/o daughter. He said that he didn't want to unless I had a firm diagnosis. I didn't see the harm in a blood test, but okay, whatever. No biggie at the time, b/c neither showed any obvious or even subtle symptoms. DS has had some intermittant stomach issues in the past and some mild anxiety issues too. Over the past few months, though, I see them getting worse. 3 out of 7 nights he is complaining about his stomach hurting; he has anxiety severe enough to make him nauseous/vomit if we are getting ready to travel and needs to be kept on a schedule or he is a mess; his grades have dropped through the year and I now suspect he may have ADHD. He has an appt. to be evaluated for ADHD on May 16th, however, the Ped had written a request for Celiac labs and put it on hold in his file. So, now I asked the nurse to release the hold and get the tests done so that we can rule this out or go forward with testing/treatment for him. I also need to make sure they do they whole Celiac Panel, not just 1 or 2 tests. I did some research here and saw some posts that may connect ADHD and Celiac or gluten sensitivity. I know that anxiety is related, as I have that issue, too. If our Ped won't test him now, I may blow a gasket! LOL! I don't see the harm in a blood test, really.

Anyone have any similar experiences?

Thanks.

[Guest elysealec]

Long story short.....found out I was possible Celiac on 1/9/2006...went gluten-free 1/13/06. Felt positive dietery response almost immediately. Gastro wanted to do an endocscopy with biopsy, but I was already gluten-free and wasn't willing to torture myself just to rule in Celiac, but not rule it out. Bottom line, I obvioulsy can't have gluten. Asked my kids Ped to test my 10 y/o son and 3 y/o daughter. He said that he didn't want to unless I had a firm diagnosis. I didn't see the harm in a blood test, but okay, whatever. No biggie at the time, b/c neither showed any obvious or even subtle symptoms. DS has had some intermittant stomach issues in the past and some mild anxiety issues too. Over the past few months, though, I see them getting worse. 3 out of 7 nights he is complaining about his stomach hurting; he has anxiety severe enough to make him nauseous/vomit if we are getting ready to travel and needs to be kept on a schedule or he is a mess; his grades have dropped through the year and I now suspect he may have ADHD. He has an appt. to be evaluated for ADHD on May 16th, however, the Ped had written a request for Celiac labs and put it on hold in his file. So, now I asked the nurse to release the hold and get the tests done so that we can rule this out or go forward with testing/treatment for him. I also need to make sure they do they whole Celiac Panel, not just 1 or 2 tests. I did some research here and saw some posts that may connect ADHD and Celiac or gluten sensitivity. I know that anxiety is related, as I have that issue, too. If our Ped won't test him now, I may blow a gasket! LOL! I don't see the harm in a blood test, really.

Anyone have any similar experiences?

Thanks.

[jerseyangel]

Kim--Please stick to your guns and insist that he be tested. I had almost the exact same symptoms as a child. I will never understand doctors' reluctance to even run the tests--if he is positive, it is imperitive he be gluten-free to avoid additional health problems in the future.

[Guest elysealec]

There was an article in "Living Without" in the fall of 2004 that had information about, if not written by Dr. Ivor Hill who is an expert in pediatric celiac disease. He is at Wake Forest Baptist Hospital in North Carolina. It directly relates anxiety being a main symptom of celiac disease in that particular age group. It also goes further in this particular issue and investigates a lot of food intolerances incorrectly diagnosed as ADD. I wish I knew exactly what issue, but I don't. I do know that I tested all of my children and my daughter who was seven and anxious came back with a positve TTg and a positive follow up biopsy. By the way, she showed no other symptoms and was off the chart growth wise. She was also being evaluated for learning problems. After being gluten free, all of that disappeared unless of course she accidently ingests gluten. I would search for some of those articles and have those in hand when you go to the ped. Mine was very understanding and said she had to look at celiac disease in a new light, not just in the classic fashion.

Good luck.

Vicki

[wolfie]

Thanks for the support, Patti. It helps to know that I am not over-reacting. I am sorry that you suffered for so long.

Vicki ~ thanks for that info! I will do some research and see if I can't find that article and print it to bring along with me. I don't think going gluten-free would be that big of a deal to DS as he is always after my gluten-free stuff and talks about going gluten-free all the time. I do think he would miss some of the stuff he wouldn't be able to have, but if he felt better, he might not care.

[jnclelland]

There was an article in "Living Without" in the fall of 2004 that had information about, if not written by Dr. Ivor Hill who is an expert in pediatric celiac disease. He is at Wake Forest Baptist Hospital in North Carolina. It directly relates anxiety being a main symptom of celiac disease in that particular age group. It also goes further in this particular issue and investigates a lot of food intolerances incorrectly diagnosed as ADD. I wish I knew exactly what issue, but I don't. I do know that I tested all of my children and my daughter who was seven and anxious came back with a positve TTg and a positive follow up biopsy. By the way, she showed no other symptoms and was off the chart growth wise. She was also being evaluated for learning problems. After being gluten free, all of that disappeared unless of course she accidently ingests gluten. I would search for some of those articles and have those in hand when you go to the ped. Mine was very understanding and said she had to look at celiac disease in a new light, not just in the classic fashion.

Good luck.

Vicki

I'm curious about this, because my 5-year-old son is extremely anxious, and I know that MY anxiety level has gone way down since I went gluten-free. My question is: how do you get a child that young to buy into a gluten-free diet without clear physical symptoms? I can see him understanding, "I eat gluten, my tummy hurts," but "I eat gluten, I feel anxious" seems to me like it would be a harder connection for a young child to make. And I have no illusions that I could *force* him to eat a gluten-free diet; there are way too many food situations (school, birthday parties, etc.) that I have no control over.

I also don't have any official diagnosis myself - except for a positive gene test - because I went gluten-free before it occurred to me to get tested. So I haven't really looked into getting him tested, because (1) I don't think he has enough symptoms for his ped to take the possibility of celiac seriously, and (2) I can't imagine how I could keep him on a gluten-free diet anyway. But I do suspect that his anxiety could be gluten-related, and I sure would like to help him get over that! So, any ideas?

Jeanne

[wolfie]

Jeanne......I have no doubt that if I do have to do it with my son that it will be hard. The one thing that I have going for me (and him) is that he does like lots of gluten-free items and is always begging to eat my food. The hard thing for him will be going without some of his current favs forever.....real pizza, double cheeseburgers at McDs (not that they are healthy, but he does like them every now & then) and twinkies. But there are enough recipes and substitutions now. It will be hard to control outside situations, but I will do the best I can if he has to follow this diet.

One thing my Ped said when I first asked him to test my kids is that in the very near future, Celiac bloodwork will become routine at well checks at a certain age (maybe entering kindergarten..can't remember). If you have a Ped that you can sit down and level with and ask him to run the bloodwork or go through Enterolab....that is my next option if my Ped won't do it now.

Good luck and keep us posted on your son too.

[AmandaD]

wolfie - I think it could be really important that you do follow up with a g.i. and have yourself accurately tested and biopsied. Celiac is not something to play around with - that's why it's important to get it diagnosed by a g.i. doctor. That g.i. doctor can then make sure your children are tested.

This is the experience I had with our pediatrician and my - she wanted the go ahead from the g.i. doctor to test the kids - and I agree. I think too many people "randomly" diagnose themselves with Celiac and go on the gluten free diet too soon before an accurate diagnosis is made.

just my opinion...

[Becky6]

I was dx'd finally at 18 with ADHD. I was on meds for ever then had a ton of other probs. I went gluten-free and all of my ADHD symptoms are gone! I was so amazed! My daughter who is 4 was already almost dx'd ADHD and then now that she is gluten-free there is no way she will get that dx. Even if the tests are neg have them go gluten-free and see what happens. As both my daughter and I were neg on the blood tests. But we clearly can't have gluten! We never did the endoscopy, I just didn't feel we needed it. Good luck!