Almost Like An Epidemic.

[chrissy]

we live in burley idaho-----and i only know of one other child in town with celiac, besides my three girls. (there must be more?) we see a ped gi in boise idaho---2 1/2 hours away. i talked to a mother from that area the other day who also goes to the same office we do----they see the nurse practitioner there. she was told that at that office they are diagnosing 2-3 kids a week with celiac---that it is almost like an epidemic,(except that it's genetic) i wonder how many places there are that are missing celiac in children because they don't have docs that are knowledgeable enough about it.

christine

[Guest nini]

I spoke with a pediatric GI doc once that said that there is so little that they know about Celiac right now, that up until now they were dependent on the classic presentation and therefore aren't even looking for it. Most Dr.s are told "this is very rare you will NEVER see it in your practice" and therefore they don't even consider it. I'm convinced that Celiac and Gluten Intolerance are at least partially responsible for the epidemic of obesity. Gluten is in everything, it has addictive properties and makes people crave more of it and therefore = obesity, this is just one example of a NON classic presentation of Celiac that most Dr.s won't even consider because they are only looking for underweight individuals.

I agree, it's almost like an epidemic. It's more prevalent than Diabetes, yet tragically under diagnosed.

[Annie/NM]

I just had a question. Does it have to be genetic? Do my husband and I need to be tested? Or are there cases where just a child can have it? We are still new to this. What specifically do we tell our Dr. to test for? I know the IgA and IgG right? Is there anything else?

[2Boys4Me]

It is genetic, but that doesn't mean that you or your husband have it. We went to a kids with celiac picnic a few weeks ago, and there were 3 families there where a child had it, but neither of the parents nor the siblings had it. Having said that, my husband, my older son, my mom and I were all tested and the tests all came back negative. I believe there are 5 blood tests in the celiac panel, but I don't know them off the top of my head. Ttg, IgA, IgG, and I think two others.

Please note that we did not do gene testing, just a blood test for celiac. I know that I have HLA B8 which is somehow related to celiac. I was told 3 HLA markers years ago when I signed up for a bone marrow donor program.

[taweavmo3]

I think that Celiac or gluten intolerance is probably way more common than the latest stats (1% I think?). Just in our family, my daughter is the only one who actually tested positive, but we have all had good results with the diet. My pediatrician frustrated me at our last check up.......he totally blew off the fact that Ben's eczema completely cleared up after going gluten-free, and the fact that he can now tolerate any and all dairy. His words exactly "I think he'd be fine on regular food, but he's healthy, so you can keep him on whatever diet you want". Damn right he's healthy.....the fact that my gluten-free kids didn't get so much as a sniffle this entire winter didn't interest him either. Apparently this too is just a coincidence, errrrrr. It's this way of thinking, by pediatricians who are the first in line to treat symptoms, that is going to halt any and all progression when it comes to celiac.

Sorry, didn't mean to vent on your post! I totally agree that tons of kids are being misdiagnosed, and SO many could benefit from the diet. I just wish the medical community would catch up already, that's the frustrating part. The doctor's office that you go to sounds great, but is definatley not the norm!

[Michelle108]

Chrissy who is your Ped gi in Boise?

[AndreaB]

I think that Celiac or gluten intolerance is probably way more common than the latest stats (1% I think?). Just in our family, my daughter is the only one who actually tested positive, but we have all had good results with the diet. My pediatrician frustrated me at our last check up.......he totally blew off the fact that Ben's eczema completely cleared up after going gluten-free, and the fact that he can now tolerate any and all dairy. His words exactly "I think he'd be fine on regular food, but he's healthy, so you can keep him on whatever diet you want". Damn right he's healthy.....the fact that my gluten-free kids didn't get so much as a sniffle this entire winter didn't interest him either. Apparently this too is just a coincidence, errrrrr. It's this way of thinking, by pediatricians who are the first in line to treat symptoms, that is going to halt any and all progression when it comes to celiac.

Sorry, didn't mean to vent on your post! I totally agree that tons of kids are being misdiagnosed, and SO many could benefit from the diet. I just wish the medical community would catch up already, that's the frustrating part. The doctor's office that you go to sounds great, but is definatley not the norm!

I agree that doctors are only trained to treat symptoms and not look for the cause. The big medical training facilities are tied to the pharma's. By the way vaccines cause major problems with the immune systems and can also cause many diseases because of that. I would be curious to know with the children that don't have hereditary celiac disease if the run down of the body by the multiple vaccines could be part of the problem.

[TCA]

Vaccines may be a trigger for some kids, but both my kids had symptoms before recieving any of their vaccines. We have opted to get the vaccinations. My daughter has a heart defect and has enough problems to worry about without getting any of the big sicknesses

As for the epidemic, I'm frustrated because I know so many people who fall into the symptom category of celiac, yet refuse to get tested because they don't want to give up gluten foods. One person is just about past going, but says she just couldn't do the diet. One family I know fits right into most of the symptoms by one member or another. They tried the diet and feel sooo much better, but don't think they have to be completely gluten free, even though I've explained otherwise. The mom said they're just not as sensitive as we are. Another family is really being helped by it, though. I guess you help who you can! We have family who see how much healthier the kids and I are, but don't want to know whether or not they have it. I just don't understand.

[AndreaB]

TCA,

I am going to have my whole family (except my infant son) tested by enterolab. We don't have any symptoms to speak of, I'm allergic. I just want to know and no matter what we do it's not covered by insurance. My husband wants to go gluten free no matter what. After everything we've read that soy and gluten can do to the intestine and the fact that my youngest son's eczema cleared up after I totally left off of soy and wheat makes him want to go gluten free. The sad part for me is that I used to grind my own grain and make my own bread. I'll be trying out different recipes. I know what you mean about family. My mom is willing to work with us but she's not too careful about cross contamination. My father lives in Arizona and comes up to visit twice a year. I was telling him about some of this and he stated that he wouldn't give up his food. It's sad to think that some people may die or have serious complications because of mis (or un) diagnosis, some by lack of knowledge and some because they refuse to give up some foods. My doctor was willing to run a blood test on me but since I don't have any symptoms I opted for just enterolab. I do have some eczema that's still a problem. I'm glad I found this forum, there is so much to look at and so many peope to meet!

Andrea

[chrissy]

michelle-----i saw your question when i was in seattle, but for some reason the computer at the ronald mcdonald house wouldn't let me on the boards.

the ped gi we see in boise is dr. henry thompson at "idaho pediatric gastroenterology, PA" we have been REALLY happy with him. he seems to have a really good reputation-----judging by the comments i hear other people make that know him or know of him. he seems to be right on top of all the newest info. we have found this with his knowledge on celiac, and when we originally started seeing him for my daughter's infant reflux.

christine