Totally Frustrated With Doctors!

[zappalizzie]

This is my first post, but I am sooo frustrated I'd like to vent. My 5 year old son was diagnosed 2 1/2 years ago with Celiac Disease. Recently he has been complaining of severe stomach pain, so I took him to the doctor to see if we could get something for the spasms. I told the Doc. that I was trying to determine where he might have picked up gluten, he is in kindergarten and maybe he picked up a crumb or two from another kids cookie. The Doc. then informed me (in a very patronizing tone) that it would take more than just a few mere crumbs of gluten to hurt him. I began to argue the issue, but it was impossible. God, don't they teach these people anything? Any advice on how to deal with these idiots?

[Guest nini]

Any advice how to deal with the idiots? Ummmm ignore them! OR print out all the information you can find about cross contamination and all it takes is one molecule, blah blah blah... most Dr.s though will not want to accept ANYTHING that you've printed off the internet, so maybe a copy of Dana Korn's book about Kids with Celiac... lots of good info there.

You are going to be hard pressed to change their mind. The only thing you can hope to do is educate them. But be warned that most will NOT be open to being educated by a patient or a patients mother.

I have a daughter in kindergarten and I know how challenging this is. At the beginning of the year I printed out all kinds of handouts for the teachers, school nurse, principal and even the cafeteria staff, even though I have no intention of her ever eating the meals the cafeteria prepares. I provided her teachers with safe pasta noodles, and play dough for the entire class for enrichments, and I made them VERY aware about keeping after crumbs from other kids snacks. At snack time my daughter has her own snack bin that she chooses from, except for the days when she brings home the class snack bucket, and then she provides a snack for the entire class that is gluten free. The kids are required to wash their hands immediately after snack time and the teachers help them make sure the tables are clean.

If you want any more help feel free to e-mail me at nisla@comcast.net

[Guest Zmom]

This is my first post, but I am sooo frustrated I'd like to vent. My 5 year old son was diagnosed 2 1/2 years ago with Celiac Disease. Recently he has been complaining of severe stomach pain, so I took him to the doctor to see if we could get something for the spasms. I told the Doc. that I was trying to determine where he might have picked up gluten, he is in kindergarten and maybe he picked up a crumb or two from another kids cookie. The Doc. then informed me (in a very patronizing tone) that it would take more than just a few mere crumbs of gluten to hurt him. I began to argue the issue, but it was impossible. God, don't they teach these people anything? Any advice on how to deal with these idiots?

Wow -thats terrible. In January my son's pediatrician told me to give him "a little" gluten as a remedy for his constipation. I changed his Dr. the same day. Its hard enough getting family and friends to understand this disease. But unfortunately are expeiriences are very common. I cannot use the language that would be accurate to describe MY expeiriences with my former DR. Actually I do not have one right now

[Smunkeemom]

I don't know, I am still trying to find another doctor (GI) for my girls, I found out that my daughter who was tested in May of 2004 was actually positive, but the doctor didn't tell me because "the gluten free diet is so difficult and since she was not having any symptoms I thought it would be best if we waited" It's not like my other daughter wasn't already on the diet the kid was sick for a year, me thinking the whole time that we had ruled out Celiac disease. I really should sue.

[Nic]

My son had a similar situation. About a year ago he became very sick with constipation. It sounds pretty simple but he was so bad that he would be shaking, screaming, sweating, and crying just to pass a small amount of soft stool. He only made it to pre school 1-2 days a week from Jan. - June. My GI ran several tests including the blood test for the antibodies for gluten sensitivity. His numbers were so high they were through the roof and the doctor felt positive it was Celiac. My father also has it. After the biopsy, the doc was shocked to find a negative result due to the fact that his villi were not flattened. My doc was not ok with this so he kept searchig. He called other docs who all felt that it would be extremely unlikely to have such a high blood level and be neg for celiac. So he sent blood out to a special lab in California who made sure it was genetically possible for him to have Celiac as well as re test for the antibodies. He then sent a sample of his biopsy to Columbia University where there are experts in Celiac. They concluded that he does have Celiac even though he villi are ok. He has been gluten free since May and is doing much better. If you are going to take things into your own hands and give your child a gluten free diet, just remember it may make it difficult if you want a second opinion. Because of the confusion witht the results I did go for a second opinion. I was told the only way to confirm that someone is Celiac after going on the Gluten free diet would be to re introduce gluten and do another biopsy. I was not willing to do that. If you take away the gluten and you see improvement, do you need any more proof?

Nicole

[Guest nini]

The Celiac Expert that spoke at our support group meeting said that she NEVER gluten challenges someone after they have been on a gluten free diet for a while, especially if they are seeing improvement from it. The biopsy is not going to be the Gold standard much longer, within 6 months or so the AMA should recognize that the blood tests (EMA, tTg, IgA, IgG, can't remember the other one ) alone will be sufficient to dx Celiac.