New Dr.

[krisb]

My boys and I have been gluten free for a year now and all of us feel so much better. My oldest son was the one to have the biopsy and tests done. Some of his tests were inconclusive but he tested positive to the genetic test and other blood work. He was so sick before he went gluten free and was losing weight, failure to thrive, etc. I decided to put the younger boys and myself on the diet because of positive blood work, symptoms and history. The Ped. wanted us to go back to a GI to see what they have to say because I never had the younger boys biopsied. So I went to a new well known good Dr. and he says he wants to make his own decision about what they should do. He wants them to go back on gluten so he can give them his own biopsy and tests. He asked for all my son's past results with the other Dr. too. They have been doing so good I don't think i would want to do that to them. My 9 and 6 year old said no way are they going to do it. That says a lot because they know they feel so much better. They don't want to feel like crap again and have to go through all those tests. They don't care if that means they would be eating all that good stuff again. It may be celiac or just an intolerance but either way I know they are so much healthier and actually gaining weight. No more diarrhea. How important is it that I have this Dr. make his own decision? I know either way that gluten makes them sick. I couldn't convince the Dr. though.

[CarlaB]

I am curious why you would need to go back to a GI if no one is having any symptoms any longer. I can see the GI's point that he does not want to give his opinion when he hasn't tested them, but I don't see why they went to a GI unless they were still sick.

I would never put myself or another person through eating gluten just to please a doctor when they have had a positive dietary response to being off it. If you all had positive blood work, and you all have had a positive dietary response, then there really is no need to question it any further, you all have a problem with gluten. If the pediatrition doesn't agree that it's sufficient proof, you don't really need his support to eat gluten-free anyway.

[Corkdarrr]

Screw that. Keep looking for a doctor who isn't completely incompetent. If your KIDS don't even want the chance to eat delicious "normal" food again...well that speaks for itself. (Not only are they extremely smart kids, but they obviously felt extremely bad before going gluten-free.)

A positive dietary response is enough for me!

[plantime]

I have to agree with the other posters. Your kids are doing so much better, why jeopardize their health again just so another doctor can run tests? Isn't the first rule of medicine to first do no harm? Doesn't gluten harm your kids? Why, oh why, can't doctors understand this?

[AndreaB]

I agree with the others. Why put the children through that for 1)they've had positive dietary response 2)they have a sibling that has celiac/gluten intolerance 3)biopsies are highly unreliable (presuming that would be one of the tests) 4)the children don't want to do it and it is not necessary for their health and well being.

[krisb]

All of you are right. I just needed to hear it. If they decide when they are much older that they need to have a definite positive biopsy then they can do it then.

The Ped sent me to the GI because she said that the diet needed to be monitored by the Dr. I realized after the appointment that it was a waste of time for me. I had to drive an hour to get there in such bad rain, I'm prego and getting over morning sickness, and by time I got home my whole day was shot. It was an all day affair that i got no answers from. The only good thing was I passed the health food store on my way home that I don't usually go to because it's further away.

[Guest ~jules~]

I wouldn't want to do that to my kids either. If the bloodwork shows, and the diet is working for you why question something that works? Doctors! Ugh!

[Guest nini]

All of you are right. I just needed to hear it. If they decide when they are much older that they need to have a definite positive biopsy then they can do it then.

The Ped sent me to the GI because she said that the diet needed to be monitored by the Dr. I realized after the appointment that it was a waste of time for me. I had to drive an hour to get there in such bad rain, I'm prego and getting over morning sickness, and by time I got home my whole day was shot. It was an all day affair that i got no answers from. The only good thing was I passed the health food store on my way home that I don't usually go to because it's further away.

the diet DOES NOT, I repeat, DOES NOT need to be monitored by a Dr. that is just crap! The only thing that needs to be monitored is their general health, and the pediatrician is more than sufficient to monitor their health. Not only does the pediatrician need an education as far as gluten intolerance is concerned, but that GI needs a thwack on the head for even considering putting them back on gluten just to satisfy his morbid curiosity. Positive dietary response is more than enough to dx gluten intolerance, and honestly, since the treatment is exactly the same as dx'ed Celiac then that is all you need to know. You are all obviously gluten intolerant and know that you need to be off gluten forever. Screw that dr... seriously, what on earth is he thinking? A nationally renowned GI dr. that is a Celiac expert, says she NEVER has anyone do a gluten challenge when they come to her with positive dietary response. You need to find someone like her IF you feel like you and your kids need to be monitored by someone.

My personal opinion is that a general practitioner and pediatrician are sufficient enough to monitor general health when someone is adhering to the gluten free diet. If you are having further complications than you are either not 100% gluten-free, or have other food intolerances, or there may be another health issue going on. None of which require you to go back on gluten to figure out what's going on if eating gluten makes you sick.

[Ursa Major]

I completely agree with everything said already. The gluten-free diet is a perfectly healthy diet, and absolutely does NOT need to be monitored by anybody! That's totally ridiculous. Apparently this doctor doesn't know what a gluten-free diet means, and that NOBODY needs gluten containing grains to be healthy. I seriously believe that it would be better for people in general (celiac disease or not) to stop eating grains (and sugar), it would stop the obesity epidemic as well as the type 2 diabetes epidemic here in America in their tracks.

[krisb]

I think at this point I won't even bother to call the old Dr. and have all the tests and films sent to the new Dr. First of all it's going to take some work with phone calls and tracking some blood work down and I'm not sure if I want to hear what this guy has to say after he gets the results. He made it clear that he wants to see them but still wants to do his own biopsies.

I am annoyed with the Ped because my older son was anemic before he went gluten free. She was supposed to do his bloodwork again to see if his numbers got better. She blew me off and said he doesn't need any blood work done. I would like to see for myself. It would just be more proof for the Dr.'s. He has been anemic his whole life. He looks so good, I think his numbers would be fine now.

[Guest nini]

just me, but I'd find another ped. that is supportive of the positive dietary response that you all have experienced. Don't forget that these Dr.s actually work FOR US... we can fire them if we don't agree with the way they are handling our care.

[CarlaB]

I don't know why the ped wouldn't do the test at your request. When I had my ob/gyn checkup a couple months ago, I asked him if he'd do some blood work to see how I'm doing. He had no problem with it.

[Ursa Major]

My doctor orders any tests I ask her to, because she admits that she doesn't know a whole lot on celiac disease. Who does your pediatrician think she is, not to listen to you when you want to make sure your son is okay? Nini is right, they're supposed to work for us, if they lose all their patients they'll be out on the street.

I agree, switch to a different pediatrician who actually listens to the parents and doesn't think he is God.

[ravenwoodglass]

I think at this point I won't even bother to call the old Dr. and have all the tests and films sent to the new Dr. First of all it's going to take some work with phone calls and tracking some blood work down and I'm not sure if I want to hear what this guy has to say after he gets the results. He made it clear that he wants to see them but still wants to do his own biopsies.

I am annoyed with the Ped because my older son was anemic before he went gluten free. She was supposed to do his bloodwork again to see if his numbers got better. She blew me off and said he doesn't need any blood work done. I would like to see for myself. It would just be more proof for the Dr.'s. He has been anemic his whole life. He looks so good, I think his numbers would be fine now.

You need a new Ped. Period. I totally agree with everyone else. If he has been anemic all his life this was irresponsible of her.

[krisb]

This actualy was a new ped. I switched to this group last year when all the celiac stuff was going down. I was so impressed with the new Dr. because she was reading Dangerous Grains and was trying to learn about it. She was very supportive. Then at our last visit she was different She is funny like that though. A few months ago my husband got Lyme disease. The specialist he saw said to have the boys tested for lyme by the ped because they all had ticks the same time. The ped wouldn't do it. I actualy called there old ped and asked them to run the test and they did even though my kids weren't there patient. I left them when we were going through the celiac diagnoses because the Dr. was just like "they have celiac do the diet and that's it." He didn't say to go for furthur testing or tell me what to do. My son was sick all those years under there care and saw so many specialist but it was me who suggested they have celiac. This new ped seems to have a problem with doing blood work or even a urine test to make sure my kids sugar is fine. there Father and everyone in his family have type 1 diabetes. I have to beg these peds to do any blood work on my kids. I have good insurance and my kids are fine with doing it so what is the big deal? The good thing is that there around on the weekend. I think i've decided I know more than the Dr.'s anyway so I only need them for prescriptions and for the big stuff.

[CarlaB]

I only go to the doc for the serious stuff and prescriptions anyway. I take them to urgent care for their sports physicals, it's just easier.

I'd go back to the old ped. At least he was willing to do the tests and open to the fact that they are gluten intolerant.

[ravenwoodglass]

I actualy called there old ped and asked them to run the test and they did even though my kids weren't there patient. I left them when we were going through the celiac diagnoses because the Dr. was just like "they have celiac do the diet and that's it." He didn't say to go for furthur testing or tell me what to do.

IMHO this actually sounds like a real good doctor. I wish my kids had him. He found the problem was celiac and was not going to do unneccessary testing to try and 'prove' that it wasn't. If he is willing to test every once in a while to check and make sure they are still gluten-free and that vitamins and iron are being properly absorbed I would go back to him.