Why Can't Doctors Agree?
Posted 12 January 2004 - 05:40 PM
Posted 12 January 2004 - 06:19 PM
I would leave him on the gluten-free diet for the rest of his life especially since you can see that much of an improvement in him!!!! That is an awesome!!!
If he has been gluten-free for 6 months of course the bloodwork and biopsy would come back normal! I do not know why a doctor would tell you to put your child back on gluten after the results from going gluten-free!
You are doing the right thing by not wanting to put him back on gluten! Stand your ground and protect your precious boys!
Posted 12 January 2004 - 10:45 PM
I agree with your good "gut" instincts! I agree 100% with Stacie's wonderful advice!
I have some "gastric reflux tips" that you can take a look at, that are drug-free. See Appendix B, on webpage 10 of my website. Here's a link:
Posted 13 January 2004 - 10:20 AM
I really dont understand what their problem is. THEY don't have to do the diet.. it's no skin off their back!!!
Just because he showed little damage is no reason to say oh well no it's not that.. I would say that is a reason to be happy because YOU CAUGHT IT EARLY!!! Early enough to prevent him from further damage!!! REJOICE!
I really don't understand either..
And I am soooo scared of the words.. inconclusive, and patchy damage! I really REALLY hope I don't hear them next week after my son's endoscopy!
I guess all I can do is sympathize with you, and say the gluten-free diet isn't HURTING him so don't change it you already have a DX as far as your pediatrician and old doc are concerned.
Posted 13 January 2004 - 03:54 PM
We've gone through a similiar experience. My now 19 month old was very sick for the first 14 months of her life. She had 10+ diarrhea diapers a day, never slept for more than 2 hours straight through the night, and didn't take naps. She constantly cried and had a huge pot belly. My pediatrician kept telling me it was behavioral until at 14 months I went back in and said to the doctor "something is wrong and I want tests run - now" So we went through multiple tests including the endoscopy with biopsy. As I studied everything the doctor was testing her for everything with celiac disease fit. At the time I didn't know that withdrawal of gluten could affect the test result. So prior to the biopsy my daughter had been gluten-free for two weeks. The change in her was staggering. She was a different baby. Needless to say the biopsy came back negative. The GI doctor told me that he thought 'maybe' it was allergies. Well, due to the amazing changes my daughter had my pediatrician diagnosed her with gluten intolerance. She also admitted that I probably knew more about Celiac than she did since it just isn't something that they even study in med school or are trained to look for. As for the GI doctor, it doesn't bother me that he refuses to diagnose my daughter with celiac disease. Doctors have to follow a subset of guidelines to make a diagnoses. In order to be diagnosed with Celiac disease in the United States at this time a positive biopsy of flattened villi has to be present. What the doctors fail to realize is that so many factors can affect the outcome of the biopsy - where the biopsy was taken in the intestine (damage to the villi generally occurs in patches, not over the entire intestine), was gluten withdrawen from the diet prior to the biopsy, was the pathologist reading the biopsy properly trained to spot damaged villi, the list goes on. I certainly understand wanting a definitive diagnoses by a medical doctor. We turned to Enterolab for that (although there are differing opinions about the credibility of the tests). What I learned most about my experience in diagnosing my children (and myself) is to follow your intuition. A person's intuition is very strong. I knew very early on that something was not right - and I regret not following my insticts sooner. You do have to be strong in your convictions and beliefs of your diagnosis, however, because it is a challenge to be gluten-free in our society.
Good luck to you!
Posted 13 January 2004 - 06:56 PM
You are doing the right thing. Keep your son on the diet and change GI doctors. Just because you saw the previous doctor, does not mean you have to see the new one. Your pediatrician is a keeper though! If you want a little bit of "proof" that your son does have Celiac Disease, then you could ask your pediatrician to order the gene test. If your son had HLA DQ2 or HLA DQ8, then he has the genetic predisposition to the disease. That, with the positive IGG and IGA tests, and the wonderful improvement on the diet in such a short amount of time should be enough. Ask your pediatrician to make sure it is in his chart that he has celiac disease. You should not have to prove anything to a doctor who came in after the fact and never saw your son when he was sick.
Also, I met my children's new doctor yesterday, and I was so happy. He is a wonderful doctor and very knowledgable with celiac disease. He does the gene test first, since if they don't have the gene they can't have the disease, right? And he only uses Promethius labs. He said that most labs aren't skilled enough to diagnose celiac disease and he wants to know that he can trust the results of the tests. I thought this was great. Then he told me something that I had never read before. He said that the lab needs to use human tissue transglutiminase for the tTg test to be accurate for Celiac Disease, and most labs use pig tissue transglutiminase. This will not give an accurate reading of the tTg antibodies in the blood. So even the most reliable of the celiac blood tests will be wrong if it is not done right. And most labs are not skilled at recognizing the damage on the tissue samples taken during the endoscopy. So it is actually very common for someone with celiac disease to have negative test results in regards to the blood tests and biopsy.
I am so glad to know that your son is doing so well on the diet.
Mariann, gluten intolerant and mother of 3 gluten intolerant children
Posted 13 January 2004 - 08:34 PM
Posted 18 January 2004 - 01:44 PM
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