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Why Can't Doctors Agree?
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:( Okay...well I just took my sons to see the New GI doc (old GI doc is retiring) and I must say that I am not impressed..Just looking for opinions here..and it's been a while since I posted (last time I posted was on the "old" board). My oldest son, Daniel, is 4 years old. First noticed that we were having problems when he was 18 months old (he basically stopped growing). Took Pediatrician til he was three to say okay there's something wrong here..Does a slew of lab work. On first round of labs everything came back wnl...2nd round of labs and a bone age everything came back not normal...IGG 118 and IGA of 48. Carotene 6. TTGAB was negative. Biopsy showed long and intact villi but patchy inflammation. oh Bone Age was 2 years 1 month (He was 3 years 6 months old at the time). Pediatrician said to try him on a gluten-free diet for 6 months, eventhough GI doc said to leave him on a reg. diet. 6 months later and still gluten-free, he is catching up on his height and weight, has more energy and no longer has dark circles under his eyes (a new child!!- and Mommy is a Happy Camper!)..Now he saw his GI doc today...He says biopsy neg., ttgab neg, therefore no need of gluten-free diet. However his pediatrician disagrees and says that due to my sons response to gluten-free diet that he feels he has Gluten Enteropathy (went from wearing 18 month old clothes to now weaing 4T and 5T clothes all in 8 months). So now GI doc is d/c'ing his Reflux Meds (Reglan and Zantac) and wants me to put my dear baby on Gluten again and says if he starts having problems then give me a call.. I say NOT!! I have seen too much improvement in my son the last year (almost a year gluten-free- Feb. 18 2003) to even want to try and give him Gluten Again...No Way!...I guess what I really need is your guys opinions...I think I am doing what is right in the best interest of my son but it would be nice to have others opinions to confirm this feeling...so...Give your opinions...Thanks soo much in advance...Stephanie7297..Mother of 2 boys (1 with what I feel is CS, the youngest with GER, Gastroparesis and a upcoming EGD w/biopsy)
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Stephanie:

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!

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Stephanie,

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:

http://cantbreathesuspectvcd.com/page10.html

Sincerely, Carol

http://cantbreathesuspectvcd.com

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Go hit the doctor upside the head and say NO! Or say.. ok I'll put him back on gluten if you keep him for a week... hehehehe.

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.

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Your are surely doing the right thing. The progress you noted regarding your son was amazing!

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!

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Stephanie 7297,

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.

God bless,

Mariann :)

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His previous GI ordered the HLADQ2 but the results hadn't come back when he saw the New GI (must admit laziness on my part- forgot that he had to have them done and so they didn't get done until the week before his appt). But I am going to make sure that his pediatrician keeps a eye out for it (just want to know what the results were as my son doesn't take being poked by needles very well), but to be honest I am not sure it matters...given his favorable response to the diet I am not planning on taking him off of it anytime soon...Thank You all for your continued support..Steph :D

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Well Gluten Free it is to be. My youngest son has a biopsy scheduled for tomorrow morning (trying to figure out why his Reflux is soooo bad. As for my oldest the GI doc can discharge him from his care, and I think I'll just let his Pediatricians deal with what they can for him. I'll try to keep you all posted but sometimes I can be rather forgetful. Thanks for all the support it is greatly appreciated (you truly don't know how much so)....Steph :D

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    • hey! Wondering if I can get some good info/help from you guys! I just signed up for this website couple weeks ago. Whenever I would Google things this was always the first to pop up and I always found info on things I googled. I am pretty new to the gluten free thing. I had a hernia surgery back in Jan and after that I kept throwing up after eating, the DR. told me it was probably acid reflex caused from surgery but all the meds I tried nothing helped. I went back and was told to cut gluten out. I have been doing so since. When I first started I felt like I had it under control and didn't throw up for 3 weeks, now I find it happening more often. I do buy gluten-free things and read labels to the best I can. My frustration comes from not knowing what its from. How do you know if its from the day before or what you just ate? I hate not knowing. Especially when I haven't had gluten (or so I think) I have been keeping a journal but I just find it so hard. I get this feeling in my stomach and can feel it in my throat. Sometimes I puke once sometimes 5 times! Yesterday for lunch I made an omlet with chicken mushrooms and feta cheese. I threw up almost 20 min after. I have also tried the no dairy thing and it doesn't seem to make a difference so I don't think dairy is an issue as well.
    • I have been on a gluten-free diet for exactly one-year. During that time, I have had no stomach issues or problems when I inadvertently ingested gluten. The other day, I had GI discomfort (no vomiting or diarrhea) and my blood pressure spiked t0 200/98 (normally 119/75). As my GI discomfort subsided, my pressure crept back to normal. This took about 16-hours. I know that I ingested something with gluten, which I had thought was gluten-free.  It never bothered me before. Should I expect that the longer I'm gluten-free, the more susceptible I will be to having a pronounced reaction to inadvertent gluten exposure? Has anyone else had similar experiences with blood pressure spikes?
    • If this is helpful: My local public library had a copy of Breaking the Vicious Cycle by Elaine Gottschall.  There is a Facebook group, I believe it is easily found by searching SCD Diet, and it's a closed group.  If you go directly to the official website of Breaking the Vicious Cycle, there's lots of information for free available, including the basics about the intro diet and beyond.  I would go to the original source of this diet rather than go to other groups/books who have perhaps veered away from Elaine Gottschall's fundamentals. Best wishes to you!
    • AdrienJ, thank you so much! I dream of traveling more one day. I have spondylitis too. I'm so glad that a gluten free and casein free diet is helping you feel your best!
    • Hi Lisa, I completely understand why you didn't do a biopsy on your daughter.  I went through the appendix thing myself...not fun!  I was diagnosed with just bloodwork and no biopsy, but did have the full panel.  I would go back to your PCP and ask for a full panel to include TTG, EMA and DGP tests.  Since she was already willing to test you, I'm sure she would be willing to order these.  Good luck!
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