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vampella

Saw The Ped Today & He's Not Happy With The Gastro.

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So we saw the ped today after seeing the HORRIBLE gastro on Thursday. she was rude, why are you here if she's no longer sick, why are you waisting my time? and if the ttg say's neg it's neg they are 100 % accurate and so on, I left in tears.

Her ped say's he believes it's celiac's and not to worry about that gastro and agreed that I should file a complaint against her with the college of physicians & surgeons, So I am.

He said don't you dare take her off the gluten-free diet and doens't want to see her for 2 months unless she's not doing well.

he also said that some people take tests as being the be all and end all when they aren't, no test is 100% right from the peds mouth.

I said ya I work in veterinary medicine and I could give her 20 examples of tests being inaccurate.

Has anyone else ever come across Dr's that think tests are 100% and if it's neg that's all there is to it?


Char

Emmah 4 years- Celiac , gluten-free October 2006

Leigh-Ann 7 Years- Gluten lite

Gary- possible celiac

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Good for you for not listening to her. Some doctors do not want to look at the results from actually living on the diet but rather what their tests say, so, you know she feels better gluten-free and that's that.

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My experience has been that a doctor will not recommend the diet until there is a positive blood test. Even when I explained to our pediatrician how much better my 2 year old was doing on the diet (blood test was -) he said it was simply a coincidence, even with the strong family history. Unfortunately, I know the feeling all too well of leaving a doctors office in tears, as I'm sure many on here do!

Sounds like you have a GREAT pediatrician.....forget the GI doc, and just keep up the good work!


Tamara, mom to 4 gluten & casein free kiddos!

Age 11 - Psoriasis

Age 8- dx'd Celiac March 2005

Age 6- gluten-free/cf, allergy related seizures

Age 4 - reflux, resolved with gluten-free/cf

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I'm sorry you had such a rotten experience with the GI, but that's great that your ped's working with you so well!


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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Char:

I will spare you the details (which I affectionately refer to as my sob story :D )

90% of the doctors that I have seen since my health odyssey started 3 years ago fall into the camp of your gastro. In general, I tend not to get along particularly well with GIs. Only one (a doc at Johns Hopkins) fell in the same camp as what I believe (Celiac, gluten intolerance, gluten allergy, at this point---who cares what it is. Gluten is a problem for me, end of story).

I am really happy that you have a ped who sees the obvious. It makes such a difference to have that support!!!!

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My son's GI doctor told me that the blood tests were almost 100% accurate. I haven't found any data to back that claim up. She wanted me to do a endoscopy on him, but I just don't feel it is necessary. I decided to keep him on a gluten free diet and he has gain 3 lbs in the last 3 months. He jumped a couple of percentiles in height and weight, so I know the diet is working. My regular doctor has no problem with me trying the diet on him for a while to see if he gains weight.

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Here is a GREAT link that talks about the accuracy of the antigliadin blood tests - http://www.enabling.org/ia/celiac/diag-tst.html . Basically, there is no 100% foolproof blood test, but it's pretty close IF someone is eating enough gluten for a long enough period of time before taking the test. It took me awhile to understand it, but once I did it helped me to understand why even doctors might not get it. But there are definitely no absolutes. That's why the "gold standard" is still the biopsy, however as others have discussed, unless there is very extensive damage, it may be difficult to find any damage in the intestines since it's not visible to the naked eye.

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Hi-- Just wanted to add my story about blood tests etc.

My son is 8yrs old now and was officially diagnosed on Halloween via biopsies which his GI from Children's Hosp in Boston said was the only definitive test. I need to back up a little and say that he was treated by the same GI from 3 to 5 yrs old for other issues which may or may not have been Celiac related. ( He was in a body cast which caused all sorts of problems plus he has renal issues which can be related to bowel issues) Anyway, before he was discharged originally by the GI he did have a Celiac blood panel ordered and it came back completely negative. (My husband has celiac disease).

Fastforward 3 years and my son was soooooo underweight and had the big distended belly and dark circles under his eyes. I brought him to the ped and she said he hadn't gained 1 ounce in over a year but had grown 2 inches so he was actually losing weight and ordered the panel again and sent us right back to the GI. His numbers were very high on several aspects of the test. Even the GI said he was neg 3 yrs ago and this seemed to upset him. He ordered the biopsies which were not that big a deal and my son did not mind at all and these came back pos and he has pretty extensive damage to his gut.

I guess the reason I tell you this is because tests can be very inconclusive and definitely not 100% accurate.

He is gluten free and is doing very well. He doesn't miss the old food because he feels so much better and doesn't look yellow any more.

Laura C

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Oh yes - we had a similar experience with a pediatric GI doctor. To add insult to injury we work for the same hospital and she KNOWS me ! :angry: She also believed that because my son's celiac panel was negative then he CAN'T be having issues with glutens, and when I refused to allow her to do the biopsy she was no longer interested in helping us out. She said "the celiac diet sucks and it's really hard." and when I told her about EnteroLab she nearly came unglued and said "they're scam artists."

:angry:

He's had WONDERFUL results with the celiac diet, as have DH and I. It was hard to adjust to at first, but now that we've adjusted we're so happy we switched and will never go back to the way we used to eat (and feel!).

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