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Pos Biospsy Now Dr Says Its Not Celiac?

dahams04

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dahams04 Apprentice
dahams04
Posted

Since Hunters blood work came back fine. The Dr says hes not sure if its Celiac, and to put him back on a normal diet for 2 mths then do a repeat scope... I told his nurse of the positve changes in him. She said well try it and if he gets negative reactions then let them know right away. UGH! I thought there were no false postives on biopsies? Why would he question it? He said there was "mild blunting" Does that change anything? I told the nurse to have him call me. But she said it wont be until this evening. Any thoughts?

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gfp Enthusiast
gfp
Posted
Since Hunters blood work came back fine. The Dr says hes not sure if its Celiac, and to put him back on a normal diet for 2 mths then do a repeat scope... I told his nurse of the positve changes in him. She said well try it and if he gets negative reactions then let them know right away. UGH! I thought there were no false postives on biopsies? Why would he question it? He said there was "mild blunting" Does that change anything? I told the nurse to have him call me. But she said it wont be until this evening. Any thoughts?

"mild blunting"?

Well how loing has he been gluten-free? This is the whole problem with biopsy. In theory if you go gluten-free you are cured since the biopsy is after sometime hopefully negative but this is like saying your eyes are perfect because you can read the board with your glasses on!

Duh, I mean its not going to just get better if he keeps eating gluten! Reminds me of Spike Milligans epitaph "I told you I was ill" .....

Any common sense appraoch says "mild bluting" ... heck lets get him off gluten before any further damage is done. To me this is like getting a chest x-ray and the Dr. saying .. you just got mild emphyscemia, keep smoking and we will be able to tell if that is what is causing it!

floridanative Community Regular
floridanative
Posted

Your child has Celiac if he has blunting of any kind on his villi. If you had your son off gluten and he did well on it, keep him on it and get on with your life. Most doctors (1) don't know as much as you do about Celiac, unfortunately and (2) for some reason, hate to diagnose it in this country. I had two docs try really hard to tell me I didn't have it. One admitted they never dx Celiac in less than a year with three biopsies (archaic protocol from the 50's). When my biopsy came back that I had classic case of Celiac, well let's just say was my doc's face red!

wonkabar Contributor
wonkabar
Posted
Since Hunters blood work came back fine. The Dr says hes not sure if its Celiac, and to put him back on a normal diet for 2 mths then do a repeat scope... I told his nurse of the positve changes in him. She said well try it and if he gets negative reactions then let them know right away. UGH! I thought there were no false postives on biopsies? Why would he question it? He said there was "mild blunting" Does that change anything? I told the nurse to have him call me. But she said it wont be until this evening. Any thoughts?

Find another doctor!! Blunting is blunting!!! OMG!!! I've never heard of anything more ridiculous than that!! (Well, acutally I have, but that's another story...) I'm sorry you're getting the run around from your doctor...how frustrating! It's so easy for them to tell us as parents to give our kids something that we know will cause discomfort and essentially hurt them. I personally would not put your little guy back on a regular diet, especially if you've had a positive dietary response. You don't need an Rx or doctor's permission to follow a gluten-free diet. If you really want a pos. diagnosis from an MD, I'd just look for another ped gi and have his records sent there Good luck!!

--Kristy

dahams04 Apprentice
dahams04
Posted
  • Author

"mild blunting"?

Well how loing has he been gluten-free? He was scopped first then put on the diet about a week later. I posted last night in a different thread a few down for more background info. THanx for your responce!

This is THEE only Ped GI around. (He's out of Albany Med in upstate NY. For the record I have not spoke directly to him since he called with the Dx. It's all going through his nurse. Which I can say clearly is not the smartest... When she called yesterday w/ the blood results she said" oh the blood work is fine so its not Celiac" with out even talking to the Dr first!! I'm like "well even with the positive biopsy?" she goes " oh he had a biopsy?".. So this is where I am coming from. I put a call in to our wonderfull ped. to see if she can talk to him before tonight. He usually takes Dr's calls. Shes not in untill 10:30 though... Thanx for your input!!

ravenwoodglass Mentor
ravenwoodglass
Posted
Since Hunters blood work came back fine. The Dr says hes not sure if its Celiac, and to put him back on a normal diet for 2 mths then do a repeat scope... I told his nurse of the positve changes in him. She said well try it and if he gets negative reactions then let them know right away. UGH! I thought there were no false postives on biopsies? Why would he question it? He said there was "mild blunting" Does that change anything? I told the nurse to have him call me. But she said it wont be until this evening. Any thoughts?

There are NO FALSE POSITIVES on biopsies, you are correct on that. There are many false negatives in the blood tests even with full blown almost dead celiac. I was one of those. IMHO I would get him back on the gluten free diet and let this doctor fund his next vacation with someone else's money.

wonkabar Contributor
wonkabar
Posted
This is THEE only Ped GI around. (He's out of Albany Med in upstate NY. For the record I have not spoke directly to him since he called with the Dx. It's all going through his nurse. Which I can say clearly is not the smartest... When she called yesterday w/ the blood results she said" oh the blood work is fine so its not Celiac" with out even talking to the Dr first!! I'm like "well even with the positive biopsy?" she goes " oh he had a biopsy?".. So this is where I am coming from. I put a call in to our wonderfull ped. to see if she can talk to him before tonight. He usually takes Dr's calls. Shes not in untill 10:30 though... Thanx for your input!!

Oh, You poor thing...how infuriating!! :angry: You little guy does in fact have Celiac with a positive biopsy despite what the doctor says. I hope when you talk to him, or when your ped does, you get some answers!

If it makes you feel any better, we took our son to a "highly respected" ped gi in NJ who told us Zachary was "just fine" after we explained ALL of his obvious symptoms. He also told us that Zachary's change in behavior was "purely coincidental" when on a gluten-free diet. He was a jack-ass, and we knew better. Zachary had neg. labs, and we chose not to do the endoscopy as he's only 3. We took him off of gluten and whammooo!!!! All of his horrible symptoms were gone and his behav was much better. :) Our ped has been extremely supportive of the gluten-free diet and has agreed 100% that Zachary is clearly gluten-sensitive but isn't willing to Dx Celiac at this point without labs or a biopsy. We're fine with that. I don't need the Dx. We also had a stool sample and gene testing done on Zachary through Enterolab. He came up positive for a gluten-sensitivity, auto-immune response to gluten as well as one main Celiac gene and one non- Celiac gluten sensitivity gene. But, he's "just fine", right???!! :huh::P Hang in there!

--Kristy

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lovegrov Collaborator
lovegrov
Posted

If the biopsy showed mild blunting and your child has improved on the diet, he has celiac.

richard

key Contributor
key
Posted

Bloodwork in little children isn't accurate. Has your doctor researched this?? I swear I read this in a journal somewhere. My 14 month old had negative blood work other then a positive IgG? I believe that was the one? Anyway, he didn't have a biopsy, but he got 100% better on the diet. I would question the doctor reguarding the blood work possibly being inaccurate and then there is NO way I personally would put my child on gluten again when it is poison to him. You have your answer if he had a positive biopsy.

Monica

eKatherine Apprentice
eKatherine
Posted

It sounds like the doctor thinks his celiac has been cured. I'd worry about a doctor like that.

GFBetsy Rookie
GFBetsy
Posted

BEsides, according to the medical professionals themselves, it is the biopsy, NOT the blood work that is the "gold standard" for diagnosis of celiac. I think your doc is making a mistake.

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    • catnapt
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