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8-Year Old With Celiac Disease .. No Idea Where To Go Next


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7 replies to this topic

#1 Mom2CjJaedonEthan

 
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Posted 18 August 2011 - 11:09 AM

My 8-year-old son was diagnosed with Celiac Disease back in February 2007. The doctor ran blood tests and his nurse called to inform me that the tests came back positive. That is all they did. No further information was provided in regards to the "what next."

My sister was diagnosed a few months before my son, and when her blood tests came back positive they performed an endoscopy on her. She has been insisting that I need to get after my son's physician to get further testing, but no matter how many times I insist he ignores me.

Any suggestions???
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#2 sa1937

 
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Posted 18 August 2011 - 11:33 AM

You need a new doctor.
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Sylvia
Positive Celiac Blood Panel - Dec., 2009
Endoscopy with Positive Biopsy - April 9, 2010
Gluten Free - April 9, 2010

#3 Roda

 
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Posted 18 August 2011 - 11:44 AM

He is already diagnosed celiac by blood work so I would continue to keep him gluten free or put him gluten free if he isn't already. I agree you need a new doctor as they should have given you some direction. If he hasn't been gluten free you could always request the full celiac panel: total IgA, IgA/IgG tTG(tissue transglutaminase antibody), IgA/IgG DGP( deamidated gliadin peptide antibody) and request a scope with biopsy. They must take a minimum of 6-8, some references are now saying 8-11 biopsy samples from the small bowel. If you want to redo this have it done while he is still consuming gluten. If he is already gluten free then he would have to go back on gluten, eating appx. the equivilent of 2-3 slices of bread a day, for three months.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#4 Darn210

 
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Posted 18 August 2011 - 11:54 AM

Did you take him gluten free at that point? What doctor has he seen (for anything) since he was diagnosed?
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Janet

Experience is what you get when you didn't get what you wanted.


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#5 SilverSlipper

 
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Posted 18 August 2011 - 01:17 PM

Hi Mom2CjJaedonEthan,

Have you taken him gluten free? If so, that's great! If not, the parents here are so knowledgeable and can help you through that process. Can you get a referral to a pediatric gastroenterologist?

All the best...
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#6 come dance with me

 
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Posted 18 August 2011 - 03:25 PM

My 8yo was diagnosed by blood test and I took her off gluten from then without anything else happening. I wouldn't agree to anything invasive for her because the end reult is the same = a gluten free diet for life.
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Lord please give me patience, because if you give me strength, I may just beat the living crap out of someone...

#7 mommyto2kids

 
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Posted 19 August 2011 - 03:20 PM

I am reading this thread and wondering if my biopsy was correct if the endo Dr. said he only took 1 sample. Is my confirmation accurate if he only took 1 sample?
One poster said you need many for an accurate diagnosis. Someone please explain.
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#8 Roda

 
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Posted 19 August 2011 - 05:37 PM

I am reading this thread and wondering if my biopsy was correct if the endo Dr. said he only took 1 sample. Is my confirmation accurate if he only took 1 sample?
One poster said you need many for an accurate diagnosis. Someone please explain.

I'd say if you only had one sample done and it showed up positive then in a weird way consider yourself lucky it showed in that sample. Doing multiple biopsies just helps get a more accurate test since damage can be patchy.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.





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