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I know this has been asked a few times, in different situations.  I am still torn on what to do.  

 

Here is the situation:

My 11yo son was diagnosed with Type 1 diabetes this summer.  They did celiac testing and thyroid testing at that time also because of the high incidence in Type 1 diabetics.  He has never been symptomatic, very healthy kid overall.  He was diagnosed with hypothyroid and the celiac blood work came back positive.  He had the biopsy done and that confirmed Celiac.  He started a gluten free diet. 

 

The gastroenterologist recommended testing other family members.  My 4 other children were tested, 3 had negative blood work, but my youngest daughter, 8 years old, had ttg -IgA and IgG levels both above 100. They recommend biopsy now.  She has had troubles with constipation/diarrhea over the years.  Nothing severe, but some of this is starting to make sense as to why she still continues to have many accidents in her underwear, although she is almost 9.  Otherwise, healthy kid.  I have a biopsy schedule for the 30th this month, but part of me just continues to wonder if it is necessary.  She has a brother with positive diagnosis, positive blood work, and some subtle symptoms.  I just wonder if it will make it easier down the road for her to strictly follow a gluten free diet if she has the diagnosis confirmed. 

 

Also,  our bill for the intestinal biopsy with our son was over $10,000. Does this sound normal?  I have read other places it is around $2000-3000.  I wonder if I should call the hospital and question the bill. 

 

Opinions please. 

 

Thank you,

Audra

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WHA?????????  Do you not have insurance to cover this?  $10,000.00 is insane and I just would not pay it.  It should never cost that much...even in the US where some docs charge a lot of money.  I would definitely push back on that one because that is just not right. The other price quoted by powerofpositivethinking is much more in line with a fair price for that type of test.

 

If I had one child diagnosed with Celiac via biopsy and another child with positive bloodwork that high, I would ditch the biopsy. As for sticking to the diet, she'll have a partner in her brother, making it easier to adjust to this lifestyle. I really have my doubts about a biopsy making it more probable that a person will be diet compliant.  I know biopsy proven celiacs that cheat. Those blood numbers are flamingly positive. She is one of us...... ;)

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For $10k I'd insist on a brand-new, gold plated small intestine while they were in there.  That's nuts!

 

In my opinion, the biopsy for your 8 yr old is overkill - unless they have reason to be looking for other possible ailments.  If she goes gluten-free and then continues to have problems they could do a biopsy then to check things out.

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I'd be getting quotes from other hospitals for the endoscopy if it were me.  And challenging the cost for the first one.  If you ask for quotes, get them in writing, and specify that they include all costs, including lab work and medications.

 

But, no, you don't have to get an endoscopy for her.  If her blood work is positive, and she responds positively to the gluten-free diet, then that's pretty conclusive IMHO.

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