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I have done some research and was wondering if a biopsy is really necessary for either of my boys.  They are 3 and 6 and we do have a family history of Celiac.  Here are their blood test results.  

Alex

Deam Iga Index 212.3

Gliadin IgA postive

Glia IgG Index 137.9

Gliadin IgG positive

TTG IgA index greater than 100

TTG IgA AB positive

Robert

Deam Iga Index 115.5

Gliadin IgA postive

Glia IgG Index 60.1

Gliadin IgG positive

TTG IgA index greater than 100

TTG IgA AB positive

 

I found this in a chat room and it got me thinking...

"With Celiac, something like 98% of people who test positive for the TTG will indeed have a positive biopsy. In this study http://cat.inist.fr/?aModele=afficheN&cpsidt=16733112 , 48 out of 49 people with TTG > 100 had a positive celiac biopsy. This implies that there is no point doing the biopsy when TTG is > 100. For moderate TTG levels (between 20 and 100), 50% had positive biopsies, and were recommended to "continue to undergo biopsies" until diagnosed" .

 

I would LOVE to hear your opinions.

 

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Family history and that blood test alone is enough i think for a diagnosis.

 

However, that being said, the TTG doesn't always mean that the biopsy will come back positive. Often times celiac causes patchy damage or damage that is not visible to the eye. Potential areas can be missed.

 

Mine was at a 37 (with anything 1-19 normal, 20-29 low positive, 30+ strong positive). I also had some really bad symptoms that resolved once i went gluten free and a positive test for both genes (DQ8 and DQ2).

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I opted out of the endo and biopsy. The bloodwork was enough for me, and the fact that once I went gluten free I started to feel MUCH better.

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I didn't get the endo and biopsy. My blood test results were enough for me. Sometime I wonder exactly how much damage there is in there..but I do not wonder enough to get the endo done lol

It is up to you. Chances are, if their blood test results were positive, they have celiac. ESPECIALLY since you have a family history

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Speaking as someone who had to make sure I could get accommodated for school endeavors, I would say, if eating gluten for long enough to get the biopsy is not absolutely debilitating, do it. A lot of places like to have all the possible tests done to have accommodations. I'm currently studying abroad and they asked for all my diagnosis papers to accommodate me under ADA. And here in Austria, they won't give people their tax breaks and health benefits for Celiac without a biopsy. 

 

I had a super strong positive on my blood test, but I'm not in control of my food 100% of the time because I am a college student. I was just terrified that somewhere down the line, something wouldn't be changed or accommodated because I was missing the endoscopy. I'm also a huge worry-wart so take that with a grain of salt. The test is just so much easier to do when gluten is still around than years after being gluten free. 

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Speaking as someone who had to make sure I could get accommodated for school endeavors, I would say, if eating gluten for long enough to get the biopsy is not absolutely debilitating, do it. A lot of places like to have all the possible tests done to have accommodations. I'm currently studying abroad and they asked for all my diagnosis papers to accommodate me under ADA. And here in Austria, they won't give people their tax breaks and health benefits for Celiac without a biopsy. 

 

I had a super strong positive on my blood test, but I'm not in control of my food 100% of the time because I am a college student. I was just terrified that somewhere down the line, something wouldn't be changed or accommodated because I was missing the endoscopy. I'm also a huge worry-wart so take that with a grain of salt. The test is just so much easier to do when gluten is still around than years after being gluten free. 

thanks for your response....we are going to get the biopsy, largely in part of school requirements. 

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I didn't do the biopsy.  To gage my amount of damage and healing, I did nutrient tests last November.  In theory,since my nutrient levels were poor,  by now they should have gone up.  In reality, they have! 

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Just be aware that if the damage to the intestines is patchy, it is very possible for the damage villi to be missed. that has happened to a few around here: positive tests and negative biopsy... or positive biopsy and negative blood work.  If that happens, please assume they are celiac even if the doctors don't sign off on the celiac disease diagnosis. I think it's better safe that sorry.

 

Best wishes.

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OMG I’ve having the same issue with dairy, sugars, even natural sugars like fruits! I’m following this thread. I really thought I was the only one! Thanks for asking it. My dr says I just need to go a good 6 months gluten/sugar/dairy free to “reset my system” and it should help. We’ll see. Good luck to you sir!   AJ
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