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Hi everyone.

I have a question. Forgive me I'm sure this has been asked. I'm a newbie.

About 4-5 yrs ago I was tested with negative results. (Blood work)

However, I've been getting sicker and sicker( been sick basically my whole life started with anemia and stomach problems at age 18) and I just assumed I was gluten sensitive. I did a gluten-free free diet on my own. Symptoms greatly improved. I didn't stay gluten-free and that is because I'm not disciplined-- so I filled up on the horrible gluten stuff and off

I went to a doctor that deals with a lot of gluten issues and other things. Just got my results back and my blood work shows celiac.

I'm shocked I always thought gluten sensitive.

He mentioned how I can get a biopsy I said no right away. He explained if the biopsy is not done right it could show negative. He basically left it up to me maybe cause I said no!!! Lol I don't really get if the blood work shows celiac should I believe it or do I need the biopsy??? I'm very confused and wish I would have talked to him more. Thought about all this after I left his office and it's been bugging me for days. I spoke with a nutritionist that's on staff and she helped me with the food part. So I'm working on getting the gluten out!

Thanks!!!

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Lisalee, first of all, welcome!

If your blood work showed positive, then it's positive. I'm sorry. :-( There would only be the question of how extreme was the positive? If the numbers were very high, then a biopsy would be beneficial to determine how much damage has been done to your intestines. (From my understanding, a higher count would mean more damage, but a blood test only counts current levels, thus meaning even a low count could have been much higher with a higher concentration of gluten at another time, meaning that a biopsy would still be recommended.) So I guess what I'm saying is biopsy is recommended no matter what the levels are on the blood test. A biopsy is not fun, but it definitely can tell you how bad off your intestines are, and a repeat biopsy later on can show if you are doing a good job staying 100% gluten free by showing healing in your intestines. But, as I said, the blood work alone is pretty much enough to say you have celiac, especially coupled with going gluten free and seeing improvements. I know this is kinda a mixed up reply, but the bottom line is that a biopsy is recommended to determine how much damage is present.

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Thanks for the welcome and reply Georgia guy!!!

I guess I'm in denial!! Lol.

Not funny but I have to laugh at myself. I totally get your point on the biopsy -- thing is if I go gluten-free NOW I can't do it correct? I need to be glutened again -- I don't think I can handle the back and forth thing anymore.

Thanks again!! I'm just venting.

Lisa

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Congratulations on getting the positive bloodwork! Though it seems shocking now, it's a blessing to know what's really going on. You know, with your back story, it makes me wonder how many folks who think they are gluten sensitive are actually celiacs.

 

It's up to you, but if you have the insurance coverage and the opportunity to do the biopsy, it's a good idea.

 

It will confirm the diagnosis and let you know some information on how progressed the damage is.

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Welcome to the board.

 

Like the others said, a biopsy is good to let you know what point your recovery is starting from and to check for other problems (in two years on this forum  i have NEVER seen someone mention another problem causing a positive blood test that was identified in a biopsy). Others find a biopsy useful if their blood work was not clear or they need more proof that they need to stay gluten-free.

 

All that being said, a biopsy can be skipped - I skipped mine.  LOL If you are sure you have a dignosis, I do not see a great need for a biopsy to be done, but that is just my personal opinion.

 

If you do decide on the biopsy, the gluten challenge is usually 2-4 weeks long in order to get an accurate biopsy.

 

What blood tests were done?  If you have multiple positives, or a positive EMA IgA or DGP IgG, then it's a sure thing it's celiac.  Sometimes a weak positive tTG IgA can indicate something other than celiac disease such as thyroiditis, crohn's, colitis, diabetes, chronic liver disease, or a serious infection - that is just weak positives though in a small minority of positive tests. Most positives are from celiac disease.

 

Best wishes!

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Thank you all for the replies.

My tTg igG is the only thing that came back postive.

I talked with my GI doctor and he said he will try to get me in next week for a byopsy. I thought

That was awesome because he was booked up but I told him and his staff I really hated to wait because I want to

Go gluten free ASAP because I can't take feeling like this.

So we shall see how this unfolds!!

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