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Confued About Biopsy
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Hi. I was diagnosed in Jan. with celiac disease through a biopsy of my intestine. I feel better in some ways but still have symptoms, which I guess may or may not be from celiac disease. I found out that I have been eating gluten by mistake from time to time.I talked to my doc and told them all of this. He said that because my biopsy was "not definate but consistent for Celiac Sprue" I could do a genetic test. Why would I need that? Isn't that going to cause me more confusion if my biopsy says one thing and the genetic test says another? I am not sure what the results mean...is it that I have celiac disease maybe? Does anyone think I should go ahead with the genetic test? I surely don't want to eat gluten-free if I don't need to, right? :blink:

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Hi. I was diagnosed in Jan. with celiac disease through a biopsy of my intestine. I feel better in some ways but still have symptoms, which I guess may or may not be from celiac disease. I found out that I have been eating gluten by mistake from time to time.

The key to your continued symptoms is likley what I have bolded. You should become strict with the diet and likely that will be the end of your issues. If after a couple months of strict gluten free living, and there is much more to it than just the labels on your food, then perhaps look for other issues. For now go with pure unprocessed foods, make sure your living space is free of cross contamination, stay out of restaurants and check all supplements and meds and see if that takes care of your issues. It is also not uncommon for us to have other intolerances like soy and dairy. Eliminate them both for now and add them back on at a time when you have been feeling good for a while.

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if you feel better when gluten free, then live gluten free

it IS a lot of work. i am still not 100% gluten or casein free (i work much harder to be wheat and soy free)

I came back negative on both the blood work and the biopsy for celiac, but my allergies are so severe that the gluten-free/cf/sf diet (aka celiac diet) is right for me.

it took me a while to get my house gluten-free/CF/SF. now my problem is outside of the house as I work in other people's homes with children (and they are always offering me food, and since many of the kids i work w/ are picky eaters, being a positive example is important so it's a tough battle of eating my own food in front of the kids vs not eating at all vs. eating what is offered.)

the number one thing i have learned though is that i feel better and better each day i follow the diet, and that just a small meal of "banned" food is enough to make me backslide in a big way.

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Yeah, if you've been getting even a very small amount of gluten, you can't expect to have your symptoms go away. If you've seen improvement (without symptoms going away), then I'd be fairly confident that it's celiac. It's not terribly common for biopsy findings that are consistent with celiac to be from something else (possible, but those other things are likely to be eliminated previously, and won't respond the gluten free diet).

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Yeah, if you've been getting even a very small amount of gluten, you can't expect to have your symptoms go away. If you've seen improvement (without symptoms going away), then I'd be fairly confident that it's celiac. It's not terribly common for biopsy findings that are consistent with celiac to be from something else (possible, but those other things are likely to be eliminated previously, and won't respond the gluten free diet).

So you do not think the genetic test is necessary?

Tarnalberry, what other things in the biopsy could be a problem?

Ravenwoodglass, I LOVE your profile picture!!!

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So you do not think the genetic test is necessary?

Tarnalberry, what other things in the biopsy could be a problem?

Ravenwoodglass, I LOVE your profile picture!!!

The genetic test can satisfy curiosity but if they only test for DQ2 and DQ8 you could end up thinking that celiac is not a possibility. There are 7 additional celiac related genes but most doctors don't check for them. I had my genes tested because my biopsy and blood positive daughter had her diagnosis taken away after she was gene tested. That prompted me to test with enterolab to see what gene I do carry and it turns out the I don't carry either of those either. I do however have a double dose of a celiac related gene....if I lived in Asia or Europe anyway.

I really enjoyed taking that picture of the rooster, he was so offended by my doing so! Turns out he got his revenge inadvertently because I got so close to the gluten filled cages I was sick for 2 weeks afterward.

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The genetic test can satisfy curiosity but if they only test for DQ2 and DQ8 you could end up thinking that celiac is not a possibility. There are 7 additional celiac related genes but most doctors don't check for them. I had my genes tested because my biopsy and blood positive daughter had her diagnosis taken away after she was gene tested. That prompted me to test with enterolab to see what gene I do carry and it turns out the I don't carry either of those either. I do however have a double dose of a celiac related gene....if I lived in Asia or Europe anyway.

I really enjoyed taking that picture of the rooster, he was so offended by my doing so! Turns out he got his revenge inadvertently because I got so close to the gluten filled cages I was sick for 2 weeks afterward.

The lab my doctor wants to use is Prometheus Labs. They are supposed to be pretty good, but I don't know how many genes they are testing for.

That is so great you took that picture yourself! It makes me smile except for the fact you had to suffer for it! :(

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    • No I'm in the UK, from what I've been told that's a good thing for gluten labeling and standards compliance. What you and everyone else on here says makes me sense than what the doctors are saying (a confused message at best is what they're giving me, each one with a slightly different version of it). My referral letter is in the post so on theory appointment may not be that far away. I have a load of my favourite Quorn stuff (non-gluten-free version) in the freezer so perhaps using that up may be a good way to proceed for now. I'm out at the moment and torn whether to try chips from a café, in the strict gluten-free future would probably be a no-no but in current situation probably not so bad...
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    • We don't delete accounts but can delete any personal information and change your screen name if you would like. Just send me a personal message with three possible screen names. For the record you can edit most things in your account area with the exception of your screen name.
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