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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Confued About Biopsy
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7 posts in this topic

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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    • Hey Matt  thanks for your reply fellow Brit! I this is very interesting... I am very sensitive to cross contamination... e.g. A sieve wasn't washed properly when I lived at my mums so when I had drained my gluten-free pasta .. I hadn't even eaten the dish before I started to pass out and go dizzy and hot .. calling for my bf and mum ( they had a great team going when I would have an episode) it's horrendous!  The fatigue is something I imagine every coeliac suffers with! I have to nap a lot.  Ok so the booze I drink most of is -processo -amaretto -vodka, wine, cider (very rarely)  when I drink at home I'm fine!!!  I wonder if it's cross contamination from the bar or the level of alcohol?!  I also had a jäger bomb shot on Friday (looked it up and a lot of people say it's gluten-free)  it's a hard live but someone's got to do it!!  Thanks for the reply!  When you get poorly from gluten (and the other evil candidates) are you so bad you can't function and feel your body is about to snap?  Kind regards  steph 
    • Hi Steph and welcome I'm yet another Brit, funny how the alcohol threads flush us out I don't drink now but after a big night I used to get truly savage all day hangovers, much worse than those of my friends. They could include splitting headaches, vomiting, nausea, a 'fuzziness' in my head, sweats etc.  After I put the pieces together and went gluten free I had a 'big night' on cider only and the next day was a revelation. What I'd thought was a 'normal' hangover was, for me at least, anything but. With gluten out of the equation hangovers were a breeze! The difference was mind blowing and just one more example of how gluten had been messing with me over the years. So when I read your post my first thought was that there was some trace gluten contamination going on. However: Obviously you've been at the diet for some considerable time now and know the score. I know Coeliac UK are firmly of the opinion that all spirits are safe but some (note some this a contentious one :D) members here will tell you they react to gluten based grain spirits for instance which distillation should render safe.  Then there's the dangers of shared lines if you're drinking say Strongbow in a pub as alluded to above. Lastly it its wine, there's the often cited but maybe apocryphal these days 'flour to seal the casks' possibility. Finally there's bar snacks, maybe a brand of nuts etc that you snack on that may have changed their production process? I'm sure you've thought of these already, but it may be useful if you post your alcoholic drink choices / bar snack of choice up here maybe someone will have some input?.   The second thing which leapt out was: Would you class yourself as super sensitive to cross contamination etc? Firstly that would make the cross contamination theory more compelling. You could test that out by having a drink at home under controlled circumstances to see whether the same issue arises? That could also answer the quantity question. Does one safe drink trigger it, two, three etc? Finally, and this is one that I find difficult, knowing you have the gluten issue may lead you to assume it's that when it could be something else. I tend to attribute EVERYTHING in the world to gluten these days due to it being able to affect me in so many different ways. Crisis in Korea? Gluten. Russian tanks massing on the Ukrainian border? Check their wheat intake. Global warming? etc. So it may make sense to pursue some other ideas at the same time. Try:  http://goaskalice.columbia.edu/answered-questions/suddenly-drinking-alcohol-makes-me-sick http://www.steadyhealth.com/topics/very-abnormal-hangovers-thinking-it-could-be-allergy-to-alcohol and a doctor's answer: http://www.steadyhealth.com/medical-answers/abnormal-reactions-to-alcohol Cheers Sorry, best of luck! Matt  
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