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Confued About Biopsy

glutout

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glutout Rookie
glutout
Posted

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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ravenwoodglass Mentor
ravenwoodglass
Posted

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.

skigirlchar Newbie
skigirlchar
Posted

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.

tarnalberry Community Regular
tarnalberry
Posted

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).

glutout Rookie
glutout
Posted
  • Author

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!!!

ravenwoodglass Mentor
ravenwoodglass
Posted

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.

glutout Rookie
glutout
Posted
  • Author

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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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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