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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
      celiac, chocolate and alcohol

      By trents · Posted

      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I had both the genetic genes for celiac.  My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report.  I also had polyps in 3 places throughout my large bowel. I was on a strict diet for months following.  I am sorry if I didnt define how I was diagnosed with celiac disease.  I am sorry if you think I was misleading you. I also had to pay $150.00 for the genetic testing.
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting which showed positive for gluten insensitivity and a biopsy on my next colonoscopy that also showed positive which could not help the damage done to my small bowel. So I very rarely have a glass of wine
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
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