Intestinal Recovery Rate

[bincongo]

I read an article on Celiac.com, sorry I can't remember the name, it said that the intestinal recovery rate was only 34% at 2 years and 66% at 5 years. Three factors influence this rate, those who did not follow the gluten free diet well, those with diarrhea and weight loss and those who showed total villous atrophy on biopsy. I had total villous atrophy on my biopsy so where does that leave me? Some have said it depends on where they took the biopsy. I guess my question is if they did this study did they look at the entire intestine for damage and has anyone done a study on damage done based on where they took the biopsy? If you can point me to studies I would like more information. I know Celiac's feel better on the diet but if only 66% have intestional improvement doesn't that mean more cancer risk for those who don't improve?

I found the article - Mucosal Recovery and Mortality in Adults With Celiac Disease After Treatment With a Gluten-Free Diet

[Emilushka]

Remember: one article isn't enough to create clinical guidelines. I found the article you were talking about. They only looked at 300 patients. Celiac is so different between people that I would wait until you see more studies before jumping to conclusions about yourself.

The key finding from this article is that there may be some usefulness to getting further biopsies to track recovery in adults with Celiac Disease.

Open Original Shared Link

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The answer is that although Celiac predisposes to small bowel cancer and lymphoma, it does NOT predispose to colorectal cancer! YAY! (Didn't want to scare you by leaving the punchline until later.)

Open Original Shared Link

This one best addressed the lymphoma link. Basically what it says is that some people with refractory Celiac have such messed-up T-cells that they develop into a T-cell lymphoma. So this article basically linked the majority of the lymphoma risk to the refractory Celiac population.

Open Original Shared Link

The study of biopsy location seems to be stuck in the "Where should we biopsy?" stage. So I don't think anybody has done anything to figure out what damage where causes what outcomes. This research is all still very much in the baby stages, from what I can tell. However, interestingly enough, making sure there are duodenal bulb biopsies seems to be helpful for getting accurate diagnoses, so hopefully there will be an easier time getting answers for Celiac patients in the future.

[tarnalberry]

Well, keep in mind that studies also find that fewer than half of all diagnosed celiacs actually stay strictly gluten free.

[sa1937]

  On 10/14/2010 at 6:09 PM, tarnalberry said:

Well, keep in mind that studies also find that fewer than half of all diagnosed celiacs actually stay strictly gluten free.

You mean "try as we may" with unintentional CC from time to time...or do they intentionally eat foods that are a no-no?

[Skylark]

  On 10/14/2010 at 6:27 PM, sa1937 said:

You mean "try as we may" with unintentional CC from time to time...or do they intentionally eat foods that are a no-no?

Some in the studies admit to intentionally eating gluten. They tend to be the ones with the poorest and slowest healing, which is not a surprise.

[sa1937]

  On 10/14/2010 at 6:37 PM, Skylark said:

Some in the studies admit to intentionally eating gluten. They tend to be the ones with the poorest and slowest healing, which is not a surprise.

Well that's not at all a surprise then.

[bincongo]

  On 10/14/2010 at 2:49 PM, Emilushka said:

Remember: one article isn't enough to create clinical guidelines. I found the article you were talking about. They only looked at 300 patients. Celiac is so different between people that I would wait until you see more studies before jumping to conclusions about yourself.

The key finding from this article is that there may be some usefulness to getting further biopsies to track recovery in adults with Celiac Disease.

Open Original Shared Link

Open Original Shared Link

The answer is that although Celiac predisposes to small bowel cancer and lymphoma, it does NOT predispose to colorectal cancer! YAY! (Didn't want to scare you by leaving the punchline until later.)

Open Original Shared Link

This one best addressed the lymphoma link. Basically what it says is that some people with refractory Celiac have such messed-up T-cells that they develop into a T-cell lymphoma. So this article basically linked the majority of the lymphoma risk to the refractory Celiac population.

Open Original Shared Link

The study of biopsy location seems to be stuck in the "Where should we biopsy?" stage. So I don't think anybody has done anything to figure out what damage where causes what outcomes. This research is all still very much in the baby stages, from what I can tell. However, interestingly enough, making sure there are duodenal bulb biopsies seems to be helpful for getting accurate diagnoses, so hopefully there will be an easier time getting answers for Celiac patients in the future.

Thanks for the information. I read somewhere that only 5% of Celiac's develop the more serious things like cancer. I figure it must be in the group of 34% whose intestines don't improve. So if I am unlucky enough to be in that group then I did the math and that gives me a 20% chance of not recovering and/or getting cancer. I would guess that 5% is the refractory Celiac population. I am starting out on the wrong foot by having a bad biopsy but what are my choices. I have to be gluten free and 80% odds are better than nothing. I have learned that I will ask for a repeat biopsy. I am not sure how often I should have it done. My Gasto doctor gave me the impression I didn't ever need to come back unless some new problem developed.

[Emilushka]

  On 10/14/2010 at 8:26 PM, bincongo said:

Thanks for the information. I read somewhere that only 5% of Celiac's develop the more serious things like cancer. I figure it must be in the group of 34% whose intestines don't improve. So if I am unlucky enough to be in that group then I did the math and that gives me a 20% chance of not recovering and/or getting cancer. I would guess that 5% is the refractory Celiac population. I am starting out on the wrong foot by having a bad biopsy but what are my choices. I have to be gluten free and 80% odds are better than nothing. I have learned that I will ask for a repeat biopsy. I am not sure how often I should have it done. My Gasto doctor gave me the impression I didn't ever need to come back unless some new problem developed.

Just keep doing what you're doing. Stay gluten-free, be as healthy as possible, see your doc for routine check-ups. Make sure you don't ignore problems. That's honestly the best any of us can do, since we can all get hit by a bus tomorrow and negate all those pesky lymphoma risks completely.

Don't try to take your odds from this research. There's just not enough there for you to know really what it means for you, and saying you have "80% chance" is too scary and potentially totally unrealistic. You may have 99% or 50% or be in a car crash.

All any of us can do is our best. Enjoy what you've got, and don't ignore any symptom that seems WRONG to you. Get your regular health screenings.

At least we have Celiac and not Crohn's or Ulcerative Colitis! Those guys have it worse.