If Not Super Sensitive..is Damage Still Being Done?
Posted 10 December 2012 - 10:37 AM
Posted 10 December 2012 - 11:06 AM
Posted 10 December 2012 - 07:40 PM
Posted 11 December 2012 - 12:02 AM
Posted 11 December 2012 - 05:35 AM
has lead me to believe that different celiacs have different levels of sensitivity. It is known that there are different genetic make ups which produce celiac disease, and I think that these are likely to be at least part of the cause of the differences. http://www.ncbi.nlm....les/PMC2944025/
There are also cases of asymptomatic celiac coming down with cancer and stuff like that. Most don't. If concerned, I would do a follow up colonoscopy.
Posted 11 December 2012 - 09:28 PM
Posted 11 December 2012 - 09:29 PM
Posted 12 December 2012 - 04:15 AM
"This study is very clear in indicating that the daily intake of 10 mg of gluten (i.e. an amount 667 times higher than the estimated TDI of 15 micrograms!) for 3 months (!) in known adult celiac patients did not cause any damage"
Posted 12 December 2012 - 11:41 AM
The issue for my husband is that if he's reacting to something but not feeling it..there's no way to pinpoint what might or might not be doing him damage. He's scared he's still doing damage and just not knowing it. He wants to know if he's simply a non reactor but he's worried he could be doing damage on small amounts without knowing it because he doesn't react. We did the enterolab stool tests because it seems to be about right and all especially for me. The main thing besides elevated immuno reactions in his stool he had TWICE the fat in his stool to mine even though i have worse reactions to things. So i guess he should just re-test after a year and see if he's any better? We don't see the point to colonoscopies unless worried about cancer because much of the time they seem to miss anything and say you are fine.
Posted 13 December 2012 - 04:24 AM
This makes diet choices very difficult. In my case, I am so sensitive that I am happy if I can manage to be symptom free. My son needs the same diet for the same reason. My daughter is less sensitive and off at college so it isn't practical for her to eat as carefully as we do. Still, I am trying to make changes so that I can offer her as much safe food as possible. She gets glutened much more often than she would like. Then there is my typical celiac husband. He eats whatever. He doesn't think that he has symptoms, but I see a big difference in his mood depending on what he has just eaten. I recommend to him that he at least only eat foods certified to be below 5 ppm, but he doesn't. If it says gluten free on the label that is good enough for him. His follow up enterolab test was still pretty high.
Maybe in 20 years the medical understanding of this condition will be great enough to give us better advise. In the meantime we have to live our lives best we can.
Posted 13 December 2012 - 02:53 PM
Posted 13 December 2012 - 02:58 PM
Posted 14 December 2012 - 11:49 AM
You raised a good question about possible undetected damage at lower levels of gluten. I sort of remember one study was done where they tested people for I think it was 20 ppm, but a few people had to drop out due to symptoms at that level. Most were fine though. So there is a difference in what people can tolerate.
A repeat endoscopy might be a good idea to be sure if there is damage. That is one way to check for it besides blood antibodies. But endoscopy is expensive and invasive too so it may not be worth the risk. If antibodies in the blood are staying low and there are no symptoms it seems like that is fairly good sign. Maybe the only signs we have at this point too.
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul
Posted 14 December 2012 - 12:24 PM
Well I am Celiac, I had many classic symptoms since I was 9 years old. I am very careful about what I eat but I don't get paranoid about 10 ppm. My answer to your question is its up to you how careful you want to be. As long as I always cook my own food and when I don't, I know how to identify gluten on labels and eat right in restaurants, I am fine.
I'm not sure if you misunderstood what I am saying. I'm simply saying...for all of us...should the less sensitive people be treating themselves as super sensitive even if their not considering the fact that even if you are not sensitive damage is being done to your gut anyhow? How do we know 10 ppm is okay for some if super sensitives react? Because if people who are non sensitive are not reacting but damage is still being done wouldn't that mean we should all eat as super sensitive celiacs? Regardless of if we get a reaction?
Posted 14 December 2012 - 12:31 PM
I too worry that I accidentally ingest because I haven't pinned down an obvious gluten reaction. The closest thing I can think of would be kinda feeling like I should have a fever but don't, and being moody...and that's just a maybe because such things are so hard to pinpoint.
From what I've read about this, as steph has already talked about, is that celiac disease, as it stands right now, is only defined by damaged villi. There have been various studies that find the upper limit on how much gluten diagnosed celiacs can have before they will show damaged villi. That's around 20ppm. Whatever a super sensitive's reaction, no matter how severe, I suspect they wouldn't show damaged villi from it.
As to non-villi damage...well, yes, maybe all celiacs should be more careful due to reactions super sensitives have. But without symptoms, known long-term health benefits, or a full understanding of celiac disease and gluten intolerance, that's a pretty hard sell.
June 2012 positive visual of celiac disease from gastroscopy
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