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frec

"continuing Villous Atrophy" On A gluten-free Diet

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I just saw my naturopath. He had me on a GI repair supplement. I finished the bottle and asked if I should stop taking it. He said no, I should take it the rest of my life, because celiacs, even if they remain on a gluten-free diet, continue to have some "continuing villous atrophy". I had suspected this for years (given the way I keep coming up short of nutrients) but my gastroenterologist specifically denied it. Do you all already know about this? I'll google some research, but I also think I should get a new gastroenterologist. (Mostly I'll just go to my naturopath.)

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Ummm......this sounds kind of...fishy. :huh:

You said you wanted a new GI.......but the naturopath is supplying the supplement, right? Is the supplement somethign the naturopath sells? Because if so.....I think they do make quite a profit off of their supplements, and so will insist on selling them, no matter what. <_< Just my two cents.

I, for one, have had unbelievably bounding good health, a serious rise in numbers (ferritin, hemoglobin, all of it), and an unbelievable lowering of the gluten antibodies (Ttg was greater than 100 when I was tested, and my GI reported that the measurement stopped at 100 - so mine was literally off the charts; at the one year mark, my ttg was 17).

Your villi really should only continue to heal on a gluten-free, whole foods diet, if celiac is your only issue.

:)

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A GI repair suppliment sounds like SNAKE OIL to me. <_< I hope your health did not pay too much for it.

I think you need to find a new GI as well as a new Naturopath Dr.

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I just saw my naturopath. He had me on a GI repair supplement. I finished the bottle and asked if I should stop taking it. He said no, I should take it the rest of my life, because celiacs, even if they remain on a gluten-free diet, continue to have some "continuing villous atrophy". I had suspected this for years (given the way I keep coming up short of nutrients) but my gastroenterologist specifically denied it. Do you all already know about this? I'll google some research, but I also think I should get a new gastroenterologist. (Mostly I'll just go to my naturopath.)

If you have Celiac Disease, there is no suppliment that will repair your intestine.

In the vast majority of cases, the gluten free diet, done strictly, will gradually reverse the damage. As the healing takes place, you will begin to absorb nutrients. As for "continuing villous atrophy"--I don't really understand what he means. In the absence of gluten, there would be no more atrophy.

I think the nautropath is the one that should go ;)

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I appreciate the advice, and I am not convinced as to the effectiveness of the GI supplement either. Naturopaths believe in nutritional and herbal supplements, and I can always stop taking this one. But I was diagnosed celiac 5 and 1/2 years ago, and have followed the diet as perfectly as anyone can ever since. Yet I still, when tested, keep showing nutritional deficits and having nutritionally based health problems. I know many people on this forum complain of ongoing health problems even after going gluten-free.

I did some research on PubMed. If you want to do it google villous atrophy, or nonresponsive celiac. There are a lot of interesting abstracts you can read. There is some recent research on biopsy results on patients after going gluten-free. Intestinal healing is slower and less complete than once thought--the best recovery is in children, but older adults can still be healing over 2 years after diagnosis. Histological recovery is slower than endoscopic recovery. There were several articles on bacterial overgrowth and lactose intolerance sometimes causing ongoing problems.

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I agree that you should get rid of the Naturopath. I am all for them, but only if they know what they're doing, and it doesn't sound like this one does. :huh:

If you do still have villi damage, are you dairy free? What about soy free? I know for a fact that dairy can stop/slow the healing process tremendously.

If you are dairy free and you're still not healing, I think they may need to re-scope your intestines to see if you do have refractory sprue. If you don't and you're still deficient in vitamins, minerals, etc. then they need to look into that a little deeper.

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I gave up dairy before 2000. I only gave up soy and casein/whey this year, though (on the recommendation/testing of the naturopath), so maybe that will help. Thank you.

What I'm reading on PubMed, however, shows my naturopath is correct. There is research that shows continuing villous atrophy in some celiacs. He still may be ripping me off on the supplement, though!

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Frec,

I would be worried that if you do have continuous villous atrophy, that needs to be checked out. If in fact you do have refractory sprue, that needs to be taken seriously.

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He still may be ripping me off on the supplement, though!

One thing that I would like to add in addition to the good advice you have already gotten is that it is not uncommon for naturopathic meds to be contaminated or grown on, or formulated with small amounts of gluten, casien, and soy. I have recieved 'scripts' for supplements etc and even found allergen warnings on them for substances that I had just talked in depth with one about being sensitive to. Half of the ones that didn't have warnings turned out to not be safe when the maker was called. Unfortunately I took them first and only thought to call after I reacted. He also pronounced that I would be taking everything indefinately and any gluten reactions were blown off as a 'healing crisis', excuse me I know when I am glutened.

You also need to be wary of where and how some of the stuff is formulated. I was at the naturopaths 'pharmacy' on my last visit and a very young man walked in announced he was back for lunch and was set to work on the other side of the room formulaing tablets. He never went near a sink or a pair of gloves. The 'pharm' introduced me to him to me as her son, who had a short day at school that day. They also had shelves full of clear glass jars with various plants that they grew in their home garden for use. I thought they were just for display until I saw her take one down. Herbs and such should almost never be stored in clear glass. Many react to light and their properties and potency is effected. Anyway be careful and look around the prep area if they make their own formulas.

There are good naturopaths out there, many have had good experiences. As with any medical professionals we need to be careful, unfortunately, when we deal with their treatment of us. They just don't know much about this genetic difference and while I don't think they are trying deliberately to keep us symptomatic their ignorance of our sensitivities can do just that.

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I think you also need to double check you are not somehow ingesting gluten, double check everything. Also, if you are not healing it could be refactory sprue, which may mean you need to be on steriods, that is what happened with me and now I am fine

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I just had my kid retested for celiac disease and we are waiting for the results.  Her doctor does not hesitate to test since I have a firm diagnosis.  I can also say that my PCP and GI  never hesitate to check for other AI issues either.  They know that you can develop more than one autoimmune disorder.  Better to catch it early before damage!   If you get an endoscopy, be sure to do a gluten challenge 2 to 4 weeks prior or your result will be negative!  
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