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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.)


diagnosed with celiac disease in 2002--all test numbers off the charts

dairy free since 2000, soy free since 2007

other food intolerances: citrus, sesame, potatoes, corn, coffee

fibromyalgia, osteoporosis

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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.

:)


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

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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.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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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 ;)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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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.


diagnosed with celiac disease in 2002--all test numbers off the charts

dairy free since 2000, soy free since 2007

other food intolerances: citrus, sesame, potatoes, corn, coffee

fibromyalgia, osteoporosis

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Have to agree with the others here , w/o gluten the atrophy of the villi will stop and gradually heal


Diagnosed Eczema 1964 aged 16 but with what I know now from research am sure it was Dermatitis Herpetiformis

Diagnosed Irritable Bowel Syndrome 1969 at age 21 but had it from age of 12 many painful episodes over the years( was probably Coeliac all along)

Diagnosed Hashimoto's Disease/Hypothyroid November 1994

Low B12 November 2006

Low B12 (still!) July 2007 Docs are happy with results just above low end of normal..*sigh*....still need to resolve it

Gluten free since October 2006 after failing gluten challenge

Diagnosed Hiatus Hernia and Los Angeles Grade A reflux via endoscopy October 2007

Diagnosed with Coeliac Disease via same endoscopy / biopsy October 2007 (took them long enough!) despite being gluten-free damage still evident although had been taking iron tablets for iron deficiency without realizing they contained gluten. Subsequent blood tests show :Positive Anti-Gliadin IgA EIA antibodies, Positive Endomysial antibodies ,Positive tTG IgA antibodies of 300 ("normal" range 0-15)

Auto-immune disease goes back at least 5 generations in my family (and counting) Mainly Type 1 diabetes and rheumatoid arthritis.

Number 1 Son has Type 1 diabetes ..diagnosed March 2007 at age 31, number 2 son aged 24 is A/I disease free so far ,daughter has lichen planus ( similar to psoriasis) diagnosed 2003 at age 17 am now wondering if it is DH but with flippancy of the young she won't get any testing done

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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.


Dairy/Casein Free- March 2007

Gluten Free- May 2007

Soy Free- August 2007

Sugar Free- January 2008

Starch Free- January 2008

Egg Free (again!)- February 2008

Sulfur Free- May 2008

Dx'd Lyme Disease and co-infections- December 2007

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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!


diagnosed with celiac disease in 2002--all test numbers off the charts

dairy free since 2000, soy free since 2007

other food intolerances: citrus, sesame, potatoes, corn, coffee

fibromyalgia, osteoporosis

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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.


Dairy/Casein Free- March 2007

Gluten Free- May 2007

Soy Free- August 2007

Sugar Free- January 2008

Starch Free- January 2008

Egg Free (again!)- February 2008

Sulfur Free- May 2008

Dx'd Lyme Disease and co-infections- December 2007

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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.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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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


Nostaglia is a file that removes the rough edges from the good old days!!!!

" 15 years of it's stress!"

"blood work show's a disease called celiac,

but it can't be that because it's rare!"

Diagnosed via blood and biopsy 2003

Not a medical professional just a silly celiac

offering support, my

experience and advice

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