Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

"continuing Villous Atrophy" On A gluten-free Diet

frec

Recommended Posts

frec Contributor
frec
Posted

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.)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


DingoGirl Enthusiast
DingoGirl
Posted

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.

:)

Lisa Mentor
Lisa
Posted

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.

jerseyangel Proficient
jerseyangel
Posted
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 ;)

frec Contributor
frec
Posted
  • Author

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.

nutralady2001 Newbie
nutralady2001
Posted

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

confusedks Enthusiast
confusedks
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


frec Contributor
frec
Posted
  • Author

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!

confusedks Enthusiast
confusedks
Posted

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.

ravenwoodglass Mentor
ravenwoodglass
Posted
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.

Rikki Tikki Explorer
Rikki Tikki
Posted

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Guinness, can you drink it?

      This is why Daura Damm can be a sponsor here--at 3ppm or less it is gluten-free, and it's doubtful that anyone with celiac disease would ever have issues with such levels. Some people may be reacting to the yeast in the beer, but I seriously doubt that such beers could trigger elevated antibodies or villi damage--the science says such levels won't trigger...
    2. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      7

      Related issues

      I have to express some significant skepticism about the drclark cleansing programs you've mentioned. The claim that a specific, three-part parasite and organ cleanse is a universal solution for chronic health issues is a major red flag, as it oversimplifies the immense complexity of the human body and conditions like Celiac disease, which is an autoimmune...
    3. Donna Moxley
      - Donna Moxley commented on Scott Adams's article in Latest Research
      2

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

      I was not a well child and on my own would stop eating certain foods when a stomachache occurred. As I got older, I began more and more anemic and ended up unable to hold food down at all. Once an endoscopy occurred, doctor said I had an obstruction in my stomach but nothing said about Celiac Disease. Dr. did stomach bypass surgery, removed a 1/3 of my...
    4. Scott Adams
      0

      Going Low-Gluten May Harm Good Gut Bacteria, Researchers Warn

    5. cristiana
      - cristiana replied to Mell2's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      Rectal pain

      When I have had what I think are episodes of this (I've never had a formal diagnosis for PF) it seems to be triggered by bloating caused by something I've eaten - a friend had an episode of this after eating too many apples, for me corn and rice cakes seemed to give me IBS and trigger this. I am not a medical person but it seemed like the extra pressure...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,277
    • Most Online (within 30 mins)
      7,748
    Michellesmitty
    Newest Member
    Michellesmitty
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Guinness, can you drink it?

      By Scott Adams · Posted

      This is why Daura Damm can be a sponsor here--at 3ppm or less it is gluten-free, and it's doubtful that anyone with celiac disease would ever have issues with such levels. Some people may be reacting to the yeast in the beer, but I seriously doubt that such beers could trigger elevated antibodies or villi damage--the science says such levels won't trigger celiac disease issues.  
    • Scott Adams
      Related issues

      By Scott Adams · Posted

      I have to express some significant skepticism about the drclark cleansing programs you've mentioned. The claim that a specific, three-part parasite and organ cleanse is a universal solution for chronic health issues is a major red flag, as it oversimplifies the immense complexity of the human body and conditions like Celiac disease, which is an autoimmune disorder, not a parasite infection. Regarding your Celiac disease, the reaction you describe, while real to you, does not necessarily confirm a diagnosis; a delayed reaction is common with various digestive issues, and a definitive diagnosis typically requires specific blood tests and an intestinal biopsy, not just a provider's acceptance of symptoms. Furthermore, your mention of approaching mayors seems to misunderstand the role of local government versus federal policy; the deduction for gluten-free food is a federal tax law, and a mayor has no jurisdiction to implement widespread Celiac screening, which is a medical and public health decision far beyond a municipal leader's purview. It sounds like you are navigating a difficult health journey, but I would strongly advise consulting with qualified medical specialists and registered dietitians over relying on unverified online cleansing programs.
    • cristiana
      Rectal pain

      By cristiana · Posted

      When I have had what I think are episodes of this (I've never had a formal diagnosis for PF) it seems to be triggered by bloating caused by something I've eaten - a friend had an episode of this after eating too many apples, for me corn and rice cakes seemed to give me IBS and trigger this.  I am not a medical person but it seemed like the extra pressure down there perhaps added pressure to already sensitised pelvic and rectal muscles. Coeliacs can suffer from bloating when they are first diagnosed due to the inability to digest food properly.  Lactose for me caused a lot of bloating and when I came off it temporarily after diagnosis it helped reduce bloating.  Iron supplements and the timing of taking them also caused discomfort and I had to experiment a bit with type and timing before my gut felt comfortable.   Maybe something to think about?   Some coeliacs suffer from constipation - again, just a thought, but perhaps if you had issues with that it might be a contributor.
    • Rogol72
      Guinness, can you drink it?

      By Rogol72 · Posted

      At a family wedding in Italy last year I was drinking gluten free Peroni which was fine for me. From the Daura Damn website ... " Our guarantee less than 3ppm: each batch is analyzed and certified by the CSIC using the R5 Competitive ELISA test before hitting the market. This way, we ensure that its gluten content is always below 3ppm "
    • Mari
      Related issues

      By Mari · Posted

      Hi jmartes, I brought up doTerra's website and see that they do have many supplements, offer  support and help. And using their organic products has been helpful. and yet you are not able to work enough to support yourself when, if you were healtht, you could work for another 20 years. It does not seem that they offer a program to follow and instead are offering supplements for your symptoms. This has helped you but you are not able to work very much.  The Programs I have seen  online usually have 3 parts. The first is a Parasite cleanse. The 2nd is the Kidney cleanse and the  3rd is a Liver cleanse and gallbladder cleanse. You need to doall these cleanses to have your whole body functioning well. I can only reccommend the program I gave you because that is the one I used and still do. (drclark.net)  When I see a newprovider and tell I have Celiacs and they look skeptical I tell them that when I am gluttoned the reaction happens 8 or more hours later with intestinal painful cramping followed by diarrhea. Providers are willing to accept tha I probably have Celiacs and are more likely order tests such as vitamin levels. Is this what happens if you eat only a small amount of Gluten? You mentioned going to Mayors. 20 years ago many Dr.s wanted to include a celiac screening as a standard test so that more people eould diagnosed and not become disabled. It did not happen but the Federal levgislature did pass a law so that Celiacs could claim deductions for the gluten free food they bought. What were you going to ask the Mayors to do?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.