Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Dr. Peter Green - 2012 Cdc Conference
0

14 posts in this topic

Since Probiotics are a frequent subject here, I thought it appropriate to post Dr. H. R. Peter Green's statement at the 2012 CDF Conference, as published in Celiac Disease Foundation INSIGHT publication (fall 2012):

"There is no evidence that probiotics are of any value in celiac disease to my knowledge, and people should be very careful, because this is all a non-regulated or poorly regulated industry. And you don't know where these things are coming from, really don't know what's in them. To my knowledge, they haven't been proven to be harmful, but they haven't proven to be helpful either."

...just food for though.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Thanks Lisa:). That is interesting. I've never been able to tolerate them myself, and 3 gastroenterologists I have seen told me they are not necessary in my case when I have asked about them.

0

Share this post


Link to post
Share on other sites

I know a lot of people find them helpful. I was told by my doctor early on to get mine from my foods, and I do. My husband has tried repeatedly to get me to take a multivitamin, or has told me when I was buying yogurt all the time and such to just buy probiotics, things like that. Every time it comes up, I tell him basically the same thing that Dr. Green said. The industry has little to no oversight and regulation, there is no way to truly know what is in the pills I buy other than the say so of the company that wants my money and how much can I truly trust them? Thanks, but no thanks. I think it is great that some people are able to use these types of products and get help from them, but they aren't for me.

0

Share this post


Link to post
Share on other sites

I have great respect for Dr. Green.

However, there are dozens of Pub Med articles that conclude that they are beneficial in treating any number of gastrointestinal diseases, including celiac disease.

Of note is Dr. Fasano's research work regarding leaky gut junctures and healing the intestinal barrier, with probiotics as one of the options.

My GI doc specifically suggested Culturelle for the treatment of D (when I was diagnosed) and he suggests them to his celiac disease patients with concurrent C. Diff. (again, there are Pub Med articles that support this treatment.) Culturelle was studied extensively at Tufts University. I would not suggest them to anyone if I felt they were harmful in any way.

I agree that no one should take them if they do not agree with your system or if you do not feel the need for them.

I no longer take them as regularly as I had been since I have begun to absorb again and no longer suffer continuous D or C, but they were very helpful to me in the beginning when my GI tract was very damaged. I had no beneficial gut bacteria when tested after DX and I needed to load up on the "good guys".

Obviously, people should take great care in selecting any product before using it. Buy them from reputable companies.

Harvard Health reports: "Probiotics are generally considered safe — they’re already present in a normal digestive system . Be sure the ingredients are clearly marked on the label .. There’s no way to judge the safety of unidentified mixtures."

Edited by IrishHeart
0

Share this post


Link to post
Share on other sites

I have great respect for Dr. Green.

However, there are dozens of Pub Med articles that conclude that they are beneficial in treating any number of gastrointestinal diseases, including celiac disease.

My GI doc specifically suggested Culturelle for the treatment of D (when I was diagnosed) and he suggests them to his celiac disease patients with concurrent C. Diff. (again, there are Pub Med articles that support this treatment.) Culturelle was studied extensively at Tufts University.

I agree that no one should take them if they do not agree with your system or if you do not feel the need for them.

I no longer take them regularly since I have begun to absorb again and no longer suffer D or C, but they were very helpful to me in the beginning when my GI tract was very damaged.

Obviously, people should take great care in selecting any product before using it. Buy them from reputable companies.

Harvard Health reports: "Probiotics are generally considered safe — they’re already present in a normal digestive system . Be sure the ingredients are clearly marked on the label .. There’s no way to judge the safety of unidentified mixtures."

I agree with you Irish! However, I would add that as much as I respect Dr. Green for his medical knowledge of Celiac, he is an AMA doctor and I don't always agree with him 100% with regards to things like this. I also do not agree with his stance on endoscopies. He is adamant about having one for diagnositic and follow up reasons but I don't agree. Not everyone on the planet needs to be scoped. Doctors have become too reliant on them and now they won't even render a diagnosis and use their little brains to figure things out using the many other avenues available because they want to "see" damage to believe it. This is the mentality that keeps millions from obtaining a diagnosis and their suffering goes on.

I have been using a very high quality, expensive probiotic for 25 years now because a long time ago, when I was having horrific stomach problems, my doctor decided to do stool testing and discovered I had virtually no good bacteria in my gut, due to the then undiagnosed Celiac and other problems I had. I started using them and never stopped because I find that my plumbing works better with them included in my diet. As far as I am concerned, you can never have too much good bacteria in your gut! There is so much crap in our food, antibiotics are taken too frequently (for some) that I think it a good idea for those with stomach problems. If you are having trouble with them, then by all means stop but that should be investigated because good bacteria should not cause problems in your system.

As far as the age old stance of the AMA in that anything not blessed by the FDA and the AMA is dangerous and the ingredients cause for worry....bunch of horse pucky. If you use a good probiotic from a reputable company, that should be sufficient to not cause worry. The FDA constantly approves drugs that go on to kill some people or cause serious harm so the FDA needs a dopeslap...it's all about control for them and a piece of the money pie.

1

Share this post


Link to post
Share on other sites




I know a lot of people find them helpful. I was told by my doctor early on to get mine from my foods, and I do. My husband has tried repeatedly to get me to take a multivitamin, or has told me when I was buying yogurt all the time and such to just buy probiotics, things like that. Every time it comes up, I tell him basically the same thing that Dr. Green said. The industry has little to no oversight and regulation, there is no way to truly know what is in the pills I buy other than the say so of the company that wants my money and how much can I truly trust them? Thanks, but no thanks. I think it is great that some people are able to use these types of products and get help from them, but they aren't for me.

Addy....probiotics have been on the market for years now. If they were that dangerous, then you would be reading about all the deaths and illnesses that they supposedly may cause. The talking heads on TV have nothing better to do than report bad stuff and yet......silence with regards to probiotics. You can't say that about the overrated, "blessed by the FDA" pills that are always being taken off the market due to serious injury. The med for IBS? Pulled from the market due to intestinal bleeding. I have never heard of one case where probiotics were even thought to have caused a problem. They are basically a combo of good bacteria and those you can look up in any medical journal. The bottles are labeled properly and almost always have an allergen warning. They did that long before any one else did.

Celiacs have compromised guts and using them can be of great benefit. These good bacteria support your immune system and most of your immune system is based in the gut. No need to be afraid of them or think they have evil ingredients! It's good to get them in yoghurt but you have to eat a lot of yoghurt to get the benefits. I doubt most people eat THAT much yoghurt on a daily basis. :)

0

Share this post


Link to post
Share on other sites

Addy....probiotics have been on the market for years now. If they were that dangerous, then you would be reading about all the deaths and illnesses that they supposedly may cause. The talking heads on TV have nothing better to do than report bad stuff and yet......silence with regards to probiotics. You can't say that about the overrated, "blessed by the FDA" pills that are always being taken off the market due to serious injury. The med for IBS? Pulled from the market due to intestinal bleeding. I have never heard of one case where probiotics were even thought to have caused a problem. They are basically a combo of good bacteria and those you can look up in any medical journal. The bottles are labeled properly and almost always have an allergen warning. They did that long before any one else did.

Celiacs have compromised guts and using them can be of great benefit. These good bacteria support your immune system and most of your immune system is based in the gut. No need to be afraid of them or think they have evil ingredients! It's good to get them in yoghurt but you have to eat a lot of yoghurt to get the benefits. I doubt most people eat THAT much yoghurt on a daily basis. :)

I am, by no stretch of the imagination, a fan of the FDA. Maybe what I said came off poorly. I did not imply that they are unsafe, which is why I included the statement that I know that a lot of people find them helpful, and I think that is just great, but that they aren't for me. I have in the past read stories and studies on vitamins and probiotics that show that many do not contain what they actually claim to contain. My problem with the lack of oversight isn't that I think they need some sort of special approval because they are unsafe. My issue is that there is no way to actually know what is, or is not, in them. The single report I saw on probiotics (most I have seen have been on vitamins) showed that many contain much less live bacteria than they claim to and some actually contained none at all. I don't think they have evil ingredients, it is the lack of ingredients that many claim to have that bothers me.

No, I don't think it can really hurt any of us (barring some sort of bizarre medical reason) to take a probiotic. I also don't think that every one of us automatically needs them. Yes, clearly we have intestinal issues. I also think that as we are healing and become healthy that there is no reason we can't maintain what we need for our health from a healthy diet for those who aren't severely restricted. If you feel better taking them, then by all means do so! I'm happy that you feel better. I simply fail to believe that people were meant to take pills every day, we were born to eat. I think that in the end, there is plenty of room for both of us to have our differing opinions on this one. :)

0

Share this post


Link to post
Share on other sites

I agree with you Irish! However, I would add that as much as I respect Dr. Green for his medical knowledge of Celiac, he is an AMA doctor and I don't always agree with him 100% with regards to things like this. I also do not agree with his stance on endoscopies. He is adamant about having one for diagnositic and follow up reasons but I don't agree. Not everyone on the planet needs to be scoped. Doctors have become too reliant on them and now they won't even render a diagnosis and use their little brains to figure things out using the many other avenues available because they want to "see" damage to believe it. This is the mentality that keeps millions from obtaining a diagnosis and their suffering goes on.

I have been using a very high quality, expensive probiotic for 25 years now because a long time ago, when I was having horrific stomach problems, my doctor decided to do stool testing and discovered I had virtually no good bacteria in my gut, due to the then undiagnosed Celiac and other problems I had. I started using them and never stopped because I find that my plumbing works better with them included in my diet. As far as I am concerned, you can never have too much good bacteria in your gut! There is so much crap in our food, antibiotics are taken too frequently (for some) that I think it a good idea for those with stomach problems. If you are having trouble with them, then by all means stop but that should be investigated because good bacteria should not cause problems in your system.

As far as the age old stance of the AMA in that anything not blessed by the FDA and the AMA is dangerous and the ingredients cause for worry....bunch of horse pucky. If you use a good probiotic from a reputable company, that should be sufficient to not cause worry. The FDA constantly approves drugs that go on to kill some people or cause serious harm so the FDA needs a dopeslap...it's all about control for them and a piece of the money pie.

I go to Dr Green's office at Columbia for treatment, and I can say from my experience with their nutritionist, they are very conservative about supplements. I recall just after I was dx'd I was told to bring in the supplements I was taking. I brought in a bag of them, and they said get rid of everything except the vitamin D and then said to take a basic Multi. The rest was to get whatever I needed from food. I did not take that approach, but I cannot say for sure that my way of taking various minerals and amino acids and herbs has helped me any more than just a multi and food.

When I went to a Functional Medicine doctor, I also found out I had zero of the good bacteria and an overgrowth of the bad (disbiosis). So I was put on a flagyl type antibiotic and then did a treatment of VSL #3 to restore everything. It did wonders to help me, so I tend to disagree with Green on that point also.

If you don't want to take a probiotic you can eat some fermented foods and get enzymes and probiotics that way.

0

Share this post


Link to post
Share on other sites

My gut continued to leak for years until I got on to VSL#3 also. Worked wonders for me too! Just because he is Dr. Green does not mean that he knows everything (although I do respect him).

0

Share this post


Link to post
Share on other sites

A friend of mine is a graduate psychology student, and was recently rejected for a

grant to study the effect of probiotics in the treatment/prevention of schizophrenia.

His application was rejected because there is already a study in progress! And they

don't fund repeats.

I don't think there is a single doctor out there who has all the answers. I also don't

think there is a single 'treatment' out there that is appropriate for everyone. I personally

benefit greatly from PB8, and have tried going off of it, much distress ensued. But it's

not going to work for everyone.

0

Share this post


Link to post
Share on other sites

I agree, Bun and I want to clarify so I don't look like a meanie. lol

I'm in no way against probiotics, just sharing my own experience cuz, really that's all I got :)

I actually have two friends who do great with them and swear by them-- whatever works for ya!

0

Share this post


Link to post
Share on other sites

I also do not agree with his stance on endoscopies. He is adamant about having one for diagnositic and follow up reasons but I don't agree. Not everyone on the planet needs to be scoped. Doctors have become too reliant on them and now they won't even render a diagnosis and use their little brains to figure things out using the many other avenues available because they want to "see" damage to believe it. This is the mentality that keeps millions from obtaining a diagnosis and their suffering goes on.

Boy do I agree with this! I could not be scoped because of duodenal ulcers and so will never have that "gold standard" diagnosis since I can't go back on gluten... I do respect Dr. Green too... but nobody knows everything.

I also can't tolerate probiotics but am glad they've helped others. I want to try them again someday, but I sure wish they were cheaper!

0

Share this post


Link to post
Share on other sites

I agree with you Irish! However, I would add that as much as I respect Dr. Green for his medical knowledge of Celiac, he is an AMA doctor and I don't always agree with him 100% with regards to things like this. I also do not agree with his stance on endoscopies. He is adamant about having one for diagnositic and follow up reasons but I don't agree. Not everyone on the planet needs to be scoped. Doctors have become too reliant on them and now they won't even render a diagnosis and use their little brains to figure things out using the many other avenues available because they want to "see" damage to believe it. This is the mentality that keeps millions from obtaining a diagnosis and their suffering goes on.

I have been using a very high quality, expensive probiotic for 25 years now because a long time ago, when I was having horrific stomach problems, my doctor decided to do stool testing and discovered I had virtually no good bacteria in my gut, due to the then undiagnosed Celiac and other problems I had. I started using them and never stopped because I find that my plumbing works better with them included in my diet. As far as I am concerned, you can never have too much good bacteria in your gut! There is so much crap in our food, antibiotics are taken too frequently (for some) that I think it a good idea for those with stomach problems. If you are having trouble with them, then by all means stop but that should be investigated because good bacteria should not cause problems in your system.

As far as the age old stance of the AMA in that anything not blessed by the FDA and the AMA is dangerous and the ingredients cause for worry....bunch of horse pucky. If you use a good probiotic from a reputable company, that should be sufficient to not cause worry. The FDA constantly approves drugs that go on to kill some people or cause serious harm so the FDA needs a dopeslap...it's all about control for them and a piece of the money pie.

I agree with you. After 2 years of staying off of gluten and taking probiotics, my gut is healing. The doctor I got the probiotic infor has gluten intolerance himself. This is what he takes, so I trust him.It is by Ortho Molecular Products and is called Ortho Biotic. I have had food sensitivities and it is getting better. Once I am all healed up, I expect I will be able to eat many things again as long as I rotate my foods.

0

Share this post


Link to post
Share on other sites

I agree with you. After 2 years of staying off of gluten and taking probiotics, my gut is healing. The doctor I got the probiotic infor has gluten intolerance himself. This is what he takes, so I trust him.It is by Ortho Molecular Products and is called Ortho Biotic. I have had food sensitivities and it is getting better. Once I am all healed up, I expect I will be able to eat many things again as long as I rotate my foods.

I am happy to hear you are healing and feeling better! The longer you remain gluten-free, the better you will feel. It also helps to have a doctor who is gluten intolerant! :)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,657
    • Total Posts
      921,628
  • Topics

  • Posts

    • Hi, you can try reporting your own post.  That should alert the site admin of your request.  I don't think they can delete your posts, but changing your user name may be possible.
    • Hi Pablito, Welcome to the forum! You are right, you should keep eating gluten  until the tests are all done.  The skin problems you describe ma be a condition only celiacs get.  The condition is called dermatitis herpetiformis (DH for short),  DH causes an itchy rash that is usually symetrical on the body.  You get the rash on both arms or legs etc.  It makes little blisters on the skin.  They are caused by IgA antibodies in the skin.  There i a test for DH where they take a small skin sample (biopsy) from the skin next to a blister and check it for IgA antibodies.   If they find DH, then you have celiac disease.  The 2 conditions are never separate.  there is a section of this forum dedicated to dermatitis herpetiformis with lots more information. The usual diagnostic process is to do a celiac antibodies blood test first, and then an endoscopy to test for damage to the gut lining.  But with DH, it is better to get the skin biopsy done instead of the endoscopy. Celiac disease is passed on in genes, so your children should be tested also if you are diagnosed.
    • Research Celiac Ataxia for potential diagnosis. Look at Milk and dairy for potential head and sinus related issues.  I stopped dairy and I can breathe now! Saturated fat may also be a problem, but it's mostly dairy!
    • It is best not to try and do this on your own. Talk to your allergist. Not all will deal with food intolerances but if yours doesn't find one who will.  Mine had me fill out a very detailed diet questionaire and tested for true allergies before he gave me my starting point. I will admit I wasn't real happy with my starting point since none of my usual foods were on it. He said that I was most likely to react to foods I ate the most so most of the 5 I either rarely ate or didn't really like. The prescribed starting point he formulated was designed to make sure I had adaquate nutrition and enough calories.   It took about 2 weeks before a lot of my tummy issues resolved and I was then able to start adding foods in one at a time for a week before moving on to the next.  He said food intolerance reactions can take up to a week to show up so I had to be sure it was a full week between food additions. I did have to call three offices before I found a doctor who could do the formulation of the diet but this guy truely saved my life. Out of all the doctors I had seen, including specialists in big hospitals, he was the one responsible for finally realizing I was celiac. He of course referred me back to my clueless GI doctor who confirmed the diagnosis by almost killing me with a gluten challenge. I should note that some of my intolerance (not gluten of course) did resolve after I had healed. Even dairy which I hadn't been able to have for years! I hope you can get some answers and are able to heal soon.
    • I'm 43 years old. I'm married and have two teen daughters. After all these years it was one of my daughters who tonight said to me: "you probably have Celiac disease" after hearing my wife and I talking about all the pimples I always get on my arms. I never heard of the disease but I have heard about a lot of people having gluten allergies and didn't know they were the same thing. So I started looking it up on the internet. Turns out I have had all the symptoms all my life and no one has ever said anything about it possibly being Celiac disease. When I was a kid my doctor gave me prescriptions to antibacterial soaps to use for the arm pimples. Hibitane I think was one of them. And I've always had swollen looking ankles as long as I can remember. All my life people have noticed it. As a kid and teen I played lot's of sports and have broken my ankles and sprained them so my mom and I brushed it off at that and so did my family doctor when I was young.  But I always thought it was weird that the swelling continued all these years.  I have had a bloated feeling stomach all my life too and chronic diarrhea. My stomach is always hard and swollen feeling. Not ever knowing what that stuff was related too so I have never mentioned the bloat or diarrhea to a doctor. Just kind of embarrassing I guess. As my wife and I were reading about Celiac Disease on the internet together tonight she pointed out to me that that's probably why these symptoms almost all went away when I did a very low carb diet for about a year straight to lose weight a couple years ago. I had solid bowel movements, no bloat, ankle swelling went down but I thought the improvements were from weight loss and just eating healthier . But perhaps in reality it probably had a lot more to do with not eating all the wheat products/gluten products. So tomorrow I will be seeing my doctor to talk to him about it and to ask for the blood tests. I have read that I should continue eating gluten though until my testing is done. So that is crappy but I guess it's better to know for sure. Something else I think I should point out too is that I get headaches quite a bit after having big meals. Now I am thinking that may have something to do with the gluten too. I have read that some people with Celiac also get headaches with the other symptoms. It's great to see there is a forum like this to help people out with these issues. If I test positive for Celiac I will for sure be following this forum closely for advice and diet/nutrition help.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,657
    • Most Online
      3,093

    Newest Member
    pablito
    Joined