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Dr. Peter Green - 2012 Cdc Conference
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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.

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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.

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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.

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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
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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.

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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. :)

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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. :)

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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.

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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).

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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.

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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!

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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!

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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.

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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! :)

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    • Thank you! I will call and ask for a full panel and see where it leads!!
    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
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