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67 Comments

  1. 1

    Debby

    What the clock is right! I use probiotics, but now I am going to quit because I don’t know which ones are safe, if any. Big companies are protected because they could sue if names were used. Hang those of us with celiac! Just let us dangle in the wind!

    Reply
    1. 1.1

      Gluten Dude

      My guess (hope) is that they will announce them eventually. Hey…a celiac can dream, can’t he?

      Reply
      1. 1.1.1

        Connie

        Actually he did say they purchased 22 of the “best selling” probiotics on the Amazon lists. Makes me think they probably just bought whatever the 22 most popular were.

        GD, do you have the actual name of the study? I’m having trouble finding it amongst all the mucky news articles and I’d like to read the original results.

        Reply
        1. 1.1.1.1

          Gluten Dude

          I don’t. I think it’s being presented soon and then hopefully they’ll release the full report.

          Reply
      2. 1.1.2

        Gail

        I love that What the clock?! Thank you for this great information. I was looking into buying some probiotics, but I could not get any gluten free information regarding probiotics until your site. Thanks again.

        Reply
  2. 2

    Ken

    Class action lawsuit, anyone? I’m not a fan of frivolous lawsuits, but I don’t think that applies here. This is a deliberate, criminal act that resulted in prolonging illness in trusting consumers. I just feel like shrugging our collective shoulders and sucking it up isn’t enough in this case.

    Reply
    1. 2.1

      Jacqueline

      I agree a lawsuit is the only thing that may make a difference.
      I was diagnosed 8 years ago and have never felt well.
      Other autoimmune diseases piled on because I was diagnosed so late.
      There was no money in celiac research because the belief was is you are GF you’ll be fine. NOT TRUE!!!
      Between the GF junk food industry, companies not taking celiac seriously and doctors sending you out the door without the information you really need. We are seriously
      CLOCKED! Gluten lurks in every premade food or supplement or prescription drug. I got a new prescription that was made in India, who knows…they claim it’s GF. Although it has corn(GMO another worry?) Another one is being made at a compounding pharmacy and they aren’t diffinitive as yet!
      I’m not “fear mongering,” this has been my life I hope it doesn’t become any one else’s.

      Reply
  3. 3

    Jennifer

    Yep. Just decided yesterday to stop the probiotics because they seemed to be causing symptoms in my 8yo daughter. I wondered if it was the bacteria and SIBO. Last night my husband sent me the info that they may contain gluten. Well, that certainly explains things.

    Grrrr.

    But at least I know why they were bothering her.

    Reply
    1. 3.1
    2. 3.2

      406 Chick

      I had the same deal. I bought a new probiotic and over the course of the last couple of weeks had seen an uptick in symptoms. That was the only new thing in my diet. Then I saw this. It just makes me want to scream!!!!!!

      Reply
  4. 4

    Ami

    Oh GD… why? Why must there be one more thing for celiacs to worry about and question? I think we need to sick a lawyer friend on this – one who successfully lobbied the FDA to get Food Labeling back on track – to tackle this issue. You know… the one who lives close to DC…

    Reply
    1. 4.1

      Gluten Dude

      i know a guy…who knows a guy…who knows a guy. Actually, I don’t know anyone.

      Reply
  5. 5

    Daniel

    also disturbing is the comment by Dr. Green:

    “We don’t know how many capsules people are taking each day,” he said. “If the level in a capsule is 19.8 parts per million it can qualify as gluten-free. But if people are taking a lot of this product, they’ll get cumulative amounts of gluten that will cause them damage.”

    If people taking a lot of a just under 20ppm product is a problem, why isn’t this then a problem if people are eating food products with just under 20ppm everyday? Or is it? Meaning, i don’t see why his statement wouldn’t apply to all GF labeled foods that have some amount of ppm creating cumulative amounts of gluten causing damage.

    Reply
    1. 5.1

      Karen

      I just finished a student research project for my chemistry program in the lab of one of the top natural health product and vitamin producers in North America. I did a lot of research on testing gluten in preparation for a project on gluten, but ultimately my project was on quality control of a different parameter with their very successful probiotic lines.

      Most GF testing is done using the ELISA method. The limit of detection is 5 ppm, but up to 20 ppm is still called GF.

      The article states that HPLC-MS was used for analysis. This uses extraction methods and complex instrumentation that is capable of detecting very low levels of gluten. It’s pretty darn expensive too.

      They claim gluten was detected in 12 of 22 tested products, but only 8 had GF claims on them. Only 2 out of the 8 probiotics with detectable levels of gluten were >20 ppm. Those two have hopefully been reported.

      We are talking about 2 out of 22 breaking labeling laws here. Considering the huge potency controversy in the US in the past year with the natural health product industry last year, this isn’t surprising.

      As for the 6 of 22 that detected gluten and had the GF label, but still were within allowable limits… I’m not arguing that this is ok… It’s definitely NOT. But they’re compliant with the laws.

      It just smells like fear mongering. I think the outrage could be more appropriately directed towards the 20 ppm allowable limit for GF foods. How is 19 ppm ok when eating large quantities every day? The allowable limit should take into consideration serving size instead of concentration. What if they tested GF foods in this manner?

      That’s like saying “one shot of vodka will hurt you because its 40% alcohol, but have as many beverages that are 7% alcohol as you want…with every meal…every day… you’ll be fine”

      Clock… Now I want my own HPLC-MS to test for gluten in my foods :)

      Reply
      1. 5.1.1

        John

        Correct me if I’m wrong but are the laws about gluten disclosure for quantities >20ppm applicable to food only, while supplements are exempt?

        Which would mean the problem is not simply how much gluten is in them but rather that the industry can load as much gluten as they want into their product, still call it gluten-free and not be subject to any sort of penalty. (Wasn’t this also the case for food before the FDA updated the laws just last summer?)

        And no matter how you slice it, 2 out of 22 (over 9%) is still cause for concern. If you were shopping for a new car and the dealer told you there’s a 9% chance the brakes won’t work, you wouldn’t exactly be in a rush to sign the lease.

        Reply
    2. 5.2

      Deb

      That’s my thought, too. If you eat a lot of 20 ppm foods throughout the day, are you really “gluten free”?

      Reply
    3. 5.3

      Ruth Millican

      I think it does but my guess is he is trying to limit what he is saying to the immediate subject. There have been several times I haven’t been able to locate a cause to my being “glutinated” but I strongly suspect it could have been the build up of multiple servings of foods just under 20PPM. Prepackaged food is my downfall. As I don’t cook I need a live in Celiac Chief. ;)

      Reply
  6. 6

    Lindy

    This really sucks!! You can make probiotics by putting cabbage and sea salt in a mason jar and filling it with water. Make sure it’s airtight and then let it sit at room temp in a dark place for a few days. You will see bubbles forming and then your will eat 1/4 to 1/2 cup a few times a day. You put it in your fridge after you open it. Also HSOs are soil organism probiotics. I only know of two people who make them. Kimberly Snyder and I think his name is Rubin Sparks. He is with the garden of life brand. These probiotics are made in small doses and are pretty potent. Hope this helps someone!

    Reply
  7. 7

    Gail

    Sauerkraut can take a little getting used to but a fantastic brand (if you don’t make your own – I tried but had trouble finding the right amount of sea salt to use) is Bubbies. There’s no sugar, vinegar or preservatives added. The only ingredients are cabbage, artesian well water and salt. It is so good, it actually almost becomes addictive. The only thing is the price – it’s kind of expensive but worth it as a good, reliable probiotic. Also, water kefir is very simple.

    Reply
    1. 7.1

      Connie

      I’m a BIG fan of Bubbie’s sauerkraut. I agree that it becomes addictive. I look forward to eating it all the time. So yummy!

      Reply
      1. 7.1.1

        GF and more

        I adore Bubbies! I make my own sauerkraut, kimchi, and other fermented vegetables but Bubbies is my go-to for when I’m behind and/or didn’t have time to set a batch to ferment.

        Reply
  8. 8

    Laura

    “We know that most patients with celiac disease only develop intestinal damage when consuming more than 10 milligrams of gluten daily, and it is unlikely that contaminated probiotics can lead to that amount unless patients are ingesting mega-doses,” said Benjamin Lebwohl, assistant professor of medicine and epidemiology at the Celiac Disease Center and a co-author of the study.

    “Still, these findings raise troubling questions,” Lebwohl said.

    “Why is there any gluten in these products? Why should the consumer pay any attention to gluten-free labeling on such products? And given the great consumer interest in probiotics, will regulatory bodies take action to protect the public?”

    A 500mg probiotic would have to be about 10% wheat flour to exceed the dose that is scientifically proven to cause villous atrophy.

    So yeah, there might be traces of gluten. Yes, it’s pathetic if they’ve labeled it gluten free. It’s a violation of our trust.

    The FDA should be putting these people out of business, but we’ve all seen how our government treats businesses that violate the public’s trust…

    Reply
  9. 9

    Hap

    I’m on my way to GI Dr again this morning after the 2015 from “stopwatch” so far. CT Scans, tests, blood work, samples of all sorts and 45 days of pain including 5 days of excruciating passing out pain. I managed to stay conscious long enough in traffic leaving my Dr office last Thursday to pull off on side street to a stop sign before passing out for only 2nd time in my life …talk about an exciting Roller coaster ride starting downhill on a long bridge in traffic with everything fading to black…

    I say all of that to say that a popular “gluten free labeled” Greek yogurt containg several popular probiotics may be part culprit in ongoing process. For 3 consecutive days including last morning of second excruciating pain event I had eaten this yogurt for 1st time ever in my life. I was already sick but I don’t think it helped any. I won’t give up on probiotics just yet but I don’t know exactly what to do at this point.

    Just my personal experience if anyone needs a comparison. Marching on through the continuing Celiac saga…

    Reply
    1. 9.1
      1. 9.1.1

        Hap

        Doug,

        Sorry I just saw your question from December. It was Chobani Greek Yogurt with fruit on the bottom, which was clearly marked gluten free. I’ve not eaten any since those 3 containers in 2015 and I’ve not had those excruciating passing out abdominal pains since either. I don’t want to disparage their reputation in any way; however, for me personally, this product was most likely the cause. It tasted great but I guess their source of probiotics was the culprit…who knows. I will never eat any store bought Greek yogurt ever again.

        I just visited my GI Dr last week (August 2016) as an annual followup visit to the past 12 month’s fiasco of events and we discussed probiotics, which my Dr & I think would help bloating if I could be certain gf; however, after 2 more (of 5 total) retina surgeries, an ear infection which resulted in a hole in my eardrum and the walnut sized tumor removed (from under my tongue inside my left jaw) through my neck since May 2015, I’m just not willing to take any chances. I finally feel better than I have in 6 yrs because of my very strict diet but I’ve got some work to do to get back to my prior health before all of this started in 2010. I was researching gf probiotics this morning and the Dude’s post related to the 2015 expose on alleged gf probiotics was first Google hit, which is why I saw your question.

        I have to forego probiotics at this point because I can’t be sure and will just stick to healthy lean meats, fresh fruits and vegetables. Not only did I endure the surgeries above without any antibiotics at all, but I also had a titanium post installed in my jaw to replace a tooth I lost to Celiac Disease also without any antibiotics. My Drs all laugh when they say, “if I was NORMAL they’d give me antibiotics, but …” My Dentist nicknamed my auto immune system “The Beast”. I guess I’ll stick to neither antibiotics, probiotics nor prebiotics and just build my “biotics” the natural way, whatever that is…

        Reply
  10. 10

    CD

    That might explain why I still feel fatigued and continue to have headaches. The one and only pill I take is a pro-biotic once a day. But I’m ditching the pro-biotic I use until I find more definitive answers, and it should be illegal to label something as gluten free if it is not gluten free period. Thank you Gluten Dude for bringing this to our attention. In the meantime I’ll just eat more yogurt and whole foods. :)

    Reply
  11. 11

    Kelly

    I am not a Celiac but am ultra sensitive to gluten with my inflammatory bowel. My functional doctor recommended a probiotic and I’ve been taking it but not getting any better (I’ve been in a moderate/severe flare for the last 4 months). Now I wonder if the probiotic is doing it (or at least not helping). I’m going to stop taking it and see what happens.

    It’s truly terrifying that we don’t know what’s in our food. What I have been able to find out has shocked me to the point of being crazy picky about what I eat (or let my family eat). Everything from bugs to chemicals that are labeled as “natural”. Crazy. Shame on all of these people. Thank you, Gluten Dude, for keeping us informed!

    Reply
  12. 12

    John

    This John Oliver piece (link below) from last year is worth watching if you missed it. If you did see it, it’s worth watching again, all 16 minutes of it. They mention the 1994 legislation that de-regulated the industry. By the way, that bill was passed with the help of a dramatic PR campaign featuring Mel Gibson (of all people — how times have changed in the last 20 years!) that scared people into thinking they’d lose access to their vitamins and encouraged them to support the legislation — which they did. And apparently the two politicians who paved the way for it are the leading beneficiaries in their peer group of donations from Big Pharma. Before you even get to the gluten issue, the situation is already pretty bad — so what chance do we have?

    https://www.youtube.com/watch?v=WA0wKeokWUU

    Oh, and hello there, Dr. Oz.

    Reply
    1. 12.1

      Gluten Dude

      Thanks for the info and vid John. I just added it to the blog post.

      Reply
      1. 12.1.1

        John

        Wow, flattered that you added my contribution, thanks. BTW, another NYT article, one that was cited in that video, and which you might well have referenced somewhere here before although I suppose not every reader here would be aware of it — because honestly, there’s so many of this type of report out there who can keep up with them all? — had this to say about another bit of related research:

        “…researchers tested 44 bottles of popular supplements sold by 12 companies. They found that many were not what they claimed to be, and that pills labeled as popular herbs were often diluted — or replaced entirely — by cheap fillers like soybean, wheat and rice. …

        “Of 44 herbal supplements tested, one-third showed outright substitution, meaning there was no trace of the plant advertised on the bottle — only another plant in its place.

        “Many were adulterated with ingredients not listed on the label, like rice, soybean and wheat, which are used as fillers.

        “In some cases, these fillers were the only plant detected in the bottle — a health concern for people with allergies or those seeking gluten-free products, said the study’s lead author, Steven G. Newmaster, a biology professor and botanical director of the Biodiversity Institute of Ontario at the University of Guelph.”

        This NYT article appeared in Nov 2013, 18 months ago. Have we yet learned anything about the identities of the 12 companies in this study?

        Reply
  13. 13

    Jennifer

    That might explain why I quit taking my probiotics due to them triggering a migraine-like headache and bloating. I thought I was just too sensitive; maybe it was gluten! I won’t know until that brand has been tested and published. Thanks for the clocking good rant! It’s not a funny subject, but your choice of expletives made me laugh out loud (my husband even came in to see what I was reading). I look forward to the update.

    Reply
  14. 14

    Jodi

    In addition to sauerkraut and other fermented veggies, Tula’s coconut kefir is a great gluten and dairy free probiotic option for children and adults. http://www.cocokefir.com

    Reply
  15. 15

    Sarah

    This is not the first time I’ve heard about this study. I felt like my probiotic was safe so didn’t worry initially, but now I’m starting to wonder. I’ve been having very mild and low-grade symptoms lately that I can’t really explain or pinpoint to a particular cause, so I may try stopping my probiotic to see if they resolve. If so, I should be able to give them away. I probably won’t buy more until some proven-trustworthy products become available.

    Reply
  16. 16

    Sal

    Thank you SO much GD!! This may help to explain my lousy results on my recent celiac blood panel. I am super careful to avoid gluten, so something else is up. I also just found out, that 2 prescription creams I use are not certified as GF. The companies reps were also clueless! Without this site I think I’d just give up; I’m too old for this :-)

    Reply
  17. 17

    el Hefe

    It pains me to say it, but the key word in Green’s study is not ‘probiotic,’ but ‘supplements.’ If probiotics calling themselves GF are clocking us, why aren’t all the rest doing the same clocking thing? Idiot FDA let companies label foods GF without having to actually do any testing, saying if there were consumer complaints they’d look into it. And then they did their victorious cossack dance.

    Years ago I took a calcium supplement and got a reaction, so I called the company(begins with S, ends with R) about it. They asked me to send them the remaining pills and bottle so they could check it out. According to them the pills were GF, but when I inquired(OK, I interrogated) I learned that they had only checked their documentation from their supplier in Guangzhou, China. So you can guess, these days I make my own calcium powder from organic egg shells. Otherwise, no supplements except Titos.

    Reply
  18. 18

    Kirsten

    Come on. I’m tired of this (literally…exhausted).

    I take a probiotic every day. They actually help with my digestion and, sometimes when I’ve been “glutened,” they can help move the “foreign contaminant” (stealing the term from one of my favorite animated movies) more quickly from my system. But, I quickly figured out that I can’t take too much at one time because my body reacts as though it has been “glutened.” So, is this the reason? Ugh!

    As it is, I feel as though there’s nothing out there to counter the effects when I am “glutened.” I’m allergic to gelatin, so I can’t take those pills to help with bloating. I don’t necessarily trust the chewables. So, I suffer through it or suffer through the other side effects when I take the chance.

    We already have to look at EVERYTHING we ingest. What’s the alternative if the manufacturers aren’t being held accountable for their labeling? We don’t really have the option to STOP eating or taking supplements, right? The only real indicator that I had celiac disease was the fact that I’m anemic. Wondering if my other supplements are contaminating me as well…

    What the clock is right!

    Reply
  19. 19

    Karen

    Wow! NO wonder I am not getting any better, despite being on probiotics nearly every clocking day of my life! I am so sick and tired of the profit over people issue every clocking time. It is incredible that there is so much false advertising out there and no one is held accountable. The very supplement I am taking to help counteract all of my gut issues is keeping me sick! Why the clock is there no legal ramifications for these clocking businesses who are doing this to us?

    Reply
    1. 19.1

      John

      “Why the clock is there no legal ramifications for these clocking businesses who are doing this to us?”

      Because Mel Gibson. Watch the John Oliver video in the post and you’ll understand. For the readership of this blog, the main issue is the lack of proper gluten disclosure, but the scope of the problem is really MUCH larger than this.

      Apparently, it takes the death of a professional athlete for the FDA to act on this stuff. The video mentions this former (deceased) MLB pitcher.

      http://en.wikipedia.org/wiki/Steve_Bechler

      “At the time of Bechler’s death [on Feb 17, 2003] ephedra was banned by the International Olympic Committee, the National Collegiate Athletic Association, and the National Football League, but not by Major League Baseball. Bud Selig, the Commissioner of Baseball, called for a ban of ephedrine in the wake of Bechler’s death. Numerous teams banned the use of ephedra in team clubhouses. Following Bechler’s death, the Food and Drug Administration, which had previously chosen not to ban ephedra, re-opened its efforts to regulate ephedra use. The United States Congress dropped its objections to banning ephedra, and Bechler’s parents testified in front of Congress. The FDA announced its decision to ban ephedra on December 30[, 2003].

      “Bechler was cremated following his death. On the six month anniversary of his death, [Bechler’s wife] Kiley scattered his ashes on the pitcher’s mound of Oriole Park at Camden Yards. She filed a wrongful death claim against Nutraquest, the manufacturers of the supplement, seeking $600 million in damages. The lawsuit against Nutraquest was suspended in October 2003 when the company filed for bankruptcy under Chapter 11 of the United States Code.”

      Reply
  20. 20

    Jeanne

    Thanks as always, GD. I’ve dropped my probiotics as of yesterday when I read this in the NYTimes. Curious now to see if some remaining issues since my diagnosis will now finally go away. I’ll just continue to enjoy yogurt. Criminal that these companies are allowed to harm people with a disease.

    Reply
  21. 21

    Diane

    I was just taking a bite of my supper (leftovers from an amazing local Mexican food place where I have NEVER been glutened) and as I took a bite I came to the “mother-clockers” line in your post. Almost lost that mouthful to laughter. But seriously, this pisses me off! ‘Everybody’ knows probiotics help your gut and then they are serving them up with gluten? This will probably answer a lot of questions for some people who are taking them and having ‘celiac’ issues. I have been too unorganized to take mine for the past year, but I plan to check and see what the manufacturer says about the validity of their gluten free claim before I take them again…

    Reply
  22. 22

    Robin

    I use probiotics, as well, and feel much better on them. The brand I use are Arbonne’s Digestion Plus. They are Certified Gluten Free, if it is helpful to anyone. You may contact me or check out my website for more information, including the ingredients listing. It doesn’t appear to be listed as Certified Gluten Free on the website, however, the package is clearly labeled with the GF certified.

    Reply
    1. 22.1

      John

      Speaking of GFCO/GIG certified products, the GFCO has a large .pdf file on their website that lists (all of?) their certified products.

      Just go to this link:

      http://www.gfco.org/certified-directory/certified-companies/

      and you’ll see a link labelled “2015 GFCO Buyer & Distributor Guide”. If there’s a supplement that’s Certified GF it should appear in this compendium; it’s a pretty big .pdf file at 150pp — actually a bit unwieldy to navigate on your screen. Right underneath the link they promise “Searchable Database Coming Soon!” which should make things easier once this gets online.

      Robin, the listings for Arbonne start on page 31 of the catalogue and continue beyond; the Digestion Plus product appears on page 32. There are probably products from other companies listed in this document as well.

      Reply
  23. 23

    Marie

    WHAT THE CLOCK! Seriously though.
    I do not have CD but my son and husband do and both take probiotics in the hope it would help restore their health in the long run. Seriously?! Seriously????!!!!!!!!!
    Do they know how many doctors it took to diagnose my son, how many misdiagnoses, and how many years it took to finally figure it out ??!!!!!!!!
    Now this people?!!!!! Do they realize that they are ruining people’s live?!!!!
    I am not happy and this is an euphemism because my true feelings would include a lot of CLOCKS!

    Reply
  24. 24

    Cheryl

    What the clock, Dude? Just wait till they get wind of the fact that clock is now a “bad” word. What have you done to us?
    LOLOLOLOLOLOLOLOLOLOLOL

    What did we really expect from a world that actually really believes that we should be satisfied with “low” gluten being called gluten free?

    I think it is time we have a category called “Celiac Safe” OR “Celiac Safe – Gluten Free”. Like the Kosher hot dog people someone has got to step up and answer to a higher authority.

    Reply
  25. 25

    Cathy

    in 2007 I was diagnosed with celiac disease. Everybody keeps pushing probiotics! So I went to a trusted pharmacy got a so called really good brand an have been taking this gluetin free probiotic for about a month. About a week ago I noticed fatigue, aching joints and beginning the weight loss. It is three in the morning and I am aching like I
    Was the very day I was diagnosed with this. I am staying tired and feel like I never get enough rest. I follow the diet and very seldom end get glutined. So it is so amazing to me to run across this article tonight. No more probiotics for me! It will take another two weeks before I feel like a human being again! Just a tip! I stay clear of buffets and pot luck never know where gluetin is lurking. Thankful I have been able to read this article!!!!!

    Reply
  26. 26

    GF and more

    I don’t use bottled probiotics or any supplements for that matter – just too much of an unregulated industry. Instead, I’ve been making a point to eat lots of naturally fermented foods (sauerkraut, kimchi, anything really can be tasty fermented) and incorporating them into the different fresh meals I cook. It has been helping a lot I think, and I can control it because I’m making it from just plain fresh veg and water.

    The frustration is huge for me with how these things go unregulated or have so many loopholes and room for lobbyists/business interests to get in the way and further their own goals at the expense of people whose health depends on something truly being GF. I don’t know what I can do about it, so I’m just in the “protect myself” mode and abstain from using it. But I’d jump right on board if I knew a direction for how to make a difference in this battle.

    Also completely agree with those who already posted that the 20ppm doesn’t make any sense as the rule for labelling something “GF” to me – free should mean free. Especially because if a food has say 18ppm and is labeled as “GF” someone who is eating multiple servings could easily be getting a concentration of 40-60ppm, definitely not GF even by the lax labeling regs. Things can be tested to 5ppm, so that should be at least required, if not the proof that there is really zero cross contamination, contents, etc.

    Reply
    1. 26.1

      John

      Sorry but with all due respect I have to call out your math in your last paragraph there. Combining several sub-20ppm foods isn’t going to create something that’s 40ppm or higher. That’s like saying you could mix two different bottles of 5%alc beer together and come up with something that’s as strong as wine. I think you’re conflating *concentration* of gluten with *absolute amounts*.

      Having said that, I do agree that particularly sensitive individuals should restrict their intake volume of foods that are merely under 20ppm as the absolute dose could be more than what is tolerable. Certified GF products (by GIG) are certified to 10ppm, and do offer a better threshold than the legal commercial standard.

      The main source of the 20ppm FDA threshold for gluten-free claims, which also argues against a 5ppm threshold as being counterproductive, can be read here:

      http://www.glutenfreediet.ca/img/Fasano_letter.pdf

      This document mentions there is clinical evidence that a 100ppm threshold would not be safe enough for most celiacs, but that there are no studies demonstrating a significant incremental toxicity reduction going from a 20 to 5ppm threshold: “…as far as I know, there are no evidence-based published studies that demonstrate toxicity with exposure to 20 ppm and safety with 5 ppm exposure.” Which is to say, most people (but certainly not everyone) who could handle 5ppm could also handle 20ppm.

      It also adds that ELISA tests simply aren’t accurate enough to use 5ppm as the GF threshold. Two different trials of ELISA testing on the same sample of safe 5ppm food could give 3 or 7ppm. With this much dispersion there’s not much to gain with a 5ppm threshold.

      False fails of safe food would happen up to 50% of the time and companies would have to increase product pricing to cover these losses; in fact, this might already be a factor in the higher cost of GF foods anyway, even at 20ppm. They go on to say that “Under these restrictive limits, manufacturers would either discontinue gluten-free products or be forced to create much more expensive and much less palatable products, resulting in a drastic loss of selection and quality.”

      Technology constantly advances, so we might get to a point where these problems with a 5ppm threshold are overcome but it seems we’re not there yet. The document concludes that “We believe that establishing a restrictively low threshold of parts per million of gluten will complicate the lives of people with celiac disease and do nothing to improve their levels of safety and comfort. We urge the FDA to establish 20 ppm as the level that defines “gluten-free” in the U.S. marketplace.”

      I sympathise with those for whom 20ppm doesn’t suffice. But the system simply can’t support a 5ppm threshold right now without unintended/undesirable consequences. I know that sounds totally unfair, but we also still (for example) have a lot of work to do on curing some cancers that are still killing a lot of people.

      Reply
  27. 27

    Deb

    20 ppm is equal to 20 mg per 35.27 ounces of food. Some studies have shown that most (“MOST”) Celiacs can safely eat 10 mg of gluten daily. Safely meaning no damage to villi, not symptomless. So, while some might not be able to eat 20 ppm without symptoms, most should be able to eat even multiple servings of 20 ppm gluten containing foods in one day without damage to their villi, unless they are eating more than about 17 ounces of 20 ppm gluten containing foods. One serving of GF bread is equal to about 2.257 ounces. So … you would have to eat a whole lot of GF foods to even get close to that 10 mg mark. And the same would hold true for the probiotics. I also want to note that many people get gas, bloating, belching, etc. from not having enough digestive enzymes. Proteins can be especially hard to digest for Celiacs (obviously) and so taking good quality GF digestive enzymes prior to every meal or, as some have mentioned here, utilizing fermented foods with your meals helps, as well, because they are already “pre-digested”, and they help begin the process for other foods you are eating. Also want to point out that many probiotics include in their ingredients “prebiotics” … starches that feed the good bugs in the probiotics. Often, those starches can cause the good guys to become prolific quite quickly, and if you are not used to having a lot of these good guys in your gut, you could experience Celiac-like symptoms that didn’t come from any kind of gluten. Inulin is one ingredient that can knock me for a loop if it is in my probiotics. I am super sensitive to gluten. I can’t eat oats. I take digestive enzymes, eat ferments, and take probiotics. I have no tummy symptoms anymore and antibodies are still in the normal ranges. Our disease is a total pain in the butt. It’s clocked up (love that – clock you gluten!! lol ) … very clocked up that we have to remain hyper vigilant about everything we eat because, in general, people don’t take this disease seriously. We really DO need to start a very serious campaign about the difference between the disease and the fad. And manufacturers should be held responsible for false claims on their foods. The only way to have that happen is to demand it … loudly.

    Reply
  28. 28

    Jenn Sutherland

    Incredibly frustrating. I’ve found gluten contamination to be the case over and over again in both probiotics and general supplements, even when labeled gluten free, even when I call the companies before purchasing, and they answer my barrage of questions to my satisfaction. And then 2-3 months later after changing one thing – taking a new supplement – I feel the fog, the low grade migraines, depression, bloat and mood madness seeping back in…and I think about anything that had changed – and it always comes back to that one “gluten free” supplement I started taking months ago. Redial the manufacturer and get a chemist on the phone, and it might come down to something like gluten dust in the facility, shared production lines, or my personal favorite – oats, and a lack of awareness for certified gluten free oats.

    At this point, I’ve stopped all probiotics and supplements in pill form. I’ll do liquids when I need to – and haven’t had an issue with liquids. Can’t get everything I’d like in liquid, but there’s more available than there used to be, and I chomp on a few Bubbies pickles or kraut for a little gut health boost.

    Reply
  29. 29

    Cheryl

    Guess that I have been in a clocky mood since the political lifers decided they could legislate lies by claiming that 20ppm of gluten is really gluten “free”.

    I am weary of this nonsense where a small segment of society suffers with a devastating illness is bandied about for the profit margins a major corporations. Science has failed us. The very studies they use violate the Hippocratic oath (FIRST – DO NO HARM!). Feeding Celiac’s and NCGS gluten causes HARM. They know this from the start. Yet, the write it off as no big deal to destroy the ability of human beings to digest food and profit from the food’s nutritional values. It is reprehensible.

    There is a report that the FDA has that shows conflicting information about damage to Celiac’s who consume gluten in even trace amount. It seems that all Celiac’s will eventually show damage regardless of the amount consumed. It is the constant assault that really matters. That makes perfect sense since it is the body itself attacking itself when gluten is consumed. They just caved to manufacturers who want to make $$$ of us.

    I want to know why people who don’t suffer with the actual disease, who did not starve and have bone damage, and other issues get a say in how much is “dangerous” to us. What do they care about other than making money?

    And where did our government get the right to legislate LIES? Gluten free should be totally free of gluten. Stating that gluten free means BELOW 20ppm is NOT gluten free at all! What use are all these new products when they have sufficient gluten to make Celiac’s sick.

    This is where this nonsense about “sensitivity” came about as well. There simply is no such thing. Celiac is Celiac. Immediate symptoms (or symptom free) is no indicator of safety. The really critical nutrients necessary for vital body function are stored in the body. It can take weeks to months of not absorbing those before one realizes that there is a problem.

    So many people “go on a GF diet” by replacing gluten items with gluten free (to 20ppm). They initially feel much better. Then a couple years down the line, they are still sick. When they cut out all this gluten, they experience real health.

    Why would anyone trust studies which include such folks? Just because they feel “better” does NOT mean they are actually well! Yet, here the rest of us are suffering because these are the study subjects. I would not eat gluten on purpose for any reason. Hold a gun to my head – I tell you to shoot me rather than consume it. Such “research” is using humans as Guinea pigs without caring about the real damage being done to them. We don’t even infect people with the flu because it is inhumane. But we can have Celiac’s and NCGS consume gluten (a KNOWN damage causing agent resulting in them suffering malnutrition) without any bother to our conscience. When did the lives of Celiac’s become less valuable than the rest of society?

    Personally, I don’t find the current proliferation of “gluten free” items helpful in any way. When “Wheat-A-Bix” is labeled “gluten free” there is obviously a serious issue. What other nonsense are we simply supposed to accept?

    Reply
  30. 30

    Greg

    I tried several different probiotics, but they gave me insomnia somehow. I would wake up in the middle of the night and not go back to sleep. I just met another person with celiac for the first time! She was diagnosed way back in 2001 and she swears by psyllium powder. Says it cleans you out and helps with cross contamination and she feels alot better taking it. I’m skeptical about supplements cuz I’ve tried just about evrything with no benefit but I’m just relaying what she told me.

    Reply
    1. 30.1

      Dick L.

      Psyllium husk powder, as I understand it, is the active ingredient in Metamucil. But I use it in place of xanthan gum in baked goods. I think it’s better in things like pizza crust and pita bread. Schar uses it in some (or maybe all) of their baked goods, so it’s got fairly good credentials. I’ve never noticed any laxative effect (“it cleans you out”), though. But then I’ve never taken it as a supplement, only used it in recipes.

      I’ve only met a few celiacs in person, but there are lots of us here and other places online. It seems like a substantial percentage of celiacs start blogs. (I don’t know that that’s true, but it seems that way.) If it’s true that 1 in 133 people are celiacs (an oft-quoted ratio), we’re fairly rare, so it’s not surprising that personal encounters are unusual.

      Reply
  31. 31

    Tina

    Hi Gluten Dude. I’ve been dealing with celiac-related issues for the last five years. I’ve tried several brands of probiotics. For the last year, I have been using PharmAssure brand Acidophilus probiotics. I have not had any problems with these. (I am VERY sensitive to gluten). These probiotics are inexpensive and say “No Gluten” on the bottle. I buy them at RiteAid. I’ve noticed a significant improvement in my digestive issues after taking these. Surprisingly, I’ve noticed more improvement when taking these probiotics compared to the very expensive brands.

    Reply
    1. 31.1

      Gluten Dude

      Good to know…thanks.

      Reply
  32. 32

    Jersey Girl

    GD-

    WTH?!?!? Are my other supplements safe? Thank whatever higher power u want that we found out.

    Grrrrrrrrr.

    Jersey Girl

    Reply
    1. 32.1

      Gluten Dude

      I’m sure plenty are safe, but with such an unregulated industry, who the hell knows?!

      Reply
  33. 33

    Meagan

    Has anyone had any problems with Prescript Assist probiotics? I eat probiotic foods and used to supplement on top of that. However last fall, I decided to switch to prescript assist at the exact same meal that I was trying some new “gluten free” sausages (cooked in my gluten free kitchen). I got extremely sick and assumed it was the food but was too scared to try either the food or probiotics again. Now I’m wondering if it was the probiotic all along. Regardless, there’s no way will I try taking them again. I feel nauseous just thinking about how sick I was! I guess I’m just curious.

    Reply
  34. 34

    krista

    Ugh. I take probiotics from plexus and according to the sales person I go through, they are gluten free but still question it!

    Reply
  35. 35

    peacefuldb

    This is so amazing to me… things that are to help us are hurting us. I took some from CVS one year and it was ugly. I was afraid to start any other ones but my doctor insisted so I did research. I take Endomune and so far have had
    success. Good luck out there!

    Reply
  36. 36

    Mari

    I was recovering from taking a liquid allergy supplement (vitamins & herbs), which gave me a horrible “gluten attack.” Obviously labled gluten free. Ha. Then I decided to be very kind to my damaged insides by investing in a good probiotic which was labled gluten free. I was blindsided by yet another “gluten attack”. Tried another gluten free probiotic–same thing. Two weeks later I still feel lousy. I’m going back to the probiotic I purchased from GiProhealth. Never had any problems with them–and they’re also SCD compliant. Maybe that’s why. But the truth is easy to see: to avoid issues, don’t eat gluten free–as the dude first suggested. Really, I’ve found it’s the only way. I feel so much better eating SCD or paleo. Getting back on my SCD wagon pronto. And as an additional note–european countries have much more stringent guidelines about gluten free products. They are much more enlightend. In the U.S. it’s just another money making industry.

    Reply
  37. 37

    Nicki

    What the clock? This is downright disturbing. You did a post a while back that said you use Nature’s Bounty. As a result I bought that brand and have been using it, as I am more than celiac, I have soy allergies, etc. So…did you happen to find out from NB if they are tested/safe? I just figured I’d ask you before I go thru all the crazy work of trying to get an answer. You have more klout than I do. lol :)

    Reply
  38. 38

    L???

    Contacted the company of the probiotic I took during a bit of a scare. Turns out Insync Probiotics are gluten free, so they say.

    Reply
  39. 39

    Rob

    Our daughter is an amazingly picky eater, and a vegetarian to boot (you know, the kind that doesn’t like vegetables). She is six months diagnosed with CD. The thing that is both good and bad is that she does not have very obvious symptoms. She never complained much and until she had blood work showing iron deficiency, we had no inkling. Because she doesn’t show symptoms much, it’s very hard for us to tell when she’s gotten any gluten, so I’m very wary of starting her on probiotics (something I was very eager to do). This thread has been silent for a while, so just commenting to get any updates, suggestions, brand loyalty (especially from folks who are very sensitive, since she isn’t). Thanks a lot for what you do.

    Reply
  40. 40

    Marie

    Hello Gluten Dude
    Does anyone know if Perfect Biotics gluten-free? Also, only one woman on here named a product that says her probiotics are certified gluten-free, called Arbonnes Dgestion Plus… So if it says “Certified GF” is that a definite guarantee?

    Celiac Disease has caused me to become very ill and I just read this blog yesterday. I’ve been sick for 13 years and diagnosed 5 years ago. Thus has led me to get other autoimmune diseases as well. My medical expenses are through the roof and I haven’t felt well in years.

    Any help would be very much appreciated. Thank you.

    Reply
    1. 40.1

      Gluten Dude

      I would say nothing is guaranteed, but odds are you are safe if it says certified.

      Reply
  41. 41

    Christine

    OMG…AFTER I TOOK the chewable Culturelle for the first time, I see on the packaging INSIDE on the bottle that the Xylitol may be made from CORN or WHEAT!!!!!!

    WHAT IS WRONG WITH THESE COMPANIES?! I AM FURIOUS! First, I am returning it to get my money back. Second, I will be writing to Culturelle. Third, I am writing to my Congresswoman.

    This labeling from the FDA is really outrageous that we can get sick from something that is supposed to help us.

    I am so tired of this! I should have Google searched this article first. Thanks, GD.

    Reply

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