Gluten Dude

Today is the day folks. The new FDA gluten-free labeling laws go into effect. A day the celiac community has been waiting forever for.

And you know what this means don’t you?

Yeah…neither do I. Like anything else the government gets involved in, it’s kind of a confusing mess.

So the Gluten Dude is here to try to break it all down for you.

A few caveats before we get started:

1) Though I may kvetch a bit about some of the rulings, I am beyond appreciative of all of the work that went into getting this passed. And it is indeed a step in the right direction.

2) Please…no comments that gluten-free must mean 0 ppm. There is no way to test for it and though it sounds nice, it’s just not reasonable at this point in time.

And away we go…

What the Gluten-Free Labeling Law Covers

The rule covers all foods under the FDA.

Whether a food is manufactured to be free of gluten or by nature is free of gluten, it may bear a gluten-free labeling claim if it meets all FDA requirements for a gluten-free food. In order to use the term “gluten-free” on a food label, the food must meet the following requirements (from MayoClinic.org):

  • The food is inherently gluten free (like fresh fruit or raw vegetables).
  • It does not contain an ingredient that is a gluten-containing grain (wheat, rye or barley).
  • It does not contain an ingredient derived from a gluten-containing grain that that has not been processed to remove gluten.
  • It does not contain an ingredient derived from a gluten-containing grain that has been processed to remove gluten, but that ingredient results in the presence of 20 parts per million (ppm) or more gluten in the food.
  • It does not contain any unavoidable presence of gluten in the food in amounts of 20 ppm or greater.

Similar labels, such as “without gluten”, “free of gluten” or “no gluten” are also allowed.

I tried to get “not a damn bit of gluten” and “look ma…no gluten!” passed, but the FDA wouldn’t take my calls.

Keep in mind the label is not mandatory so just because it may not say “gluten-free” doesn’t mean it’s not gluten-free.

And if the 20 ppm still scares you a bit, look for the following specific certifications on the products you buy (from SimplyGlutenFree.com):

  • CSA Recognition Seal through the Celiac Sprue Association (CSA) – food must test under 5 ppm
  • Gluten-Free Certification Organization (GFCO) through the Gluten Intolerance Group – food must test under 10 ppm
  • Gluten-Free Certification Program (GFCP) through the Canadian Celiac Organization and the National Foundation for Celiac Awareness – food must test under 10 ppm
  • QAI Gluten Free Certification through Quality Assurance International (QAI) – food must test under 10 ppm

What the Gluten-Free Labeling Law Doesn’t Cover

- Alcohol. Yeah…total bummer on this one. Still so much fear and confusion in this realm. The Omissions and the Dauras of the world can continue to call their beer gluten-removed and market it as gluten-free.

Oh…and for the upteenth time, pure alcohol is gluten-free. That means you can drink your vodka, gin, tequila, rum, etc. to your heart’s delight. Actually, mix those four together, add some triple sec, a dash of coke and some lemon and you’ve got yourself a Long Island Ice Tea. And if that’s gluten-free then really…life’s not so bad ;)

- Restaurants. Another bummer but there is hope. Here is what the FDA says: “We encourage the restaurant industry to move quickly to ensure that its use of “gluten-free” labeling is consistent with the federal definition and look forward to working with the industry to support their education and outreach to restaurants. In addition, state and local governments play an important role in oversight of restaurants. We expect to work with our state and local government partners with respect to gluten-free labeling in restaurants. We will consider enforcement action as needed, alone or with other agencies, to protect consumers.”

Let’s face it…when we dine out…we are at risk. We are in the hands of the chefs and the servers. That’s just reality and I don’t see it changing in the near future.

- Meat, poultry, fish and eggs. These are regulated by the USDA. Actually, if you mix those four items together, add some triple sec…oh never mind.

- Prescription medications and over-the-counter drugs. This is desperately needed. Please stay tuned as a few powerful voices in our community, including yours truly, are banding together shortly to try to make this happen.

Will the New Rules Really Keep Me Safer?

Short answer…I don’t know.

Let’s take Bart’s Bakery as an example. He sells gluten-free cookies. Except he uses shared equipment and multiple tests have proven that his cookies are over the 20 ppm limit. Yet he still sells them on his website and the stores are still stocking them.

Will boneheads like him really change? I mean he already knows his products are making people sick yet he continues to sell them.

Why? $$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$

And I’m sure there are other companies that are selling “gluten-free” food knowing damn well that it may not really be gluten-free. Is the small risk of them getting caught worth them changing their ways? I’d like to think so, but companies with loose morals may not be enticed enough to change.

And one other note…testing is not mandatory. Manufacturers are not required to test for the presence of gluten in ingredients or in the finished “gluten-free” labeled food product. Not only that, but there is no requirement for the manufacturers to keep records if they did indeed test for gluten.

So in a nutshell, while the rules make the celiac minefield a little less treacherous, it’s still buyer beware. If there are companies you trust, stick with them.

What if I Get Sick from a “Gluten-Free” Product?

If you are fairly certain you got glutened from a “gluten-free” product, contact the FDA Consumer Complaint Coordinator for the state in which you reside. Here’s the link with all of the phone numbers.

Any Last Bit of Advice?

1) Try to stay positive. While the ruling isn’t perfect, it is progress.
2) You still MUST be your own best advocate.
3) If you do react to 20 ppm, look for the labels mentioned above.
4) Don’t live in fear. Life is to be enjoyed.

Actually, if you mix these four things together, add some triple sec… ;)

117 thoughts on “The New FDA Gluten-Free Labeling Rules: The Good, the Bad and the Ugly

  1. I hope that the more stringent certification programs won’t disappear as I only buy foods that I can be confident are <10ppm. But this is a start, and thank you for all the work you do!

    • Thanks so much for this info Gluten Dude! A step in the right direction even though it’s not perfect. I’ll personally continue to look for things made in dedicated facilities because it’s just the safest bet for me. Too many Bart’s out there unfortunately. But it seems like there is at least better education and more clear standards for those who care now and hopefully things will continue to get even better as time goes by. You are making a difference and I thank you for your work!

  2. I’ll take it! A Long Island Iced Tea and the labeling!
    My question is about Oats. I didn’t notice them mentioned, just wheat, barley, and rye.
    How do Oats fit into this? I am always weary of a gluten free product that contains oats, (especially at a bakery) do I need to be?

    • I am also leery of oats. A bakery is scary enough, unless they take the time to label the oats as certified gf, I stay away.

      • Oats AND Soy! Aren’t these leading in contamination from being grown in same soil and harvested on same equipment??
        Diagnosed Celiac of 8 years now. It would really be nice if it says GF that it really was.
        How about Whiskey? I’d love to have a Crown and Coke again!!!

  3. Bezz, I think oats have to be listed in ingredients, right? I avoid anything with oats because I do react to even small amounts. But technically they don’t have gluten, just a protein with a similar structure. So things can be gluten-free and contain oats.

    • I am thinking that oats may not be required to be listed. Some time ago it was determined that oats are okay for Celiacs, and since oats don’t actually contain gluten, they may not have to be listed. I react to them, gf or not, but I guess many Celiacs don’t.

      • Oats don’t have to be listed as an allergen (just like rye and barley do not), but do have to be listed as an ingredient. So if you react to oats, you still have to go through the whole ingredients list to find them. If a label says ‘gluten free’ and they are actually complying with the law, then the gluten in the oats must be <20 ppm. At least that is my understanding.

      • Yeah, sorry Joanne, as Amy says, oats will be listed in the ingredients and so we can check for them that way. As far as bakeries go … having worked in a regular (ie not a dedicated gf bakery) for 8 years (terrible idea) I wouldn’t buy anything from such a facility unless they had extremely stringent systems in place for making sure that their gf food wasn’t cross-contaminated. Sure we had things my boss labeled “gluten free” but I hope she’s gotten rid of all those labels now because everything was coated in flour. (I would tell her and tell customers that the foods weren’t gluten free, but no one wanted to listen.)

  4. I wanted to clarify that for GFCO certification every ingredient must be under 10 ppm and be considered safe on their own and the resulting product must be under 10 ppm, and unlike another certification group, you can’t pay them to change these requirements.

    As for liquor, cheap liquor is often dyed with barley to look like it has been aged longer and for a consistent color between batches. Many distillers also back-sweeten with barley wash. Like everything else you need to know what you are buying.

    • Which “other” certification companies are you referring to? I have a feeling you’re referring to a particular group who thinks that Omission beer is the cat’s meow. :)
      Seriously though, I think that highlights the issue that (in my opinion) is a problem. Why are there so many groups that are trying to have their own certification program? ($$$$)
      I think if GIG/GFCO has a great program, we should stick with that and CSA and NFCA (which I think are both helpful groups in their own right) should back off and find something else to specialize in. With so many different cert. groups that have different PPM levels, it gets too confusing.

    • I have issues with the GFCO. It used to be stricter about gluten removed ingredients and shared equipment/facilities. I feel like the GFCO sold out big time. Those Evolution bars at Starbucks made me so sick.

      • There are 4 Evolution bars and 3 of them are certified gf but not the 4th. The one that isn’t is the one with cocoa. I have eaten 2 of the ones that are certified and was totally fine afterwards. I am a diagnosed Celiac who is very sensitive to low levels of gluten and I had no problem whatsoever with a couple of their bars. I always add that in because some people need to hear that.

        I will say that the bars have lots of nuts in them and many people, if not gluten free for very long, may have trouble digesting them. I have been successfully gf for 9 years so am healed. I can eat foods I haven’t been able to eat in years and recently cut out my digestive enzymes because I don’t need them anymore. I would hate to see these bars trashed because they are very good and very safe. If I don’t get sick, I highly doubt the culprit is gluten for anyone else.
        Same thing with the Kind bars. If one person gets sick, then they claim they were glutened. Kind bars are safe also.

  5. The other problem with restaurants (which you probably already know but it is worth repeating) is when they hand you a “gluten free” menu and an item such as chips and salsa are listed. Sure tortilla chips are gluten free but when you put them in a common fryer where you just fried breaded chicken tenders, it makes my tortilla chips deadly. This happened to me at Applebee’s a couple of years ago. Got to the bottom of the chips and found a piece of breading. Came home and was sicker than a dog for 3 days. Oh and when I called to let them know that putting gf chips into contaminated oil make them NOT gf, the manager apologized…and sent me coupons for Applebee’s. NO THANKS!

  6. This is definitely a step in the right direction, and I really do want to be positive about it. But if testing isn’t mandatory then we basically have to get sick, then report it to the FDA and THEN they will test the food and make them either comply with the standards or not use the term “gluten free” on their packaging and in advertising? I’m not going to lose any sleep over it because I feel like I know which brands I can trust and which ones I can’t. That’s the one part of this law I’m a bit disappointed in. But it is progress. Can’t deny that. :)

  7. Good job Dude!
    I am grateful for the labeling laws because they’ve helped me decipher & understand what I can and can’t eat/drink and why….
    After that you lost me at Long Island Ice Tea.…life’s not so bad!!!

  8. how many times does someone with celiac have to tell you norms that anything made from gluten, will contain gluten…. I cant not drink winter wheat vodka without bleeding, among other symptoms……. don’t care how distilled it is, go drink a bottle of poison and I’m telling you the process took the poison out….

    • What’s a “norm”? The only Norm I know is from Cheers.

      Coach: How’s a beer sound, Norm?
      Norm: I dunno. I usually finish them before they get a word in.

      Coach: What would you say to a nice beer, Normie?
      Norm: Going down?

      Sam: Whatcha up to Norm?
      Norm: My ideal weight if I were eleven feet tall.

      • Hahaha! I am glad you asked, Gluten Dude! I wondered the same. The only Norm I thought of was the calf in City Slickers! “Noooormaaan!!”

  9. GD-

    Fanbleepingtastic post. Love it. Congrats to everyone who has a voice in this community, we have made a difference, who knows to what end we can accomplish next.

    XO-
    Jersey Girl
    ——————————————————————————
    [the rocket Woody and Buzz are strapped to launches into the air, taking the two into the sky]
    Woody: [screams] “This is the part where we blow up!”
    Buzz: “Not today!”

    [Buzz activates his wings, cutting the tape that binds him to the rocket; Woody screams and covers his eyes in fear, but just as they are about to hit the ground, Buzz soars up carrying Woody]Woody: “Hey, Buzz! You’re flying!”
    Buzz: “This isn’t flying. This is falling with style!”
    Woody: (laughs) “To infinity and beyond!”

    Toy Story

  10. I’m with you John, but that’s why you simply put Tito’s in your Long Island Ice Tea and not worry about the people who triple distilled winter wheat vodka doesn’t bother. Warning: if Norms drink enough LIIT’s then there’s not much of anything else in life that will bother you either – you really can’t taste the alcohol so imbibe responsibly.

  11. “Oh…and for the upteenth time, pure alcohol is gluten-free. That means you can drink your vodka, gin, tequila, rum, etc. to your heart’s delight. Actually, mix those four together, add some triple sec, a dash of coke and some lemon and you’ve got yourself a Long Island Ice Tea. And if that’s gluten-free then really…life’s not so bad ;)

    GD, hands down best part of being gluten free! And this is my favorite go-to drink for a good time. So what’s there to worry about?

  12. Laying in a supply of triple sec. I didnt even know I needed any. So the next time someone asks me for advice on anything GF, Im going to start with,” first you need some triple sec, no really.”
    One step forward, a shuffle back. : )

  13. According to some sources, the distillation process doesn’t always take out gluten to that 20 ppm. It seems to depend on the maker of the alcohol as to what they use for flavors or color. Kind of like coffee, maybe. It can be roasted with barley for flavor, so we have to be careful there. I dunno.

    As far as the labeling law, I see it as a positive in that it shows there is a need for some people to know if gluten is in the product and that it isn’t all about fad diets. But that 20 ppm is still too high for some, myself included, so I really appreciate you listing the certification labels which contain lower amounts. I still have to read the labels, though, because I react to oats, but labeling in the U.S. is a step in the right direction. Can’t believe it took so long to do it! Been fighting for labeling since 2002.

    • I am with you. I have had more than 1 doctor tell me to stay away form wheat based alcohols and for me….i’m not going to take a chance when there are products like Titos, Ciroc, and Chopin on the market. it might mean at some m restaurants i have to give up my favorite martini but hey i already had to give up my favorite food there so who cares. I’ve choosen to become a wine snob instead : )

  14. Regarding distilled spirits–safe for celiacs to drink;

    “Regardless of what the TTB and the FDA say, according to the experts of distilling, unless a spirit comes into contact with gluten AFTER the distillation process, there is none present in the distillate. Advertising and marketing may have successfully convinced many of us otherwise, but facts are facts. If you’re getting sick from spirits, it’s not because of the gluten!”

    http://www.alcoholprofessor.com/blog/2013/04/02/what-really-makes-a-spirit-gluten-free/

    “Marko Karakasevic of Charbay, a 13th generation distiller who knows the science of spirits as well as anyone. He agrees with celiac.com and stated, without hesitation, “Anything distilled cannot possibly contain gluten. Distillation is the process of separating alcohol from everything else in the mash, and unless gluten can travel with vapor, there’s no physical way that it could be found in the distillate.” So what happens after a product has been distilled is much more likely to be responsible for adverse physical responses in consumers. It is also important to mention that alcohol is a poison and human being’s reactions to it are as varied as we are diverse. While some people have extremely high tolerances to alcohol, others are drunk after one drink. Some people turn red when they drink and others fall asleep. With such an immense number of physical, chemical and psychological variables, it seems absolutely ridiculous to me to blame gluten for an undesirable reaction to alcohol.”

    –The National Institutes of Health’s Celiac Disease Awareness Campaign makes a point of saying all distilled alcohol is gluten-free, regardless of its original source.

    —The Canadian Celiac Association concurs, saying in part, “distilled alcoholic beverages such as gin, vodka, scotch whisky and rye whiskey are made from the fermentation of wheat, barley or rye. Since they are distilled, they do not contain prolamins [i.e., gluten proteins] and are allowed unless otherwise contraindicated.”

    –And for what it is worth, I know many celiacs who drink scotch, JackDaniels, Grey goose and Stoli.
    Not a single problem amongst them.

    –From the Univ. of Chicago Celiac Cneter:

    Q: Are distilled beverages made with a prohibited grain (wheat, rye, barley) safe for celiacs?

    A: Only specific gluten-free beers (Bard’s Tale, New Grist, Green’s, Redbridge, to name a few) are appropriately gluten free. As for pure spirits, (vodka, gin, scotch), the distillation process makes these beverages safe because the protein is removed. However, flavored spirits may contain malt, and should be avoided.

    No matter how many times I have posted this valid information in the last 4 years, someone has argued with me.

    To save time and energy, here is my response before you even bother:

    That’s fine. Don’t drink it then :) …..but don’t pass on bad info to other celiacs, please using the “I have heard that…” or “but my friend and I get sick on gin and vodka, so you’re wrong!” argument.

    Anecdotal evidence aside, it’s simply not proof that distilled spirits are not safe for celiacs.

    I assure you, if alcohol were harmful, I’d be stone cold dead by now.
    Cheers!

    • Great info IH! I am one of those super sensitive “glutenometer” Celiac’s who can sense any slight trace amount. I recently tried my brother in-laws beer that he brews himself which was made with wheat (gluten). He explained the distillation process and thought it might be safe for me. I had zero symptoms. Zero. Risky? A bit, but it was interesting to me to find that it had absolutely no effect on me in a negative way (that I could tell). I’ve only attempted this twice, but was more than fine after this. So it does appear that the gluten can be removed somehow in the distillation process. Having said this, I would not go out and try any beer that contains wheat or gluten. But it was an interesting experiment to say the least.

      • Guess you aren’t as super sensitive as you thought! Wheat beer should have a lot more gluten than a regular one that only has gluten from hops. Glad you didn’t get sick from your little ” cheat “. :)

            • I keep getting interrupted. I know there are a couple of mainstream beers that test at very low gluten because they are not made with wheat and have very little barley – mainly hops. That was my thinking. It just didn’t translate to my typing well! Oh hell! I think I will have a glass of wine!

              • Lima

                Is it really “a” glass – you sure it’s not “another” or a “fifth”?

                I’m sorry – I promised I would never tease you again, but after the day I’ve had, I just couldn’t help myself.

                • I hadn’t had anything when I posted. I just kept getting interrupted and ……. Don’t know why husbands, cats, dogs, kids, neighbors and annoying Mosquitos keep interrupting me!

    • Irish Heart, I am grateful that you shared this. Now going to see if the hubby stocked Jack Daniels or Jamison. Sláinte!

  15. Thanks for raising awareness on this important issue, Dude. I share your optimism that this is a step in the right direction, and shows what our community can do when we work together for a common cause.
    We have more work to be done (vitamins, pharmaceuticals, beer!, restaurants …) but I know we can keep the pressure on the FDA to address these concerns as well.
    We should all be inspired by what 1in133.org was able to accomplish. Every one of us who shared information, signed the petition, gave money or gave of ourselves towards this effort should be proud that they had a hand in making these regulations a reality!

    ~jules shepard
    gfJules.com
    1ini133.org

    • Thank you Jules for all your hard work to get this law passed and put into effect. There’s still much work to be done but this truly is a HUGE first step on the road to awareness and our ability to eat safely. The celiac community is grateful for all your efforts and dedication to the cause.

    • Amen Jules. I echo Musicmidgets sentiments.
      With so many comments focusing on alcohol, imho we have bigger issues to tackle such as the supplements and pharmaceuticals.
      One step at a time I suppose.

      • Mary

        I agree with you and Music, as usual, in congratulating Jules for her well deserved Kudos in this accomplishment.

        However, as you said, one step at a time. I believe some alcohol comments involve including somewhat of a little bit of celebration of today’s accomplishment before moving on to such a serious mountain as pharmaceuticals, which would be another monumental accomplishment. Since my Dad had surgery today & my Mom has cancer appts next week for which I’ve already had to preapprove even her CT Scan contrast drinks, I have a lot to say about that topic and Dude is already working toward that goal – But maybe today wasn’t the day for me to get into all of that. I appreciated Dude including a lighter topic for me to laugh a little will waiting on surgery results.

      • I raise my glass to you, too!

        You know when all 3 of us were sitting chatting back in April– right next to Dr. Fasano, one of the leading celiac researchers in the world— we were ALL drinking.

        I’d think if it were a hazard to celiacs, he’d have slapped that booze right out of our hands. :)

        • Just a random observation about alcohol – and all the other debated-to-death, does this really have gluten in it? issues. In the beginning, the paranoia is our best friend and probably our best form of self preservation. It makes us stop and question everything before we eat or drink it and early on, I think we need that. But after a certain amount of time, and due diligence in our research, we should know what foods and drinks are generally safe for us. We should also have a pretty decent feel for what our bodies can tolerate and what they can’t. After I’ve been glutened, I usually feel better if I avoid coffee for a while. Does this mean coffee is making me sick? No, just that coffee is a natural irritant. Same thing with alcohol. After giving myself some time to heal, I can tolerate these things again with no problem.

          I feel like some people just never get past that paranoia stage either because they’re following bad information or maybe even more so because they’re not really listening to their bodies. When I get glutened, the joint pain, irritability and anxiety clue me in long before the intestinal issues start. I’ve come to realize that not every stomach upset is a glutening. It’s taken the better part of a year to figure that out, but I have. And I refuse to live in fear. Life’s just too short. Ok, random observation over. :)

  16. “unless a spirit comes into contact with gluten AFTER the distillation process, there is none present in the distillate.”

    Exactly.

    These are the dyes that are used http://www.briess.com/food/Solutions/nc.php

    As far as adding the mash back in to the product after distilling I have heard of this from distillers, I have nothing on the internet I can point to.

    I’m not saying to avoid all distilled spirits, just the crappy ones that always have perfect dark color despite having barely seen the inside of a barrel. Most barrels are sealed with wheat paste btw, so there is also that.

    • James

      I agree – it’s the AFTER distillation usually in less expensive products. The links I left Dude under your comment above agree with you & help explain why this is true if anyone wants to read that much info.

      Like Irish said, if a product makes anyone sick for whatever reason then just don’t ingest again.

      • Irish, I agree that instead of “most” it is probably “few if any anymore” at least from my experience & research. If someone has a sensitive reaction to some wines then it is most likely from “sulfites” instead of gluten, which is a whole other topic for another day.

      • The reason wheat paste sealed barrels isn’t an issue with a lot of wine is because a lot of oaked wine is aged in stainless with oak added rather than in a barrel, and not all wine touches oak. An employee of a local winery told me that last year they still used wheat paste.

  17. It’s not enough. Really really wish the limit had been set to 10ppm. Not much changes, but at least the FDA will have a little more teeth to go after blatant offenders. That’s something, I guess. But it will make it impossible for that 20ppm limit to ever be lowered. I hope it doesn’t hurt the existence of certified gluten free foods.

    • This was something I’ve been worried about too. With the government setting the limit at 20ppm, will that pressure companies that set their own certifications at 10 or 5ppm to move up and accept the higher 20ppm amount? It seems possible. And companies that are currently certifying to 10 or 5ppm may be tempted to drop their certifications (which cost money) because they know that they can just use the government’s 20ppm and keep the GF label (though not the private certification logo of course). The company could then have more of a ‘free hand’ for their products to run mixed lines and relax their vigilance because they don’t have to defend to the 10 or 5ppm and won’t have someone watching them.

  18. I think the law is something we can work with. It definitely has room for improvement but at least we have a legal definition of ” gf”.

  19. Well, I just saw the story about the new law on the NBC nightly news…I was waiting to see if it would be covered…..and my hubs and I both whooped and hollered loudly in our living room. :)

    I say: it’s a HUGE step forward and we should be grateful.

    I send my thanks to Jules and everyone at 1 in 133.org, et al.
    who pushed this law into effect.

    “Today’s action could not have happened without the leadership of Congresswoman Nita Lowey of New York, and number of dedicated folks at FDA, in particular, Deputy Commissioner for Foods Mike Taylor, who understood why gluten-free labeling is vitally important to individuals with celiac disease and gluten-sensitivity.”

    http://1in133.org/

    big hugs to you, Jules!

  20. First of all,great post dude on the new law. My own take is that while I am happy about it, I have been sickened by “gluten free” and even “we swear on our mother’s grave and the bible its gluten free!” foods so many times that I will remain more careful than ever and not really trust labels. I doubt those companies who already know their food isn’t safe will suddenly go to great lengths to make sure it is. It will take enforcement by the govt., which I hope is forthcoming to get them in line. And I intend to report those companies that have already made me sick. So I will continue to look for the certified logo to stay safe and healthy.

    • Yes, exactly. I’ve been burned too many times, and with no testing or verification requirement under the new law, I’m not willing to take the companies’ word for it.

  21. I am seeing more controversy on the FB page and on various sites RE: alcoholic beverages and “gluten content”.

    I suggest you all read the research on this topic.

    The RESEARCH, not some websites or blogs or listening to people who speculate because I assure you, this information is getting twisted left and right. Just because someone feels “yucky” after drinking vodka, it does not mean there is any gluten involved.

    I have celiac, I drink vodka. I am fine…because I am 3.5 years post-Dx and my gut is healed and I can handle it.

    I can have my doctor verify this if anyone wants. Is my testimony any more valuable or less valuable than others who are posting and saying “my body says otherwise”…??

    Maybe some people (GF or not) just cannot handle hard liquor?
    It is pretty gut-ripping and causes terrible gastrititis, which feels
    like you’ve been hit by CC. (stomach burning, diarrhea, etc)

    Gluten is not always the “culprit” when you do not feel well.

  22. Thank you to all who had a hand in this small step forward. And, thank you for continuing to fight for what we need. Please let us know if there is any way we can help with the medication and other issues.

  23. No rants about ‘GF should mean really free to zero’ – I promise! I’m glad that there is some regulation and recognition of the need for labeling – that being GF is not a joke for us. But from my perspective the law doesn’t make me feel safer.
    As GD explained, “And one other note…testing is not mandatory. Manufacturers are not required to test for the presence of gluten in ingredients or in the finished “gluten-free” labeled food product. Not only that, but there is no requirement for the manufacturers to keep records if they did indeed test for gluten.”

    With this, anyone can just say that they are meeting the requirements – the labeling is more like an honor system if I’m understanding correctly. I just don’t trust companies after having so many bad experiences with both direct and cross contamination. Plus, I react to even the trace-est amounts of gluten, so vigilance is the word of the day. I’ll stick to companies that I know produce GF in a dedicated GF facility. But even then, it is almost a full job keeping up with the companies to make sure that they haven’t changed their practices, facilities, product lines, etc. to make them something that I wouldn’t tolerate.

  24. We kinda got off topic in the comments it seems. I will say this for the last time.

    If alcohol doesn’t agree with you…don’t drink it. It really is that simple.

    But when pretty much every celiac expert confirms that the gluten is removed during the distillation process, you simply cannot claim the opposite without any facts to back it up.

      • OK – Mary threw down the gauntlet yesterday and today is a new day:

        “Restaurants. Another bummer but there is hope….Let’s face it…when we dine out…we are at risk. We are in the hands of the chefs and the servers. That’s just reality and I don’t see it changing in the near future.” I agree Dude since I represent restaurants who don’t advertise GF. We just have to carefully choose our spots & chefs for the time being as the fad dies down.

        “Prescription medications and over-the-counter drugs. This is desperately needed. Please stay tuned as a few powerful voices in our community, including yours truly, are banding together shortly to try to make this happen.” Agree and looking forward to the process. One of my first bad reactions 22 yrs ago was from a pain reliever pill and neither I nor my Dr had absolutely any idea why until I learned last year that it originally had gluten in the coating (some still do). I don’t hold that against the manufacturer then or now. All of the manufacturers I contact now are very helpful if I can’t find the info easily and especially when dealing with my Mom’s cancer related meds. I sincerely believe as our advocates like Jules and GDude continue to gain momentum that we will also be successful in this area as well because the manufacturers don’t want to hurt their customers – continuing education and awareness is the key.

        Fray ahead – batton down the hatches – especially you in HI Aloha!

        • Incidentally, I’m obviously not one of the “few powerful voices in our community” and I did not intend by my comment to pretend that I am.

          I’m a newbie who all of their advocacy has helped stay alive & for which I am very grateful. I am also happily cheering our powerful voices, including our GDude, on from the sidelines!!!

        • I am really hoping that something about pharma happens. Having meds with gluten in them is a huge risk, and not knowing up front what’s going on, how the facility is managed (if there are no gluten ingredients in the med), etc. I was recently in the hospital and it was amazing how much of a challenge things can be. And even with meds I take on a daily basis, its a process to make sure they won’t make me sick Regulating rx meds (and OTC, but that’s another issue technically I know) should definitely be on the advocacy agenda.

  25. In my opinion, this is great news, AS NEWS, AS PUBLICITY, AS AWARENESS, if only to emphasize and focus on the difference between the desires of “a little bit of gluten won’t hurt” fad dieters and the needs of those of us who truly can’t have any gluten.

    On CNN this morning, they announced the new law and then made the comment “Gluten is a protein in wheat, barley and rye that makes people with celiac disease really sick”.

    And *boom*! That’s what we’re talking about: making food safe for those suffering from a disease, not a damned thing else.

  26. So, a question….there is a restaurant near me that offers “gluten free” pizza. I have eaten the pizza, but I did not connect my mystery bouts of gluten-illness to the pizza until after I’d eaten the pizza a few times. I contacted them, and asked about their policy concerning safe handling of the gluten free items. After a few emails back and forth, they finally came out and said they have NO special directions or safeguards in place to ensure the gluten free pizza remained gluten free. I guess they have realized anything labeled “gluten free” means more dollars.

    Are they now in direct violation of this ruling, as it pertains to restaurants? And, if so, what can be done to them? When can I do to encourage them to follow safe practices in regards to the gluten free pizza? Are they, in fact, now breaking a law?

    • As a real lawyer (who has also played a real lawyer on TV), I can’t give you legal advice in a comment on a blog on the internet so I can’t legally answer all of your legal questions. However, I can advise you to visit an attorney in your home state with your questions if you really want a definitive legal answer to your legal questions. I can also provide the following link to the FDA Guide to small businesses, which may apply to your local pizzeria:

      http://www.fda.gov/Food/GuidanceRegulation/GuidanceDocumentsRegulatoryInformation/ucm402549.htm

      This link will either directly answer each of your questions and/or lead you to the correct answers.

      I can also say that I advise my restaurant clients in my home state to not advertise GF menu items in their restaurants because their kitchens do not consistently provide GF foods as now defined by and in accordance with FDA rules. A few of our local restaurants really do provide GF foods and legally advertise as GF. A couple of my favorite chefs don’t advertise GF at all but they rarely fail to provide wonderful GF meals for me.

      In order to encourage your local pizzeria to now fully comply with the FDA rules, I would first send them a copy of the above link, tell them they should read the link and related links & to talk with their own attorney and/or local health dept compliance officers in order to avoid future problems with the FDA, their local health dept, their customers and the lawyers representing their customers (which may help them avoid visits to their local court system and with their elected & appointed friendly judges).

      I will try to indirectly answer any other direct questions you may have if this answer is not specific enough.

      ——————–

      “The art of reading between the lines is as old as manipulated information.”
      – Serge Schmemann

      • For those of you who don’t want to read through the above link to find out whether the restaurant is in violation of new FDA rules, here is a direct quote:

        “12. What happens if I label my food as “gluten-free” and the food is not in compliance with the “gluten-free” regulation, such as it has a gluten level above 20 ppm?

        If you label your food as “gluten-free,” but it is not in compliance with the “gluten-free” regulation, such as its gluten content level is above 20 ppm, then it would be “misbranded” under the Federal Food, Drug, and Cosmetic Act, and FDA could take regulatory action.”

        The restaurant’s state and local health depts and other local regulatory agencies, etc may also take action depending on each state & local govt laws.

        – my Grandmother would not have read the link either because she would always “pre-open” her Christmas presents, re-wrap the presents & put them back under the tree – she did not like surprises or having to wait for answers either.

    • One other thought this morning which may help readers understand my comments above.

      When a lawyer is asked:

      “Are they now in direct violation of this ruling, as it pertains to restaurants?” … “And, if so, what can be done to them?” … “Are they, in fact, now breaking a law?”

      The answer from that particular lawyer generally depends upon in which jurisdiction the lawyer stands and whether the lawyer represents the restaurant or represents the customer who got sick from eating in the restaurant.

      It’s like asking five lawyers “Is the sky blue?” The answers will probably range from yes to it depends to no. Just like answering whether the restaurant is in direct violation of the new FDA rules, it depends on a lot of factors in each individual case. However, generally, the above described restaurant needs to do more homework and be careful if it wants to stay out of gluten filled regulatory trouble – just like its customers may need to do if they want to remain free of gluten.

    • Unlike Hap, I have never played a lawyer on the Internet so I will just go with what I have seen and heard from the FDA’s actual ” mouth”. This is what they said at ICDS – The law does not apply to restaurants. The FDA said they hoped restaurants would follow it. However, with any of these regulations and laws – they only mean what a lawyer can convince a judge that they mean. If people start filing lawsuits, who knows what this law will actually turn out to be a few years from now.

      Restaurants have many legal reasons not to want to say a food is ” gf “. In fact, many will say ” gluten free friendly” instead of ” gluten free”. Most have a huge disclaimer on the menu about accidental gluten. Many will say ” gf crust” but not ” gf pizza”.

      By all means, speak or email with the pizza place. If nothing else, you can get them to stop saying the pizza is gf. And you now know that you must ask questions before trusting that the food in a restaurant is gf.

      • Good morning Lima – maybe you should play a lawyer on the internet – you hit the nail squarely on the head with:

        “However, with any of these regulations and laws – they only mean what a lawyer can convince a judge that they mean. If people start filing lawsuits, who knows what this law will actually turn out to be a few years from now.”

        Reminds me of a lot of the judgments including but not limited to the little hamburger joint & hot coffee damages awards, etc.

        You know if sharks smell blood & poor old lawyers have to eat too…

        I always advise my clients to ere on the conservative side of caution & when they don’t listen to me, well, poor old lawyers have to eat to…

      • I would also point the more cavalier, risk taking restaurants to the following language:

        “Firms are not required to label their foods “gluten-free,” but if firms whose foods are regulated by FDA voluntarily choose to make this labeling claim, those products must conform to our definition for a “gluten-free” food.”

        Lot of wiggle room for a hungry lawyer and sick customer in that language…

        • The rule doesn’t apply to restaurants but you can try to scare them with it. Restaurants are sort of odd – there are some federal guidelines/laws that apply to them but the day to day “regulators” are county, city or state (different in different states).

          • Lima

            I never try to scare anyone & especially my clients.

            After 30 yrs of law practice, I only give “words to the wise” … the hearers can believe me or not … But I will say, as GDude has said many times, if there are $$$$$$$ to be collected, I would not want to be the restaurant (or its attorney) standing in front of the judge and/or jury without insurance coverage pleading, “well, the FDA & Lima Bean told me this rule in 2014 did not apply to restaurants”. Business is all about calculating risks & this is a risk to calculate. The big restaurants can make enough money off their GF menu items to afford to pay some judgments & their attorneys. The little small ones can’t & they go out of business.

          • Also, if I was a restaurant and/or its attorney, I would also pay close attention to the language, also “from the FDA’s mouth”, as quoted by GDude above in his blog post:

            “We encourage the restaurant industry to move quickly to ensure that its use of “gluten-free” labeling is consistent with the federal definition and look forward to working with the industry to support their education and outreach to restaurants. In addition, state and local governments play an important role in oversight of restaurants. We expect to work with our state and local government partners with respect to gluten-free labeling in restaurants. We will consider enforcement action as needed, alone or with other agencies, to protect consumers.”

            That’s strong enough language to keep restaurant defense lawyers awake at night, but also calculating next years’ revenues from clients who like to take risks.

            That’s all the free legal comments I have allotted for today.

      • Restaurants do not “have to” do anything.

        Most will make a broad CYA statement that they will do their best to avoid CC. Some will disclose that their staff took the GIG training course.(look at the Bonefish Grill policy, for example) If that is the case, you can probably dine safely.

        A “gluten free pizza” offering at an Italian restaurant always sets off alarm bells in my head.

        Unless that GF pizza dough was made in a dedicated facility, handled with gloves, assembled with toppings in a separate dedicated space in the kitchen and put in a dedicated oven? You’re not getting a GF pizza from a regular pizza parlor.

        And I can tell that I have in fact, written a very polite letter to a local cafe explaining why their “GF menu items” are not exactly GF and that they may want to take some steps to make it safe for GF people to eat there. I did this after eating there myself a few times and then quizzing them further when I realized I was not feeling well. That “second toaster”–that I thought meant it was used for the GF bread—was not DEDICATED. A few other “truths” came out that made me realize they were not as GF- savvy as they let on.

        I even sent them a GIG kitchen safety tip sheet and for a few dollars, they could have made the changes necessary for me and other GF peeps to return there and eat, (separate toaster, condiments not coming from one shared jar, etc….)

        Never heard from them and they still boast “GF menu” items.
        So be it.

        The only recourse I had was to change my review on Find me Gluten Free and stop giving them my business, but they continue to sell GF pancakes, sandwiches, etc and seem to do fine without me.

        • I’ve been ill or left after ‘quizzing’ at every GIG restaurant I’ve been to. I wonder how seriously the staff take the training and if there is a high turnover rate without retraining, etc. My rule is that if they are GIG, I avoid the place altogether.

          • If this is the case, you must not feel safe eating anywhere then.

            Sorry to hear that. :(

            And if you get sick every single time, maybe it is best that you avoid eating out altogether?

            • Exactly. I only go to dedicated GF restaurants that use reliable ingredients like Bob’s Red Mill instead of high food fraud Asian bulk imports – which are notably cheaper.

              I’m in South Texas now. One Lucky Duck and Red Oak Bakery are the only places I go here. I am from the Bay Area, and Zest, Asian Box, and Pica Pica are my go-tos.

              It isn’t much, it makes dating impossible, and I feel like I had a whole decade of my youth stolen out from under me. Now, I don’t feel that I’ll ever have a partner, I can’t see myself keeping up with kids, and I sometimes need help to walk. I often have thoughts of self harm and ending my life. I’ve had therapy, but there are still terrible days.

              • If you are newly diagnosed, you may still be feeling depressed because of nutiritional deficiencies.But if you have been GF for a while and still feel this way, you need to seek help. Go to a celiac support group, a therapist or see a doctor.

                Being a celiac is no cause to want to harm yourself.

                Feeling this way may have an organic cause–you may be getting glutened and you do not realize it, or as I said, you may have any number of vitamin deficiencies going on.

                Seek out a doctor and get help. Please do not tell me you do not have insurance. I hear this often and I will gently remind you that if you can afford to eat out, you can afford a consult.

                Your mental health is far more important and you need to feel better.

                good luck.

                • Thanks. :)

                  It has been since 2004. I found out in 2011 that I’m not celiac – it is autoimmune, though. I know that I have a strong depression/joint reaction to gluten, and I’m getting help with depression as of 2012.

                  I feel really rejected by the GF/celiac community for being disciplined (please don’t call me “very sensitive.” So alienating and hurtful). I’ve also found that those of us who fight for rights that benefit the whole community are lashed out at by the community. It feels so sad.

  27. “- Prescription medications and over-the-counter drugs. This is desperately needed. Please stay tuned as a few powerful voices in our community, including yours truly, are banding together shortly to try to make this happen.”

    Please do elaborate on your efforts, GD. Are you aware FDA has been working on this for over 6 years?

  28. I am thankful things are changing. Just yesterday I bought a box of cookies that clearly said “Gluten-Free” in decent sized lettering on the front and the side of the box. Today I discovered that on the back of the box it says that the cookies “May contain traces of wheat…”! That might explain how I’ve been feeling today. That’s what I get for eating food out of a box. The cookies are from Salem Baking Co. Thin & Crispy White Chocolate Macadamia with a hint of sea salt.

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