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    Jennifer Nelson, M.S., R.D. and Katherine Zeratsky, R.D.

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  • Nutrition-wise blog

  • Sept. 14, 2011

    Defining 'gluten-free' — Is it all or nothing?

    By Jennifer Nelson, M.S., R.D. and Katherine Zeratsky, R.D.

32 comments posted

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In August the Food and Drug Administration (FDA) reopened the comment period for the proposed rule on the term gluten-free on food labels. This extension is your last chance to comment before the rule is adopted.

The FDA proposes to allow use of the term gluten-free for foods that do not contain any of the following:

  • An ingredient that is a species of wheat, rye, barley or a crossbred hybrid of these grains
  • An ingredient derived from these grains that has not been processed to remove gluten
  • A processed ingredient derived from these grains that adds 20 parts per million (ppm) or more of gluten
  • Any food containing 20 ppm or more of gluten

It may seem contradictory for the agency to say that a food that contains gluten — even less than 20 ppm — is gluten-free. However, analytical methods are not available that can reliably detect lower levels of gluten.

In addition, this level was vetted by an expert panel that examined existing research to determine a "safe" level — the point at which no or few adverse effects occur. It's also important to note that 27 other countries currently use this level. Finally, the FDA has said that it's open to revising the standard in future if more sensitive methods are developed for determining gluten levels.

Some people might be tempted to discount the proposed rule because they feel no amount of gluten is acceptable in a food labeled as gluten-free. However, not adopting some set of criteria means that people with celiac disease will remain in the dark when trying to interpret food labels. Claims such as "made on equipment that shares processing with wheat" or ingredient names such as "wheat starch flour" are confusing and don't provide meaningful guidance.

For those with celiac disease it is critical to have foods with the lowest possible amount of the offending grain — preferably none. Defining gluten-free in a realistic and enforceable way is a good first step.

What are your thoughts? Share them with FDA now — the link appears in the reference list.

- Jennifer

32 comments posted

blog index

  • April 15, 2013 10:46 a.m.

    Well it seems like common sense if it says gluten free it shoud be just that. Free of all gluten. Because of companies irresponsible labeling and a lack of standards across the board many people who are trying to do right for their bodies are being confused. This will lead to many long term problems causing additional strain on the medical system.

    - Yvette

  • July 20, 2012 7:08 p.m.

    Carol, you could be getting gluten from other than food sources. Your skin is largest organ and if you have wheat in your skin care products you are possibly absorbing large amounts that reach your digestive system. glutenfreenaturalvitamins has info.

    - S

  • April 6, 2012 10:44 p.m.

    We have been GF for a short while. Only can recommend is for all people to read not only the front labels of all products; but, most importantly the ingredients label as there lies many items what is not covered on the front packaging. Red Mill people swear by has on its back of packaging that their may be traces of wheat in their products as grains at their plant are ground on the same machinery. Thank goodness for their truth and wish somehow it was known to more people to continually read all the package.

    - nana

  • March 7, 2012 1:07 a.m.

    I was diagnosed with Celiac Disease in 9-11. Not knowing a great deal about it, I did a fair amount of research & decided, because I am pretty much a sugar addict, to not start the GF diet until after the holidays. I started on 12-31-11. I am very careful to not allow ANY gluten in my food at all. I am gradually checking all my meds. & I take many every day! I did find a list online that said all my meds were GF. However, since a few months before I started this diet & not being well educated yet, I began having more & more daily bouts of diarrhea - up to 10 X day. No anti-diarrhea med worked AT ALL! Finally on Monday, 2-20-12 I stopped eating all foods for 5 days. I only drank enough water to stay fairly hydrated. It took until Thursday PM to finally stop having diarrhea completely. I am truly housebound. On Friday, I saw my primary doctor & he strongly told me I HAD to resume eating. I limited myself to 1 generic Ensure & a small amount of fresh fruit or a few crackers and peanut butter. I was fairly fine but as the days went by, I began having more & more diarrhea. On 3-3 I again discontinued eating all food & only have had a bottle of Boost each day. It has more protein. I continue to have repeated bouts of diarrhea & I fear I have damaged so much of the villi that I can't digest any solid food I eat. I am at a loss & pretty depressed. Anyone out there have any ideas? I'm open for any that make sense! Am I the only one with this ong

    - Carol

  • February 13, 2012 10:08 a.m.

    I get a reaction to any amount of gluten in any product. I'm sure I'm not alone. For that reason, no product should be able to list that it is "gluten free" unless it is truly 100% free of gluten. For instance, Benefiber states right on the label that they are gluten free, but yet their product does contain wheat dextrin, which does contain gluten. On their website they state that they can say they gluten free because Benefiber "contains less than 20 ppm of gluten". They continue that "people who experience gluten intolerance should not consume any products, including Benefiber, that contain any level of gluten unless otherwise directed by their doctor". Why on earth do they state that they are gluten free then?? I tried it a few weeks back, and had a horrific reaction. Please, no gluten should mean no gluten!!

    - Kelly

  • October 25, 2011 4:41 p.m.

    This is a big step as glutenous grains are a common food allergy in many people. It is the single most allergy producing food in children. With the industrialization of grains, including the processing and refining that takes place, along with the chemicals, sprays and pesticides that are used on conventional crops, actually poses serious health risks to millions of human beings. Glutenous diets have been shown to promote serious health issues in many people, especially in those with autoimmune or other chronic diseases such as cancer. Many medical doctors are unaware of the side effects of gluten, running test after test with no answers. Hopefully, these such issues will be addressed in the near future as well.

    - Heathar

  • September 23, 2011 7:05 a.m.

    It is all or nothing. If I eat anything that is manufactured in a gluten & gluten-free plant, I get sick.

    - Cheri

  • September 22, 2011 8:11 a.m.

    I have been urging the Canadian government to adopt particular labels for gluten since my diagnosis in 2003. I don't think they get it. I've argued with Members of Parliament, Ministers of Health and Health Department bureaucrats. I still don't think they get it.

    - Sheila

  • September 21, 2011 5:57 p.m.

    im am a super senstive celiac, any traces what so ever and I have a volient attack of severe pain the same as pancretics which I had for ove a jear and half before they found celiac. So better label must be used. I got sick on gluten free before. I think that what richard said is right get a count of 5 , 10 20. and contiune rescreching for way to make gluten free gluten free. Im done getting sick. I only use the bread and noodles n gluten freee flour no boxed stuff for me. Help us.

    - Donna

  • September 21, 2011 2:04 p.m.

    Fresh is best . . . Celiacs need beware anything inside a package not made by nature.

    - Gloria

  • September 21, 2011 10:36 a.m.

    I was biopsied in April 2004. I'm 87 years old. I have tried to be super-strict with my gluten-free diet and gluten-free medications. I even avoid licking the glue on envelopes etc. I'm still getting hidden Gluten from somewhere, because my Endoscopies continue to show damage to my Villi. I eat Gluten-Free foods but wonder if those 20ppm can be responsible. Might it be possible to label foods with "Gluten(0)" "Gluten(5)" "Gluten(20)" or some such quantitative value ?

    - Richard J

  • September 21, 2011 9:50 a.m.

    I WAS BORN IN 1943 AND HAD GASTRO PROBLEMS ALL MY LIFE. I WAS SKINNY AND DID NOT GAIN HEIGHT UNTIL 17 WHEN I GREW 8' IN A YEAR. I WAS SICKLY AND SENT TO A PSYCHIATRIST WHO SAID IT WAS ALL IN MY MIND. IT WAS THEN I DECIDED TO DO MY OWN RESEARCH AND CAME UPON CELIAC DISEASE. I TALKED TO MY DOCTOR WHO AGREED THAT I SHOULD TRY THE GF DIET. THIS WAS IN 1976. WITHIN 3 DAYS THE MAJOR SYMPTOMS DISAPPEARED. I HAVE BEEN ON A GF DIET EVER SINCE. I AGREE WITH THE LESS THEN 20PPM STANDARD, AS NOTHING IS PERFECT AND THIS HAS SOME SCIENTFIC BACKING. I WILL NOT EAT OATS REGARDLESS, AS I ALWAYS HAVE SOME REACTION AFTER EATING SAME. THIS MAY NOT BE RELATED TO GLTN INTOL. BUT MAY BE DO TO SOME OTHER FACTOR

    - ROBERT G

  • September 21, 2011 7:26 a.m.

    I was born in 1943 and diagnosed with celiac disease within a few months. My symptoms were classic: diarrhea, bloating, failure to thrive, etc. and I spent 6 months in the hospital being fed intravenously through my ankles. When released I was placed on a banana diet, with gradual introduction of other foods. Sometimes celiac symptoms came back and other times not. I learned about the GF diet 18 years later, again with the advice to introduce new foods gradually. This diet made for social isolation and a miserable childhood and adolescence.By the time I learned from published research that the diet damaged the intestines even without symptoms, I had become one of the unusual men who have osteoporosis. Let's get this realistic label approved NOW, that nobody else has to go through this needlessly. Please!

    - George

  • September 21, 2011 6:48 a.m.

    Eating gluten-free is required for all those with Gluten Syndrome.....Celiac Disease is just one of over 300 conditions manifested by those unable to tolerate/digest gluten. Even though medical professionals receive minimal nutrition education, it is common sense that what people are eating could make them sick.

    - Denise

  • September 20, 2011 7:04 a.m.

    Gluten is flavoring, stabilizing or thickening agent. I excluded oats from my diet, Several grains and starch sources are considered acceptable for a gluten-free diet.Gluten is used in ice-creams and ketchups. You can not totally gluten in your diet because gluten is used in our food for different purposes. You can go for caralluma, if you want to lose weight fast.

    - jonsy

  • October 10, 2010 5:29 p.m.

    does anyone know gluten cotent for scotch whisky,vitamin D capsul(prescripson),privacid capsul?

    - Nirmal

  • August 13, 2010 5:29 p.m.

    I have celiac and have been doing everything I know possible to eat gluten-free for four years with quite excellent results. Just recently I have begun having symptoms of a skin condition called DH which plagued my father who went undiagnosed for celiac until he was into his 80's. I have no idea where I must have picked up a trace of gluten to aggravate this condition. I would love to see a complete list of all trace ingredients which may contain hidden sources of gluten. Allergy information which only addresses wheat does not help me at all.

    - Susan

  • June 11, 2010 2:56 p.m.

    i think for the most part i am only going to be eating fresh fruits veggies chicken fish unbroiled, potatoes, and skip missing the breads and other junk that i was killing myself with -honestly i do not miss it. if you just shop natural foods fresh foods then you dont even have to look at any labels

    - amy

  • June 4, 2010 6:51 p.m.

    I was diagnosed 3 years ago with celiac sprue and the diet has been a challenge. I agree with some others that eating out can be difficult. My husband was recently hospitilized, and I couldn't believe how little choice there is in the hospital cafeteria for gluten-free diets. I even called the dietician and she suggessted I bring my lunch!!!

    - char

  • May 31, 2010 1:32 p.m.

    Unfortunately, all of this costs companies money - both testing and cleaning in between product runs. So unless they are specifically targeting a gluten free audience to sell to, there really is no incentive for them to do this unless they are mandated to do so. Government mandates bring with them a whole host of issues and expenses that also increase cost and in many cases lower quality in the long run...sadly, it all comes down to money unless it is from a company with a mission to serve the gluten free community!

    - Gina

  • March 31, 2010 9:30 a.m.

    Why doesnt the FDA test prescription and over-the-counter medications and label them gluten free also? We have wasted money on prescriptions only to discover that they were not gluten-free.

    - char

  • November 3, 2009 1:57 p.m.

    My husband was diagnosed 1 1/2 years ago - what a change in life for us. But as we went along it actually becomes easier, and we live in northern Alberta , far from the easy to get at Gluten free foods. You can order most gluten free stuff over the phone or internet so go searching. We eat better than before and alot healthier. I LOVE the magazine" Living Without" It has been the best thing for recipes and how to adapt my old recipes. One lady who bakes bread in the USA somewhere says to take rice flour, put it in your food processor and beat it down finer - it makes better bread. So go get the magazine. Also this MAyo site is great for new info.

    - Lori

  • October 22, 2009 7:09 p.m.

    The use of the term "gluten free" seems to be an about face from the current labeling. I have yet to notice a "does not contain" notice on any food product. So, why the exception for gluten. A more effective notice (for the celiac patient) would be "CONTAINS GLUTEN". Since the "Contains" clause is the standard for other ingrediants I suggest that would be the most appropriate and effective. iPerhaps the food industry does not want to discourage the consumption of Gluten.

    - Richard

  • August 14, 2009 5:27 p.m.

    I think Celiac disease is something that's not commonly known but needs to be put out there. I work with Chef's Diet, and we prepare meals daily that cater to specific people's diets (such as a gluten-free meal plan), and even deliver the meals to your door. I'm happy to see an article out such as this one, helping create more awareness around the subject. Thanks for posting, and if anyone is interested in what we do at Chef's Diet, please visit http://www.mychefsdiet.com. :)

    - Tony

  • June 2, 2009 12:50 p.m.

    I live in Vancouver Canada & have lots of GF products available. It wasn't that way when I first started about 7 yrs. ago. I also have a soy allergy which is difficult as most GF foods I find have it added. I do alot of baking, creating my own recipies. Some work some not so much. I have managed a bread which is awsome.

    - Sharon

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