Dear Gluten-Free Community,
I’m confused. And I need your help!
One summer morning, last month, I turned over in bed, opened my sleepy eyes and turned on the radio to hear the 7 am news. I was amazed to hear the FDA ruling on gluten-free labeling had been finalized – and had made NPR headline news! BUT I didn’t jump up and down with glee. I laid in bed a while longer, as I struggled to come to terms with my emotions. Is this really great news?
Over the course of the day, I watched gluten-free people everywhere virtually high-fiveing, as they rejoiced in celebration over Twitter and other social media. Meanwhile, I was feeling down, a little confused, and very alone in my thoughts.
Depending on which study you read, 74 % to 92% of celiacs who go on a gluten-free diet never heal, . That’s huge! Why are we not talking more about this? And why does everyone keep pushing the gluten-free diet as we know it, if its not really helping people that much?
The traditional gluten-free diet (GFD as its called in medical literature) is defined as a diet that is void of wheat, barley and rye. Oats are not even considered part of the GFD anymore (although I’m not sure I agree with this).
So why aren’t most people healing on the GFD? One likely possibility is because 32% of inherently gluten-free grains are cross-contaminated with more than 20ppm of gluten. This means that if your buckwheat or millet or quinoa is not labeled gluten-free, don’t assume it is! And you may not see that gluten-free label on such single-ingredient packages anytime soon, anyway. Dr. Petersen discusses that more here.
New legislation now requires foods that are labeled gluten-free to have less than 20ppm (parts per million) of gluten in then. So foods labeled ‘gluten-free’ are not really gluten-free! They are low-gluten. Read Dr. Anderson’s article for more discussion on what exactly does it mean for products to have less than 20 parts per million of gluten?
But now that we have standards in place (it will still take a year for them to go into effect), will you at least be able to trust those packaged food products that are labeled as gluten-free? As of mid-2013, most manufacturers of gluten-free foods were already voluntarily producing foods with this standard in place, so we probably won’t see any drastic changes to our GF food system. The new legislation will just ensure that manufacturers new to the gluten-free industry will also comply with the 20ppm standard. But is that enough? Is 20ppm of gluten actually safe? If so, why did Australia and New Zealand rule that it should be 3ppm?
One study by Dr. Alessio Fasano and colleagues, is continually referenced to support the idea that 20ppm or less is deemed to be safe. However, upon reading the entire study, I don’t see where it actually says that 20ppm is safe. They say that 50 mg of gluten per day is a “minimum [emphasis mine] dose required to produce measurable damage” and that “the threshold of 20 ppm keeps the intake of gluten from “special celiac food” well below the amount of 50 mg/d, which allows a safety margin for the variable gluten sensitivity and dietary habits of patients.”
They conclude that the
intake of 50 mg gluten/day produced significant damage in the architecture of the small intestine in patients being treated for CD. However, the sensitivity to trace intakes of gluten showed large interpatient variability, a feature that should be accounted for in the implementation of a safe gluten threshold… Finally, the relation between the intestinal damage induced by trace intakes of gluten and the long-term complications of CD remains to be elucidated.
What this says to me: We know 50 mg/d of gluten causes intestinal damage. We don’t know at what point trace amounts of gluten cause damage. And it’s different from one person to the next. So let’s arbitrarily pick 20ppm because if you eat several gluten-free foods that contain 20ppm of gluten in one day, at least you won’t reach the 50 mg per day that we know causes damage.
I believe that this study is inherently flawed.
It assumes that unless there is measurable intestinal damage, then gluten is not harming us.
First, villous atrophy actually happens in a patchy distribution, so a biopsy that shows no histological changes, does not necessarily always indicate a disease-free patient.
Second, there are many other ways that gluten can affect a person besides the gut. For instance, dermatitis herpetiformis (DH), is a gluten-induced skin disorder associated with celiac disease, but its been shown that 20% of DH patients show “apparently normal small bowel mucosal architecture”. As another example, gluten ataxia is a very serious disorder that affects the brain and yet, patients have developed “severe neurological symptoms” without “gluten?dependent small bowel mucosal atrophy.” This supports the notion that “coeliac disease clearly exists beyond villous atrophy, [and]… small intestinal villous atrophy is only one manifestation of genetic gluten intolerance.”
And what about the other approximately 200 other medical conditions associated with gluten? While celiac disease is an autoimmune disorder that affects less than 1% of the population, (and mucosal damage is most often how it is diagnosed), Non-Celiac Gluten Intolerance (NCGI) now called Gluten Sensitivity (GS) affects 8 to 12% percent of the world’s population (and possibly even much more). GS patients exhibit symptoms similar to celiac disease, but biopsies and blood tests come back negative for celiac disease. In fact, 50 to 75% of GS patients never even complain about digestive distress! So how do we know that trace amounts of gluten aren’t still hurting is, especially if we know, as already stated, that 74% to 96% of patients on the standard GFD do not heal!?
Just because 20ppm of gluten ingested (several times over the course of a day) doesn’t show histological damage (the majority of time in one study) does not prove that its safe! In fact, one study has shown that there are indeed patients for whom even just a milligram of gluten a day causes mucosal harm. For more information, watch Dr. Tom O’Bryan’s discussion on the study.
In 2013, Dr. Fasano and his colleagues published an article that looked at a group of people who did not heal on the GFD and asked them to go on what they called a Gluten Contamination Elimination Diet (GCED), which was essentially a grain-free diet, in an effort to remove any chances of being cross-contaminated by trace amounts of gluten. Only white and brown rice were allowed. And what was the response rate? 82% of patients on a diet that removed trace amounts of gluten responded well to the treatment.
Clearly, the gluten-free diet as it stands now is not enough, and removing trace amounts of gluten has met with great response. There is plenty of anecdotal evidence to support this. Just look at the sheer number of people adopting the “paleo” diet (a grain-free diet) because they did not respond well to the standard GFD. (You can read our paleo-month blog post here and here from this past July for just a few of these personal accounts).
As far as I can see, Dr. Fasano’s 2007 study has not proven that 20ppm is safe for the majority of the general gluten-sensitive population.
The only people that are really benefiting from the 20ppm threshold are gluten-free food manufacturers, who (combined) are making billions of dollars a year off consumers who think that gluten-free products are healthier for them. In fact, you can almost read between the lines, when Dr. Fasano says in his letter, In Defense of 20ppmthat setting a safe gluten-free threshold below 20 ppm would be harmful to manufactures because the limits are too restrictive and that US manufacturers would not be able to “compete successfully in the gluten-free global marketplace.” So is that what it’s really about? As Fasano says, “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.”
That would be a shame, because gluten-free sensitive people everywhere would be forced to get the majority of their calories from fresh, whole foods.
It was only toward the end of that August day that I tweeted with two very prominent individuals in the gluten-free space, Shauna Ahern and Jennifer Esposito. It turns out they shared my sentiments. @JennifersWayJE tweeted:
bullshit. If u eat this stuff everyday/every meal it adds up-its 1/8of a tsp gets us ill.
And @glutenfreegirl tweeted:
this is all a call to arms for those of us who are gluten-free: cook real food.
I was happy to know that I’m not alone in my thoughts anymore.
But I’m still confused.
Why was there so much celebration on the passing of this regulation, if most people on the standard gluten-free diet never heal, and what they’ve already been eating won’t be affected much by the law?
I am mostly worried about the newly diagnosed celiac or gluten-sensitive patient, who will be roaming grocery store shelves for help, and will be inundated with GF products that they believe are going to help them finally get better, after months, maybe years of agony. But will they really get better?
So now I ask you – where do you stand on this? How long have you been gluten-free? Why did you go gluten-free? And are you feeling better on the traditional GFD, or have you had to go beyond what we are now allowed to call gluten-free (but which is really low gluten)? Please comment…. I really want to hear your thoughts!
 Intestinal Damage from Celiac Disease Persists in Adults, Even with Gluten-free Diet. National Institute of Diabetes and Digestive and Kidney Diseases. September 2011. http://celiac.nih.gov/TissueDamage.aspx
 Anderson, Jane. How Much Trace Gluten is In Your Food? CeliacDisease.About.com. http://celiacdisease.about.com/od/PreventingCrossContamination/a/Different-Trace-Gluten-Levels.htm
 Catassi C, Fabiani E, Iacono G, D’Agate C, Francavilla R, Biagi F, Volta U, Accomando S, Picarelli A, De Vitis I, Pianelli G, Gesuita R, Carle F, Mandolesi A, Bearzi I, and Fasano A. A prospective, double-blind, placebo-controlled trial to establish a safe gluten threshold for patients with celiac disease. Catassi, Carlos, et al. Am J Clin Nutr 2007. 85:160 – 6.
 Arzu Ensari, MD, PhD, Gluten-Sensitive Enteropathy (Celiac Disease). Controversies in Diagnosis and Classification. Arch Pathol Lab Med. 2010;134:826–836.
 Latent coeliac disease or coeliac disease beyond villous atrophy? Katri Kaukinen, Pekka Collin, Markku Mäki. Gut. 2007 October; 56(10): 1339–340.
 Petersen V and Petersen R. The Gluten Effect. How “Innocent Wheat is Ruining Your Health. True Health Publishing. 2009. 403 pp.
 Biagi F, Campanella J, Martucci S, Pezzimenti D, Ciclitira PJ, Ellis HJ, Corazza GR: A milligram of gluten a day keeps the mucosal recovery away: a case report. Nutr Rev 2004;62:360-363.
 Hollon J, Cureton P, Martin M, Puppa E and Fasano, A. Trace gluten contamination may play a role in mucosal and clinical recovery in a subgroup of diet-adherent non-responsive celiac disease patients. BMC Gastroenterology 2013, 13:40
 Gluten Free is Still Going Gang Busters. PackagedFacts.com. http://www.packagedfacts.com/about/release.asp?id=3033
 “In Defense of 20 Parts Per Million” A Letter from Alessio Fasano, M.D., and The University of Maryland Center for Celiac Research. August 2011. http://www.glutenfreediet.ca/img/Fasano_letter.pdf