Tricia Thompson talks with Gluten-Free Living about her organization, Gluten Free Watchdog, LLC, and its role in the community.
It’s not even 8 a.m. on a chilly morning in Boston at the Academy of Nutrition and Dietetics 2016 Food and Nutrition Conference and Expo, but Tricia Thompson has already been hard at work for nearly two hours. She’s just presented at an educational breakfast to nearly 50 registered dietitians on oats and the gluten-free diet. It’s an important topic for Thompson, who has spent much of the past few years researching the different methods and practices that manufacturers use to produce gluten-free oats.
Told she could possibly have celiac disease as a teenager, Thompson became a registered dietitian in 1991. Her passionate advocacy for those on the gluten-free diet led her to launch her first website, Gluten Free Dietitian, in 2007. In 2011, she started the first (and only) independent, subscriber-driven gluten-testing organization, Gluten Free Watchdog, LLC (glutenfreewatchdog.org).
I had the chance to sit down with Thompson after the breakfast in Boston and talk a little bit with her about the inspiration behind Gluten Free Watchdog, LLC, and what she hopes those in the gluten-free community gain from
Amy Jones: What led you to be diagnosed with celiac disease?
Tricia Thompson: I was always the kid with the stomachache, doubled over in pain. I was a frequent visitor to the emergency room and went through multiple x-rays and even colorectal surgery in high school. This all finally resulted in being told I had irritable bowel syndrome, lactose intolerance and possible celiac disease.
So the diagnosis wasn’t straightforward?
Not at all. I remember having to swallow a ball attached to a long, black tube, and had to keep swallowing so the tube would feed slowly down my throat. Believe it or not, I had to do this alone, without the presence or assistance of medical staff—twice. The first time there wasn’t enough tissue to test, so I had to do it again. Unfortunately, in the end, I was told that the medical facility I went to didn’t have the capacity to do biopsies, and it left whether I had celiac disease as an open-ended question.
How did this play into you becoming a dietitian?
My gastrointestinal issues played a very big role in my career choice. At the time of my possible celiac disease non-diagnosis, there was no readily available source of information on the gluten-free diet; this was the early 1980s in Alaska. I remember going to the library at the university and sitting in the stacks, pouring through nutrition books, looking for information. At some point, I made the decision to eat gluten free even though I didn’t know whether or not I had celiac disease.
What inspired you to start Gluten Free Watchdog, LLC?
All children and adults with celiac disease or gluten-related disorders inspired me to start Gluten Free Watchdog, but most especially those who are fearful of eating because they are afraid of getting sick. I worry the most about the children. We think of them as being resilient, and they are, but this doesn’t mean that what they go through as kids does not impact them as adults. I want children with celiac disease to feel confident when they eat and to not worry that they will get sick from their food.
You’ve tested hundreds of products. How do you decide what products to test?
The products tested are based on requests from subscribers. We test both products that are labeled gluten free and products that appear to be free of gluten-containing ingredients but are not labeled gluten free. Foods tested must be readily available in retail stores in the U.S.
How is the testing funded? Do you have advertisers interested in sponsoring the work?
Gluten Free Watchdog, LLC, is a subscription-based service that is funded by subscribers. Manufacturers cannot be sponsors, and we do not accept advertisements. Our intent is to be an unbiased voice and source of information for the consumer. The consumer is our one and only priority.
How many requests do you typically get for testing each month?
Oh goodness, I can’t keep track. We get many requests each week for testing and to investigate potentially misbranded products. There has been an uptick in requests to test oats, legumes, probiotics, and vitamin and mineral supplements.
Have you seen any trends in specific types of foods frequently requested for testing?
Reasons for specific requests vary, I think. Many parents want to make sure that the foods their children are eating are truly gluten free; some folks request testing of a product because they believe it made them sick; and some are concerned about a specific ingredient in food, such as yeast extract.
What is the process typically like for getting a product tested?
Products are either ordered from a manufacturer website or online retailers like Vitacost or Amazon or purchased at grocery stores in Massachusetts. I carefully review the product label and record the information—the ingredient list, whether the product has a gluten-free claim, any allergen advisory or “contains” statements, gluten-free certification mark, etc.
Do you work with a certain lab for testing?
Bia Diagnostics out of Burlington, Vermont, does all the testings for Gluten Free Watchdog, LLC. They are an incredible source of information. Thom Grace [CEO, Bia Diagnostics] and I first started chatting about testing in 2008, and then he and Bia Diagnostics did the testing for a 2010 study on gluten contamination in “naturally” gluten-free grains. Both Thom and Bia Diagnostics have been very supportive of our efforts to provide this testing data.
Is that study on gluten-free grains one of the reasons you felt compelled to start testing foods?
Both the 2010 study and a prior study I did on oats provided data that was not readily available to either health care professionals or consumers. Concerns over cross-contact started to increase, and it became apparent that we needed more data on gluten levels in foods.
What is the process like once the food is shipped to the lab for testing?
A sample submission form is completed and included in the box. This form includes the specific assays and extraction solutions we would like the lab to use to test food for gluten. The methodology requested depends upon the ingredients in the products, such as hydrolyzed protein, tannins or polyphenols, or a high percentage of oats. When products arrive at the lab, they are tested for gluten using the fully validated sandwich R5 ELISA Mendez method, although this can vary depending upon the actual ingredient composition of the product.
When a product tests high, do you share these results back to the manufacturer? What kind of reactions do you typically get?
When a product tests at or above 20 parts per million of gluten, test results are shared with the manufacturer. We typically discuss findings via phone or email and generally can pinpoint a possible reason for the high result. Reactions from manufacturers are mixed. Some are very thankful to be told about the results and to have help correcting potential issues. Others blame the messenger.
Do manufacturers request that you retest products that have tested high?
We retest all products testing at or above 20 parts per million of gluten within one year of the original testing. Upon retesting, most manufacturers have made changes to the ingredients or the sourcing of ingredients used in their food, and almost all products test below 20 parts per million of gluten. However, there are areas where improvement is needed. For example, products containing oats can be a problem. Based on our testing, about 14 percent of products containing oats as the first or second ingredient are testing at or above 20 parts per million of gluten. And of course, the number of manufacturers continuing to use barley malt ingredients is concerning.
What has been the most difficult thing about Gluten Free Watchdog?
It is more a frustration than a difficulty. In addition to testing foods for gluten, we also review the ingredient lists of foods labeled gluten free. We continue to have an issue with gluten-free foods containing malt ingredients from barley. I spend hours talking with the manufacturers of these products. They are the most difficult manufacturers to deal with because they believe they are “right.” There is a lot of back and forth involved to demonstrate to them that the FDA [Food and Drug Administration] does not currently allow the ingredients malt, malt extract and malt syrup from barley in foods labeled gluten free.
You recently launched videos on various gluten-free topics. What was the inspiration behind that?
My hope with the videos is to chat informally about various issues related to gluten-free diets. These are “no budget” videos—I just sit in front of my computer and talk without regard to lighting, etc. My goal is for viewers to feel like they are sitting across from me in my home office, chatting about whatever gluten-free issue interests them.
Are the test results you see in Gluten Free Watchdog increasing your confidence in gluten-free labeling?
For the most part, yes. Overall, about 95 percent of the products tested through Gluten Free Watchdog, LLC, test below 20 parts per million of gluten. It obviously would be best if this number were 100 percent, but 95 percent is pretty good. And when manufacturers are open to receiving help, Gluten Free Watchdog, LLC, works with them free
Do you think the FDA has done enough with the gluten-free labeling rule to help protect consumers? What else would you like to see them do?
The FDA’s gluten-free labeling rule is fine. The issue, in my view, is enforcement. I am frustrated by the lack of enforcement when products are labeled gluten free but contain ingredients they are not supposed to contain, according to the FDA. Barley malt, barley malt extract and hydrolyzed wheat protein are the ones that are most frustrating in that regard. I would like to see the FDA follow its public statements related to rule enforcement. The FDA states that ingredient review is used to regulate compliance with the gluten-free labeling rule. So it should be simple—if a product is labeled gluten free and it contains an ingredient not allowed in foods labeled gluten free, and the FDA is made aware of such products, then those products should be recalled.
What do you hope subscribers take away from Gluten Free Watchdog, LLC?
My hope is that we provide helpful information that folks can use to make informed decisions about the foods they eat. Hopefully, we provide a certain level of confidence in labeled gluten-free foods and a healthy dose of skepticism where it is warranted. Knowledge is power. And testing data is knowledge. We should never be afraid of good data.
Amy Jones is a registered dietitian and celiac disease support group leader in Ohio. She is the chair of the Dietitians in Gluten Intolerance Diseases practice group fro the Academy of Nutrition and Dietetics. She also serves on the dietetic advisory board of Gluten-Free Living.