Tricia Thompson talks with Gluten-Free Living about her organization, Gluten Free Watchdog, LLC, and its role in the community.
Told she could possibly have celiac disease as a teenager, Tricia 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 independent, subscriber-driven gluten-testing organization, Gluten Free Watchdog, LLC (glutenfreewatchdog.org).
Gluten-Free Living asked Thompson about the inspiration behind Gluten Free Watchdog, LLC, how it has changed in the last year, her vision for the future and what she hopes those in the gluten-free community gain from her work.
Gluten-Free Living: 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.
Can you explain the work that Gluten Free Watchdog does?
We do a potpourri of work that at its core relates to gluten-free labeling claims. Gluten Free Watchdog provides consumers with state-of-the-art gluten testing data for foods. We also post public alerts via our social media platforms when a food making a gluten-free claim includes an ingredient not allowed in foods labeled gluten-free (we call this “facial misbranding”). When such mislabeling occurs, we contact the manufacturer and alert the FDA [Food and Drug Administration].
We also encourage the consumers who come across mislabeled products to contact an FDA consumer complaint coordinator. Of late, we have been working to help decrease instances of facial misbranding through our FDA citizen petition and conversations with the FDA on various labeling issues.
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.
How many products have you tested so far? How do you decide what products to test?
We’ve had over 700 products tested at the accredited lab Bia Diagnostics, LLC. 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?
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.
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 (e.g., yeast extract) or category of food (e.g., oats, lentils).
What is the process typically like for getting a product tested?
Products are either ordered from a manufacturer website or online retailers like Vitacost, Amazon, and Wal-Mart 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.
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 (ppm) 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.
What has been the most difficult thing about Gluten Free Watchdog?
It is more a frustration than a difficulty. In addition to having foods tested for gluten, we also review the ingredient lists of foods labeled gluten free. We continue to have issues with facial misbranding, meaning a food is labeled gluten-free yet it contains an ingredient not allowed in foods making a gluten free claim. These ingredients include barley malt, barley malt extract, and soy sauce made from wheat. I spend hours talking with manufacturers about the facial misbranding of their gluten-free foods. 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 does not currently allow wheat-based soy sauce or the ingredients malt, malt extract, malt syrup, and malt vinegar from barley in foods labeled gluten free. Unfortunately, some manufacturers refuse to believe me.
Are the test results you see in Gluten Free Watchdog increasing your confidence in gluten-free labeling?
For the most part, yes. Overall, about 96 percent of the products tested through Gluten Free Watchdog, LLC, test below 20 parts per million (ppm) of gluten. It obviously would be best if this number were 100 percent, but 96 percent is pretty good. And when manufacturers with products that test at/above 20 ppm are open to receiving help, Gluten Free Watchdog, LLC, works with them free of charge.
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. We hope that our petition and our communications with the FDA about facial misbranding will help decrease the number of products consumers come across in the marketplace that are facially misbranded.
How has Gluten Free Watchdog changed in the past few years? Has your mission developed through the years?
While we continue with our original mission–to provide consumers with access to state-of-the-art food testing data–we also take our consumer advocacy role very seriously. Sometimes this means recommending against the use of certain foods or products marketed to the gluten-free consumer. Other times this means speaking out about various issues (e.g., facial misbranding) to hopefully effect change on behalf of the Gluten Free Watchdog community.
What can people look forward to seeing from Gluten Free Watchdog in the next year? We will continue testing foods for gluten and may have a few special projects where we focus on a specific grain or product as we have done previously with spices, hemp, flaxseed, probiotics, and distilled alcohol. This will all depend on what subscribers request, as they are the primary drivers of what is tested. We will continue to work with the FDA to decrease facial misbranding. We hope to do some reporting on the gluten levels in prescription medications (we are waiting for our FOIA request for data from an FDA-funded study on gluten in medications—now 3 years since filing–to come through). And testing of restaurant foods remains high on the radar screen.
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. State-of-the art testing data is knowledge. We should never be afraid of good data.