AMERICA THE GLUTEN FREE FOOD DESERT (CH6)
I took my two celiac kids on a month long trip to Texas which went relatively as far as accessing gluten free foods (including relying on grocery stores). I planned well, renting a car, mostly staying in a places with kitchens, getting most of our food from grocery stores and only using restaurants vetted by my Gluten Dude app. However, there were a few days in which we didn’t have the rental car so we had to access food within walking distance of our hotel. At this point in our journey, we were all old pros at figuring out tricks for accessing certified gluten free food in strange situations. For example, one time when we stayed in downtown Atlanta, we shopped at CVS. They had gluten free TV dinners, yogurt, cheese, meats, fruit, nuts …plenty of things to keep a couple of growing boys full for the night. Lucky for us, downtown Austin had a Target, and we were able to find everything we wanted in the grocery section. We also ate a couple of amazing restaurant meals that were gluten free, including a gluten free fine dining restaurant and some Texas BBQ. While on vacation, we insist on eating only vetted foods abiding to strict requirements for their gluten free processing.
Our night in downtown San Antonio was a completely different experience from Austin. We arrived to San Antonio rather late in the evening. We were between switching cars, and so we didn’t have a rental for the evening. We walked around downtown San Antonio hoping to find something we could eat, but it was insanely crowded. None of the menus looked safe. Because of the crowdedness, we didn’t feel like restaurants would carefully accommodate our needs. There is nothing worse than getting sick on vacation, so we played it safe and began to search for a CVS. Walking around San Antonio in search of a convenience store with gluten free foods proved to be impossible. We found a small mom and pop store that had corn chips, cheese dip, a can of beans and canned fruit (none of them were certified, but they were at least labeled). We went back to the hotel and microwaved “nachos” with what we found. It occurred to me how bad accessibility of gluten free foods actually is even in as crowded of a place as downtown San Antonio. To my surprised we had an extremely limited selection. I had taken for granted how much of a gluten free food desert many places are considering our experience in Austin had been so easy. Our dinner constituted more as a snack than a meal. At the conclusion of our trip, we missed our flight because of a severe accident that blocked out way to the airport. We waited at the airport for hours to see if there was another flight option for us. At the airport, we bought nuts and chips as again, those were our only safe options. By the time we got a hotel room close to the Houston airport, the grocery stores in the area were closed. We shuttled over to the hotel and then walked to the nearest gas station. We were able to find one can of gluten free soup, chips and nacho cheese. That was it. Again upset at the lack of accessibility to gluten free foods, I was frustrated as a person with celiac but even more frustrated as a mom of kids with celiac. With all of the research I did and all of the planning, accessibility to certified gluten free food was still a huge challenge.
As we explored in the last chapter, contamination of gluten free foods is frequent, this was verified by studies like Silvester. Safe foods is a human right, yet those of us with celiac disease have gotten the short end of the stick when it comes to labeling laws and food safety. Let me restate, In a time that we have so many apparent options, we have so little actual security that our food is safe. In my conversation with Lisa, she lamented not knowing that multiple medications contain gluten. In the multiple threads about cross contamination and certified gluten free labeling, we have explored the frustration that even labeled foods are not safe. It’s important to understand the history of labeling gluten in the United States as well as the legacy of bill trying to strengthen our labeling that have failed to pass. Jon Bari wrote an article called “Gluten Should Be Labeled as a Major Allergen in the US, Just like It is In 87 Other Countries” on the Celiac Journey website https://www.celiacjourney.com/post/gluten-must-be-listed-as-a-top-food-allergen-in-the-u-s-just-like-it-is-in-canada-across-europe . In this article, Bari looks at the history of what the celiac community refers to as “watered down FALCPA.” Citing Laura Derr Sim who states, “"Although the FALCPA mandates that wheat be disclosed on food labels, other grains [containing Gluten] toxic to individuals with Celiac Disease (e.g., rye and barley) need not be disclosed in plain English or when present in spices, flavorings, colors, or additives." It is clear to see the problem this has become with the celiac community when diving into the depths of social media threads of people getting glutened by barley and cross contaminated by certified gluten free foods. However, we must look back at the history of FALCPA to get a better understanding of exactly what went wrong for us.
Laura Derr’s article "When food is poison: the history, consequences, and limitations of the Food Allergen Labeling and Consumer Protection Act of 2004" by Laura E. Derr, as published in the Food and Drug Law Journal in 2006 ("When Food is Poison") is the main source of information which Jon Bari uses. I unfortunately have had to rely on Bari’s references of this article as the article is unavailable (and only referenced) on many of the medical servers. In 2002 when FALCPA was first introduced by Senator Ted Kennedy to the US Senate, he stated, "American families deserve to feel confident about the safety of the food on their tables... The Food Allergen Consumer Production Act will require that food ingredient statements on food packages identify in common language when an ingredient, including a flavoring, coloring, or other additive, is itself, or is derived from, one of the eight main food allergens, or from grains containing Gluten." Kennedy and the other supporting legislators intended to protect people with food allergies and celiac disease. The original version of FALCPA included labeling gluten as it recognized that celiac disease is a serious and life threatening disease and that those who have it deserve to have safely labeled foods. As introduced by Senator Kennedy and Senator Clinton, S. 2499 encompassed the following,
The Food Allergen Consumer Protection Act of 2002 would require products to list in bold face type the common name any of the eight major food allergens (milk, egg, fish, crustacea, peanuts, tree nuts and soybean), proteins derived from those substances and other Glutens such as rye, barley, oats, and triticale," according to Inside Health Policy's FDA Week, August 9, 2002 (page 6). (emphasis added) "For purposes of this Act, the term 'known food allergen' means any of the following: A) Milk, Egg, Fish, Crustacea, Tree nuts, Wheat, Peanuts, and Soybeans... C) Other Grains containing Gluten (Rye, Barley, Oats, and Triticale)." (Bari)
It is clear that not only was wheat labeling required in the introduction of S.2499, but also all gluten containing grains (which were listed). Another legislative proposal in 2002 presented by Rep Nita Lowey, “The Food Allergen Consumer Protection Act” included wheat and grains containing gluten including rye, barley, oats and triticale. Derr states in the 2006 essay, When Food is Poison, states:
The drafting and passage of the FALCPA [2002-2004] was accomplished because the atmosphere in America surrounding food labeling has shifted dramatically over the past several decades. This altered culture is due to the convergence of numerous factors, including scientific advances in diagnosing food sensitivities and detecting allergens in foods, increased public awareness about food sensitivities, the mobilization of people with food sensitivities, the prioritization of food allergy issues by FDA, and recognition by industry of the growing market for products to meet special dietary needs. (Derr 94)
The bill was a landmark for those with allergies, despite the food industry harshly opposing any changes in labeling requirements. Instead, they insisted that voluntary labeling would suffice. The heavily debated bill ultimately bent a knee to the food industry lobbyist that insisted on a compromised bill excluding gluten as required labeling. The food industry criticized the inclusion of gluten charging that it is an intolerance and not an allergy.
The new “watered down” bill required that gluten remain voluntarily labeled and the other major allergies mandatorily labeled. The American Celiac Disease Alliance (ACDA) tried to push for labeling of gluten citing a groundbreaking 2003 study released by the University Of Maryland Center for Celiac Research. The ACDA was composed of Celiac Disease leaders of support groups, medical professionals, research institutions, and representatives of gluten free manufacturers trying to push gluten labeling in FALCPA. The grassroots efforts was unfunded supported by word of mouth and the internet (Derr 102). The ACDA became the American Celiac Task Force represented by Lisa Murphy and her son, Colin with statements presented to the House Appropriations Subcommittee on Labor, HHS, and Education (which funds the NIH). Lisa explained how labels were a problem for Celiacs, a question posed by the Subcommittee Chairman Ralph Regula on April 17, 2004.
Despite the all efforts of the Celiac Disease activists and experts, the heavily funded food industry won their argument and a revised bill was introduced which did not required the declaration of gluten, S.741 (Derr 110). The main culprits of squashing the original formation of the bill were the following lobbyists: The American Farm Bureau, The Center for Science and Public Interest, and the American Bakers Association (ABA). The ABA is particularly concerning as their interests encompass 80% of wholesale bakeries in the US and are involved in most (if not all) of grain based food industry operations and activities (Bari). Additionally the celiac community had to wait a decade for the enactment of voluntary FALCPA labeling (Bari). As stated by Der in 2008:
Currently, there is no standard definition of 'Gluten Free' in the United States and studies have found that some products proclaiming themselves 'Gluten Free' may contain Gluten. The FALCPA calls for the Secretary to consult with experts and stakeholders when drafting the rule. (Derr 119.
Defining what classifies under the voluntary labeling is important however, the fact that labeling is voluntary still detrimentally effects the celiac community. Because labeling is not required a culture of treating celiac disease as less serious than an allergy and therefore needing less attention to purity protocols has undoubtedly harmed the celiac community. Additionally, labeling wheat and not gluten is confusing for the people that support those with celiac disease. It is more confusing and mistakes are easier to make as one might erroneously assume that wheat free is also gluten free. Derr expands on this idea stating:
The clear labeling of wheat under the FALCPA, in fact, may have the perverse effect of harming those who must avoid Gluten. A Gluten Free product always is wheat-free, but the reverse is not true. Children or caregivers of children with Celiac Disease may assume incorrectly that a wheat-free product is Gluten Free if they are not familiar with or do not remember the various terms for gluten-containing ingredients (e.g., rye, barley, and malt) besides wheat... It is clear, however, that including Gluten Containing Grains besides wheat in the FALCPA's allergen labeling scheme, expressly requiring FDA to consider Celiac Disease in its ingredient exemption decisions, and requiring the 'Gluten Free' declaration on products without Gluten could have gone significantly further to assist people living with this [Celiac] Disease. (Derr 143-145)
Sadly all of these efforts are for naught and as the FDA issued their final ruling defining “Gluten Free” for food labeling on August 2, 2013 as a voluntary claim that can be used by manufacturers. In response to FALCPA being signed onto law by President George Bush August 2, 2004 and taking effect on Jan 1, 2006 (Public Law NO 108-282) which enacted mandatory labeling of the eight major allergens. It still wasn’t until July 15, 2013 that voluntarily labeling of Gluten Free labeling was implemented. Representative Nina Lowey stated July 15, 2013, "I am frustrated that, a decade since the passage of the Food Allergen Labeling and Consumer Protection Act, the FDA has yet to lay out clear standards for the regulation of Gluten Free labeling." As a result of FALCPA’s watered down law, gluten has been seen as a “second class allergen.” Bari states
As a result of FALCPA, the top 8 Major Food Allergens were required to be labeled on all packaged foods in the U.S. since January 1, 2006. However, as a result of FALCPA, guidelines for the voluntary labeling of Gluten Free products only went into effect as of August 5, 2014. In my opinion, that has lead to all sorts of challenges and limitations including perpetuating a Gluten as a "Second Class Food Allergen", one that is not taken as seriously as other allergens/poisons (the brunt of too many jokes including from Jimmy Kimmel), and in turn the only treatment for Celiac has been subject to an implicit bias by far too many as a fad diet and not a serious disease.
The idea that celiac disease is less severe than an allergy is one of the biggest misconceptions that the celiac community combats. When I explain to new friends the severity of celiac disease, including the time I almost died from cross contamination of my medicine or how it takes several months for me to recover from a full gluten contamination, they are shocked. The most common response I receive is that they had no idea celiac disease is as bad is it is. While celiac disease has a wide variety of symptoms associated with ingesting gluten from the well known gastroenterological symptoms to the neurological symptoms, there are those who are allergic to gluten as well. Hillary Carter’s essay When ‘Safe’ Food Isn’t…Our Applegate Anaphylaxis Story, she discusses her son Grayson’s experience of anaphylactic shock over a product that contained trace gluten but was labeled Gluten Free. Cross contamination of gluten in gluten free foods is a result of industry influenced voluntary labeling, because there are no significant consequences and distinct purity protocols. Mandatory labeling would end this issue, as it would standardize that no traces of gluten are in Gluten Free labeled foods. While celiac does not result in anaphylaxis, ingesting it causes grave illness that can be deadly for those with Celiac disease. Another example of contamination of a gluten free labeled product was addressed by Gluten Dude April 6, 2022 in the article, What Should the Punishment be for Poisoning People with Celiac Disease? https://glutendude.com/punishment-for-poisoning-celiacs/ This essay examines the gross negligence of The Salsa Texan company’s contamination of gluten free certified foods which were third party tested by Gluten-free Watchdog. All tested preformed tested between 57, 449ppm and 74,958ppm when voluntary labeling expects that there should only be 20 or less ppm in the products. This amount of gluten could surely land someone with celiac disease in the hospital. Gluten Dude cites the prompting for testing when a consumer’s celiac daughter became ill after eating the gluten free certified tortillas. When a test confirmed that a sample came back with 63,731ppm of gluten the manufacturers response was to gaslight the celiac community by stating that their products “possibly” contained gluten instead of certainly contained gluten. GFWD alerted the FDA which mandated a recall of the batches in question (August and September 2021). However, in order to confirm whether the manufacturer changed their purity protocols, they purchased items in May and July of 2021. These products tested at 57,449ppm and 74,958ppm thereby proving the ineffectiveness of voluntary labeling practices and unregulated recalls.
Anytime this type of contamination happens with certified gluten free foods, it elicits extremely emotional responses from the celiac community out of the frustration of never knowing for certain of our food is safe to eat. Gluten Dude’s response to The Salsa Texan was no exception. He stated
Our labeling laws in the U.S. are so pathetically weak and almost always protect the company over the consumer. So we the consumer have to establish our own form of punishment. And that is simply spread the word about these folks and DO NOT BUY ANY MORE OF THEIR PRODUCTS. Money talks…dangerous companies walk. And if you want to hit them up on their Facebook page, have at it but it seems they’ve been deleting comments/reviews. Shocker I know.
Sadly, gluten is prominent the US food system including gluten free certified foods. Food products are not the only ingested sources of contamination. Medications often taken daily for chronic conditions can contaminate those with celiac disease. I almost died from contamination of my thyroid medicine, but I am not alone in my experience. The question was posted on the Facebook page “Gluten Free & Healthy Recipes, Tips and Tricks” on March 27, 2024 stating, “I have been strictly gluten free for 15 years, but just had a biopsy indicating active celiac disease. What products labeled gf do you still struggle with? (J C-M)” The responses are as follows:
KM Prescription medications have gotten me before
J C-M responded, “This is my concern, I am going to the pharmacy today to go over everything.”
NB: yup same. The thyroid medicine I was taking for 12 years had both dairy and gluten. Think the doctors might have said something. I wasn’t switched until I did my own research and brought it to their attention.
KM: Yeah I take Tirosint. Almost every manufacturer of generic levothyroxine contains gluten.
Immediately one will notice that many people in the celiac community have gotten sick from contaminated medications. Scrolling through threads like these is eye opening for anyone who is not familiar with how taxing and dangerous the lack of labeling of medications is for those with celiac disease. Looking further into this thread reveals even more complications with assuring safety with medications for Celiacs.
MN: good luck. They don’t know much to begin with, best to call the manufacturer listed on your bottle; they will tell you right away if your medication has gluten in it. You will be surprised how many do.
KM: I’ve never found a helpful pharmacy. You have to call the manufacturer of every prescription you take and ask them about their product. There are some lists online as well, but you never know when they might change an ingredient.
RC: even when you call, they won’t tell you 100% for sure if there is gluten. It is so aggravating.
THK: yes doctors don’t have a clue about gluten in drugs. I have them write gf only on the script and the pharmacy figures it out. You have to watch after them as well and educate.
JK: the pharmacy is no help at all. I just picked up a 3 month supply of one of my meds. I reiterated with them to make sure they know that I can’t have wheat, rye, or barley gluten. They insisted that my chart is labeled and they will not fill them wrong as had the last time I picked up a 3 month supply. And took it for 2 weeks, wondering why I was getting sick. They gave me the same brand that had wheat & made me sick. I’m getting so tired of trying to get & keep myself safe.
This thread reveals how little knowledge and reliability is present in the medical community in reference to gluten free medications. Doctors are completely uninformed as to whether or not the medications they are prescribing contain gluten. Pharmacists cannot guarantee that medications are gluten free and often give patients false information that results in gluten contamination. The thread continues…
JM: get all of your information yourself. I use google and call the companies myself now, before it goes in my mouth.
HMF: Sodium starch glycolate is used as a disintegrate in tablets and can be sourced from wheat starch. I avoid any meds (OTC OR Rx) with SSG listed. Most generic brands of acetaminophen (Tylenol) contain SSG.
GB: I just got off the phone with my pharmacist and he said the ssg is sodium starch glucolite and is typically a potato starch durative. If it has wheat in it, it would be flagged as an allergen.
KM: he’s not really accurate in that it would be labeled as an allergen. Prescription drugs are not required to do so like food is.
AB: I take levo(thyroxine) made by amNeal and I’ve been struggling with a major autoimmune flare up and we can’t seem to figure out why. I’ve called amneal, poison control, the amneal website and I can’t find a list of ingredients anywhere. Outside a google search, are there any resources you use to dig up this information? I may be microdosing poison (I’m celiac) and not knowing it instead of being watched for RA or Lupus – it could be as simple as switching my meds for my thyroid. Thanks for shining a light on this for our community.
HMF: I work in pharma and have Celiac. For any name brand drugs, its best to reach out to the manufacturer directly to inquire about gluten. Similarly for any generics, you can reach out to the manufacturer – just not sure how much luck you will have getting a clear answer…
LL: yes! I had a health crisis last year and got put on a dozen different oral meds. I STILL don’t know what fillers are in all of them.
DS: This. Prescriptions can contain gluten. I can’t do the typical colonoscopy prep because of gluten ad artificial sweeteners. Some GERD medications contain gluten. Tylenol, Advil, and so many other OTC meds. Also, not all toothpastes are GF. I know some people don’t care, but I even make sure my lotions and other toiletries are GF because skin is the largest organ.
For those in the celiac community, even reaching out to the manufacturer does not guarantee that their medications are safe to consume. This thread displays the impact unreliable and unregulated labeling of prescription drugs has on the celiac community. Not only are many people with celiac disease getting sick from gluten contamination of their medications as cited above, but information from doctors and pharmacists is unreliable. People with celiac disease navigate the safety of their medications on their own but calling manufacturers and finding information in online community threads. Even when they are able to get information form the manufacturer (which can be extremely difficult), they are not protected from changes the drug company makes in their formula. Furthermore Bari expresses frustration in regards to the lack of labeling of medication:
The FALCPA does not extend to prescription drugs making it nearly impossible to determine the presence of Gluten in prescription medicine. Nonetheless, the FALCPA's unequal treatment has also left those with hypersensitivities to Gluten vulnerable with undermining their right to know whether Gluten is in various prescription medicines prescribed for a plurality of incremental health reasons that those living with Celiac may also be experiencing…This leads to anxiety of not knowing whether or not medication is doing more harm than good. In my opinion, if we had equal treatment under FALCPA for food that is required everyday, then the Celiac community would have a better chance of getting medicines also labeled. In other words, how can we expect to get medicine labeled, which is something many Celiacs ingest occasionally, if we cannot require food labeled for Gluten which is ingested multiple times daily to survive?
It is at best frustrating and at worst potentially fatal for those in the celiac community to never know with certainty that their food and medications are gluten free. In 2021, the Food Labeling Modernization Act of 2021 as introduced (FLMA). Thus bill proposes that manufacturers would be required to identify any gluten containing grains (wheat, barley, rye) used to produce every ingredient on a product’s ingredient list including but not limited to flavors, extracts and other ingredients derived from gluten. FLMA would eliminate the “hidden” gluten in ingredients which is one of the main culprits of cross contamination for those with celiac disease. https://gluten.org/2021/08/05/the-important-bill-that-changes-gluten-free-food-labels/ While this bill would be a big step in the right direction, it would only apply to gluten free certified foods meeting GFCO (Gluten-Free Certification Organization) standards. The FLMA would reinforce the law for labeling GFCO but it is only one step toward purity protocols and does not address the labeling of all food as it still falls under the voluntary requirements. The problem is easily described on the gluten.org webpage which stated,
The bill only addresses retail packaged goods meaning the finished product you’ll find on store shelves but does not address potential gluten sources along the food supply chain. The responsibility is with the manufacturer to not only be honest about the ingredients and state them on the food label but also to know and understand where other sources of gluten may be present – such as from one of their suppliers.
Additionally, to date the bill has been submitted and not passed. Every month that Celiacs are not guaranteed safe purity protocols and standardized labeling is a determent to the health of individuals in the community. In the essay Back to the Future with FDA's 1985 Final Rule - Labeling Gluten Ingredients is More "Desirable" Than "Gluten Free" Labeling & Gluten Ingredients Must Be Declared on Food Labels https://www.celiacjourney.com/post/fda-final-rule-found-that-labeling-gluten-ingredients-is-more-desirable-than-gluten-free-labelin Bari once again looks at the labeling laws in the United States. Bari references Ronald Reagans presidency in which the FDA ruled that gluten was GRAS (generally recognized as safe) in Docket No: 82N-0259. The FDA issued “supplementary information” stating that gluten ingredients labeling is more desirable than gluten free labeling and that gluten must be declared on all food labels. Despite grassroots initiatives such as Jax Bari’s FDA citizen’s petition, the FDA has never enforced the labeling of gluten. Baris states,
That was 40 years ago, but to this date, the FDA has never enforced this, and the labeling of Barley, Rye and Oats remains voluntary in the US. As recently at April 2023, the Center for Science in the Public Interest stated that Gluten containing grains "are currently not clearly labeled on most foods and beverages." This has endangered Celiacs with every bite, every day for the past 40 years!
While activists in the celiac community continue to pressure lawmakers and manufacturers, change moves slowly. The FLMA has yet to be passed and some manufacturers skirt around purity protocols even when they are labeled as gluten free as is the case with Cheerios which does batch testing to create a history of purity that might not apply to each box consumed by someone with celiac disease.
Another piece of legislation that is currently being presented is the Adina act (HR 4263/S2074). This act deals with the presence of gluten in medications. Kendra who uses her gluten sniffing dog, Suki, to detect gluten in foods and medications and reports them on her Instagram page @sukipwd. She has multiple reels saved under her favorites on her Instagram page about gluten contamination of medication. One reel from November 23, 2024, she shows the statistic that 93% of meds (in the US) have a food allergen and we have no idea. This is life or death for people. She further states:
This is what sucks about having celiac disease. I went to the doctor to have some medicine prescribed to me because I had not been feeling well. Three meds (footage of dog checking the medications). One was fine, two had gluten in them. I went back to the pharmacy…(footage of her interacting with the pharmacist with the following interaction…)
K: I have a gluten detection dog, I have celiac disease and she checked them and she alerted both of them have gluten in them.
Pharmacist: Yeah, we do not guarantee our medicine have gluten or don’t have gluten in them. There is nowhere for us to check.
K: I need the medicine though so how can I get the medicine and get the medicine that…
Pharmacist: You can do your own research to see the manufacturer which have gluten. We do not guarantee I’ll drop pass which do not has gluten.
K: (footage back in her car on the verge of crying): So now I have to go home take those two meds, look them up in the computer, research. I’ll have to call a company too and as what kind of ingredients and what their process is and then I have to go back to the doctor, have them rewrite the prescriptions and send them to the pharmacy. Then, again they still might have gluten, I don’t know. Then I have to go back to Walgreens and my insurance probably won’t pay for them anymore so I’ll probably have to pay out of pocket. We need to pass the Adina Act. If you haven’t called your representative, your congressmen, we need the Adina Act passed because this kind of stuff is wrong.
The desperation felt by the celiac community in regards to the accurate labeling of medication cannot be understated. When I asked my questionnaire participants the following question, the majority of respondents had not been told to watch out for gluten in medications. Here are the results I gathered:
Do you feel like you were sufficiently or insufficiently informed about cross contamination in medications? Discuss.
He’s not on any meds (1K-H)
Sufficiently, found info myself, (2M-A)
It wasn’t something that was explained with the exception of the list of ingredients to avoid from the nutritionists. Thankfully, I only take one oral medication in addition to insulin delivered via pump. (3K-C)
I wasn’t even aware until very recently you could be cross contaminated in medications. (4-LJ)
I was never told that this could be a problem. I was cross contaminated by a medication (5M-S)
While there are measures to regulate gluten in prescription mediations, none of them have passed to date. The Adina Act is the current bill that is awaiting its fate. This piece of legislation is named after a girl, Adina, who became ill when she took an antibiotic that contained gluten. In an Instagram post on her page @the_adina_act_effort from November 7, 2024, shares a video account from her YouTube of the day Adina was contaminated by gluten and rushed to the hospital. The YouTube and Instagram Video are called “Let’s Label Medicine: Support The Adina Act, H.R. 4263/S.2074” and is a reenactment of the day that medicine made Adina sick. Here is a full description with dialogue from the video. I believe it is important to fully present this video in order for people outside the celiac community to properly understand the severity and impact of gluten in medication for those with celiac disease.
The video begins with citing the Adina act. Her mother states as a video of an ambulance traveling down a country road is shown with the sound of sirens then a visual of flashing emergency vehicle lights, I will never forget the panic of that 2am call. Things escalated quickly. Her heartrate dropped to 70 over 40. The hospital I begged her to go to was about an hour away. The visuals switch to mountain scenes and Adina states, And before I knew it, I was sitting of the front porch of my cabin… The video then shows Adina laying ill on a bench in the woods…hot saliva rushing into my mouth, my heart racing and convinced my stomach was going to crawl right out of my body. As the video shows a woman taking a pill bottle out of a box and then a photo of Adina in a hospital bed, What should have been a simple treatment with amoxicillin ended up being the scariest day of my life. The video then shows Adina speaking at a pulpit stating, Hi my name is Adina Togal and I have celiac disease, eosinophilic esophagitis and a dairy allergy. In the summer of 2022, I was at sleepaway camp, one of my favorite places (video cuts to a photo of Adina rock climbing at camp). She continues, With strep throat making its way through camp, it didn’t take long until I had it too. The camp staff took immediate action to ask my parents if the amoxicillin thy had on hand would be safe for me (Adina at the Courage at Congress pulpit again and then to a family photo). She continues, My parents who aren’t pharmacists, doctors, or anything like that, made the difficult decision to let camp treat my strep throat with the antibiotic they had on hand. The video then shows Adinas mother, Jennifer Togel speaking at the pulpit stating, We were lucky but this unfortunately wasn’t the case for a 14 year old girl in California named Denise who tragically died in 2019 from an allergic reaction to dairy found in prescription toothpaste (Video of toothpaste). The video then shows Adina’s father Seth Togal stating Finding a safe medication shouldn’t be this hard. You shouldn’t have to gamble your life on an over the counter cold medicine, a vaccine or a rescue asthma inhaler. Adina’s mother continues, The day our request for more information was rejected by the drug company, we set out on a mission to make this easier and less stressful for families just like ours. Adina’s father states The Adina act is an effort to change federal law… (clip of Adina’s family with politicians and in front of the capital building in DC), and to hold the drug companies responsible for clearly labeling the products, to say that they directly or indirectly contain gluten, gluten containing ingredients, or any of the major food allergens. (Video of Adina’s father and then to lobbyists working in DC. Adina states, We need you to keep writing, calling and requesting meetings with your representatives and senators. Share your story, your kids’ stories, or your friends’ stories.. (clips of meetings with congressmen)…so they know why labeling gluten and medications is just as important as labielng it in food. Adina’s mom states, No one else should have to helplessly watch their child suffer because of something that is so preventable or live with the resolute trauma caused by that. https://duckduckgo.com/?q=called+Let%27s+Label+Medicine%3A+Support+The+Adina+Act%2C+H.R.+4263%2FS.2074+youtube&atb=v257-1&t=chromentp&ia=videos&iax=videos&iai=https%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DKzriqKtfQ2U
This reenactment and advocacy video shows the urgency amongst the celiac community for appropriate labeling of gluten and allergens in prescription medication. It is pertinent to note that the pharmaceutical company that got Adina sick from contamination of gluten would not respond to their requests in order to ensure the safety of patients needing to use their medication. As Kendra and Adina’s mother both state, this is a life or death situation for those with celiac disease. Self advocacy does not work well enough, research does not work well enough and current policies do not work at all. We must all recognize that gluten contamination of medications and food products occurs frequently and is extremely detrimental to the health of individuals in the community.
In addition to the lack of protection of those in the celiac community with verifiable gluten free foods and medications, foods advertised as gluten free are overpriced compared to their gluten containing components. I asked my questionnaire participants whether or not they were effected by the cost of gluten free foods. Their responses were as follows:
Did you find that shopping for gluten free items at the store came at an increased cost or a decreased cost or stayed the same? Please expand on this more.
Way more expensive. We get most stuff from Amazon based on reviews. The stores don't seem to be very high quality. (1K-H)
Most items were roughly 2-4 dollars more than the regular counterpart. Money spend on food has doubled with half as much food brought home. (2M-A)
Certainly an increased cost. It’s still like that today. It’s much more expensive to purchase specialty items for any medically necessary diet. (3K-C)
DEFINITELY more expensive. It was criminal. You could get a bag of Lay’s potato chips which are totally gluten free for half the price the ones labeled “gluten free.” I blame the gluten free fad and extortion from the companies for making products that are just as cheap to make as the glutenous foods but charging out the ass for them. (4-LJ)
Increased prices for specialty foods. At least 3x as much I would say. We stick to cheap and naturally GF with just a few specialty products. (5M-S)
All of my participants cited spending extra money on gluten free specialty foods. Additionally in my interview with Lauren, she stated that at first spent extra money at a restaurant which was the only place she felt safe eating and then that her family member tried to help her with the cost of gluten free foods since they are so much more expensive. Laruen states in her interview
So honestly I spent way too much money and just ate literally Taziki’s almost every single day. Sometimes twice a day. It was like a safe space for me there. I had never gotten sick. When I was trying to figure out what was going on with me, um I just… Um, so I kept eating out which I spent hundreds of dollars while I was doing the research and stuff. And my family would try to help us out because they know, gluten processed foods are expensive and stuff so… I think what we all tried to do is replace everything that I was previously eating with gluten free stuff and I still got sick
Lauren’s experience progressed from not knowing what to eat other than at the one restaurant that didn’t make her sick as she began to navigate through the confusion of reading labels and understanding gluten free foods to trying gluten free specialty foods and still getting sick. Not only did she spend more than what her budget allowed for, citing family members helping financially, but she didn’t even prove to effectively find celiac safe foods. An article published by MDPI called, Persistent Economic Burden of the Gluten Free Diet, chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://celiacdiseasecenter.columbia.edu/wp-content/uploads/2019/07/2019-Persistent-Economic-Burden-of-the-Gluten-Free-Diet.pdf written by Anne Lee at all from the Columbia University medical Center’s Celiac Disease research Center, examines the high cost of gluten free food. The study concluded that gluten free foods present a high financial burden on those that are required to follow a strict gluten free diet concluding,
The cost GF products, while declining over the past 10 years, remains significantly higher than their wheat-based counterparts. The introduction of mass-market production of GF products has impacted both the cost and availability by venue. While the shift in availability by venue, with increased availability of GF products in the traditional grocery store, is a positive development in the marketplace, it is insufficient to offset the overall economic burden of the GFD. The entrance of mass-market brands into the production of GF products fosters a perception that the GFD has increased availability and ease. However, our findings indicate that cost and availability continue to be a burden for individuals requiring GF products. (Lee 7)
The financial burden for those with celiac disease is even more daunting when the fact that those in the celiac community are not guaranteed purity of safety of the products. Such a high cost with no reliability is devastating for those with celiac disease. I cannot overstate that the perception of choices is marketed to consumers, yet the safe options are not assuredly existent. In addition to the financial burden that the celiac community carries for everything from having to purchase medications not covered by insurance, specialty foods and extra doctors visits when individuals become sick from something that should be gluten free, celiac disease is the least funded autoimmune disease in the United States.
The NIH is the primary agency funding scientific disease research in the United States which is the cornerstone of medical progress. Gastrojournal.org published an article in regards to the disparity of funding for Celiac disease in an essay entitled, Disparities Among Gastrointestinal Disorders in Research Funding From the National Institutes of Health. chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://www.gastrojournal.org/article/S0016-5085(17)36084-5/pdf The essay looks at the NIH funding which is explained as stable over a five year period. The results were as follows:
Crohn’s disease was consistently awarded the highest amount of money, at approximately $16 million per year. Crohn’s disease was followed by Barrett’s esophagus at approximately $13 million per year, NAFLD at approximately $7 million per year, IBS at approximately $5 million per year, and EoE at approximately $4 million per year. Celiac disease consistently received the lowest amount of NIH funding over the 5-year period, at approximately $3 million per year…There was no association between funding and estimated disease prevalence in the United States (Figure 2). EoE had the lowest prevalence at 0.04%, and received the second lowest amount of NIH funding over the 5-year period at $18.9 million.4,5 Crohn’s disease, with the second lowest prevalence of approximately 0.25%, received the highest amount of funding from 2011 to 2015 at $77.5 million.6,7 Barrett’s esophagus, with a prevalence of approximately 1%, received $64.1 million over the 5-year period.8 Celiac disease, with prevalence very similar to that of Barrett’s Esophagus at approximately 1%, received significantly less funding over the 5-year period at $15.4 million—the lowest amount of all the diseases studied.9,10 IBS occurs in approximately 12.5% of the population and received a total of $24.6 million in NIH funding.11 N (P2)
This essay introduces the gross lack of funding for celiac disease which has a higher prevalence than the diseases awarded significantly more funding. The study also recognizes that Crohn’s disease currently has successful and readily available treatment options such as medications whereas Celiac Disease has no available treatment options beyond adhering to the (clearly impossibly) strict and uncontaminated gluten free diet. The study further examined the mortality rate of underfunded celiac disease versus the heavily funded diseases like IBS. The essay states,
Studies have shown that diseases such as IBS and NAFLD are not associated with increased mortality, whereas celiac disease has a reported mortality rate of approximately 1.3; however, both IBS and NAFLD still received significantly more NIH funding than celiac disease.16 In conclusion, NIH funding of GI diseases is not proportional to disease prevalence or mortality. These data further suggest that a few diseases, including IBS and celiac disease, are underfunded in comparison with other diseases, especially when the prevalence, burden, and available treatment options are considered. Plausible reasons for this disparity include varying numbers of established research programs to recruit young investigators, fewer grants submitted because of a lack of investigators in the field owing to poor funding, and narrow expertise of peer reviewers on NIH review committees. In contrast with disorders with low funding levels, ample public and private funding of Crohn’s disease allows for excellent research, which in turn, favors more awards of research funding. This may seem circuitous; however, funding of Crohn’s disease research provides an example of the way in which success breeds success. Ultimately, the data presented herein argue that intervention is necessary to improve the existent disparities in disease funding. National authorities should take notice and address this inequity to improve progress across all GI diseases to improve quality of life for patients and their families.(p3)
As stated, intervention is necessary to ensure the health and safety of those with Celiac disease. The fact that those in the Celiac community do not have guaranteed access to safe foods and medications due to the laxity of purity requirements and does not have the support of adequate national scientific and medical research is perhaps the perfect storm of tragedies. Marilyn Geller, the CEO of the Celiac Disease Foundation appropriately articulated the problem in her address to congress in 2019. She stated
If I leave you with one message today, it is that celiac disease is, in fact, a serious autoimmune disease that is not being taken seriously enough by our government.
Celiac disease is one of the world’s most common genetic autoimmune diseases. Approximately 40% of us carry the genetic marker and about 1% of us actually develop celiac disease. Yet, this is nearly double the number of people with Crohn’s disease and ulcerative colitis combined, and nearly triple the number of those with Type 1 Diabetes.
And, regrettably, researchers are finding that the disease prevalence is doubling approximately every 15 years, making it a public health epidemic.
It is estimated that only 20% of the 3 million Americans with celiac disease have been correctly diagnosed. The other 2.4 million continue to suffer and have no idea why. In celiac disease patients, gluten, a protein found in wheat, barley and rye, triggers an immune response leading the body to attack the small intestine.
This intestinal damage causes more than 200 debilitating symptoms. Moreover, gluten ingestion for people with celiac disease causes permanent immunological scarring, doubles the risk of heart disease, and acts as a carcinogen, quadrupling the risk of small intestinal cancers.
My son Henry is why I am sitting before you today. Henry was ill from birth and was suffering for reasons the best specialists in Los Angeles could not determine. He suffered from unbearable pain, can’t get out of bed fatigue, endless stomachaches, headaches, medications, medical procedures, and at the lowest point, in middle school, would say to me, “Mommy my brain is telling me to kill myself again, and I don’t want to, please help me.” It was a fifteen-year ordeal until a doctor finally ordered a blood test for celiac disease. From that point on, it’s been personal for me.
Strict adherence to a gluten-free diet is the only available treatment. But, as our celiac disease researchers agree, “There is no such thing as a gluten-FREE diet” because of the constant risk of cross-contact with gluten, and gluten is in 80% of our foodstuffs… And, in our medications – an issue that Ranking Member Cole and Congressman Tim Ryan are working with us to combat…I traveled here today because we need celiac disease to be recognized as an important threat to the health of our citizens by the US government, including and especially by the NIH, the FDA, the CDC, and CMS. Celiac disease research receives virtually no investment from the private sector, and little to no resources from NIH, especially when compared to diseases with similar impact. https://celiac.org/april-2019-congressional-testimony-by-ceo-marilyn-g-geller
Geller appropriately highlights the problem that those with celiac disease face between searching for gluten free food that is actually gluten free, to not having access to appropriate labeling of medications, to the lack of funding for the disease. The watered down laws and the treatment of celiac as a second-class trivial disease fuels the dumpster fire of issues for the celiac community. In fact, we can look at the lack of access to safe foods in the United States as a human rights violation. The essay Human Right to Celiac Food Safety on Bari’s Celiac Journey website discusses safe food as a human right and gluten free foods for Celiacs as a human right. Bari examines how The Universal Declaration of Human Rights links health and well-being with adequate food stating:
For Celiac patients and their caretakers who medically require a lifelong special dietary need, the issue of food being cross contaminated with Gluten contributes to a constant situation of food and nutritional insecurity. The Celiac condition exposes individuals with this auto-immune disease to permanent food and nutritional insecurity, which can cause loss of quality of life, socialization, and health of the individual, both in the short and long term. In addition to the constant threat of cross contact with Gluten, food insecurity for Celiacs is caused because 80% of foods have Gluten in them and the high price of Gluten Free foods. In the U.S., food insecurity for Celiacs is exacerbated because Gluten is not required to be labeled as a major food allergen on all food products like it is in 62 countries around the world including across Europe and in Canada.
The lack of safe food in the United States as Bari suggests directly opposes the United Nations Office for Human Right’s statement which in the 1966 International Covenant on Economic, Social and Cultural Rights demands, Human rights are interdependent, indivisible and interrelated. This means that violating the right to [adequate] food may impair the enjoyment of other human rights, such as the right to health, education or life, and vice versa. Therefore, the lack of safe and purity controlled gluten free food is in fact a violation of this international human rights agreement. Furthermore, food insecurity for those with celiac disease increases due to the high cost of (assumedly) gluten free foods. The essay written by Juliana Nadal at the Department of Nutrition at the University of Parana in Brazil entitled The principle of human right to adequate food and Celiac Disease: Advancements and Challenges addresses the occurrence of food insecurity in the celiac community. She states,
By understanding food as a basic human right, it is less complex to understand the fact that the absence of foods that address this particular need, such as that of Celiac individuals, represents a concrete case that this group of people are having, constantly, their rights – to adequate nutrition – violated and, in turn, they are in a state of food and nutrition insecurity. (Demetra; 2013; 8(3); 411-423),
This same conclusion as echoed in the article “Going Gluten Free as a Human Rights Issue” (Journal of Gluten Sensitivity, Summer 2016 Issue, July 11, 2016),, by Yvonne Vissing Ph.D. and Christopher Moore-Vissing. https://www.celiac.com/articles.html/going-gluten-free-as-a-human-rights-issue-r3798/ They appropriately conclude the following:
“When you’ve got Celiac Disease and people aren’t attentive to making sure you can eat gluten-free foods that are safely prepared and not contaminated, you can end up very sick in the short-run. The short-term effects may include symptoms such as gastrointestinal upset, migraines, fuzzy brain, sweats, and general malaise. As a fundamental right, what one eats should ensure people’s access to a healthy, dignified and full life. People who have been “glutened” do not feel dignified as they writhe in pain, wrestle with fears of embarrassment, or modify their lifestyle and social schedules to accommodate the illness.”
Bari further emphasizes:
Because Celiac Disease can be considered the most common food intolerance in the world, it is one that both individuals and social structures need to address as a mainstream issue. From how laws and consumer protections are designed at the macro level, to how food is made available and prepared at the micro level, rights of people with Celiac Disease hang in limbo. Some places and people are very attentive to their rights protections while others are not. Nadal contextualizes food and nutrition insecurity that afflicts individuals with Celiac Disease with specific regard to the principle of the Human Right to Adequate Food (HRAF).
As those with celiac disease rely on calling manufacturers, alerting third party purity testing to contaminated products and the hopes of regulatory changes, they continue to get sick every day. As I conclude this examination of the American gluten free food desert, I think of all of the times that I have become ill from gluten free labeled food. I recall the time I almost died from contamination of my medication. I spent two weeks in the hospital having wasted away to skin and bones, losing all of my muscle mass. I almost left my children without a mother and my mission in life incomplete. It’s an unnecessary tragedy that those of us in the celiac community have no assurance of safe food and medications in the United States.