LESS THAN A CRUMB: CROSS CONTAMINATION OF GLUTEN FREE FOODS (CH5)

It was Christmastime 2011 and we were finally taking the kids to Disney for one day only on our way to visit my family in South Florida. At the time, Disney was not offering gluten free options (I haven’t been back since but my understanding is that they are excellent now for gluten free options), so just as with every other restaurant, I did the best I could. The day went by quickly. We had omelets for breakfast and burgers without buns and fries that were from a dedicated fryer. For dinner, we had nachos. All items should have been ok, except they were cross contaminated. I felt ok enough at the park as we meandered our way from attraction to attraction. However, the next day I could tell that I had been a contaminated. We had to stop multiple times so I could use the bathroom. My stomach was angry from the slight amount of gluten I ingested the day before. Even though I had been living with celiac disease for six year, I still did not understand the gravity of being cross contaminated. No doctor explained how bad it could be. In fact, most doctors just tell people to “eat gluten free and you will be fine.” I had gotten over the biggest hurdles of healing by eating a strict diet for about four years. Finally, as I had been feeling better and could even once again enjoy cheese, I was eating out more and more. I assumed that not that I was healed, that I could have more freedom in the “real world” of restaurants. This was an especially long trip, lasting almost two weeks. We drive from Georgia to South Florida and spent time on the way there and back enjoying family and friends. We ate out probably every other day and I kept getting “just a little” sick from contamination. My family unfortunately was not careful about crumbs, the cooking environment, or their cooking so I basically was sick the entire time. I was not violently ill as I get when I get fully glutened, but I was sick over and over again. By the end of the trip, I was getting violently ill and having a hard time. I figured that I would be ok now that the trip had passed and I could be back in my routine of cooking at home.

After this Florida trip, my health declined. The feeling of sickness would fall over me like a toppling weight. The feeling of sickness, similar to coming down with the flu would fill my body. It only took about fifteen minutes from the start of this feeling for it to run in full force throughout my body. I would go from sitting on the couch watching tv to not wanting to even walk down the hall to get into my bed. Everything hurt. Brain could always see it in my face when the feeling would start. He would look at me and say “oh no, you are sick.” Indeed I was sick. Over the course of several weeks, I spent a lot of time in bed, trying to feel better. I saved all of my energy for work. I taught Zumba classes, primarily to senior citizens, so not too much exertion. I would teach then sleep then teach again. I felt like I was just going through the motions of life until I could sleep again. I put on a smile for my kids and did the best I could to be a sick working mom for my four sons.

During class, I noticed that I would miss my steps and slightly fumble. It was odd and confusing as I ha been teaching the choreography for so long that my foot patterning was on autopilot. I had never experienced this before, but describing this to anyone was met with an eye roll and statement indicating the persons lack of ability to do any choreography at all. Stepping out of my house one day, I fumbled again. The next night at a Frida Kahlo art exhibit, I held tightly to the stair railing feeling as if I would fall at any minute. I made my way slowly down the stairs carefully placing each foot and waiting to see if it would hold me before I took my next step down. I didn’t understand why my legs weren’t working but I put on a smile and did the best I could to act normal. Looking at Frida’s art and her in bed, I felt a kinship. I was spending so much time in bed at this point, but my artistic soul flew over me. I painted and opened an art studio and taught. I was doing the best I could and also doing my best to ignore my strange symptoms.

One night sitting at dinner, I took a sip of water. I felt an odd sensation in my throat and before I knew it, I was choking. It was as if my throat lost its ability to know how to swallow. About a week later, I was having lunch with my friend Dave. We got Pho. I began to choke again. I explained to him what was going on with me. I also was riddled with other neurological symptoms like short-term memory loss and fumbling my words. Sometimes I would repeat the same word in a sentence, like a stutter. As we had lunch, I looked at Dave and said, “There is something wrong with my brain and its getting scary. I’m not sure what’s going on. That was the first time that I had said that aloud. That was the first time that I admitted to myself that something severe was wrong with me. The symptoms continued and it got very scary. I was choking all of the time. My arms and legs would go numb. My ears were ringing all the time. I had a headache all the time. In a nut shell, I was sick all of the time. One night as I made my way to the bed, Brian looked at me and said, “I’m so sad because you have become a shell of yourself.” That was my final wake up call. I got a referral to a neurologist. I actually had to see two neurologists because the first one blew me off without even preforming any tests. The second one, however, determined that I had peripheral neuropathy and an impaired gait. She tested me for MS, because my symptoms pointed in that direction. However, after reviewing all of my tests, the neurologist determined that I had a severe vitamin B12 deficiency and gluten ataxia. We determined that in all likelihood, the trip to Florida was at the root of my neurological issues. Getting contaminated with gluten “just a little bit” was enough to send me into a downward spiral. The doctor warned me of the dangers of gluten ataxia and of vitamin B12 deficiencies as they can cause lasting and irreparable neurological damage. She gave me a protocol of high dosage liquid B12 to take any time I felt I had been contaminated to prevent B12 deficiency. Eventually, I got better but it took about a year.

I was much more careful about cross contamination after that, yet it still happened all of the time. I ate out a lot less. Our household became 100% gluten free. I even changed the dogfood to gluten free formulas. I did everything in my power to keep from being cross contaminated. Yet, contamination seemed to be impossible. I still got sick all of the time and I still get sick all of the time. In 2015, after opening my mobile vintage store in Memphis, having been sick the entire time I worked on renovating the Airstream, I got extremely ill from contamination. I had no idea what caused it as I was so careful. I rushed to the bathroom in the middle of a huge vintage expo with multiple vendors. In the bathroom, I kept passing out as I broke into cold sweats. I tested Brian that I was sick and we needed to go. He closed up the store and came to retrieve me in the bathroom. I was mortified that people were waiting outside but also terrified that I would not be able to make it to my car without having diarrhea again. We made it the sort drive home and I spent the rest of the evening in the bathroom. I was again getting sick all of the time.

Over the next few months, my health rapidly declined and I noticed many of the same symptoms I had experienced in the months after the Florida trip. I had choking and swallowing problems again. I woke up at night choking on my own spit. I went for a walk with a friend of mine and stumbled over my words. I remember him looking at me accusingly thinking I was drunk as I searched for words that came out as a slurry soup. This friend became an ex friend as he outright accused me of being an addict of some sort and being “messed up.” I was baffled by the lack of empathy and understanding and afraid at the direction that my health was taking. By the summertime, I was rushing for answers, having lost about 20 pounds. Even Brian accused me of being anorexic despite seeing how sick I was. Ultimately, I ended up in the hospital. An endoscopy confirmed that I was ingesting enough gluten to have damaged villi. I was baffled. Because I was so sick, I never ate out. I only ate rice, chicken and veggies. I searched the internet to see what in my diet was to blame for contaminating me. Finally, I found it. Scrolling through threads on celiac websites was a press release by the manufacturer of my thyroid medication. Several people in the celiac community who take supplementary thyroid hormones for hypothyroidism had fallen sick from cross contamination and narrowed it down to their medication. The drug company tested their batches and found that there was gluten in the filler (which they had changed from sugar to cut costs) and the red dye that created the pink color for the pills of my specific dosage. I was poisoning myself with my own medications….for months. The consequences on my health was life altering during the time. Not only did my ill health affect my ability to work and function but it affected my relationships. I lost friends and family members who could not comprehend what happened to me and instead basked in rumors and lies of their own imaginations. Accusations ranged from eating disorder, to attention whore, to an addict and any and everything else one could think of. I was flabbergasted the day my aunt asked me if I was HIV positive and suffering from AIDS related wasting syndrome. The severity of cross contamination with celiac disease was so wildly misunderstood that many were unable to accept that as an answer for what happened to me. Fortunately, I had other friends and family members that empathized and went out of their ways to help me during that terrifying time.

The difficulty of remaining gluten free in a world that is cross contaminated cannot be understated. It is only about maintaining a gluten free diet but also vetting each and every gluten free product and medication that one consumes. Even then, eating gluten free and taking gluten free medications when it comes down to it is impossible in the United States. A study published in 2020 by a group of researchers called, Exposure Sources, amount and time course of gluten ingestion and excretion in patients with coeliac disease on a gluten free diet concluded, “Gluten exposure on a GFD (gluten free diet) is common,” and “…a GFD is difficult to attain…” (Silvester et al) https://onlinelibrary.wiley.com/doi/10.1111/apt.16075 .

The essay by Van Waffle written for the Celiac Foundation called, Gluten Impossible to Avoid for Most People, Study Shows summarized the findings. This ten day study in which patients provided samples of what they ate, a detailed food diary, stool samples and urine samples found that ¾ of the participants who suspected gluten exposure had positive food samples and 4/7 people who believed they had no consumed gluten actually had unknowingly consumed it. Dr. Jocelyn Silvester, the director of Celiac Disease Research t Boston Children’s Hospital, commented on her finding stating, “What’s important to take from this study is not that people need to be more careful and try to be more restrictive in their diet, but that it’s very difficult to eliminate gluten completely…Ultimately, what we need is something better than a gluten-free diet” (Waffle https://celiac.org/gluten-impossible-to-avoid-for-most-people-study-shows/). The conclusion of this study found that despite eating a gluten free diet, the celiac community ingests gluten and are often unaware of the source of their exposure. This study was not able to determine long term risks of small and repeated gluten exposure, however a snapshot of community members affected my “micro-contamination” indicates that there is a high probability that individuals are affected. Personally, I know I am as are others that I have spoken with and interviewed. In the essay, Celiac Disease: Exploring Four Myths: An expert shines light on common misconceptions about this genetic autoimmune disease triggered by gluten written by Julie Corliss, the executive editor for Harvard Heart Letter, she cites, "About 20% of people with celiac disease have ongoing symptoms, despite their best efforts to stick to a gluten-free diet," says Dr. Kelly. Others have intermittent signs and symptoms, particularly when they are accidentally exposed to gluten. Accidental exposures often happen when people eat prepared or restaurant foods that claim to be gluten-free but are not. Cross contamination with gluten-containing foods is another potential route” https://www.health.harvard.edu/blog/celiac-disease-exploring-four-myths-202411063079

The difficulty with remaining gluten free and healthy is not at the fault of the celiac individual’s intake choices but instead is a combination of unsafe food and lack of research. The celiac community comes together online in order to try to combat this issue.

It only takes spending a week on a Celiac focused social media page to get an idea of how often food that is labeled and sold as gluten free makes those with Celiac disease sick. Social media has revolutionized the world by providing a platform for specialized groups. Many people with disabilities and medical problems turn to social media groups because it is accessible and discreet way to discuss problems associated with one’s disability that only others with the disability understand. The convenience of being able to participate in a supportive social group anywhere, even in bed, is a valued aspect of the platform. In groups like Gluten Dude’s Facebook thread or the Celiac and Gluten Intolerant Group, the responses from the group members are informative and support ongoing celiac related.  Reading the post one sees a variety of discussions related to having Celiac. Many are posts from newly diagnosed Celiacs trying to navigate their new lifestyle. There are restaurant recommendations and questions about traveling. One will find questions about dealing with school lunches or navigating a family dinner or a work function. As you continue scrolling, one notices that there are posts of products from people either asking if they are gluten free or asking if anyone has had issues with the product. There are many stories of people getting sick from gluten free labeled products. Multiple threads are of people reporting illness after eating at restaurants. One will discover contamination such as finding a crouton in a salad after eating most of it. The more one reads, the more one notices people reporting items that are gluten free, but made in a facility, which also processes items with wheat, are making people sick. Finally, the most disturbing finding are the threads of store bought items labeled as certified gluten free in a dedicated gluten free making people sick. Most of the support that the community seems to need is easy access and clear labeling of gluten free products that contain ZERO trace gluten, however our current food system in the United States is far from that.

On July 19, 2022, I woke up to a post on Gluten Dude about a product called Sweet Loren’s Sugar Cookie Dough (12 oz UPC 865458000121 – Lot AF22 115) which was voluntarily recalled by the manufacturer Sweet Loren’s Inc. As stated by Gluten Dude, for the community, “This one is a bit more concerning since it comes from a company that is 100% gluten free.”  Indeed, how can a dedicated gluten free facility have gluten in their products? You can imagine the frustration felt by the Celiac community when yet another specialty product is deemed unfit for its consumption. After Gluten Dude reached out to the manufacturer, he reported in the thread, “This issue was identified through testing of the product in-house. The oat flour was determined to have traces of gluten despite having documentation (COA) declaring it to be gluten free.” I felt a sense of relief that the company rigorously testing in house pinpointing the source of contamination. It was also disconcerting to ponder how many products out there that are certified yet contaminated for Celiacs, especially in light of Silvester’s research. Scrolling through threads indicated that it is much more common than one would suspect. The thread under Sweet Loren’s Cookie Dough on Gluten Dude’s Facebook page was pretty revealing. Here are some of the responses from the thread:

One commenter (HH) posted, “I stopped eating these cookies a couple of years ago because I thought they were making me sick. My body never lies.”

Another (PB) posted, “Well, they use oats…”

Commenter BB posted “After reading an alert earlier this year regarding the risk for cross contamination being higher than ever due to shortages of oats I have been avoiding anything made with oats period. It’s not worth the risk to my health but I am sad this brand specifically has this issue since previously I would not have worried as much if I chose to indulge eating their products ugh. I generally don’t trust most sites stories/posts but this one made sense…” citing an article called “The Shortage of Gluten Free Oats”

LL commented “That explains a lot, I felt horrible after eating the last batch.”

ER said “I have always heard that there are no truly GF oats. It’s just some are less cross contaminated than others.

PH “No oats for me. And it sucks. But I almost always get sick when oats are involved. Thanks for the update.

MA “same for me! I can never just accept a ‘gluten free label’ I always check if it has oats (looking at you Oreo) And I always get sick even if they are certified GF oats.”

SK said “I was on a United flight recently and the gluten free meal they served me was oatmeal. I said “no thanks” there is no way I am trusting those oats.”

CO said “This brand swelled up my son’s lips. The package read nut free and gluten free. So we have stayed cleared of this brand ever since,”

The comment section under the Sweet Loren’s cookie posting makes it clear that the celiac community has been contaminated by gluten free labeled oats enough times that many individuals with celiac will not eat them at all. There was and still is quite a bit of attention given to Cheerios after they labeled their oats as gluten free and many of those with celiac disease got sick in 2015. The reaction to Cheerios was so widespread that the FDA launched an investigation and their found that Cheerios and Honey Nut Cheerios contained more gluten than the 20ppm threshold that is allowed in products labeled gluten free. The Celiac Foundation posted an essay along with the recalled batches October 7, 2015. https://celiac.org/2015/10/07/fda-investigates-complaints-associated-with-cheerios-labeled-gluten-free-general-mills-voluntarily-recalls-affected-lots The Gluten Free Watchdog posted their reasons why they could not recommend Cheerios stating that General Mills mechanically sorts their oats instead of growing them under purity protocols, thereby making them unsafe for those with celiac disease. The Gluten Free Watchdog also cited the number of people that were sick after eating Cheerios stating, “Of late, there are many reports on social media of people becoming sick after eating gluten-free labeled Cheerios” https://www.glutenfreewatchdog.org/news/gluten-free-cheerios-updated-position-statement/ . Other issues with General Mills as cited by Gluten Free Watchdog were:

1.       GM remained non-committal to sourcing oats from suppliers that follow purity protocols stating (8-27-2015), “at this time you should not any expectation that Cheerios will be moving to a purity protocol”   

2.       GM would not provide any information of the frequency or prompting of testing of individual boxes of Cheerios

3.       GM Combined several boxes to form a composite test result, essentially “watering down” the potency of gluten in individual boxes. Gluten Free Watchdog suggested testing individual boxes instead.

General Mills has yet to make any significant changes to their products which are still labeled as Gluten Free. The Gluten free Watchdog updated their statement in January 28, 2021 calling the General Mills practice of composite testing “baffling.” The state,

When Gluten Free Watchdog sends Cheerios to the lab for testing, each individual box is tested separately. If a result from any given box comes back with quantifiable gluten, the lab can regrind the sample and test additional extractions and/or grind another sample from the same box for testing. This helps us assess the extent of cross contact within the box. If testing from General Mills reveals high results, they have no idea which box is to blame. Therefore, it is not possible to test boxes produced around the same time as the box containing gluten.  https://www.glutenfreewatchdog.org/news/gluten-free-watchdogs-updated-position-statement-on-cheerios/

The Gluten Free Watchdog does not let General Mills off the hook for their lack of diligence because the reports of people in the celiac community getting sick remains high. General Mills posted a defiant response (which Gluten free Watchdog posted on their site) February 4, 2021 stating

We remain fully confident that our gluten free Cheerios comply with the FDA regulations of less than 20 parts per million of gluten. General Mills continues to execute an extremely robust finished product testing protocol where each and every lot of gluten free Cheerios products are rigorously tested to verify compliance with the FDA gluten free regulations. This robust testing protocol is a confirmation of all the other work we are doing to ensure the final product is gluten free. Our purchasing requirements, mechanical sorting process of the oats and industry standard food safety programs are examples of steps we take to ensure that the final product is gluten free. On top of those steps, we grade the oats, test the oat flour and final product as well.  Our oat flour is not put into production until it is verified to be gluten free, and our gluten free Cheerios products are not released to customers until they too have been verified to be gluten free as a part of that robust testing program.

As we have stated in the past, there are not enough certified gluten free oats to meet Cheerios needs, they would last less than a month. Our sourcing team works hard to purchase oats as free from gluten containing grains as possible. But we know that even oats grown this way, and even certified gluten free oats, may contain stray grains and that is why we have a mechanical sorting process. All of our oats go through this mechanical sorting so that we can remove stray gluten containing grains

General Mills sites the legal compliance as “rigorous testing” as if they are not jumping through the loophole of composite testing. Additionally, they admit to not using certified gluten free oats for their products. While GM may be able to “stay legal” according to the lax requirements of the FDA, the celiac community knows better than to trust their products as they are well known to make people sick. This issue of questionably sourced oats is ongoing, hence the hesitation of celiac community members to eat sorted oats. The Sweet Loren’s recall however, struck a new chord for the community because of their rigorous testing protocols. Getting sick from certified gluten free oats creates another level of mistrust in eating any oats at all. Many respondents to the post cited getting sick from Sweet Loren’s products.

JW said “I had problems with this brand too. Even the contacted the company but was told they test everything and use strict protocols. After 1 more try and feeling sick, I gave up on this brand.”

TW said “I have celiac, I literally don’t trust any products out there. I have found LOTS of food items saying gluten free or certified gluten free and they aren’t. I won’t eat any oats even if it says certified gluten free. I have been sick too much.”

RW said “I will tell you, Having a celiac service dog more and more certified products are not passing the sniff test. One of which I didn’t believe, my dog and ended up in bed for two days sick. It’s terrible that companies that were originally built to serve the community are now leading the community to harm. Needless to say, I trust the dog every time, and when I find companies that don’t pass the test I will send them hate mail. This is disgusting that their protocols and products are so lax.”

This single thread reveals that the social media platform isn’t only used for emotional support or helping the newbies, but to navigate a food system that is unsafe for Celiacs. Certified gluten free oats is not the only problem product that suffered from cross contamination. Numerous products labeled as certified gluten free have made those in the celiac community sick from contamination. Just as Silvester noted in her study, individuals with celiac are ingesting gluten frequently despite following a strict gluten free diet. Under Gluten Dude’s Sweet Loren’s post, one person responded, “Glad they are at least doing in house testing and also publicizing the problem. This actually makes me trust the company more in a sense – but trust our system less – smh. We must wonder how many other companies are not doing in house testing and have trace gluten in certified ingredients.” Gluten Dude responded, “I hear you, Shouldn’t the testing be done before the product goes out.” Indeed, the issue of gluten being voluntarily labeled means that food giants have no real consequences when they make the celiac community sick. I responded,

Absolutely they should and I hope they respond to what happened more thoroughly. I just think that so many companies are skirting by without even trying to test for trace gluten, and it comes down to “getting caught” after we get sick. It’s all so frustrating. We can’t even eat our specialized diet safely and our governmental regulators are doing nothing about it. If (labeling) it was more than voluntary, this would be less of a problem. It’s a whole network of disaster for those of us who have to deal with the fall out of no regulations and many systematic failures.

This simple social media “snapshot” shows a wealth of anxiety in regards to how the Celiac Community feels about the safety of their food. While it is difficult to read labels and double check ingredients, the main issue is neither. Another thread from the Facebook group Gluten Sensitive, Intolerant and Celiac on September 25, 2022 discusses the problem of contamination in certified gluten free foods. A woman, TCK stated,

It took me a while year to realize that as a Celiac I cannot eat certified gluten free foogs because I finally realized that is still has gluten and that being certified only means that it was less than 20ppm in the food item. I couldn’t figure out why or why I wasn’t completely feeling better. I did realize that many foods that simply say gluten free really are gluten free.

The posted clearly has had many issues with getting sick from certified gluten free foods. The replies to her post confirmed that she was not alone. They were as follows:

IP: “Been saying this! With the notable exception of Bob’s Red Mill Oats, and some frozen pizza (other than DiGiornos (stay away!)) Can’t even trust these labels. Thanks for telling everyone else. I don’t do quinoa either (a gluten free staple grain, including in many gluten free items) as it is CC’d. Cheers!”

 MS: “They really need to change the labeling on stuff to only say gluten free if it has zero amounts of gluten. So many people are still getting sick because of it. It’s ridiculous that this hasn’t happened sooner.”

JY responds: “In the USA it took many, many years to get the FDA to recognize gluten as a problem. When you see a gluten free label and anything it means 2 things. First the product has no more than 20ppm of gluten and the gluten free label itself is voluntary and there is an additional cost which the manufacturer generally passes along to the consumer. Fresh is best.”

 SV: “Wow. No wonder I felt the same!”

 KRB: “My doctor explained it to me like this, you can eat gluten free or you can eat gluten ZERO. Your body will know the difference.

AW response: “the sickest I’ve been since going GF was from a certified product. It’s a shame that we can’t trust anything until we’ve tried it and seen if we react to it. I wish they weren’t allowed to say its GF unless it is made in a dedicated facility.”

The number of people in the celiac community that get sick from certified gluten free foods in astounding. The primary challenge that the Celiac community feels desperately helpless when it comes to contamination of gluten free labeled foods. There have been no meaningful movements that protect the community thus far. If anything, the situation of factory contamination is growing worse. Those with Celiac disease are forced to search threads or have insanely expensive a gluten sniffing dogs in order to ensure their safety. Despite safety protocols, community members still get sick. The NIH should research to document how often members of the Celiac community are reporting illness with gluten free labeled products.  

I discussed cross contamination with my interview participant, Lisa. Lisa is a friend of mine that I have known for many years. When she was first diagnosed, she reached out to me for help navigating the intricacies of following a strict gluten free diet. One of the first things I told her was that gluten free foods are contaminated too and that the most frustrating part of having celiac disease is that no matter how hard you try, you will still get sick. During our conversation for this book, we discussed her experience with cross contamination. She stated about the days and weeks following her diagnosis:

L: Um, I kind of…Okay, I was very overwhelmed about the thought of cooking things myself at first. 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…and I don’t really like pita bread anyway so I never ate the bread so almost everything else on their menu is completely gluten free. 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. That’s when I realized even if its certified gluten free there is still a minute amount of gluten in it. I don’t really know what my threshold was of what amount gets me sick and what amount doesn’t…I didn’t eat everything that they bought for me, because it was still making me sick. So I just kind of got depressed and was like I’m just gonna eat meat, potatoes, vegetables and fruit and all of that. And I did that and definitely felt better

Lisa’s experience echoes what many newly diagnosed Celiacs try to do which is to continue to eat everything they normally eat, but replace it with a gluten free version. With the American diet focused on convenience foods, a lot of people are used to eating processed foods. However, as Lisa discovered, processed gluten free foods are not necessarily safe for celiacs. A lot of them make is sick from cross contamination.

We continued our discussion of getting cross contaminated from gluten free foods.

M: rom Cross contamination? Not from an accident. Not from like, oh I just ate something and the label says that it’s gluten. But like from cross contamination? Well, first of all just in general, how often are you getting sick and second of all from things that you think or things that are supposedly gluten free.

L: Honestly, sick overall in general. Recently a whole lot, with whatever viruses is going around always.

M: I mean celiac contaminated sick.

L: Now that, I kind of have been avoiding going out unless it’s a safe space. But even the stuff I have form home that is labeled gluten free and certified gluten free probably once every two weeks or so.

M: Yep, that’s about (the same as) me too.

L: Once a week if I eat a lot of processed foods.

M: Yeah that is me too. I mean, I do brave the restaurants and stuff like that. And my boyfriend is not gluten free unless he is eating with me, but we have separate places. The good thing with him is that he is OCD, and he goes through the house and changes every towel.

L: Awww that’s nice.

M: Yeah, he is like a clean freak. So that actually works out great for me, because I know he has scrubbed everything, and I don’t ever have to worry about it.

L: Right.

M: But, um, I get sick about every week or two. Still, from certified gluten free foods,

L: Yep. It’s definitely, I have not eaten anything (with gluten). I have not cheated or anything. When I get sick it’s just because I have eaten whatever parts per million of it. I don’t even know what it is that’s in it. It still bothers you when I eat too much of it. It really is only 100% safe just to eat real food, like meat vegetables, fruit all of that and um. I worry a little but about rice sometime. Especially about minute rice. The minute rice, I think those even say that it may contain wheat and all of that kind of stuff. It has to be like raw bagged rice.

M: That’s all I use. I don’t use the minute stuff. I don’t buy anything that has that disclaimer on it.

L: Yeah, I don’t either now.

M: Except for some Costco stuff. Because all the Costco stuff has that disclaimer on it ever though several things from Costco are actually fine.

L: I guess just that if they are in the same factory or something.

M: I guess just because they are such a huge corporation that they don’t want lawsuits. It doesn’t matter what you buy from Costco, all the Costco stuff is going to have that. You are taking a risk, but I found that a lot of the things are actually ok. But I only trust to give it a chance because of all of the social media threads that are on Costco stuff.

Our conversation once again shines a light on the frequency of getting sick with celiac symptoms despite being on a strict gluten free diet. Lisa and I both have worked in retirement homes based in Memphis, TN. We discussed the problem of cross contamination when it comes to environments like hospitals and retirement home. She discusses having empathy for the elderly population that doesn’t necessarily use the apps and social media tools and may not be able to discern labels well. Our conversation is as follows:

L: Think that if you were elderly and had just gotten diagnosed, they are not using social media. They are not, you know, googling everything from their phone. How in the world would they even know? Unless they…they are going to continue to get sick because they are just buying of the shelves trusting that its going to be gluten free.

M: They are going to get sick. I think about that all the time, having worked in retirement homes, you know. When I was at The Solana, we got an employee mean for lunch. And they cooked in the kitchen and they knew I was celiac. They were determined to try to not get me sick.

L: Hmmm.

M: And they were like “we are going to do this and that,” they would tell me all the things they were going to do to clean, and I would still get so sick.

L: Yeah

M: And it’s like, I stopped eating there after getting sick so many times. And I felt bad because they were trying so hard. And they were trying so hard, because they recognized that they need to be able to give safety to their residents.

L: Yeah, what if they have it, yeah.

M: Yeah, and they couldn’t fucking figure it out for me, so I know that they aren’t figuring it out for their residents. You know?

L: And the hospital

M: Oh I will not eat hospital food. People get sick from hospital food all the time. People get sick from the airplane foods too. Like I won’t order.

We continued to discuss other food products that has made us sick like certain dark liquors despite distillation and Starbucks coffee. The conversation was like listening to song on repeat, all boiling down to continually getting sick no matter how hard we try to maintain a strict gluten free diet. It is difficult keep from getting sick eating at home, it is even more difficult when eating. When I asked participants how often they got sick from restaurants they responded:

“Hasn't happened. We've been super picky about where we'll eat out.” (1K-H)

Not very often, has happened maybe twice (2M-A)

Sometimes. Maybe 1/5 experiences (3K-C)

Not very often, I try hard to research where and what is safe for me to eat. (4-LJ)

Probably 25% of the time if it is not a vetted place. I search celiac apps and websites to see if others have had issues with restaurants. I use to be less strict about where I went and would get sick probably at least 50% of the time. I am a lot more careful now. (5M-S)

Participants seemed to stick to places that they knew didn’t make them sick like Tazikis for Lisa or they would heavily vet and research places. Apps like Gluten Dude, Find me Gluten Free, Fig and Attly are helpful but ultimately there is still a risk of cross contamination from a number of sources. In the essay, Food Safety and Cross-Contamination of Gluten Free Products: A Narrative View edited by Maria Cappello explores the many ways that gluten free labeled foods can become cross contaminated stating:

 Due to gluten contamination, many inherently gluten-free products (derived from corn, rice, millet, etc.,) cannot be consumed by patients with CD. These products, if misbranded as “gluten-free” and used by the patients with CD, could result in a recurrence of symptoms. Contamination of gluten-free foods with gluten-containing material can occur at many stages of food production, from the fields, farms, mills, and factories, as well as handcraft enterprises, restaurants, and households. (Capello) https://pmc.ncbi.nlm.nih.gov/articles/PMC8308338/

Capello and her team explore PubMed databases as an overview of research of cross-contamination. They state the standard for gluten allowance in Gluten free foods in the United States so as to clarify what they are considered contaminated versus what is not contaminated:

 According to the “Codex Alimentarius Standard for Gluten-Free Foods” [13], gluten-free dietetic foods labeled gluten-free should not exceed 20 mg gluten per kg food when sold to consumers [13]…However, patients with CD are still confronted with foods that are contaminated by gluten above the threshold of 20 mg/kg

Then the team explores the testing in multiple countries finding widespread contamination in the United States. They provide a chart of the different countries and share the following:

Twenty-two naturally gluten-free grains, seeds, and flours were purchased in the United States and tested in duplicate for gluten contamination [31]. Thirteen samples (59%) contained less than the limit of quantitation (5 mg/kg), and nine samples (41%) contained gluten levels ranging from 8.5 to 2925 mg/kg. Seven samples (32%) exceeded 20 mg/kg and could not be considered gluten-free. In another market survey in the United States, different gluten-free-labeled foods (n = 275) and non-labeled foods (without wheat/rye/barley on the ingredient label; n = 186) were analyzed for gluten [24]. A total of 10% of gluten-free-labeled foods had gluten contents >20 mg/kg. Among the non-labeled naturally gluten-free foods, 19% had >20 mg/kg of gluten, of which 10% had >100 mg/kg. The investigation of 78 different certified gluten-free foods, offered in the United States, revealed that 61% of the samples contained less gluten than the limit of quantitation (10 mg/kg), and 18% contained between 10 and 20 mg/kg [22]. However, 21% had gluten levels above 20 mg/kg, ranging from 21 to 61 mg/kg. In particular, five of eight labeled breakfast cereal samples showed gluten contents >20 mg/kg

The prevalence if 21% of samples containing more than the allowed level of less than 20ppm is an atrociously high amount considering that the those with celiac disease across the United States expect for their natural and processed gluten free foods to be safe. Even more frightening is the 19%  percentage of naturally gluten free foods that contain more than 20mg of gluten and the 10% that had 100mg of gluten. This is an unacceptable number. Compared in the same paper to other countries such as Italy, Germany, Spain and Norway that have less that 1% of food that was contaminated with gluten. The fact that other countries are able to keep their celiac communities safe from contamination shows not only that it is possible but also that the United States is seriously lagging behind.

Avoiding gluten containing foods whether processed or at restaurants is challenging. A woman with celiac disease named Kendra who has a gluten sniffing aid dog did her own test using her neighbor’s pizza oven. She posted the test on her Instagram SUKIWD on August 12, 2022 stating:

Cross Contact is a real problem for people with Celiac Disease. I often hear, “Why don’t you just eat gluten free?” Many foods are gluten-free, but gluten can be picked up so easily just through handling. I decided to do an experiment. My neighbors have a wood fired pizza oven. I asked them to tell me when they were making pizzas. I brought over some gluten-free flatbread dough I made at home. Suki checked the dough before I brought it to my neighbors. It was gluten free. They put it on the stone of their pizza oven and turned it over with the pizza peel. Theirs was made of stainless steel and not wood. The dough was in the oven for less than 5 minutes. It was flipped a couple of times. We removed it and placed it directly on my plate and took it home for Suki to check. Her response was immediate. There was gluten in the dough. The gluten came from the hot pizza oven and the pizza peel. The oven was well over 500 degrees. Gluten does not burn off. It is easily transferred through handling. Do you eat pizzas made in shared pizza ovens? Share with those who may need to learn more…People with Celiac Disease get very sick form the tiniest amount of gluten. A gluten detection dog helps them make sure their food is safe. Suki is a gluten detection service dog for her mom who has celiac disease. She lifts her paw when she detects gluten and noses your leg when there is none. We train with CreScent Service Dogs.

This little experiment done by Suki and Kendra shows that cross contact is extremely difficult to manage even when precautions are taken. However, food is not the only source of contamination for people with celiac disease. Medications which are only labeled with inactive ingredients and not whether they have gluten containing ingredients on them is another problem. Many over the counter drugs contain gluten and Celiacs diligently research every over the counter medication they ingest as many are not labeled as gluten free. Gluten can be found in a number of common medications such as Advil and Pepto-Bismol. Lisa and I discussed gluten in medications Our conversation was as follows:

L: “Yeah, it’s real easy now (recalling what the doctor said), It’s everywhere, just make sure it’s labeled gluten free,” No that’s not everything. You (he) didn’t tell me about Advil. He didn’t tell me about sodium starch glycolate in my Claritin. He didn’t tell me about Benadryl. I don’t even think the pharmacists are aware of how it is.

M: Oh, they are not. They have no clue. No clue. It’s hard to find. You know how to look up your pills? Like if you get a pill, if you get a prescription, you pull the pill out and its stamped. That’s the drug maker and you can go to their website and their website usually will say whether they are gluten free or not.

L: That’s good to know. Okay. I definitely have looked, like if I drop a pill and I want to know which one it is, I will look up “white oblong S23”or whatever and it will tell me the name of the drug but I haven’t actually gone into looking into the manufacturer.

M: Yeah because the manufacturer matters because with the thyroid stuff for example, some of the generics are not gluten free and some of them are. But how do you know which generic you are going to get? You have to actually look at the manufacturer, and you have to actually look at the website.

L: That is so scary. And you almost died.

M: I almost died. From that. From my thyroid medicine.

The amount of medications that contain gluten and are not labeled as such is inexcusable. In an essay called Is You Medication Gluten Free? By Dr. Izabella Wentz, she discusses the high prevalence of gluten in several medications but focuses primarily on thyroid medication (the medication that made me sick). She states, “The last time I needed to use Advil was before I went gluten free, so I was surprised to have discovered that there are multiple formulations of Advil with gluten in them! Specifically, Advil Liqui-Gels, Advil Menstrual, Advil Migraine, and any Advil product with a film coating contains gluten.” She continues to list the thyroid medications that are gluten free and the ones that are questionable. Under her posted article are several commenters that reference their own experiences with cross contamination of their thyroid medicine. Here are a couple of the responses:

Theresa S. says April 19, 2014 at 4:01 PM

As a celiac on Synthroid for years without problems, I recently learned the hard way that Synthroid is now cross contaminated with gluten even though the ingredients do not contain gluten. I became very sick after filling my last prescription and after investigation from a very helpful pharmacist, learned that the only current manufacturer of Synthroid (name brand) is Abbott and there is cross contamination. Lannett has a generic form of levothyroxine and all their products are gluten free so there is not a risk of cross contamination.
If you are on Synthroid, beware of cross contamination.

Hi Anette,
I am having the same problem as you. I also have celiac and a total thyroidectomy in October 2013. Right now I a m on levothyroxine 100 (mylan) and I feel sick all the time. I just started to add the liothyronine 5 mg (mylan as well). I just read an article stating that Levoxyl is back on the market. I also heard it is better absorbed, therefore better for celiacs. I am awaiting a call from the pharmacist with more info on
it…..hopefully it is gluten free!
Best of luck and God bless you…..
Jodi from NE Ohio July 1, 2014 at 9:18 PM

Thyroid medication is important since hypothyroidism is a coinciding condition, but all medications consumed by those with celiac disease need to be gluten free. Those with celiac disease experience the same challenges with medications as with food. Americans with celiac disease continue to suffer due to the lack of regulatory laws and safety protocols for gluten free foods and medications. We can only conclude from our experience that Celiacs are not safe from cross contamination in the United States. In fact, we are regularly ingesting what is poison to us. As I walk through the grocery store aisles of brightly packaged foods with gluten free labels, I feel betrayed. Gluten free products are still all the rage and still the butt of jokes. The seal of approval given to certified gluten free foods often feels meaningless when we keep getting sick. In a time that we have so many apparent options, we have so little actual security that our food is safe.