HISTORY OF CELIAC DISEASE AND PUBLIC RESPONSE TO THE GLUTEN FREE DIET (CH 2)

When I had my Memphis vintage store in the Airstream, one of my business neighbors owned cute art bar and sandwich shop. He would come over to chat every now and then. One day, he offered to make me a sandwich and I told him that I could not have sandwiches, because I have celiac and had to eat completely gluten free. He responded with, “oh is that really a thing?” I did my best to educate him, but I could tell by his tone that he just didn’t believe that celiac was a s severe as it is. He said to me, “No one had celiac back in the old days, why do people all of the sudden have it now.” I tried my best to explain but he left that day still in doubt as to the seriousness and validity of celiac disease. Reading thought blog posts and social media commentary, it is often misconstrued that Celiac disease is a new disease; that it is an ailment that our parents and grandparents didn’t suffer from. Watching a gluten related montage by DryBar comedy on YouTube posted January 25, 2022 called “Gluten Free Is A Sad Place to be,” https://www.youtube.com/watch?v=mYyNm4-q-Vg this sentiment is prominent among the comedians’ sets. The discussions about gluten all lean toward a stance that the need to eat gluten free is a newly discovered ailment for the weak. Heath Harmison states about gluten:

Something magically in the last few years came out called “gluten” (airquote), ruined everything Gluten issues? Are you kidding me? We didn’t have gluten issues in the 8-s, we just dealt with the diarrhea. You know what I mean? We just dealt with it. If you got a little tummy ace or a scrape on your knew you dad or your grandpa would be like rub some dirt in it, eat the dirt. You guys remember the dirt mentality? Heath Harmison Dry Bar Comedy (Youtube) 

Not only does Harmison incorrectly state that gluten “magically appeared,” completely invalidating the experience of celiac disease, but he compares it to a scraped knee instead of the life threatening disease that it is. Another comedian, Dwight Slade states in regards to a trip to an ice cream shop states, “The poor kid has been so hen pecked by these neurotic diets that we carry around. Is there gluten in there, I was reading in Western Nutrition uptight person magazine, I can’t have it. Hey stay home and chew on an ice cube, you will be happier.” The level of Slade’s resentment toward the gluten free diet and a kid working in the ice cream store highlights the dangerous mindset against people surrounding those who are required to eat gluten free. Slade’s suggestion that those with celiac disease are neurotic, uptight and should “just stay home” echoes the respond of many toward celiac disease and the gluten free diet. Another comedian, Kevin Jordan, furthers this sentiment when he mocks those who eat gluten free and whiny and overly exaggerating stating:  

I don’t know when these kids got so weak. Ehhhhh, I can’t eat the white bread, because white bread has the gluten in it. I get a gluten in me ehehehehehhhh (mocks moaning). We grew up in the whitest of white bread of all time, Wonderbread…..You kow what my favorite sandwich was when I was a kid? Spaghetti and meatball on Wonderbread. That’s enough gluten to kill four kids today.

Again, the idea that celiac disease and the gluten free diet are not serious but instead more of a weakness of character prevails in Jordan’s set. This unfortunately common misconception harms the celiac community greatly because it invalidates ones experience. Someone preparing food for a person with Celiac who believes this falsehood will too often not practice celiac safe handling procedures, thereby making the person with Celiac disease sick. This is exactly what happened to me with my business neighbor. He offered to make me a lettuce wrap and swore it would be ok for me. I actually tried to refuse by the insisted that he would take appropriate precautions. I told him that whoever made my food, needed to change their gloves and work on a clean surface. I also told him I can get sick from less than a crumb and that they really had to pay close attention. After all, I still became extremely sick from cross contamination. All of my efforts to educate him about the seriousness of celiac was to no avail, and he continued to put those with celiac at risk because of his doubt. After he vocalized his doubt as to the seriousness of celiac and the newness of the disease, I should have known not to accept food from him. I was all too hopefully that educating would help, but the neighbor ignored my words.

When approaching Celiac disease, it is important to recognize its ancient diagnostic history in light of many the misconceptions about its origin. The diagnosis and discovery of the only known cure to Celiac disease (the gluten free diet) has a long and interesting historical prominence. Thanks to a series of anthropological research as well as early medical research, we deduce that Celiac disease has been present since humans began eating wheat about 9000 years ago (https://celiac.org/2017/05/16/celiac-diseases-millennia-long-rise-prominence/#:~:text=A%20Disease%20Gets%20Its%20Name,Greek%20physician%20Aretaeus%20of%20Cappadocia. The famous Greek physician. Aretaetus of Cappadocia first wrote about and named the disease 2000 years ago. He first described the occurrence of malabsorptive diarrhea in children. https://www.uclahealth.org/medical-services/gastro/celiac-disease/patient-resources/history-celiac-disease. Although Aretaetus was not able to deduce that gluten or even wheat was the cause of celiac, he documented the severity of the disease in his writing entitled On the Causes and Indications of Chronic Diseases (4 vol of his Treaties). The notable works were finally published posthumously with the first publication translated into latin and published in Venice in 1552. A publication written in the original Ionic Greek published in Paris in 1554 with subsequent editions published in 1723, 1731, 1828 and 1947. Aretaetus was considered one of the greatest Greco-Roman medical scholars after Hippocrates (Tekiner, Halil) referenced in the article “Aretaeus of Cappadocia and his treaties on Diseases” https://pubmed.ncbi.nlm.nih.gov/26037198/ Celiac disease clearly afflicted humans in ancient history as much as it does today.

In 2008, archeologists discovered an accordance of celiac disease in the ancient bones of a woman living the first century AD in Cosa Italy. The remains Ancient Roman woman (Callaway, E. Ancient bones show signs of struggle with celiac disease. Nature (2014). https://doi.org/10.1038/nature.2014.1512 https://www.nature.com/articles/nature.2014.15128). The woman’s remains were tested by Gabriele Scorrano, a biological anthropologist in Rome published in the American Journal of Physical Anthropology (Scorrano, G. et al. Am. JPhys.Anthropol. http://dx.doi.org/10.1002/ajpa.22517 (2014). The testing revealed that a combination of genetic factors and evidence of malnutrition indicated that the ancient Roman women suffered from Celiac disease. The affluent woman was malnourished despite having adequate access to food. Calloway cites the anthropological findings stating,

DNA analysis had previously shown that the woman carried two copies of an immune system gene variant that is associated with coeliac disease. Although coeliac is a complex disease in which multiple environmental factors may play a role, the gene variant is found in nearly all patients in contemporary populations.

Using analysis of the other bones in that location, the history of the woman, what the woman consumed and the medical analysis of the bones, Scorrano’s team came to the conclusion that the woman likely knew that her ailments were related to her diet but she did not know that she needed to eat gluten free. Calloway sites,

Scorrano and his team found that the young woman would have consumed more meat and possibly freshwater fish and fewer plants than did people living in the area in the sixth century and medieval times. Carbon and nitrogen levels in her bones were also distinct from those in most other inhabitants from the Imperial Roman period previously sampled, but similar to those in bones from an early Christian burial site in Rome, where individuals may have favoured freshwater fish….Scorrano notes that malabsorption of nutrients could offer an alternative explanation for the unusual isotope levels in her bones.

Malabsorption of nutrients is extremely rare in adults who do not have Celiac disease and along with her genetic factors, the anthropologists were able to deduce that this ancient Roman woman had undiagnosed Celiac disease. Rachel Simpson in her study, “Gluten-Free Rome: Celiac Disease in Bioatcheological Record” published in COMPASS in 2017 summarized the history of celiac disease in humans recreated by bioarchiologists. She cites the woman in Cosa as well as analysis of other bones found in Cosa stating,

“…recent analysis have employed a suite of macroscopic, molecular, and chemical techniques to establish that a Roman Imperial (100-300 CE) individual in Cosa, Italy, likely suffered from celiac disease…Using similar syntheses of techniques bioarcheologists can possibly identify celiac disease in individuals predating 100 CE, recreating the origins of celiac disease as well as tackling other previously ‘impossible’ research questions in the field. Simpson

Simpson further is able to trace the first occurrences of celiac disease to the adoption of agriculture and cultivation of wheat by humans. That is to say, celiac disease began occurring in the same percentage of people when people first began to eat wheat as it does now, about 1% of the population. She states citing several other researchers,

A number of digestive diseases linked to the adoption of agriculture, such as celiac disease which afflicts at least 1% of most human populations, remain a modern issue (Mustalahti et al. 2010; Rubio-Tapia et al. 2012). Researchers suggest that celiac disease originated with the onset of wheat cultivation (Freeman 2013); however, it is difficult to recognize the ailment in the palaeopathological record (Rühli and Ikram 2014: 55)…One of the world’s first Agricultural Revolutions took place in approximately 8 000–10 000 BCE in the Levant region of the Middle East, marking the initial shifts from foraging to agriculture with the domestication of cereals (Pinhasi and Stock 2011)…Given Homo sapiens’ foraging origins, there is a clash between lectins of domesticated cereals and the lectins compatible with the human leptin system. This mismatch of lectins and leptins has led to a rise in certain diseases, including Type 2 Diabetes, obesity, cardiovascular disease, and celiac disease, all which are prevalent in agrarian societies and infrequent in horticultural and foraging societies (Jönsson et al. 2005). (Simpson 13-15).

Finally Simpson concludes that the occurrence of celiac disease in different populations across the globe can be explained by the spread of the cultivation of wheat. Her theory is that populations that have had more time to micro-evolve to adapt to gluten have a slightly less genetic predisposition to it while other civilizations that only more recently incorporated the largescale consumption of wheat such as the Irish have a higher predisposition to celiac (Simpson 16-17).

What modern comedians and naysayers fail to realize is that celiac disease has been around since the beginning of wheat’s cultivation and human consumption. The occurrence of celiac disease has even been traced back genetically to our Neanderthal ancestors. A research team was able to link Celiac Disease to Neanderthal DNA citing that 2-4% of genetic material outside of Africa comes from Neanderthals interbreeding with modern humans and celiac disease is one of our inherited genes from Neanderthals. The research team included Recep Ozgur Taskent, Nursen Duha Alioglu, Evrim Fer, Handan Melike Donertas, Mehmet Somel and Omer Gokcumen. They are variously affiliated with the Department of Biological Sciences, University at Buffalo; the Department of Biology, Middle East Technical University, Ankara, Turkey; and the European Molecular Biology Laboratory, European Bioinformatics Institute, Wellcome Genome Campus, Hinxton, UK publishing an article called, “The Cost of Neanderthal Introgression. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4896200/ The essay states

One of these haplotypes is unusually long and harbors variants that affect the expression of members of the CCR gene family and are associated with celiac disease." Since the genome-wide association studies show that celiac disease is linked with the Neanderthal haplotype, we may have to thank our neanderthal cousins for this disease. 

It’s clear that even before modern man, celiac disease has been an issue for humanoids thereby solidifying the disease as ancient and nothing new. Other doctors understood the prominence and severity of celiac disease and it became better documented. The disease was commonly seen in children ages 1-5 because those with celiac disease did not often survive past 5 years old. These children were too malnourished and failing to thrive as discovered by the English pediatrician Samuel Gee in 1888. Gee determined that celiac disease resulted from food-related malabsorption, however he was not able to narrow down the correct diet. He unfortunately prescribed toast as the cure for Celiac Disease (celiac foundation article https://celiac.org/2017/05/16/celiac-diseases-millennia-long-rise-prominence/#:~:text=A%20Disease%20Gets%20Its%20Name,Greek%20physician%20Aretaeus%20of%20Cappadocia

It wasn’t until World War 2 that physicians determined the cause of celiac disease to be gluten. The article written by Anne Ewbank entitled, “How Famine Under the Nazis Revealed the Cause of Celiac Disease: A Food Shortage Helped One Doctor Prove his Theory,” and published in 2018 discusses the process that the puzzle of celiac disease finally came together during a famine created by the Nazi invasion of the Netherlands in the winter of 1944. https://www.atlasobscura.com/articles/history-of-celiac-disease Before this radical realization, and American doctor was very close to figuring out the disease. As Ewbanks states, …”at the dawn of modern medicine, celiac remained a frustrating mystery to doctors. Even worse, the disease had the greatest effect on children. Celiac was often a death sentence…Children with advance celiac disease had horrifying symptoms: rashes, withered limbs, and large swollen bellies, like famine victims” (Ewbanks). As doctors tried hard to discover a cure for celiac disease, there was quite a setback in the United States when one well-meaning doctor though he had discovered a cure. In the piece by NPR called “Doctors Once Thought Bananas Cured Celiac Disease. They Saved Kids’ Lives – At A Cost” cites how Dr. Sidney Haas prescribed the banana diet as a cure for children with celiac disease beginning in 1924 https://www.npr.org/sections/thesalt/2017/05/24/529527564/doctors-once-thought-bananas-cured-celiac-disease-it-saved-kids-lives-at-a-cost. The diet consisted of numerous daily bananas, milk, cottage cheese, meat and vegetables. Although the diet eliminated wheat, gluten was not thought to be the cause of celiac disease. Instead, Haas and other endorsers of the diet like Alessio Fasano, the chair of pediatrics at Harvard Medical school and s specialist in celiac disease, thought bananas was the cure to the mystery.

Ewbanks discusses the severity and the unintentional cure of the disease in the United States, stating:

In the 1920s, Dr. Sidney Haas believed he found a cure for the disease: the banana diet. This diet worked for those with celiac disease because it was unintentionally free of gluten, the protein ultimately found to cause celiac disease. Patients on the diet, mainly children, were prescribed to eat numerous bananas a day along with dairy products, meat and vegetables, while eliminating all starches. Their health improved. This was considered a major breakthrough because previously many children with celiac disease had died from the affliction. Unfortunately for these children, wheat, a prime source of gluten, was reintroduced to their diets once they started feeling better, leading to a return of celiac disease symptoms and lasting intestinal damage in some…“At that time, around 30 percent of children with celiac died. Parents were instructed to drop their children off at the hospital for six months," says Fasano. If the children survived and thrived on the banana-based diet, the parents could then "pick them up and take them home… “The diet was unintentionally gluten-free and also incredibly high in calories," explains Tricia Thompson, founder of Gluten Free Watchdog. "It is incredible what the mothers and fathers did, going down to the docks to meet the ships and buy multiple bananas hanging on branches. So many people were so very grateful to him," she says of Haas. "He saved their lives." But Haas' honest error led to serious consequences. As the children recovered, wheat was reintroduced.

Doctors in the 1920s and 1930s were too quick to promote the banana diet as a complete cure to celiac disease. In fact, the American mindset that a prescriptive cure to override the genetic disposition of celiac disease exists today with companies attempting to create medication that will allow someone with celiac disease to eat gluten. Several drug companies are in various phases of research and development without current success according to the article called posted on the Celiac Foundation Website called “Future Therapies for Celiac Disease” https://celiac.org/about-celiac-disease/future-therapies-for-celiac-disease/ . Sadly those who thought they were cured by the banana diet grew up to re-develop symptoms of celiac disease which untreated can cause cancer, celiac ataxia (a severe form of dementia caused celiac) and death. It wasn’t until Willem Karel Dicke discovered during the “Hunger winter” famine caused by the Nazi invasion of the Netherlands that celiac disease was linked to a reaction to gluten.

During the winter of 1944, the Nazis cut off the food supply to the Netherlands. Dicke was a pediatriacian who cared for children with celiac disease at the Hague’s Juliana Children’s Hospital. Dicke noticed that despite the famine in which people in the Netherlands were starving, the bread shortage caused the children with celiac to thrive. Ewbanks cited Dicke’s observation of children improving by eating a wheat free diet. One boy in particular was the first to be observed by Dicke. Ewbanks states, “The boy ate wheat-free while at the hospital. But when he returned home, the boy’s parents reintroduced a typical diet against Dicke’s wishes. When Dicke mapped the boy’s growth patterns, they corresponded to his time spent at home and at the hospital.” The improvement in health during the implementation of the gluten free diet was recorded by Dicke as a confirmation to what he had long suspected. Dicke observed, “To the (celiac) children, the shortage of food was less severe than the toxic effect of wheat products…” Citing Dicke’s son Karel, Ewbanks references, “The mortality rate of children in the Netherlands with celiac fell during the food shortage from 35 percent to nearly zero.” However, the worlds was skeptical. Dicke embarked on more qualitative study of the gluten free diet with children with celiac disease in 1948. Ewbanks states,

In 1948, using five test subjects, Dicke provided different cereals for them to eat, carefully measuring patient weight and examining feces for fat absorption. In 1950, Dicke published his findings that wheat and rye flour aggravated celiac symptoms. Importantly, he also gave the children wheat starch to no ill effect, discounting the theory that complex carbohydrates were the cause. With the help of other colleagues, he later pinpointed gluten as the ultimate culprit.

After Dicke discovered that the cause of celiac disease was the ingestion of gluten, the gluten free diet became the standard cure for Celiacs in Europe and the Australia (Ewbanks). However, reception of the cause and the diet was now accepted in the United States until later. When Dicke visited the US in 1947 he stated that no one believed him (Ewbanks). Sadly many people with celiac disease remain undiagnosed and those that are diagnosed often are the butt of a joke.

The American phenomenon of dismissing the source and seriousness of celiac disease is analyzed in an essay by Seamus O’Mahoney entitled, A Postmodern Disease” https://drb.ie/articles/a-postmodern-disease/ With the rise of research of “non-celiac” gluten sensitivity which began in 1980 with Brian Cooper in a small “almost anecdotal” study published in the American medical journal Gastroenterology, called “Non-Celiac Gluten Sensitivity,” patients showed improvement of symptoms on a gluten free diet despite negative test results (O’Mahoney). These patients were at least partially dismissed as having a psychosomatic disease. Doctors often believe that testing for celiac disease is simple and accurate even though if one searches the community of those with celiac disease, he or she will discover many with celiac disease received negative tests results over and over again before they finally got a positive one. Nonetheless, patients with gastrointestinal symptoms increasingly began to self-diagnose as gluten-sensitive. This method caused as much confusion to the public perception of eating gluten free as it did to the acceptance of celiac in the United States. However, the unprofessional labeling of “non-celiac sensitivity” led to a new commercial opportunity (O’Mahoney).

A summary of a meeting published in the journal BMC Medicine in 2012 by Dr Schar, a leading manufacturer of gluten free foods stated that the number of individuals embracing a gluten-free diet appeared to be higher than the projected number of people with celiac disease. He then speculated as to why gluten is toxic to many individuals outside of celiac disease with little evidence (O’Mahoney). O’Mahoney states:

Dr Schär must have been pleased with this consensus, which led to several studies on gluten sensitivity over the next few years. In these trials, patients with self-diagnosed gluten sensitivity were randomly allocated to a challenge with gluten (disguised in a capsule) or to an inert, harmless placebo, and the response to these challenges was measured by symptom scores. This is called “Double-Blind Placebo-Controlled Oral Challenge”. It is difficult to assess the literature objectively, as many of these studies were poorly designed, badly written up, and published in low-impact journals. To add to the confusion, some patients recruited into these trials undoubtedly had a subtle, low-grade form of true coeliac disease (“coeliac lite”), and should have been excluded.

The research on non-gluten sensitivity sparked a lot of debate among professionals and a lot of rejection by much of the American psyche. To add to the confusion between commercial interests and patient self-diagnosis, the medical community has no way to determine if gluten sensitivity is an actual condition or psychosomatic. O’Mahoney states:

The experts, however, instead of waiting until more data became available, gave us the Salerno Criteria on how to diagnose a condition that may not exist. Gluten sensitivity is thus a model for what might be called a postmodern disease. It’s “discovery” owes much to patient pressure and the suborning of expert opinion by commercial interests. It does not have a validated biological marker (such as a blood test or a biopsy), and the diagnosis is made by a dubious and highly arbitrary symptom score…. Although the coeliac disease experts accepted commercial sponsorship and then obligingly legitimised the highly dubious entity that is gluten sensitivity, two entrepreneurial American doctors, William Davis, author of Wheat Belly (2011), and David Perlmutter, author of Grain Brain (2013), took the hysteria to the next level. Their best-selling books contributed substantially to the popular perception of gluten as toxic not just for coeliacs but for everyone. Neither Davis (a cardiologist) nor Perlmutter (a neurologist) had any expertise or research track-record in coeliac disease or gluten sensitivity, but the fact that both used “MD” after their names gave their best-selling books a bogus scientific credibility.

Those with gluten sensitivity became inseparable from those with celiac disease in the minds of Americans and the cultural war of dismissiveness toward Celiacs began. The further promotion of gluten as toxic for everyone by those with commercial interests or snake oil salesmen trying their hand at publishing, made matters even worse for those with Celiac disease. As O’Mahoney states, the celebrity fad of people like Gweyneth Paltrow, Miley Cyrus and Novak Djokovic promoting a “gluten free lifestyle” made those with celiac seem disingenuous.O’Mahoney concludes, “  We have a strange paradox: the majority of people who should be on a gluten-free diet (those with coeliac disease) aren’t, because most people with coeliac disease remain undiagnosed. The majority of those who are on a gluten-free diet shouldn’t be, because they do not have coeliac disease.” To add to this, those with celiac disease are seen as hysterical, neurotic, hypochondriacs and illegitimate due to the promotion of a gluten free diet “for everyone.” As dismayed as I am by the misunderstanding promoted by media content like the DryBar comedy sets, the backlash against eating gluten free is clearly due to the trajectory of the commercialization of gluten free foods.

Celiac disease has a long history of existence in the human genome, and as explored in this essay, seems to have it roots occurring before modern humankind. The battle to discover the source lasted thousands of years. The struggle to get an accurate diagnosis seems unending. On an episode of Dr. Oz entitled “The Truth About Gluten Free Foods: What You Need to Know,” https://www.youtube.com/watch?v=LAusdaxP6cc the lines between celiac disease and those who prefer to eat gluten free are both blurred and enunciated. The episode focuses of gluten free eating for those who have self-diagnosed sensitivity yet simultaneously recognizes the seriousness of celiac disease. While the episode is “for everybody” his guest, Dr Mark Hyman points out delayed diagnosis of celiac disease stating, “Remember most people aren’t diagnosed and some people will go ten years before being diagnosed with full blown celiac. So it masquerades as a whole bunch of other symptoms that doctors miss often. So its good thing to think about it.” He both cites scientific data as well as suggests that self-diagnosis of gluten sensitivity should be considered. Sadly, even among the most well meaning media pieces, the war against disinformation about celiac disease continues. The marketability of the non-celiac gluten free diet has had dire consequences to those with celiac disease. While the existence of gluten free alternative is seemingly unending, the safety of gluten free food for Celiacs is less prevalent than ever before. Educating the public about the seriousness of celiac disease as well as the difficulty to diagnosis it is the only antidote for misinformation and the resentment in the public psyche of Americans.