Soon, when a baby is born, doctors will be able to inspect his or her genetic code and advise the parents how to avoid life-long disorders of the immune system such as celiac disease. Preventive measures might include introducing particular foods while breastfeeding or enlisting the child to help in the garden or raise chickens. So predicts Moises Velasquez-Manoff in An Epidemic of Absence: A New Way of Understanding Allergies and Autoimmune Diseases (Scribner, 2012). Velasquez-Manoff is also the author of a recent lead story in The New York Times Sunday Review that examined the role of breastfeeding and the development of celiac disease. He said he had noted the disease has been a hot topic recently in the media, but discussions seldom touched on establishing healthy microbiota in the gut.
So he chose to address it in a Feb. 23 piece, “Who Has the Guts for Gluten?” The story resonated among those who have celiac disease for its clear and reasoned description of the ways celiac disease might develop. It was the most emailed story on the paper’s website the day it appeared and as of press time it was the newspaper’s seventh-most emailed article in the past 30 days.
“Scientists are pursuing some intriguing possibilities. One is that breast-feeding may protect against the disease. Another is that we have neglected the teeming ecosystem of microbes in the gut-bacteria that may determine whether the immune system treats gluten as food or as a deadly invader,” Velasquez-Manoff wrote in the Times.
The story was based on findings in Velasquez-Manoff’s book, which highlights new ideas about the causes and rising prevalence of celiac disease. The book also details the role parasites play in combating immune disorders. Investigating the topic over two years, the author infected himself with hookworms, surveyed research and interviewed scientists from around the world.
He noticed parallel lines of research showing a rise in various diseases of the immune system, particularly in affluent countries. Some important insight turned up in obscure journals. To his knowledge, he said in an interview, some of the most surprising findings had never been reported in popular media.
“I do not know if I am able to articulate it any better than anyone else. I am just aware of a lot more science. I spent two years writing this book, so I did a lot of research,” he said. Many of the specialists he contacted for his research have expressed appreciation for the book, he said, and were happy to see it bring those “parallel lines of this science together.”
He argues that this trend in autoimmune diseases results from a declining biodiversity of germs and worms that normally live in our bodies, even the blood parasite that causes malaria.
Why the rate of celiac disease is increasing
A popular theory suggests celiac disease is becoming common because we are eating too much wheat or the wrong varieties, particularly genetically modified wheat. Velasquez-Manoff disputes this. Facts about wheat are the most essential point about celiac disease that readers should take from his book, he said.
“It is important to contextualize any autoimmune disease within the greater family of autoimmune diseases,” he said, “to recognize that sometimes at the individual level but especially at the population level, all these diseases increase together.”
People miss this pattern if they focus on just one disorder, he added. For example, he warns against jumping to the conclusion that celiac disease has arisen because of increased wheat consumption, changing molecular structure of the protein, or how we prepare it.
Wheat has increased in the American diet since the 1970s, but we actually ate more of it in the late 19th century. Despite this, celiac disease could not have been widespread then. We have no way to estimate its prevalence at the time except by noting that deaths were rare, even though celiac disease was frequently fatal in childhood cases before scientists recognized the connection to wheat and began eliminating it from their patients’ diets in the 1940s. Consumption of wheat does not seem to account for increasing incidence of celiac disease, but the argument persists, according to Velasquez- Manoff.
“You can log onto the Web and find a number of conspiracy theories in a second,” he added. “There is a lot of evidence that those are non-sequiturs. It is far more likely— at least this is the hypothesis I explore— that something has changed about us.”
The increasing prevalence of celiac disease has followed the same trajectory as other autoimmune diseases and in the same geographical locations, irrespective of how much or how little the culture relies on wheat as a staple. Velasquez-Manoff points instead to the changing ecology of our guts.
Cultivating the superorganism
An Epidemic of Absence explores how microbes and parasites build a healthy ecosystem within our bodies, particularly the gut. The genetic diversity of our microbiota helps us digest food and has long been recognized as essential to health. However, new studies add increasing evidence that affluent lifestyles are changing the bugs that inhabit our intestines. This in turn appears to be causing the rise of allergies and autoimmune diseases, still rare in most developing countries.
One corner of the world has provided a fertile laboratory for studying this phenomenon. Karelia, historically a province of Finland, became divided during World War II. Part remains in Finland, one of the richest countries in the world. The other part in Russia is one of the poorest regions in Europe.
“You have the same population genetically, culturally and linguistically on both sides,” Velasquez-Manoff said, “and a very, very different prevalence of celiac disease.”
A 2008 study published in Annals of Medicine tested schoolchildren for celiac disease and found in Russian Karelia, “a prevalence of 1 in 496 children compared to 1 in 107 children in Finland.” Finnish children with the same heritage and living in the same climate are almost five times more likely to have celiac disease. Not only that, Finland has one of the highest incidences of autoimmune disease in the world, ranking first for autoimmune Type I diabetes.
Velasquez was quick to point out that the celiac disease epidemic cannot be attributed to wheat: “We should be focusing on what is the difference there and why the immune system seems to work differently on the Russian side. Just looking at that example you can come away and say it is not the amount of wheat we come in contact with. If anything, the Russians are consuming more wheat, the same modern varieties.”
What is the difference? The average Russian Karelian family has a lower income, lives in more crowded conditions, and often keeps farm animals. Their children encounter a diversity of microbes and are more likely to experience infections such as hepatitis A. Studies show that this exposure seems to protect Russian Karelian children from autoimmune disorders and allergies.
Germs and worms have lived in us and our ancestors for millions of years. We are their home, so they have a vested interest in keeping us well. They interact with the complex human immune system, stimulating it just enough to fight off virulent pathogens while preventing the body from launching a massive, self-destructive attack. Velasquez-Manoff considers this balanced system, including an individual with all his inhabiting life forms, a superorganism.
A healthy start: breast milk
We used to depend on nature to populate our digestive tract with the right variety of bacteria. We spend the first nine months in a sterile environment and acquire our first microbes while passing through the birth canal.
According to research surveyed in An Epidemic of Absence, breast milk contains chemical messages from a mother’s body telling her baby what bacteria to expect, which species to accept, and when to turn on the immune reaction to fend off dangerous ones. If the mother has the right balance of bacteria in the gut and a healthy immune system, it helps the baby avoid developing allergies and autoimmune diseases.
The American Academy of Pediatrics recommends gluten be introduced to babies while breast-feeding to help prevent celiac disease. But Velasquez-Manoff pointed out it’s not clear exactly when during breastfeeding this should occur. This might confuse parents. Too early may be counterproductive, he said, and possibly cause celiac disease.
However, the society’s counterpart across the Atlantic, European Society for Paediatric Gastroenterology, Hepatology and Nutrition, provides specific guidelines. They recommend introducing gluten no earlier than four months and no later than seven.
“I think some of the ambiguity in the American Academy of Pediatrics may be intentional because they are not sure,” Velasquez-Manoff said. “There are ongoing prospective studies. Once we have the results we will know better.”
He also noted, as he did in the Times article, that “there is this added layer of complexity: all breast milk is not the same.”
A study last year in Pediatric Research reported breast milk from overweight mothers contained less bifidobacterium, a bacterial group beneficial to the baby’s developing microflora.
Velasquez-Manoff refers to a study by Yolanda Sanz of the Institute of Agrochemistry and Food Technology in Valencia, Spain, which found bifidobacteria were relatively depleted in children with celiac disease, while other microbes such as E coli. were over-abundant.
In the Times article, he explained, “In a test tube, (Sanz) found that those E. coli amplified the inflammatory response of human intestinal cells to gluten. But bifidobacteria switched the response from inflammation to tolerance.” E. coli also appears to provoke the leaky gut condition implicated in celiac disease while bifidobacteria protect the intestinal barrier.
Velasquez-Manoff suggested that there should be more focus on this where prenatal healthcare is available. Meanwhile, a 2010 paper in Pediatric Allergy and Immunology found better anti-inflammatory properties in breast milk from farm mothers than from women who lived in cities.
“In some ideal future,” Velasquez-Manoff said, “doctors will proactively approach these problems.”
They will identify the genetic risk for celiac disease in a family and advise the mother, while still pregnant, to shift the microbiology of her breast milk using probiotics. This may seem to put additional pressure on mothers to do the right thing, but Velasquez-Manoff said we cannot escape the importance of a mother’s nutrition.
“The idea is not to blame women,” he said, responding to some comments after the Times story accusing his article of faulting women. “What we have to do is shift society to accommodate biology. I agree that the answer should not be, ‘Women need to leave work and go back to the kitchen.’ That is absurd. We need instead to make it possible for women to do the healthy thing without having to disrupt their lives.”
Velasquez-Manoff said his wife’s experience breast-feeding is an example of some of the difficulties women face. Her employer provided a pumping room in a converted closet. Using the space was a hassle for her, he said, but at least she had somewhere to go. Many women do not.
Hookworms and celiac disease
Velasquez-Manoff also refers to a different prospect for defense against celiac disease, intriguing but less palatable: hookworms.
As Velasquez-Manoff describes it, hookworms prevent their host from letting “loose with a higher fire power,” which might kill the parasite but also destroy the gut. Intestinal parasites are so ubiquitous that vertebrate animals now depend on them to help manage their immunity.
In people with celiac disease, the immune system recognizes gluten as an invading bacteria or virus and begins attacking the gut lining. It is theorized that hookworms can prevent this by inducing a more tightly reined response, preventing autoimmune attacks.
A clinical study, published last year in International Journal for Parasitology, infected celiac disease patients on gluten-free diets with hookworms. Although the parasites did not cure anyone, they reduced the immune reaction when subjects ate food containing gluten.
Velasquez-Manoff said, “It was not anywhere near qualifying as remission” from celiac disease. However, it was measurable and led to a less-adverse reaction. In particular it meant people with an intense sensitivity to wheat would not have to worry about encountering “a few miniscule grains of wheat flour somewhere along the way. Some patients ended up opting to keep their parasites, because they felt better,” he added.
A personal journey
As part of the research for his book, Velasquez-Manoff inoculated himself with hookworms. He wanted to see if the parasite would relieve his food allergies, asthma, eczema and alopecia areata, a condition in which the body’s own immune system attacks hair follicles, causing partial or complete hair loss.
He had put up with symptoms since childhood but became more concerned when faced with becoming a parent. Alopecia areata shares gene variants with more serious conditions such as celiac disease and Type 1 diabetes. Velasquez-Manoff was bound to pass some of those genes on to his children, and he wanted to learn all he could to ensure their health. He found some compelling evidence, from both scientists and an underground movement of patients treating themselves, that hookworms could mollify autoimmune diseases.
He decided to try it at the same time he decided to write about it. It seemed like a good way of making “a very science-rich book more accessible” to readers, he said. He was also intensely curious. The people he contacted told him parasite infections were not bad to live with, but he wanted to gauge negative side effects for himself.
Coincidentally, a certain gene is also known to be connected with curiosity and daring behaviour, but Velasquez-Manoff does not consider himself a risk-taker. “A number of scientists have self-infected with hookworm, including John Croese [an Australian gastroenterologist investigating hookworm as a treatment for celiac disease]. Once you learn that scientists, with their wealth of knowledge about the horrors of parasite infection, are willing to self-infect, well, it seems not so risky,” he said.
The results of the author’s personal experiment with hookworms were mixed. He experienced relief from hay fever and eczema. His eyebrows started to grow back and his grooved and pitted fingernails, another symptom of alopecia areata, began growing in normally. Asthma and food allergies were unaffected. However, side effects of the hookworm infection, including cramps, diarrhea and headaches, were initially intense. They eventually settled to a more acceptable level, but the cure did not justify the treatment. Velasquez-Manoff said that eventually, after writing the book, he took a deworming drug. He does not recommend using hookworms to prevent autoimmune disease or allergies in children.
“Given my symptoms,” he concludes in the book, “I would never deliberately administer them to my daughter, for example. On the other hand, if I knew with any certainty that she was destined to develop Crohn’s disease and debilitating allergies, I might think differently.”
The long view
Studies tend to focus on prevention and development of celiac disease in children. Velasquez-Manoff said he did not find much research about what triggers its onset in adults. However, celiac experts recognize it may develop after surgery, antibiotic treatment or even pregnancy, he added.
Our lives appear to be over-sanitized. Generally, the research indicates that autoimmune diseases are increasing because germs and parasites are missing, according to Velasquez-Manoff.
Specifically, with respect to celiac disease, certain bacteria may prevent it. Breast-feeding can foster the right bacteria to protect babies against the disease. Ongoing research promises new insights about how probiotics and other lifestyle choices may contribute to a healthier gut. If these studies hold, Velasquez-Manoff said, they will change the way doctors treat celiac disease.
Meanwhile, his own journey continues. His daughter is now 2 years old. At the time of the interview, he was preparing to move from New York City to California with his family the following day.
“I will continue to cover this topic and think about a next book,” he said.
Van Waffle, who has a bachelor of science in biology, is a freelance journalist based in Guelph, Ontario, Canada, and has cooked gluten free for five years. He writes frequently for Gluten-Free Living. His work has also appeared in Edible Toronto and on cottagelife.com. He blogs about urban nature, local food and environmental issues at vanwaffle.com.