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Gluten, Grains, Seeds, and Nuts... and the link to inflammatory disease.




 Gluten, Grains, Seeds, and Nuts... and the link to inflammatory disease.

Dear Reader:

There has been increasing awareness of gluten sensitivity such that the latest health trend has been choosing gluten free products. It is not hard to find advertisements and entire sections in the grocery being devoted to the trend and it is curious to observe how the food industry is falling all over itself trying to capture their corner of the market.  The good news of all this is for the people people who are truly gluten sensitive to now find a variety of suitable foods in the grocery, without having to special order from the health food stores or bring a carry-in bag to the restaurant. It’s becoming mainstream!

Depending on the sources, there are some estimated 1-6% of people who are adversely sensitive to gluten to the degree it creates clinical symptoms of gastric inflammation, and for those people, avoiding gluten is a must. However, it seems to me that people who are otherwise avoiding gluten have been doing so because it is trendy and have had no real health reasons to do so … other than by avoiding gluten you also avoid much of the tasty treats that make up our common empty and excessive calories.  Few of  the trenders, it seems, have done any real research to determine why they should otherwise avoid the evils of wheat and its ilk.

Still… I am aware of no few people who have gone on the gluten free kick and, according to their reports, have never felt better!  Placebo perhaps. Perhaps a coincident more active awareness and selection of health promoting foods rather than empty starchy calories? Perhaps mind over matter? Hmmm…

In doing my own research, to be informed on the topic, and inspired by a patient who was seeking answers to his own health concerns, it has come to my awareness that not only gluten, but other proteins as well that that are found in all grains, beans, seeds, and nuts … may have a more insidious and pervasive role in many of the inflammatory disorders that seem to be becoming more common in our western life.

I am not saying that I am convinced that ages old wisdom of eating whole grains and beans and lentils, and wholesome seeds and nuts has been wrong and perhaps we ought to focus more on the fruits and leafy vegetables, and root veggies…. But it does have my attention.

The gist of it, is that proteins in seeds, which includes grains, nuts, and beans

I offer, therefore, several articles and sources that seem to me to a credible investigation into gluten intolerance, celiac disease, non-gluten celiac disease, general inflammatory diseases….. and why there may be some merit in a seed free diet

All credit to the originating authors and sources. If you like them… please investigate further.

Best regards,

Dr. Wayne Coghlan
Collingwood Chiropractor Clinic

Dr. Wayne Coghlan

Wayne Coghlan: A graduate of the University of Guelph School of Human Biology, and the Canadian Memorial Chiropractic College. I have further education in Sports Sciences, and completed a Master's degree in Counselling Psychology. Played varsity sports – rugby and football. Worked my way through school doing physical labour ... I know the realities of the work place. Gardening, canoe trips, being a good parent and member of our community.
Questions/Comments/To book and appoint:

or call me at  705 445-5401


"Gluten Sensitivity" May Be a Misnomer for Distinct Illnesses to Various Wheat Proteins 

Gluten may not be the only wheat protein that can make people sick

Feb 1, 2014

Two years ago, at the recommendation of a nutritionist, I stopped eating wheat and a few other grains. Within a matter of days the disabling headaches and fatigue that I had been suffering for months vanished. Initially my gastroenterologist interpreted this resolution of my symptoms as a sign that I perhaps suffered from celiac disease, a peculiar disorder in which the immune system attacks a bundle of proteins found in wheat, barley and rye that are collectively referred to as gluten. The misdirected assault ravages and inflames the small intestine, interfering with the absorption of vital nutrients and thereby causing bloating, diarrhea, headaches, tiredness and, in rare cases, death. Yet several tests for celiac disease had come back negative. Rather my doctors concluded that I had nonceliac “gluten sensitivity,” a relatively new diagnosis. The prevalence of gluten sensitivity is not yet clear, but some data suggest it may afflict as many as 6 percent of Americans, six times the number of people with celiac disease.


Although gluten sensitivity and celiac disease share many symptoms, the former is generally less severe. Compared with individuals with celiac disease, people with gluten sensitivity are more likely to report nondigestive symptoms such as headaches and do not usually suffer acute intestinal damage and inflammation. Lately, however, some researchers are wondering if they were too quick to pin all the blame for these problems on gluten. A handful of new studies suggest that in many cases gluten sensitivity might not be about gluten at all. Rather it may be a misnomer for a range of different illnesses triggered by distinct molecules in wheat and other grains.

“You know the story of the blind man and the elephant? Well, that's what gluten-sensitivity research is right now,” says Sheila Crowe, head of research at the gastroenterology division at the School of Medicine at the University of California, San Diego. As doctors continue to tease apart the diverse ways that the human body reacts to all the proteins and other molecules besides gluten that are found in grains, they will be able to develop more accurate tests for various sensitivities to those compounds. Ultimately clinicians hope such tests will help people who have a genuine medical condition to avoid the specific constituents of grains that make them ill and will stop others from unnecessarily cutting out nutrient-dense whole grains.

Seeds of Sickness
 

Among the most commonly consumed grains, wheat is the chief troublemaker. Humans first domesticated the wheat plant about 10,000 years ago in the Fertile Crescent in the Middle East. Since then, the amount of wheat in our diet—along with all the molecules it contains—has dramatically increased. Of all these molecules, gluten is arguably the most important to the quality of bread because it gives baked goods their structure, texture and elasticity. When bakers add water to wheat flour and begin to knead it into dough, two smaller proteins—gliadin and glutenin—change shape and bind to each other, forming long, elastic loops of what we call gluten. The more gluten in the flour, the more the dough will stretch and the spongier it will be once baked.
Until the Middle Ages, the types of grain that people cultivated contained far smaller amounts of gluten than the crops we grow today. In the following centuries—even before people understood what gluten was—they selectively bred varieties of wheat that produced bread that was lighter and chewier, inexorably increasing consumption of the protein. As technology for breeding and farming wheat improved, Americans began to produce and eat more wheat overall. Today the average person in the U.S. eats around 132 pounds of wheat a year—often in the form of bread, cereal, crackers, pasta, cookies and cakes—which translates to about 0.8 ounce of gluten each day.
Although historical records dating from the first century a.d. mention a disorder that sounds a lot like celiac disease, it was not until the mid-1900s that doctors realized the gluten in wheat was to blame. During World War II, Dutch physician Willem-Karel Dicke documented a sharp drop in the number of deaths among children with the severest forms of celiac disease in parallel with a bread shortage. In a follow-up study, researchers removed different components of wheat from the diet of 10 children with the intestinal illness. Adding back gluten caused symptoms such as diarrhea to resurface, but reintroducing a different complex molecule found in wheat, namely starch, did not. Thus, gluten was shown to be responsible for celiac disease.

Later experiments by other researchers revealed which component of gluten provokes the immune system. When digested, gluten splits back into gliadin and glutenin. For reasons that remain unclear, the immune system of people with celiac disease treats gliadin in particular as though it were a dangerous invader.

For years doctors used diet to diagnose the gut disorder: if someone's symptoms disappeared on a gluten-free diet, then that person had celiac disease. Over time, however, clinicians developed more sophisticated ways to identify celiac disease, such as tests that look for immune system molecules known as antibodies that recognize and cling to gliadin. With the advent of such tests, clinicians soon discovered that some people who became mildly ill after eating bread and pasta did not in fact have celiac disease: biopsies revealed little or no intestinal damage, and blood tests failed to find the same antibodies associated with the disorder. In the process, the new condition became known as nonceliac gluten sensitivity.

Now several studies hint that so-called gluten sensitivity might not always be caused by gluten. In some cases, the problem may be entirely different proteins—or even some carbohydrates. “We're so used to dealing with gluten as the enemy, but it might actually be something else,” says David Sanders, who teaches gastroenterology at the University of Sheffield in England. Joseph Murray, a gastroenterologist at the Mayo Clinic in Rochester, Minn., agrees: “I'm starting to feel more uncomfortable calling it nonceliac gluten sensitivity. I think it might be better to call it nonceliac wheat sensitivity.”

Against the Grain
 

If the culprits behind certain instances of gluten sensitivity are, in fact, wheat constituents other than gluten, finding the right ones will be difficult. Wheat has six sets of chromosomes and a whopping 95,000 or so genes. In comparison, we humans have just two sets of chromosomes and about 20,000 genes. Genes code the instructions to build proteins, so more genes mean more proteins to sift through. Some initial experiments have spotlighted a few potential offenders, however.

In laboratory tests, wheat proteins known as amylase-trypsin inhibitors have stimulated immune cells in plastic wells to release inflammatory molecules called cytokines that can overexcite the immune system. Further tests showed that these wheat proteins provoked the same inflammatory response in mice. Likewise, in an Italian study, small concentrations of wheat germ agglutinin, a protein distinct from gluten, roused cytokines from human intestinal cells growing in a plastic well.
Preliminary research suggests that, in other cases, by-products of gluten digestion may be the problem. Breaking down gliadin and glutenin produces even shorter chains of amino acids—the building blocks of proteins—some of which may behave like morphine and other soporific opiates. Perhaps these molecules explain some of the lethargy exhibited by people who do not have celiac disease but are nonetheless sensitive to wheat, suggests Aristo Vojdani, chief executive officer of Immunosciences Lab in Los Angeles. In a small study by Vojdani and his colleagues, the blood of people classified as gluten-sensitive had higher levels of antibodies that recognize these gluten by-products than blood taken from healthy volunteers.

A final group of potential culprits belongs to a diverse family of carbohydrates such as fructans that are notorious for being difficult to digest. A failure to absorb these compounds into the blood may draw excess water into the digestive tract and agitate its resident bacteria. Because these resilient carbohydrates occur in all kinds of food—not just grains—a gluten-free or wheat-free diet will not necessarily solve anything if these molecules truly are to blame.

No Piece of Cake
 

Despite the recent evidence that wheat sensitivities are more numerous and varied than previously realized, research has also revealed that many people who think they have such reactions do not. In a 2010 study, only 12 of 32 individuals who said they felt better on a diet that excluded gluten or other wheat proteins actually had an adverse reaction to those molecules. “Thus, about 60 percent of the patients underwent an elimination diet without any real reason,” notes study author Antonio Carroccio of the University of Palermo in Italy.

Nevertheless, uncovering nongluten agitators of illness will give doctors a more precise way to diagnose grain sensitivities and help people avoid certain foods. Researchers could, for example, design blood tests to look for antibodies that bind to various short chains of amino acids or proteins such as wheat germ agglutinin, explains Umberto Volta, a gastroenterologist at the University of Bologna in Italy. And some scientists think ongoing research will eventually yield new therapies. “If we know what triggers the immune system, we hope we can switch the system off and cure the disease,” says Roberto Chignola of the University of Verona in Italy.

Personally, I suspect that something besides gluten might trigger my own symptoms. On occasion, I have tried gluten-free grain-based products such as beer made from barley from which the gluten has been extracted. Every time my headaches came roaring back with a vengeance (far sooner than any hangover might have struck), making me all the more suspicious that gluten is not the root of my troubles.

If that is true, and there is even the remote possibility of safely reinstating gluten in my diet, I would really like to know. As a New Yorker, it is hard for me to forgo pizza. If gluten was vindicated in my case, perhaps I could add it to nongrain flours or otherwise cook up experimental pizza at home and get those gooey, stretchy slices out of my dreams and onto my plate.
This article was originally published with the title "The Trouble with Gluten."

 

Health Canada                

Celiac Disease


Celiac disease or gluten-sensitive enteropathy is an inherited condition triggered by the consumption of cereal grains containing "gluten". Simply put, the immune system of a celiac reacts negatively to the presence of gluten in the diet causing damage to the inner lining of the small bowel which reduces the person's ablility to absorb nutrients including: iron, folate, calcium, Vitamin D, protein, fat and other food compounds. The grains considered to be capable of producing negative effects in individuals with celiac disease include the different species of wheat (e.g., durum, spelt, kamut), barley, rye, and their cross-bred hybrids (e.g., triticale, which is a cross between wheat and rye). Currently the only treatment for celiac disease is to continually maintain a strict gluten-free diet. This disease affects nearly 1% of the population.

Closely related family members of celiacs have a greater risk of developing the disease. However, not all individuals carrying the genes identified with this disease will develop the disease. Therefore, other genetic and environmental factors have also been implicated in its development.
The symptoms of celiac disease vary greatly from one person to another both in extent and seriousness, making diagnosis difficult. Infants and children more often display symptoms of diarrhea and abnormal stretching of the abdomen. They could also show symptoms of malnutrition such as short stature, anemia (weakness or low stamina), defects in teething, failure to thrive, or in developmental delay. In adults, gastrointestinal complaints are common and include abdominal pain, flatulence, and diarrhea. Weight loss is most common, but symptoms of weight gain and constipation are not unheard of. Only some individuals with celiac disease suffer typical gastrointestinal symptoms, while others may display no visible symptoms. Further symptoms vary and can include mouth ulcers, extreme fatigue, bone pain and others. A serious skin condition (called dermatitis herpetiformis) that results in an itchy rash with bumps and blisters is sometimes a result of this disease. This condition is linked to gluten sensitivity, and skin biopsy (sampling and testing) is usually performed to confirm diagnosis.

Other conditions associated with celiac disease include type 1 diabetes, down syndrome, thyroiditis, arthritis, ataxia, depression, and neuropathy.

If celiac disease is diagnosed early and treated with a gluten-free diet, the damaged tissues can heal and the risk of developing many of the long term complications of this disease, including osteoporosis (a weakening of the bones), lymphoma (tumors arising in the lymph nodes), and infertility can be reduced.

Diagnosis

In recent years, an improvement in the overall level of awareness about celiac disease and associated conditions has allowed individuals and health professionals to better suspect and screen for celiac disease. This is particularly true for those groups at high risk.
Celiac disease can be diagnosed through a combination of:
  • Blood tests
  • Small-bowel biopsy
  • Recovery from the symptoms while following a gluten-free diet
Small-bowel biopsy remains the 'gold standard' test for celiac disease detection. Testing for the disease should take place before an individual starts a gluten-free diet, since removal of gluten from the diet would interfere with a practitioner's ability to detect the disease. After 6 to 12 months of maintaining a strict gluten-free diet, symptoms should disappear, blood tests for the disease should become negative, and any small bowel injury should heal completely. It will be important for celiac patients to regularly follow up with their family doctor on their progress in treating the disease.

For more information on celiac disease

Some of the hyperlinks provided are to sites of organizations or other entities that are not subject to the Next link will take you to another Web site Official Languages Act. The material found there is therefore in the language(s) used by the sites in question.
Other Information

National Foundation for Celiac Awareness

Non-Celiac Gluten Sensitivity

http://www.celiaccentral.org/non-celiac-gluten-sensitivity/

Your blood test for celiac disease came back negative. Now what?


If you have been suffering symptoms that seem related to gluten, it may be possible that you have non-celiac gluten sensitivity.

Research estimates that 18 million Americans have non-celiac gluten sensitivity. That’s 6 times the amount of Americans who have celiac disease.

Researchers are just beginning to explore non-celiac gluten sensitivity, but we’d like to educate you on what we’ve learned thus far. Follow NFCA as we present a series of Q&As on non-celiac gluten sensitivity throughout 2012.

Part 1: Introduction and Definitions

Includes answers to:
  • What is non-celiac gluten sensitivity?
  • What is an innate immune response?
  • What are the symptoms of non-celiac gluten sensitivity?
  • If the symptoms are so similar, how is it different from celiac disease?
  • Is non-celiac gluten sensitivity different from a wheat allergy?
This Q&A was designed to help you better understand non-celiac gluten sensitivity and what sets it apart from celiac disease and wheat allergies.

What is non-celiac gluten sensitivity?

Non-celiac gluten sensitivity has been coined to describe those individuals who cannot tolerate gluten and experience symptoms similar to those with celiac disease but yet who lack the same antibodies and intestinal damage as seen in celiac disease. Early research suggests that non-celiac gluten sensitivity is an innate immune response, as opposed to an adaptive immune response (such as autoimmune) or allergic reaction.

OK, so what is an innate immune response?

Humans are born with an innate immune system. An innate immune response is not antigen specific, meaning that it is nonspecific as to the type of organism it fights. Although its response is immediate against invading organisms,  the innate immune system does not have an immunological memory to invading organisms. Its response is not directed towards self tissue, which would result in autoimmune disease.

Unlike non-celiac gluten sensitivity, celiac disease is antigen specific (including tissue-transglutaminase, endomysium and deamidated gliadin antibodies, and in some small children also gliadin antibodies) and does result in an attack on its own tissue. Intestinal damage, or enteropathy, is the direct result.

What are the symptoms of non-celiac gluten sensitivity?

Non-celiac gluten sensitivity shares many symptoms with celiac disease. However, according to a collaborative report published by Sapone et al. (2012),  individuals with non-celiac gluten sensitivity have a prevalence of extraintestinal or non-GI symptoms, such as headache, “foggy mind,” joint pain, and numbness in the legs, arms or fingers. Symptoms typically appear hours or days after gluten has been ingested, a response typical for innate immune conditions like non-celiac gluten sensitivity.

If the symptoms are so similar, how is it different from celiac disease?

Non-celiac gluten sensitivity has been clinically recognized as less severe than celiac disease. It is not accompanied by “the enteropathy, elevations in tissue-transglutaminase, endomysium or deamidated gliadin antibodies, and increased mucosal permeability that are characteristic of celiac disease” (Ludvigsson et al, 2012). In other words, individuals with non-celiac gluten sensitivity would not test positive for celiac disease based on blood testing, nor do they have the same type of intestinal damage found in individuals with celiac disease. Some individuals may experience minimal intestinal damage, and this goes away with a gluten-free diet.
Research has also shown that non-celiac gluten sensitivity does not result in the increased intestinal permeability that is characteristic of celiac disease. Increased intestinal permeability permits toxins, bacteria and undigested food proteins to seep through the GI barrier and into the bloodstream, and research suggests that it is an early biological change that comes before  the onset of several autoimmune diseases.

Is non-celiac gluten sensitivity different from a wheat allergy?

Yes. Allergies, including those to wheat, are associated with positive IgE assays. Diagnosis is made through skin prick tests, wheat-specific IgE blood testing and a food challenge. Individuals who have gluten-related symptoms but test negative for a wheat allergy may have non-celiac gluten sensitivity.

Related Content:

Part 2: Testing and Diagnosis

Includes answers to:
  • How can I get tested for non-celiac gluten sensitivity?
  • I’m already gluten-free and I feel much better than I did when eating gluten. Can I just assume that I have non-celiac gluten sensitivity?
  • Are there any dangers to a false diagnosis of non-celiac gluten sensitivity?
In matters of emerging conditions like non-celiac gluten sensitivity, it’s best to go directly to the physicians and scientists on the front lines of investigation. Last month NFCA did just that.

During the May webcast “State of the Union: A Live Chat with Gluten-Related Disorders Experts,” Doctors Stefano Guandalini and Alessio Fasano spoke openly about what we know and what we don’t know about non-celiac gluten sensitivity, including the process of diagnosis. Notably, Dr. Guandalini explained that a biological marker for non-celiac gluten sensitivity does not currently exist and also spoke about the importance of a patient’s medical history when considering this diagnosis.

For an explanation on where the field stands with how this newly coined condition is diagnosed, listen to Dr. Guandalini, beginning at minute marker 3:40. You can also read a transcript of this discussion, beginning on page 2.

After listening to Dr. Guandalini, read the FAQs below for a further discussion on testing  and diagnosis of non-celiac gluten sensitivity.

How can I get tested for non-celiac gluten sensitivity?

Currently, there are no recommended methods to test for non-celiac gluten sensitivity. Some doctors offer saliva, blood or stool testing. However, these tests have not been validated and are therefore not accepted.  
In NFCA’s webcast, Dr. Guandalini states:

“As a matter of fact, right now, they are to say that there is absolutely no biological readout that is no way can this diagnosis can be supported by any laboratory investigation. No antibodies in the blood are specific enough, or sensitive enough, for this condition. No antibodies in the stools can be utilized to diagnose or screen for this condition.”

Dr. Fasano also touched on this topic and stated that his team is currently conducting research to identify biomarkers that may help to test for and diagnose non-celiac gluten sensitivity:

“…as Dr. Guandalini explained when the only way to make a diagnosis of gluten sensitivity is by exclusionary criteria since we do not have tests that will point in that direction. And that’s where our current efforts are all about. Now that we understand that it is a different entity we want to make sure that we can eventually identify the biomarkers for this condition, and we’re doing a double blind study to identify the biomarkers that will eventually fill the gap that Dr. Guandalini was alluding to.”

For a recap of Dr. Fasano’s discussion, begin listening at minute marker 16:54. You can also read a transcript of this discussion, beginning on page 5.

So, how do I get diagnosed?

Non-celiac gluten sensitivity is diagnosed by process of exclusion. Experts recommend that you first get tested for a wheat allergy and for celiac disease. If both of those are negative, then your doctor may recommend a gluten elimination diet. If symptoms improve on a gluten-free diet, then you likely have non-celiac gluten sensitivity.

It is very important that a knowledgeable physician oversee this entire process, which can help to omit patients self-diagnosing themselves and to reduce the likelihood of a placebo effect occurring during dietary intervention.

I’m already gluten-free and I feel much better than I did when eating gluten. Can I just assume that I have non-celiac gluten sensitivity?

It is possible that you have celiac disease and not non-celiac gluten sensitivity. But because celiac disease is a lifelong condition requiring strict adherence to a gluten-free diet and proper management by a knowledgeable physician, it is important that an accurate diagnosis is made. Additionally, if you have celiac disease, it is important to confirm the diagnosis, as your family members could be at risk for the disease and may not know it.
One option is to talk to your doctor about genetic testing for celiac disease. A negative gene test would rule out celiac disease, but a positive gene test may mean that more testing is needed. Another option is to talk to your doctor about possibly going back on a gluten-containing diet for a period of time in order to confirm whether or not you have celiac disease, a wheat allergy, or non-celiac gluten sensitivity.

Most importantly, you should always remember to talk to your doctor about your symptoms and health concerns before beginning treatment of any kind on your own. Starting a gluten-free diet before being properly tested can complicate the diagnostic process. A knowledgeable healthcare provider will be able to help navigate the testing for and diagnosis of a gluten-related disorder.

Are there any dangers to a false diagnosis of non-celiac gluten sensitivity?

The below response comes from Daniel Leffler, MD, MS, Director of Clinical Research, The Celiac Center at BIDMC, Director of Quality Assurance, Division of Gastroenterology, Beth Israel Deaconess Medical Center following the December 2012 webinar, "You Ask, We Answer: 60 Minutes with Top Celiac Disease Researchers."

Since the only treatment for NCGS is a gluten-free diet, as long as you receive proper nutritional counseling and keep a healthy balanced diet, there is no danger to this treatment. However, it is important to recognize that many gastrointestinal diseases present with similar symptoms, so the real danger is that in assuming a person has NCGS, they are not evaluated appropriately and a more serious illness is missed and allowed to progress untreated.

Part 3: Family and Related Conditions

Includes answers to:
  • Does having a family member with celiac disease make you more susceptible to non-celiac gluten sensitivity?
  • If I have non-celiac gluten sensitivity now, does that mean I would develop celiac disease if I continued to eat gluten?
  • Are there any conditions that appear to be related to non-celiac gluten sensitivity?
There are a lot of unanswered questions about non-celiac gluten sensitivity, so we contacted Stefano Guandalini, MD, Medical Director for the University of Chicago Celiac Disease Center, to tell us what early research has or has not uncovered about this condition.

Does having a family member with celiac disease make you more susceptible to non-celiac gluten sensitivity?

Although there are no published data yet, the experience of many of those who work on celiac disease is that indeed there appear to be clusters of cases of non-celiac gluten sensitivity and celiac disease in the same families. My experience is the same.

If I have non-celiac gluten sensitivity now, does that mean I would develop celiac disease if I continued to eat gluten?

We really don't have data to answer that. Once we know exactly what triggers non-celiac gluten sensitivity, we'll be able to answer that question. A helpful thing however would be to get tested for the celiac genes: if absent - while you certainly may still be gluten sensitive - you won't  stand a chance of becoming celiac.

Are there any conditions that appear to be related to non-celiac gluten sensitivity?

We simply don't know enough about non-celiac gluten sensitivity to answer that. So far, the only known symptoms/signs associated (in addition to IBS-like ones) are fatigue, headaches and "foggy mind".

Part 4: Future Areas for Research

Includes answers to:
  • Does having non-celiac gluten sensitivity increase your risk of developing other autoimmune disorders?
  • We know that peripheral neuropathy can be associated with celiac disease. Is there a similar relationship between non-celiac gluten sensitivity and other neurological conditions?
  • When will we know more about the long-term complications of non-celiac gluten sensitivity (NCGS)?

Autoimmune and Neurological Conditions

Research has found that celiac disease is associated with other autoimmune disorders and neurological conditions like headaches and peripheral neuropathy. When it comes to non-celiac gluten sensitivity, very little is known about if and how it may relate to these conditions.

During NFCA’s webinar “You Ask, We Answer: 60 Minutes with Top Celiac Disease Researchers,” the expert panelists provided an update on what we do and do not know about non-celiac gluten sensitivity, and what they expect research to uncover. The responses below have been either transcribed from statements by Dan Leffler, MD, MS, of the Celiac Center at Beth Israel Deaconess Medical Center in Boston, and Joseph Murray, MD, of the Mayo Clinic in Rochester, MN or responded to following the webinar, as there were unanswered questions  during the live programming due to a lack of time.  This is indicated in each question.

Does having non-celiac gluten sensitivity increase your risk of developing other autoimmune disorders?

Dr. Leffler: (transcribed) We don’t know 100%, but I would say that the fact that it doesn’t appear to share the genetic predisposition for celiac disease (that HLA-DQ2 and DQ8 which seem to be autoimmune predisposing), suggests that [non-celiac gluten sensitivity] is not likely to be as associated, if at all, with other autoimmune conditions. And I think, again, there’s been very little work done in this area, but the little work that has been done sort of suggests this as well – that there’s not an increased risk of autoimmune diseases in the non-celiac gluten sensitivity picture, but I think that clearly this is still a work in progress.

[During the webinar, a spot poll revealed that 8% of attendees reported having non-celiac gluten sensitivity and an autoimmune disorder. Dr. Leffler was asked to address this.] Dr. Leffler: Autoimmune conditions of various sorts are pretty common in the general population, thyroid disease being the most common. But if you add them all up, 5-10% of the general population will have some autoimmune disease, so the 8% of people in the audience with non-celiac gluten sensitivity really is about population level.

We know that peripheral neuropathy can be associated with celiac disease. Is there a similar relationship between non-celiac gluten sensitivity and other neurological conditions?

Dr. Leffler: (transcribed) In terms of the other gluten-related disorders, especially gluten sensitivity and peripheral neuropathy, I think that’s just a complete black box. We don’t really know anything about if or how gluten sensitivity may be related to neurological manifestations.

Dr. Murray: (transcribed) Non-celiac gluten sensitivity and its relationship to these other entities is I would say scientifically unproven though highly suspected.  Gluten ataxia could be one where there’s a little more data to support than the others, though I think as Dr. Leffler pointed out, we don’t know what the nature of the association is. And by association doesn’t imply causation. It could easily be that someone has an injury to their brain or immune system may see that react in a way that looks like a reaction to gluten, but it may not be primarily caused by gluten. So these are very difficult issues.

The question was answered via e-mail to address the remaining questions from the live webinar airing.

When will we know more about the long-term complications of non-celiac gluten sensitivity?

Dr. Leffler: (post webinar) Since non-celiac gluten sensitivity only began being diagnosed recently, and there are no blood tests for this condition, it is impossible to look at people who had this condition many years ago, as we can with celiac disease.  This means that it will take many more years before we are likely to have good data on long-term complications of non-celiac gluten sensitivity.  On the other hand, in most other conditions including celiac disease and inflammatory bowel disease, long term complications are linked to a degree of inflammation. Since there appears to be minimal if any inflammation in non-celiac gluten sensitivity, it is likely that long-term complications are minimal as well.

Visit NFCA’s Webinar Archives to listen to the full recording.

A couple more sources worth investigating…. 

This one is an excellent primer on the whole story!  Ji, Sayer. “The Dark Side of Wheat: New Perspectives on Celiac Disease & Wheat Intolerance.” Journal of Gluten Sensitivity. Santa Rosa: www.celiac.com, 2008. http://www.greenmedinfo.com/page/dark-side-wheat-new-perspectives-celiac-disease-wheat-intolerance-sayer-ji. (October 2012).

Sollid, L.M., J. Kolberg, H. Scott, J. Ek, O. Fausa, P. Brandtzaeg. “Antibodies to Wheat Germ Agglutinin in Coeliac Disease.” Clinical & Experimental Immunology  Hoboken:  Wiley-Blackwell Publishing 1986. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1577348/. (November 2012).


 
 

MacLean's Magazine: 

The dangers of going gluten-free

It’s the biggest health craze of our time, though some doctors fear it’s creating real problems. (Even the Wheat Belly guru is worried)
by Cathy Gulli on Tuesday, September 10, 2013 7:00am - 113 Comments
Liam Mogan

The first time Margaret Dron organized the Gluten Free Expo early last year, it was inside the gymnasium of a small community centre in east Vancouver. She had recruited one volunteer, two speakers, 38 vendors and expected 500 attendees. There was no entrance fee—instead, people were to bring gluten-free goods for the local food bank; three boxes were set aside for the collection. Six hours later, more than 3,000 people had turned out, and the volunteer had to call a one-tonne truck to pick up the donations. In one Sunday afternoon, Dron realized, “there is some serious potential here. So I quit everything I had, got an extension on my mortgage, and just dove in.” Since then, “it has blown up.”

That is to say, the Gluten Free Expo is now an annual affair in Toronto and Calgary, besides Vancouver. Next year, Edmonton and Ottawa will join the roster. About 10,000 people attend each weekend-long event, which is usually held inside a 60,000-sq.-foot convention centre. “And that’s getting tight,” says Dron. More than 200 vendors sell their offerings, mostly food items but also skin-care products and nutritional supplements—all made without gluten, a protein found in wheat, barley and rye, and blamed for many digestive problems. Food donations are still accepted, but a $12 to $15 entrance fee has been implemented. “It’s gone from me begging [for] volunteer speakers to chefs and authors from all over North America requesting to come out,” says Dron. “It’s amazing.”


“Amazing” meaning lucrative, of course. Gluten-free products are a $90-million enterprise in Canada alone, and the sector is expected to grow at least 10 per cent each year through to 2018—an astounding feat for what is primarily a food-based category. In the United States, the market is valued at $4.2 billion and climbing. A landmark study by researchers at Dalhousie University in Halifax, published in the Canadian Journal of Dietetic Practice and Research in 2008, revealed that gluten-free foods were, on average, 242 per cent more expensive than their “regular” counterparts, and up to 455 per cent pricier in some cases. “If I was to manufacture a product,” says Dron, “there is no way that I would not have a gluten-free option in today’s day and age.”

Manufacturers are getting the message—and not just small fringe businesses, but behemoth multinational corporations, too. Kellogg’s revamped its Rice Krispies recipe, first concocted in 1927, by removing barley malt (the source of gluten in the original) from its gluten-free version so it could advertise as a cereal “that’s easy for kids to digest.” Campbell Company of Canada claims to be the “first mainstream brand” to feature a gluten-free symbol on its soups and chilies. Tim Hortons hailed the introduction of a gluten-free menu item in mid-July—a chewy coconut macaroon drizzled with milk chocolate—as nothing short of a “defining moment in our Canadian dining history.” Wal-Mart Canada started selling gluten-free goods online this summer and offers free shipping no matter the order size. “They want to be the Amazon.com of gluten-free,” says communications specialist Tricia Ryan, who founded the Gluten-Free Agency in Toronto last August to help companies market their new products.
Business is booming for her, too, as the variety of products expands far beyond the oxymoronic “gluten-free pasta” and “gluten-free bread” lines. Items that consumers might never even think of as containing gluten are being tweaked, or at least rebranded, to meet the demand: soy sauce, salad dressings, potato chips, hot dogs, veggie burgers, licorice, pickles, spices, beer, vodka, toothpaste, makeup, protein powders, medicine, even playdough. Indeed, nothing is so sacred it can’t be reworked. Canadian churches can now purchase gluten-free or low-gluten Eucharistic wafers: $22.95 for 100 pieces.

With all these products, one might assume the need for gluten-free items is epidemic in Canada, that without them a public health crisis could emerge. In reality, the explanation for the recent explosion in demand is a spectacular mix of real medical concerns, changing views on what accounts for a healthy diet, savvy marketing and celebrity influence. Sports stars Steve Nash and Novak Djokovic insist going gluten-free has turned them into the finest and leanest athletes in the world. Public health messages have shifted focus from low fat and sugar-free to low-carb, partly to stave off rampant obesity. And the best-selling book Wheat Belly, by American cardiologist William Davis, published in 2011, has convinced millions to stop eating, as the author puts it, “a perfectly crafted Frankengrain” that “has exerted more harm than any foreign terrorist group can inflict on us.”

In the midst of this frenzy, it’s easy to forget the fact that only a tiny segment of the Canadian population is strictly prohibited from eating wheat by medical professionals—the roughly 35,000 people diagnosed with celiac disease. Another 300,000 are believed to be afflicted but undiagnosed. Their plight is severe: Just one bite of a glutenous food damages their small intestine and can cause a range of symptoms including abdominal pain, gas, bloating, diarrhea and constipation. The disease can lead to problems including “osteoporosis, anemia, sterility, even carcinoma,” says Peter Taylor, executive director of the Canadian Celiac Association. For them, “every day, every meal, every mouthful” is a matter of sickness or health.

But they are a small lot, certainly “not enough to make a business,” says Ryan. Rather, it appears that the gluten-free craze is being fuelled by the dietary choices of a much larger group of individuals known as “gluten avoiders”—seven million strong in Canada alone, the majority of whom do not have celiac disease or any other medically prescribed reason for eliminating gluten from their diet. Many say they experience gut problems, but their doctors can’t explain why or what to do about it. Some of these individuals turn to blogs and books for guidance on how to go gluten-free. In the process, they may learn of other rumoured benefits: weight loss, chief among them. They share their story with family, friends and co-workers, who in turn try going gluten-free, too. It’s for this crowd that the market grows. The gluten avoider group “is the driver for the gluten-free category,” says Ryan. “It’s the one that substantiates businesses making [these products].”

It’s also the segment of the population that has an increasing number of doctors across Canada confused and worried about the possible dangers of patients going gluten-free without talking to a health professional first. Gluten avoiders may spend money on foods that they don’t really need to eat, that may actually be lacking nutrition and causing them other problems. They may also miss out on important diagnoses, especially if they do have celiac disease and aren’t tested. All this has led doctors to debate in the pages of scientific journals and even out loud: Is Canada facing a new medical emergency about which little is yet understood or is this just the latest health fad gone wild? And most importantly, are gluten avoiders doing themselves more harm than good?

Long before he became the head of the celiac association, Peter Taylor knew all about the torture that gut problems could inflict. For five years, he suffered seemingly inexplicable bowel pain and a terrible skin rash, which he could not cure. He lost 40 lb., because, Taylor later realized, his body couldn’t process his “carb-rich diet.” When his family physician learned of his symptoms, an assortment of possible causes was considered, including irritable bowel syndrome, gall bladder trouble and an ulcer. It wasn’t until a year and a half later that celiac disease came up, and was finally diagnosed. (It’s done using a simple blood test; if a particular antibody is detected, a biopsy is done to confirm bowel damage. This is covered in every province, except Ontario, where the blood work costs about $120.) Within three months of eliminating gluten, his symptoms disappeared. “The irony,” says Taylor, recalling his frustration at how long it took to figure out, “is that my doctor at the time was a celiac.”

However vexed Taylor felt, his experience was resolved pretty quickly by comparison: It takes, on average, a stunning 12 years for patients to be diagnosed with celiac disease from when they first start feeling sick, according to a study in a recent issue of the Canadian Journal of Gastroenterology. That’s largely because the symptoms are so ubiquitous they could hint at any number of disorders. “Gut problems are actually the most common symptoms the population has,” says Mohsin Rashid, a pediatric gastroenterologist and professor at Dalhousie, who co-authored the gluten-free cost comparison study. “That’s why celiac disease is underdiagnosed,” adds Taylor. “It’s masked by the perception that it’s something else.” In fact, “essentially two out of three Canadians every year will have some sort of digestive problem,” says Catherine Mulvale, executive director of the Canadian Digestive Health Foundation, and many don’t know what’s wrong. “Because they can’t get answers, they are scared.”
In the absence of a definitive diagnosis from their doctors, these individuals invariably take matters into their own hands. That usually involves cutting out foods that have been popularly vilified—especially grains. Often, people perceive an improvement in their symptoms, says Rashid, and return to the doctor’s office to confirm that gluten is the problem. Except now, diagnosing celiac disease is all but impossible: A patient must consume gluten every day for at least a couple of months or even up to a year before getting tested. As such, some people are wrongly informed that they don’t have the disease. Others refuse to start eating gluten again so they can be tested accurately—they feel their personal experiment is evidence enough of a gluten problem. “That’s a big pitfall,” says Rashid. “All gastroenterologists are seeing this phenomenon, and family doctors too.”

This disconnect between doctors and patients about who should go gluten-free and when prompted a sharply worded article in the April issue of the B.C. Medical Journal entitled, “Gluten elimination diets: facts for patients on this food fad.” Co-authors Kathleen Cadenhead and Margo Sweeny, both Vancouver physicians and members of the British Columbia Medical Association’s nutrition committee, note that, “Wheat, and gluten in particular, has been given pariah status by the millions who are on the low-carb diet bandwagon, particularly those who believe they are allergic or sensitive to gluten.” But, they insist that “there is no need for patients to avoid gluten” or wheat unless they’ve been diagnosed with celiac disease or an allergy because, the doctors argue, “most of the evidence against wheat or gluten is unsubstantiated by science.”

The article ignited a fiery debate. “I did push some buttons in writing this,” admits Cadenhead, but “we were trying not to be wishy-washy and say, ‘Look . . . the evidence is not there yet.’ ” Specifically, when it comes to a new medical phenomenon that’s being called “non-celiac disease gluten intolerance” or gluten sensitivity. Within the last five years or so, a handful of studies have proposed the emergence of this condition, which may affect as many as two million Canadians. They are thought to experience the same symptoms as celiacs after eating gluten. The trouble is diagnosing it; to date, there is no test that can detect gluten sensitivity. Rather, patients may consider themselves to have the condition if they have tested negative for celiac disease or a wheat allergy, or if they simply “feel better” or symptom-free when they don’t eat gluten.

Given how little is understood about gluten sensitivity, many doctors are hesitant to bring it up with patients, and some even question whether the condition is real. “We are describing a disease that is new altogether. It’s very difficult,” says Rashid. “We don’t know whether it’s a permanent thing; maybe it’s transient. Maybe it’s a dose-related phenomenon, [so] you can take some gluten. [There are] a lot of unknowns.” There is even suspicion that a “placebo effect” may be at play, adds Vincci Tsui, a registered dietitian in Calgary. “Because when people do switch over to a gluten-free diet, a lot of times it does mean eliminating fast foods, processed foods, refined grains, or it means cooking at home more often, eating more vegetables and fruits,” she explains. “They feel better and they think it is the [avoidance of] gluten when really it may be the fact that they are eating better in general.”

The notion that gluten avoiders are eating more whole foods and cooking healthy meals is really a best-case scenario, though. Many medical professionals are actually seeing eating habits take a turn for the worse once individuals avoid gluten. That’s because they are relying on processed gluten-free foods that often lack important vitamins, minerals and fibre, and are made with substitute starches such as rice and tapioca flour that “really have no nutritional value at all,” says Dron. “But they have really high glycemic indices.” In fact, a forthcoming study examining the nutritional content of gluten-free foods by Rashid found that these products may be higher in fat and lower in protein than their “regular” counterparts. “We have a tendency to think that gluten-free is healthier,” says Meghan Walker, a naturopathic doctor in Toronto. “And that is certainly not the case.” In fact, “a lot of people put on weight when they go on a gluten-free diet,” says Rashid.

Further complicating matters is the fact that “most people who think they’re on a gluten-free diet aren’t, unless they’ve really done their research,” says Cadenhead. “If they’re just avoiding pasta and bread,” that’s not enough. “Gluten is in almost everything.” It may be used as a thickener or stabilizer in soups, spreads and sauces, for flavouring in cereals or noodles, spices, teas and coffees, or as filler in processed meats, imitation seafood or vegetarian substitutes. Reading labels may not always make the presence of gluten obvious, either. It may appear in Latin as triticum vulgare or hordeum vulgare or secale cereale. Or the label may feature ingredients that people don’t realize contain gluten, including bulgur, couscous, farina, malt and seitan. Gluten “can be modified to give you all kinds of different properties,” explains Ravindra Chibbar, Canada Research chair in crop quality and a professor at the University of Saskatchewan in Saskatoon. “It is a readily available, inexpensive component and industry want to get their money’s worth. That is why people are working to get more and more products out of gluten components.”

That makes good business sense, of course. But it may not serve customers so well—those who don’t realize that they’re consuming gluten, or those who are buying gluten-free foods that are poor substitutes. The whole situation makes doctors such as Cadenhead shudder. “Whenever you see nutritional issues being heavily marketed, it makes me want to protect people from being ripped off,” says Cadenhead. “I would like people to be obtaining the best nutritional value for their food dollar.” Unbeknownst to many gluten avoiders, that may not be happening.

One of the most baffling aspects of the gluten-free phenomenon is how much influence a singular book has had on the diets of so many people. Wheat Belly has been heavily criticized by scores of physicians and lauded by many, many more gluten avoiders as proof their dietary restraint is justified. The irony, however, is that William Davis detests his new-found role as poster boy for the gluten-free food industry—and actually discourages people from buying these products because of their low nutritional value. “This has nothing to do with gluten,” he tells Maclean’s. Instead, he takes issue with how wheat has been grown, and altered through hybridizations over the last several decades, which he believes is harmful to human health. “If we view wheat as nothing more than a vehicle for gluten we are not going to understand all the issues that are important about modern wheat.”

It’s a highly inflammatory view, and crop experts such as Chibbar insist it is without merit. Hybridization means “you take one plant that has a feature you like, you cross it with another one and you get a progeny that has characteristics that you want,” he explains. “It has been going on for tens of thousands of years. It happens with all the crops, it’s not just wheat.” Others, such as Earl Geddes, CEO of the Canadian International Grains Institute, argue that consumers are missing the real problem with the country’s food supply: “Here in Canada we go to the grocery store once a week and we want to buy something that will sit in our cupboard for a week and still be good,” he says. “That’s got nothing to do with the wheat that’s in the product. That’s all the other stuff that we as consumers have insisted gets put into the product.”

While experts debate to what extent the war on wheat is warranted, millions of Canadians are struggling with debilitating gastrointestinal symptoms. Whatever the cause, their pain can’t be ignored or downplayed, says naturopath Walker. “If people articulate that they don’t feel well on a type of food and that is dismissed, I think there is a real danger that they will wind up with chronic issues,” she says.
But there are signs that the situation may be improving for gluten avoiders. Dron notes that an increasing number of manufacturers have heeded calls for healthier gluten-free options, and are launching nutrient-rich products such as quinoa pasta. And at an international celiac symposium in Chicago in September, Rashid will present his latest cost-comparison study, which shows that gluten-free foods are equalizing in price with regular foods—they are now 162 per cent more expensive, on average, rather than 242 per cent. He believes more competition in the market has driven down cost.

In this way, the more gluten avoiders demand information and options for themselves from doctors and manufacturers, the better their prospects for a healthy future. It just won’t happen overnight. “All kind of questions are coming about for which we really don’t have good answers,” says Rashid. “Our problem is people going [gluten-free] without being properly counselled or checked out. It becomes problematic.” He wants patients to request celiac testing before starting this new diet. “It will take some time to sort this out,” he acknowledges, and sometimes “patients can’t wait. They want to get better.” But they may, in fact, make matters worse.
 
 
 
 

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