Gluten, Grains, Seeds, and Nuts...
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 an estimated 1-6% of people who are adversely sensitive to gluten to the degree it creates clinical symptoms of gastric inflammation (celiac disease), and for those people, avoiding gluten is a must. Another estimate suggests that 1 in 7 people are adversely affected by gluten, to some degree. What may be "some degree" is rather poorly defined. Skeptics will argue that people avoiding gluten are 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. Believers implicate gluten intolerance for almost any and all ills.
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 coincident with 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 as my understanding is evolving, is that proteins in seeds, which includes grains, nuts, and beans have a tendency to irritate and inflame the lining of the gut. The worst of this shows up in celiac disease which is a gross intolerance if not allergic reaction to the gluten found in higher proportions in wheat and some other grains. However, even without the obvious symptoms of celiac disease, the low grade irritation of the gut continues. The lining of the gut becomes "leaky" and instead of absorbing only the digested remains of fats (fatty acids), carbohydrates (sugars), and protein (amino acids)... the gut absorbs or allows to pass into the blood stream increasing more complex short chain proteins. Just as a sliver in your skin creates an immune response - inflammation, soreness, puss, redness, swelling - to neutralize the foreign invader, complex foreign molecules in the blood stream create a similar immunological response. The response may be systemic to the body or an organ system - gut (chron's) , respiratory (ashtma), skin (psoriasis) - or as a localized lesion (excess inflammation around an arthritic joint, granulomas in the skin). The process has been implicated in some forms of neuropathy and Alzheimer's.
A WORD OF CAUTION - For the person desperately seeking an answer to some health issue that can at best be managed by medications that are less than effective and/or have unpleasant side effects, there is a natural tendency to take a bit of hope and apply to any and all ills. A LITTLE KNOWLEDGE CAN BE A DANGEROUS THING.
There is much information, yet worse, misinformation on the internet from people who ought to know better, or don't know any better... or are somewhat devious. This post in not intended to be a comprehensive and authoritative review. Rather, it is my efforts to raise awareness and help guide the reader toward their own study.
As with trans-fatty-acids (TFA), which were once considered innocuous and people raising concerns were considered on the fringe of good sense... and now is seems that TFAs are close to being outlawed .... our collective awareness and validation of the hidden ills seeds MAY become mainstream.
FOR THE DESPERATE or CURIOUS - There seems to be little harm, though it may take some effort, to avoid gluten. If you are to some extent gluten intolerant, you could expect to experience less abdominal discomfort. Even if you are not gluten intolerant, you will likely be avoiding many of the empty and excessive calories that are based upon wheat (pastries, crackers, cookies ... ) as well as the high glycemic index foods (breads, pasta). Note: It is not a matter of avoiding white flour in favour of whole-wheat or whole grain - but to avoid wheat and other gluten containing grains and foods to which gluten is an additive.... and I will leave that to you to do your own research. By actively avoiding gluten, you will likely also benefit by being more aware and intentional in your food selection and diet... and if you are being intentional in your diet, you will likely be more intentional in your other lifestyle habits as well. To the extent you are also notice the reduction of those pesky inflammatory aches and pains and seem to have a boost in your overall health is really a matter of experimentation and experience.
I offer, therefore, several articles and sources that seem to me to a credible investigation into gluten intolerance, celiac disease, non-celiac gluten intolerance, 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.
Dr. Wayne Coghlan
Collingwood Chiropractor Clinic
Dr. 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.
email me at firstname.lastname@example.org
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"
Scientific American Volume 310, Issue 2 http://www.scientificamerican.com/article/gluten-sensitivity-may-be-a-misnomer/ 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."
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.
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 Official Languages Act. The material found there is therefore in the language(s) used by the sites in question.
- Clinical Features and Symptom Recovery on a Gluten-Free Diet in a Canadian Adult Celiac Population
- Canadian Celiac Association (CCA)
- Fondation québécoise de la maladie coeliaque - available in French only (FQMC)
- Health Canada's Position on the Introduction of Oats to the Diet of Individuals Diagnosed with Celiac Disease
- Celiac Disease - The Gluten Connection
- July 2012 - Summary of Comments Received on Health Canada's Proposed Policy Intent for Revising Canada's Gluten-Free Labelling Requirements
- June 2012 - Health Canada's Position on Gluten-Free Claims
- Proposed Policy Intent for Revising Canada's Gluten-free Labelling requirements
National Foundation for Celiac Awareness:
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?
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.
- International Physician Task Force Identifies Definitions for Celiac Disease and Gluten-Related Disorders
- Collaborative Report Suggests New Classification for Gluten-Related Disorders
- Study Defines Difference Between Celiac Disease and Gluten Sensitivity
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).
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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.
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A brief biography:
I am a graduate of the University of Guelph School of Human Kinetics, and then the Canadian Memorial Chiropractic College, with further education in Sports Sciences, and have completed a Master's degree in Counselling Psychology.
My athletic experience includes playing varsity football and rugby. I've worked my way through college doing jobs requiring much physical labour ... I know the realities of the workplace. In addition to my professional interests I enjoy gardening, gourmet canoe trips, and being a good parent.
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