What Is Gluten Ataxia?

By Jane Anderson | Reviewed by Emmy Ludwig, MD

Gluten Ataxia is a Rare Autoimmune Condition That Can Damage Your Brain
Gluten ataxia, a rare neurological autoimmune condition involving your body’s reaction to the gluten protein found in wheat, barley, and rye, can irreversibly damage the part of your brain called the cerebellum, according to practitioners who first identified the condition about a decade ago. This damage potentially can cause problems with your gait and with your gross motor skills, resulting in loss of coordination and possibly leading to significant, progressive disability in some cases.

However, because gluten ataxia is so relatively new, and not all physicians agree that it exists, there’s as of yet, no accepted way to test for it or to diagnose it. But that may be changing: a group of top researchers in the field of celiac disease and non-celiac gluten sensitivity has issued a consensus statement on how practitioners can diagnose all gluten-related conditions, including gluten ataxia.

In Gluten Ataxia, Antibodies Attack the Cerebellum
When you have gluten ataxia, the antibodies your body produces in response to gluten ingestion mistakenly attack your cerebellum, the part of your brain responsible for balance, motor control, and muscle tone. The condition is autoimmune in nature, which means it involves a mistaken attack by your own disease-fighting white blood cells, spurred on by gluten ingestion, as opposed to a direct attack on the brain by the gluten protein itself. Left unchecked, this autoimmune attack usually progresses slowly, but the resulting problems in balance and motor control eventually are irreversible due to brain damage. Up to 60% of patients with gluten ataxia have evidence of cerebellar atrophy—literally, shrinkage of that part of their brains—when examined with magnetic resonance imaging (MRI) technology. In some people, an MRI also will reveal bright white spots on the brain that indicate damage.

How Many People Suffer From Gluten Ataxia?
Because gluten ataxia is such a newly-defined condition and not all physicians accept it as of yet, it’s not clear how many people might suffer from it. Dr. Marios Hadjivassiliou, a consultant neurologist at Sheffield Teaching Hospitals in the United Kingdom and the neurologist who first described gluten ataxia, says as many as 41% of all people with ataxia with no known cause might, in fact, have gluten ataxia. Other estimates have placed those figures lower — somewhere in the range of 11.5% to 36%. Since ataxia itself is a rare condition—affecting only 8.4 people out of every 100,000 in the U.S.—that means fewer still actually have gluten ataxia. Estimates are much higher for the number of people with celiac disease and gluten sensitivity who have neurological symptoms.

Gluten Ataxia: Gluten-Induced Neurological Problems
Gluten ataxia symptoms are indistinguishable from symptoms of other forms of ataxia. If you have gluten ataxia, your symptoms may start out as mild balance problems—you might be unsteady on your feet, or have trouble moving your legs. As symptoms progress, some people say they walk or even talk as if they’re drunk. As the autoimmune damage to your cerebellum progresses, your eyes likely will become involved, potentially moving back and forth rapidly and involuntarily. In addition, your fine motor skills may suffer, making it more difficult for you to work writing instruments, zip zippers, or to manipulate buttons on your clothing.

Diagnosis Not Straightforward for Gluten Ataxia
Since not all physicians accept gluten ataxia as a valid diagnosis, not all doctors will test you for the condition if you show symptoms. In addition, experts in the field of gluten-induced disease only recently have developed a consensus on how to test for gluten ataxia.

Gluten ataxia diagnosis involves the use of specific celiac disease blood tests, although not the tests that are considered the most accurate to test for celiac disease. If any of those tests shows a positive result, then the physician should prescribe a strict gluten-free diet. If ataxia symptoms stabilize or improve with the diet, then it’s considered a strong indication that the ataxia was gluten-induced, according to the consensus statement.

Gluten Ataxia Treatment Involves Strict Gluten-Free Diet
If you’re diagnosed with gluten ataxia, you need to follow a very strict gluten-free diet with absolutely no cheating, according to Dr. Hadjivassiliou. There’s a reason for this: the neurological symptoms spurred by gluten ingestion seem to take longer to improve than the gastrointestinal symptoms, and seem to be more sensitive to lower amounts of trace gluten in your diet, Dr. Hadjivassiliou says. Therefore, it’s possible that you might be doing more damage to yourself if you continue to ingest small amounts of gluten. Of course, not all physicians agree with this assessment, or even necessarily with the advice to eat gluten-free if you have otherwise unexplained ataxia and high levels of gluten antibodies. However, it does seem to be backed up by anecdotal reports from people with diagnosed gluten ataxia and from people with severe neurological problems associated with celiac disease: Those people say the neurological symptoms take much longer to resolve; while some stabilize but never improve.

Numers Are Small
The number of potential gluten ataxia sufferers is very small when compared with the numbers of people with celiac disease, and it’s also small when compared with estimates for how many people have gluten sensitivity. However, many people with celiac disease and gluten sensitivity also suffer from neurological symptoms, which often include gluten-related peripheral neuropathy and migraine. Some also complain of balance problems that do seem to resolve once they go gluten-free. It’s possible that, as more studies are conducted on gluten ataxia, researchers will find even stronger links between that condition, celiac disease, and gluten sensitivity. In the meantime, if you have symptoms similar to those of gluten ataxia, talk to your doctor. You may require testing to determine if you have another condition that can cause similar symptoms.

Article Sources
Fasano A. et al. Spectrum of gluten-related disorders: consensus on new nomenclature and classification. BMC Medicine. BMC Medicine 2012, 10:13 doi:10.1186/1741-7015-10-13. Published: 7 February 2012
Hadjivassiliou M. et al. Dietary Treatment of Gluten Ataxia. Journal of Neurology, Neurosurgery and Psychiatry. 2003;74:1221-1224.
Hadjivassiliou M. et al. Gluten ataxia in perspective: epidemiology, genetic susceptibility and clinical characteristics. Brain. 2003 Mar;126(Pt 3):685-91.
Hadjivassiliou M. et al. Gluten Ataxia. The Cerebellum. 2008;7(3):494-8.
Rashtak S. et al. Serology of celiac disease in gluten-sensitive ataxia or neuropathy: role of deamidated gliadin antibody. Journal of Neuroimmunology. 2011 Jan;230(1-2):130-4. Epub 2010 Nov 6.

Osteoporosis and Celiac Disease

by Nicole LeBlanc, Dt.P. (Translation by Mark Johnson)

Osteoporosis is a frequent complication of celiac disease, linked to the malabsorption of calcium.

This nutrient is absorbed in the first portion of the small intestine, which is also the main area of intestinal damage in someone with untreated celiac disease. Osteoporosis is a condition that affects the skeleton and is characterized by low bone density and the deterioration of bone tissue, rendering the bones more fragile. This problem can lead to pain as well as deformities in the spine.

Prevalence

Indeed, osteoporosis is a major public health problem in Canada, and the prevalence is only increasing with the aging population. Looking at gender, women are four times more likely than men to have osteoporosis – the decline in estrogen production results in a 2-5% loss of bone density per year over the course of the first few years post-menopause. Osteoporosis is also more common in people with a new celiac diagnosis than among the general population – and with celiacs, men have the same percentage of risk as women do.

Risk factors

People are at greater risk if they present with the following factors:

  • Family history of osteoporosis (e.g. fractures in the hip, wrist or vertebrae)
  • Being a woman and over 50 years of age
  • Weakened bone structure and a weight at the lower end of the healthy range – BMI between 18.5 and 25
  • Early menopause (before the age of 45)
  • Smoking
  • Lack of physical activity
  • Low intake of dietary calcium
  • Excessive caffeine consumption (more than four cups per day)
  • Excessive alcohol consumption
  • Using certain medical drugs, including cortisone, for more than three months
  • Diseases that interfere with the absorption of nutrients (e.g. Crohn’s disease, celiac disease)

How to Prevent Osteoporosis:

To prevent osteoporosis, medical experts advise above all to have a balanced diet, heavy on plant consumption, and sufficient intake of calcium and vitamin D, and be sure to get physical exercise. In celiac patients, strict adherence to the gluten-free diet is the most important factor that will contribute to the regeneration of the intestinal mucosa, ensuring better absorption.

Get physical exercise
Physical activity, from childhood onwards, promotes the formation of strong bones. Throughout your life, exercise helps to maintain optimal bone mass and musculature, which supports your body’s weight. For example, walking, running, tennis, soccer, etc. Exercise that requires handling or pushing heavy objects is also beneficial.

Choose foods that are rich in calcium
Calcium is an important mineral. It contributes to bone metabolism, the maintenance of blood pressure levels, muscle contraction, and the activation of many enzymatic systems involved blood coagulation. Though the matter continues to be debated, currently calcium
requirements are estimated at between 700 and 1,300 mg per day, depending on age and sex. These recommendations may change in the future, depending on the findings of research that is underway.

Choose foods that are rich in vitamin D
This vitamin helps the body to better absorb calcium, no matter the source (food or supplements). It is difficult to meet your vitamin D requirements without the regular consumption of dairy products or milk substitutes that are fortified with calcium and vitamin D. Very often, one’s vitamin D requirements can only be met through food. In addition, living in the north (as we do) and aging both make it more difficult to produce vitamin D following sun exposure. It is therefore recommended that people over the age of 50 take a daily
supplement of 1,000 IU of vitamin D.

Reduce excess intake of calcium, alcohol, salt and meat
Although their influence on bone health remains unclear, it is suggested to moderate your consumption of animal protein, caffeine, alcohol and salty foods as these promote an increase in calcium loss through the urine.

Quit smoking
Stopping smoking has long been encouraged to support heart health and to help prevent lung cancer. Many studies confirm that smoking is also harmful to bone density.

Confusing May Contain Warnings Explained

By Sue Newell

A large food retailer in Canada adds “May contain wheat” warnings to virtually all of its house brand products.  Snack foods imported from some countries regularly list all 12 priority allergens on their ingredient lists. Products with a gluten-free claim also carry “may contain wheat” warnings (and this is encouraged by Health Canada and the Canadian Food Inspection Agency).  Almost all the ingredient labelling regulations in Canada are set by regulation but precautionary labels remain in the “optional” category.  No wonder people are confused about the words “May contain”.

In the last two years, products have appeared in our stores carrying both a “Gluten-free” claim and a “May contain wheat” warning. According to Health Canada, this labelling rule is acceptable in situations where the product meets the criteria for a gluten-free claim (no gluten ingredients, product made specifically to be gluten-free, and no gluten contamination at levels above 20 ppm) but may have levels of gluten contamination below 20 ppm. The “May contain” warning is provided as a service to people with a true wheat allergy. There are no maximum safe levels for allergy warnings.

So what should someone with celiac disease or non-celiac gluten sensitivity do with these products? Here are our recommendations:

  1. “Gluten-free” claims must be true so they take precedence over any precautionary “May contain wheat” claims. Go ahead and eat the product.
  2. If there is no “gluten-free” claim, but there is a “May contain” warning for any gluten grain, do not eat the product.

The fact that “May contain” labels are voluntary triggers fear for some consumers. Product manufacturers are “responsible for the safety of their products, including addressing potential risks associated with the presence of allergens”.  In other words, if the risk is significant and not controlled, they must inform consumers.

Meeting Health Canada: As the voice for people with CD and GS, CCA representatives recently met with Health Canada in June. CCA is also involved in stakeholder consultations related to prescription drugs, natural health products and new beer standards. We will continue to advocate for ways to make labelling more clear for consumers.

How to be Vegan with Celiac Disease

By Dayna Weiten, RD

Dayna is a Registered Dietitian with over 20 years experience as a clinical dietitian at Winnipeg’s largest teaching hospital and is a new member of the CCA Professional Advisory Council. Her areas of speciality are celiac disease, food allergies /intolerances, other gastrointestinal conditions, hypertension and hyperlipidemia/high cholesterol.

There are various types of vegetarian diets. If someone does not eat meat, chicken or fish, but still uses cow’s milk, they are considered a lacto-vegetarian. If they also include eggs, they are lacto-ovo-vegetarian. If no animal foods are included in the diet, it is termed vegan. Going vegetarian—especially vegan— is a huge food trend. But in order to be healthy, it has to be done right.

Don’t make this common mistake!

It can be very easy to create a diet that omits meat and chicken by using more cheese and other milk products. Milk, cheese and yogurt are excellent sources of protein and contain many other nutrients. The one drawback is that they are a poor source of iron. Lacto-vegetarians need to ensure they are including good sources of iron in their diets.

The key is protein

gluten-free veganWhen someone eating gluten-free decides to become vegan, or someone who is vegan is diagnosed with celiac disease, much of the advice given to nonvegan people with celiac disease would still apply: Eat whole unprocessed foods as much as you can, eat lots of vegetables and fruits, eat grains guaranteed to be gluten-free, use healthy fats such as olive oil and avocado. The differences come when we think about protein sources. Reading labels on processed foods is especially important as wheat is a common ingredient in prepared vegan entrees such as veggie burgers. You can make your own veggie burger as there are many recipes available which could be modified to become gluten-free.

If you are using non-dairy milks, try to use a type that has calcium and vitamin D added as these will contain the same amount of calcium and vitamin D as cow’s milk and are therefore good sources of these nutrients. These products vary in the amount of protein provided.
Soy beverages are a good source of protein. Other milk alternates such as almond, rice, hemp or coconut are not good sources of protein. Read the labels as some flavoured non-dairy beverages may contain gluten.

Good protein sources for vegans that are also gluten free would include:

  • Pulses (dried beans, peas and lentils) – dried or canned
  • Nuts and seeds, nut or seed butters (read labels to make sure no gluten added)
  • Soy protein/tofu (Note: Read labels on prepared soy protein products as wheat may be added as a filler/binder in some products)

Make sure you are including sources of these important nutrients:

Iron
Soybeans, lentils, kidney beans, nuts, seeds, dried fruit, spinach, blackstrap molasses

Vitamin B 12
Fortified beverage that is GF, nutritional yeast or a B12 supplement

Calcium
Fortified beverage that is GF, tofu processed with calcium sulfate, almonds, kale, bok choy, blackstrap molasses

EPA/DHA
ground flax, hempseed, walnuts

Vitamin D
most people do not obtain sufficient vitamin D in their diets; a supplement of 400 international units (IU) of vitamin D is recommended

Great vegan snack choices

If you’re gluten-free and looking for vegan snack options, try the following:

  • Fresh fruit and vegetables
  • Dried fruits
  • Nuts/seeds
  • Roasted chickpeas (commercial GF roasted chickpea snacks are available)
  • Homemade GF/vegan muffins or snack bars
  • Some dairy-free cheeses are gluten-free

2018 JA Campbell Research Fund Recipients

Two Canadian researchers awarded funding to advance research in celiac disease

May 25, 2018 Mississauga, ON. The Canadian Celiac Association (CCA) is pleased to announce the winners of our 2018 JA Campbell Research Awards. After an extensive review by CCA’s Professional Advisory Council, the following winners will be granted funding towards advancing research i celiac disease in Canada.

James A. Campbell Grant

Dr. Natalie Riediger (pictured on left) is the recipient of the James A. Campbell Grant. She is an Assistant Professor in the Department of Community Health Science and holds an adjunct appointment in the Department of Food and Human Nutritional Sciences at the University of Manitoba.

Dr. Riediger has been awarded $20,000 to retrieve and analyze the secondary data from the 2015 Canadian Community Health (Nutrition) Survey. With 500 individuals adhering to a gluten-free diet, their demographics, socioeconomic data, association with other dietary avoidances and the origin of where the gluten-free food was prepared will be examined.

James A. Campbell Young Investigator Award

james kingJames King is the recipient of the James A. Campbell Young Investigator Award. He is currently a graduate student in the Department of Community Health Sciences at the Cumming School of Medicine at the University of Calgary. With a specialization in epidemiology, his master’s thesis is focused on defining the incidence of celiac disease and how it has been changing over time.

Mr. King has been awarded $5,000 to conduct a systematic literature search on the incidence (the number of new diagnoses per year) of celiac disease globally and how this has been changing over time to examine healthcare utilization. He also aims to develop the Alberta Celiac Disease Surveillance Cohort to examine the direct and indirect costs associated with celiac disease.

The J. A. Campbell Research Fund began in 1993 in honor of Dr. James A. Campbell who died that same year. He was a member and advisor to the Ottawa Chapter and a member of the Professional Advisory Board. He was a long-time advocate for the CCA and completed research on gluten and safe foods for people with celiac disease. He advocated for the use of blood tests to screen for celiac disease to avoid unnecessary biopsies by publishing editorials in large journals such as the Canadian Medical Association Journal (CMAJ).

The J. A. Campbell Research Awards are annual grants offered by the Canadian Celiac Association to fund research projects in Canada that is relevant to celiac disease, dermatitis herpetiformis, or non-celiac gluten sensitivity. The fund is created to encourage research that furthers the understanding of the full range of implications of celiac disease, dermatitis herpetiformis, or non-celiac gluten sensitivity. Once completed, the researchers will be asked to present their findings through the CCA to the community. To date, more than $350,000 has been awarded to top Canadian researchers through the J. A. Campbell Research Fund.

2018 Rod McDaniel’s Celiac Kids Camp

gluten-free-camp

WHEN: August 26-31, 2018

WHERE: Camp Horizon in Kananskis Country, AB Sunday drop-off and Friday afternoon pick-up

INFO:
• offers a completely gluten-free menu, approved by a registered dietitian
• Open to members ages 7-17
• Siblings are welcome to attend (and eat gluten free)
• Parents can volunteer for the week at no extra free
• Tons of fun activities for all ages
• $350 fee per camper for all CCA members (this is the subsidized fee) – Membership # required
• Register online at www.calgaryceliac.ca or phone during office hours at 403-237-0304

Get Support On Our Facebook Group

by Janet Dalziel

The CCA’s Facebook group is a diverse, engaged community that offers help and support in real time.

join our Facebook groupWhen the Canadian Celiac Association was created 1984 support for people with celiac disease was one of several lofty goals, including advocacy and awareness, for its ambitious volunteers.

Back then, support meant local chapter meetings, national and chapter print newsletters of varying quality and a 1-800 national phone line. Requested materials could take weeks to arrive, the phone was not answered in the evening or on weekends, and volunteers did their best to make contact with members but with limited results.

Today, support from the CCA encompasses the best of the past along with a tremendous effort on social media. If you are a member of long standing and have not yet checked out the CCA Facebook group, you should do so. Traditional membership in the CCA is lagging while membership in the closed Facebook group shows phenomenal growth, with more than three times as many participants in the group as members, with lots of overlap, of course.

This support works for a variety of reasons:

  •  Myths and misinformation are corrected by our own experts very quickly; people can ask for clarification and are answered virtually immediately
  • Recipes are shared and adapted, successes are congratulated and photos are admired
  • Users frequently announce new products and where to find them, along with reviews on their palatability
  • Restaurant and travel recommendations are requested and quickly received from people with direct experience
  • Questions about the safety of ingredients are not just answered with a “safe” or “not safe.” Rather, the answers
    usually come with advice on how to become self-sufficient in reading food labels
  • Pleas for help in navigating difficult social and family issues provide tremendous insight from a variety of points of view, with practical suggestions and life lessons in dealing with difficult people
  • Food and lifestyle bullying or shaming is not tolerated
  • The Facebook group bypasses the geographical chapter structure and brings people together
  • Everyone in the group can benefit from everyone else’s questions and advice, unlike one-on-one support

People in this group are of all ages, from all over Canada, with quite a few from other countries as well. What unites them all is the need to survive and then thrive, from diagnosis problems through eating for health and pleasure. Many are worried parents doing their best for recently diagnosed children or struggling to get their children diagnosed.

It does not matter how long you have been dealing with any of these issues yourself—there is always something to learn and frequently some wisdom to add to the discussion. The support is ongoing and constant and it goes back and forth: Some days, you are the one getting new information you didn’t know you didn’t know, and other days, you are the one providing needed reassurance to someone else who is just learning.

And some days you are just laughing together at a shared joke. Participants often comment that finding this support group has been a lifesaver for them and their stories bear this out.

We finally have the shared community we always wanted, with real peer support. The experienced want to share stories about what they have learned and how they learned it; they want to help. The newbies are relieved to know they are not alone, that there are answers, that others had similar experiences and can offer advice, that their panic or grief or misery is understood. This is what we wanted when we joined the CCA, to learn and to help and to make it better for all of us. This is what we do. But remember that we can only do it with financial support.

External link: CCA Facebook Discussion Group

Beer Labeling Changes Proposed

The Canadian Celiac Association lead the response to recommended changes to beer standards including the need for labelling of gluten and other food allergens last summer.  As a result of the community response and from stakeholder groups, Health Canada has recommended changes to the beer standards. Click here to read.

beer-not-gluten-freeAmong these changes is that that beer will no longer be exempt from the labelling requirements set out in the Food and Drugs Regulations for allergens, gluten and added sulphite.

In order to be successful, our community needs to respond to a second round of public consultations before the regulations are finalized. We’ll let you know when you can participate and ensure these regulations move forward as proposed.

As usual the beer industry will lobby hard against these changes so we need your support! Every letter counts.

Osteoporosis and Celiac Disease

by Nicole LeBlanc, Dt.P. (Translation by Mark Johnson)

Osteoporosis is a frequent complication of celiac disease, linked to the malabsorption of calcium. This nutrient is absorbed in the first portion of the small intestine, which is also the main area of intestinal damage in someone with untreated celiac disease.

Osteoporosis is a condition that affects the skeleton and is characterized by low bone density and the deterioration of bone tissue, rendering the bones more fragile. This problem can lead to pain as well as deformities in the spine.

Prevalence

Indeed, osteoporosis is a major public health problem in Canada, and the prevalence is only increasing with the ageing population. Looking at gender, women are four times more likely than men to have osteoporosis – the decline in estrogen production results in a 2-5% loss of bone density per year over the course of the first few years post-menopause. Osteoporosis is also more common in people with a new celiac diagnosis than among the general population – and with celiacs, men have the same percentage of risk as women do.

Risk factors

People are at greater risk if they present with the following factors:

  • Family history of osteoporosis (e.g. fractures in the hip, wrist or vertebrae)
  • Being a woman and over 50 years of age
  • Weakened bone structure and a weight at the lower end of the healthy range – BMI between 18.5 and 25)
  • Early menopause (before the age of 45)
  • Smoking
  • Lack of physical activity
  • Low intake of dietary calcium
  • Excessive caffeine consumption (more than four cups per day)
  • Excessive alcohol consumption
  • Using certain medical drugs, including cortisone, for more than three months
  • Diseases that interfere with the absorption of nutrients (e.g. Crohn’s disease, celiac disease)

Celiac Research Tidbits – June 2018

Still getting glutened an ongoing problem

A February study in the American Journal of Clinical Nutrition suggests that unintentional exposure to gluten may be greater than was previously thought. One of the study’s authors, herself a celiac, talked about how she was still getting sick, and used mass spectrometry to find out that some of the “glutenfree” pasta she was eating in fact contained gluten.
For more information: https://www.npr.org/sections/thesalt/2018/04/03/598990638/when-going-glutenfree-is-not-enough-new-tests-detect-hidden-exposure


Mono linked to celiac, other disorders

New research from the Cincinnati Children’s Hospital Medical Center found that the Epstein-Barr virus (EBV) – best known for causing mononucleosis – also may increase the risks for some people of developing seven other major diseases, including celiac disease. Other linked diseases are: systemic lupus erythematosus, multiple sclerosis, rheumatoid arthritis, juvenile idiopathic arthritis, inflammatory bowel disease, celiac disease, and type 1 diabetes.
For more information: https://www.sciencedaily.com/releases/2018/04/180416121606.htm


New wheat with less gluten coming out

Arcadia Biosciences, a California-based company, has developed wheat in which gluten has been reduced by around 60%. While this wheat will still not be safe for people with celiac disease, the company is targeting those who have gone gluten-free by choice, or feel they are sensitive – the vast majority of those who are eating GF.
For more information: http://www.worldgrain.com/articles/news_home/World_Grain_News/2018/04/Arcadia_Biosciences_introduces.aspx?ID=%7B9755CB87-3109-4029-9E7D-81E92CC7AFFF%7D


Does baby delivery method impact celiac?

Much research has been published suggesting that babies delivered by caesarean section are more likely to develop celiac disease. However, new research published in the Journal of Clinical Epidemiology suggests that this may not be the case. Researchers used data from administrative registers and health administrative registers from Denmark and Norway and linked the data at the individual level. The mode of delivery was not associated with an increased risk of diagnosed celiac disease.

For more information: https://www.dovepress.com/mode-of-delivery-is-not-associated-with-celiacdisease-peer-reviewed-article-CLEP