Professional Advisory Council “Meet and Greet” Notes

From the 2018 National Conference – Ottawa – June 8th

The 2018 National Conference started with a panel discussion including members of the CCA Professional Advisory Council answering questions from the CCA Chapter executives. Members of the panel included:

  • Dr. Don Duerksen
  • Shelley Case RD
  • Dr. Jenny Zelin

Discussion regarding gluten-free flours
There are many myths about flours and a lot of discussion regarding arsenic in flour. The glutenfreewatchdog.org provides credible information regarding this. The bottom line is that you should not base your diet on rice, especially brown rice which has more arsenic. Alternate your grains so that you get a variety of grains in your diet.

Soy – There is a theoretical concern regarding hormones and soy. Again variety is important so you do not overload on any one grain. Soy in itself is not harmful.

Oats – Newly diagnosed should wait up to 18 months when the tTG normalizes to include gluten-free oats in the diet. The gluten-free certified oats should be introduced slowly due to the increase in fibre in the diet. The Health Canada website provides good information on gluten-free oats.

Nima Gluten Detection
The Nima device is used to detect gluten in food. Third party validation data is lacking on the Nima device, therefore it is suggested that “buyer beware”. This type of technology is where this industry is heading, however, testing must be done by experts to ensure it does what it
says it will do.

What information should I give my doctor when first diagnosed?
Direct the doctor to www.celiac.ca and give them handouts of position papers that are available there. tTG follow-up is helpful but not 100% accurate as to what is going on. The Celiac Follow Up Care Resource brochure will assist the doctor in what testing should be done on an on-going basis to manage celiac disease. Panel members stated that dietitians and dentists are very helpful in diagnosing celiac disease (CD).

What percentage of the general population are affected by celiac disease?
Canada borrows the data from the US which indicates approximately 1% of the population has CD. Test for CD before testing for anything else Canada is developing a registry for Registered Dietitians for CD. Training for undergrads is also a priority. Handouts are on the national website that Dietitians can download.

How long does one have to eat gluten before testing?
There are many different answers quoted to patients. Generally, 4-6 weeks of a slice of bread per day is adequate. If a patient has been gluten-free for a long time, more time on gluten may be required.

What symptoms affect the brain/body when eating gluten?
Symptoms vary from person to person. You must always beware that the cause “might be something else”. The longer an individual is off of gluten, usually the more sensitive they are to gluten exposure.

Please comment on tTG remaining high for an abnormally long time?

It takes different people different times to come within the normal tTG range. The number one reason for not normalizing is they are unaware of gluten exposure. Refractory celiac disease is rare. This is when the individual does not respond to a gluten-free diet.

Travel
Best to do your research before you go. Find out what the food safety standards are in the country that you are going to and it is often useful to contact the local Celiac Association and check out their website.

Wheat Starch
The inclusion of wheat starch in food is allowed in Europe. In Canada, today, this does not meet our standards. Additional processing is required to remove the gluten. Canadian law requires that anything that contains a gluten source is not allowed.

Pregnancy
If a mother is celiac, there are no known adverse effects to the baby, however, the fertility of the mother may be an issue in those with undiagnosed celiac disease. Current research indicates that gluten should be introduced to babies’ diets at approximately 6 months of age.

Is it possible to have elevated tTG and not be celiac?
Yes, there are other conditions that may cause an elevation. It is important that the biopsy provides 4-5 samples to ensure proper diagnosis.

How long does gluten stay in your system?
Gluten is found in the stool for approximately 24 hours and in the urine for 6 hours.

2018 National Conference Recap

Courtesy Calgary Chapter

The CCA’s Ottawa Chapter hosted the 2018 National Conference and it was a tremendous success! Not only did we have nearly 300 delegates (more than we’ve seen in years), but we also were able to break new ground by having a presentation on neurological issues and celiac – a rapidly developing but lesser-known area of celiac disease research.

Held at the majestic Shaw Centre in downtown Ottawa, the location was great for tourism – right by Parliament Hill, the Rideau Centre, the Byward Market and more. The conference received rave reviews from attendees and we thank the Ottawa Chapter for all the work put into this event. If you weren’t able to make it, we’re pleased to provide some of the key points from three featured speakers.

Dr. Marios Hadjivassiliou gave us a thrilling presentation on the neurological manifestations of celiac disease.

  • “Classic” celiac disease is no longer the norm. More and more we are seeing neurological issues. It’s possible to have no digestive issues, just neurological issues, and be celiac. Going gluten-free is critical to help alleviate these symptoms.
  • Early diagnosis when gluten ataxia is present can help save the patient from much hardship.
  • Balance issues and vertigo are red flags. Celiac can also interfere with speech, coordination, strength.
  • Gluten neuropathy – loss of sensation/tingling, can be numbness and pain. Accounts for 26% of all neuropathies.
  • Gluten ataxia equally common between men and women, study shows. Only 50% of them will be celiac.
  • With gluten ataxia, we can see damage to the cerebellum – damage that is often permanent.
  • Gluten ataxia in some cases linked to refractory celiac disease, which can be very difficult to treat.
  • There is a strong connection between headaches and patients with celiac disease. Some ataxia  patients get horrific headaches. You wouldn’t automatically assume that’s celiac!
  • Antibodies from gluten exposure can cross-react with neural tissue. The cerebellum is what’s primarily impacted for ataxia in these cases, but other areas of the brain can be impacted as well.
  • Some neurological patients show a poor response to the gluten-free diet. Reason most often is poor diet adherence, but there could be other issues as well.
  • Some patients say they feel like there’s a big cloud over your head, things are hazy, as if you’re just going through the motions of life.
  • Physiotherapy has been found to be able to help when there has been gluten ataxia damage to the cerebellum. Easier for younger people.
  • We know that depression and anxiety levels are higher in those with celiac disease.
  • Studies in our clinic found that half of people with ataxia showed enteropathy.
  • Ataxia patients get MR spectroscopy scans, show great improvement for celiacs once the gluten-free diet is adopted.
  • Age of diagnosis for a classical-symptomed celiac is 44, versus 53 for those with the neurological presentation.
  • Even if you’re on a strict gluten-free diet, gluten ataxia can persist. Depends on the patient and antibody profile.
  • Seizures can be associated with celiac. Specific type of epilepsy, seems to be more common in Italy and Argentina.
  • Since screening programs implemented in Finland, fewer cases of dermatitis herpetiformis have been reported.
  • If a celiac still has neurological symptoms on the gluten-free diet, he or she should repeat the blood work and the endoscopy. If everything looks healed/compliant, there may be a need to use immunosuppressants.
  • Some patients with schizophrenia showed improvement on the gluten-free diet, but we can’t say that there is a clear link. More research is needed.

 

Dr. Joseph Murray provided an overview of the latest research from the world of celiac disease.

  • There are drugs that can damage the intestine to make it appear like celiac. There are other conditions that can also mimic the damage. Beware.
  • People with celiac disease should test their thyroid function every 4-5 years, as there is a strong link between celiac disease and thyroid disease. Both are autoimmune.
  • Cannabis is soon to be legal in Canada. Cannabis is better than over-indulging in alcohol and better than smoking cigarettes, but there are still negative impacts to watch out for. There has been no research on whether cannabis could help people with celiac disease.
  • Whether global warming is impacting celiac, who knows. It may be changing how wheat grows, how it adapts, etc.
  • In northern climates, we see more multiple sclerosis, just like we see more celiac disease.
  • Perhaps related to vitamin D? More research is needed.
  • If you’re a mother who is diagnosed with celiac, test your children NOW. Before you turn your house totally or partially gluten-free.
  • Being “very positive” on the celiac tTG blood test doesn’t really impact the level/severity of symptoms. Positive is positive.
  • Celiac was considered a rare disease in the past. We found 0.2% in testing in the 1950s. Definitely far higher now  1%, or 5x what it was.

 

Dr. Justine Dowd presented her research, partially funded by the CCA, on evidence-based holistic approaches to celiac disease management.

  • Many people with celiac disease are misdiagnosed with IBS first. Or some, like me, are “lucky” enough to have both.
  • I struggled for a long time with infertility and was misdiagnosed. Getting finally diagnosed as celiac led to huge improvement.
  • Those who adhere the best to the gluten-free diet are those who were in dire straits when diagnosed, awful symptoms. They do not want to take any chances at going back to how things were.
  • We need to retrain our nerves so that we can feel well. Brings in the idea of self-compassion.
  • There is a strong connection between gut health and mental health. Lots of research in that area. More incidence of depression, anxiety and other mental health issues among those with celiac disease.
  • Research shows that people are more likely to be kind to others than to themselves. Self-compassion is needed, giving ourselves the same kindness. Mindfulness over overidentification, common humanity over isolation.
  • We’re looking at exercise and effect on microbiome. Does being active make a difference?
  • Vagus nerve is key – connects gut and brain, promotes rest and digestion. Also need to reduce stress as much as possible – and cope with it, where elimination is not possible.
  • We have over 1,000 different bacteria species in our gut. Strong link between exercise and gut health.
  • Can be higher risk of excess abdominal fat, high blood pressure, high blood sugar with celiac patients. May be due to excess consumption of processed GF foods. Can lead to metabolic syndrome.
  • The app @myhealthygut is free to get started, and has additional features available ($). The dietary tracker and journal can help to figure out why you may still have symptoms. Then you can email it to your health care provider.
  • For newly diagnosed, we need to teach them self-regulatory skills. That’s what she is researching at the University of Calgary.

In addition, the conference included presentations on nutrition, gluten-free lentils and grains, and baking GF and vegan, as well as updates from Health Canada and the CFIA.

Next year’s conference will be in the Toronto area, likely in late May. Stay tuned for more details!