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Celiac Awareness Month: Interview with a Celiac Disease Expert Selena De Vries

May 27, 2020

Celiac Awareness Month: Interview with a Celiac Disease Expert Selena De Vries

As you may or may not know, the month of May is National Celiac Awareness Month. These month long efforts helps raise awareness about the disease and shed light on those affected. One thing Smartbite Snacks takes great pride in is our commitment to creating organic gluten-free snacks that our celiac friends and family can enjoy. This has been the goal of our little family business since the day one. 

In an effort to help spread some useful information on celiac disease we decided to reach out to Selena. We recently came across Selena’s Instagram account and it quickly became one of our favorite resources for no-nonsense gluten-free chat, helpful tips and easy gluten-free meals. Check out Selena’s story and her practical insights below. 

 

QUICK FIRE QUESTIONS 


My favourite emoji:
The lick your lips one as I love to eat! 😋

Finish this sentence: You should never… give up.

Best career advice I've gotten: If you have a good work ethic and do what you love, you’ll figure it out.  

What fact about you would surprise people? I love to tap dance.

The three qualities that got me where I am today: passion, work ethic and the desire to help others. 

What book left a lasting impression on you? The bloated belly whisperer.  I’m seriously a full digestive health nerd. 

One thing I'm exceptionally good at: Living in the moment.

One thing I'm epically bad at: Planning

How do you clear your mind after a crappy day? I like to just sit and be still until my mind stops racing miles a minute.  

Something nice I did for myself recently, because hey, why not: I wish I could say I have, but I haven’t lately.   

 


Thank you very much for chatting with us Selena. You are clearly a lot more than someone living with celiac disease.
So tell us a little bit about yourself.

I was diagnosed with celiac disease in 2013 and recognized the lack of support within our medical community right away. Being a dietitian, I was certainly ahead of the crowd when it came to the GF diet. But, by no means did that make the transition to the GF lifestyle easier. The social impact of the disease has far reaching effects and I definitely felt that myself. 

I’m sure my fellow celiacs would agree as well. Because of my experiences, it lit a passion in me to specialize in this area and I dove straight into private practice.  At Healthbean Nutrition, I empower individuals with celiac disease to take charge of their diagnosis so they can live their best life  free from overly restrictive diets and free from social isolation.  

 

Let’s do a quick review for those who are not quite familiar with this term. What exactly is celiac disease (CD)? Also what is the difference between celiac disease and gluten sensitivity?

Celiac disease is an autoimmune disease that triggers an attack on your body, hence ‘autoimmune.’ In the case of celiac disease, when gluten (wheat, rye, barley) is ingested, your body creates antibodies to ‘fight’ the gluten, and it triggers an attack on your villi, finger-like projections that absorb nutrients in your small intestine. Damaged villi are not able to absorb adequate amounts of fat, protein, carbohydrates or vitamins and minerals and this leads to malabsorption and widespread symptoms and diseases that can effect every single organ system in the body.  

Non-celiac gluten sensitivity is non-immune mediated, meaning it does not create antibodies and it does not cause any physical damage to the body as celiac does. Since there is no damage, no malabsorption is occurring either. However, symptoms can still occur so individuals still must avoid gluten.  

There is some talk as to changing the name to an umbrella term of “non-celiac wheat sensitivity” (vs gluten sensitivity) as there may be multiple reasons why people are not able to ingest gluten that go beyond gluten as being the culprit.  This may range from a wheat allergy (IgE immune mediated allergy like a peanut allergy), wheat intolerance due to fructans and other FODMAPs, and/or a wheat sensitivity.  

 

What was the period of time leading up to your diagnosis like? When you knew something wasn’t quite right but probably didn’t know what exactly that was.

As I was going through Dietetic school and in my final year of my dietetic internship (a pretty grueling schedule and workload in a hospital setting), I was always tired. I even remember, dozing off in the chair while I was typing up chart notes from my last patient of the day. I could barely keep my eyes open. I chalked it up to the busyness of school.  

One day, I decided to check my iron levels and they were slightly low. However, there was no reason that they should have been low considering my diet and lifestyle. Because of my background, I ask for a celiac screening test (the antibody test, anti-tTG), and it was slightly positive. My doctor said I was “sensitive to gluten,” but the dietitian in me knew otherwise. I asked for a gastroenterologist referral for the gold standard diagnosis for celiac disease, an endoscopy. I received that and it came back positive for celiac disease. 

 

How did it feel when you officially knew what you were dealing with? Did you understand right away what the consequences would be and how would it impact your life going forward?

I never had significant symptoms of celiac disease, certainly not in the GI sense.  I definitely present as an asymptomatic individual. Even though I don’t get the typical symptoms, I was certainly very happy to know that I caught something that could have had far reaching effects on my health.  

I knew the GF diet from my dietitian background. But knowing and living it are two very different things. I definitely underestimated the effect on my social life and I struggled with it immensely. I never had a care in the world before as sharing and eating food outside the home was such a huge part of my life. Reaching over and taking a bite of my husband’s food, sharing a platter of menu items with all my friends, travelling the world and eating from street vendors were all things I took for granted. I would say in year 1 or 2 post diagnosis, I fell into a mild depression when it came to how celiac disease affected me emotionally and socially. Navigating the social aspect of the GF diet was a steep learning curve for me. Eating outside the home has dramatically changed in my life. However, having supportive family and friends make all the difference with a new celiac diagnosis!  You need a crew to make it through, especially at the beginning.   

 

 

Does anyone else in your family have celiac disease?

I have three cousins who also have celiac disease.

 

In one of your Instagram posts you mentioned that celiac disease is a very misunderstood disease. What kind of misconceptions do you encounter in your daily life?

I think the biggest misconception is that all you need to do for celiac disease is follow a GF diet and you’ll be fine. But, it really is much more complex than that. 

The GF diet for celiac disease requires very strict adherence. It extends beyond the food itself and requires further vigilance on the preparation of that GF food. It takes nothing more than a few crumbs to induce the autoimmune response in celiac disease. This could be as simple as preparing food on a contaminated cutting board. 

New research suggests that ongoing gluten exposure even occurs with the most strict gluten free diets and, of course, this can lead to negative health consequences and ongoing symptoms in individuals with celiac disease. The GF diet effects every area of our life  not just finding GF food. From travel, to eating out, to conversations with our friends and family, celiac disease is heavily emersed with everything we do. In research, the perceived treatment burden of celiac disease was comparable to end-stage kidney disease! 

 

What is your number one piece of advice for people living with, and potentially struggling with, some form of food sensitivity?

Get a supportive team to help you. It should include trust worthy professionals such as a gastroenterologist, digestive health dietitian and counsellor, if possible.  And, join a support group!

 

What is your favorite gluten-free dish?

I LOVE baked goods. Probably, chocolate chip banana bread!

Can you share your top three lifestyle tweaks that you believe will help support people’s journey towards better well-being?

There are so many things! If I could pick just three, they would be: 

  1.  Focus on eating more plants. Try to aim for 2 cups of veggies at both lunch and dinner. It really is a simple hack to feeling tremendously better.  
  2. Spread out meals and snacks evenly throughout the day. Your three meals should be the same size, not 2 small meals/snacks with a giant dinner and big bowl of dessert. That spells digestive havoc!  3 meals and 1 snack is a great digestive friendly schedule. 
  3. Aim for a variety of different plant foods. Variety is key for microbiome health. A challenge is to try and consume 30 different plant foods per week. It’s not as hard as it sounds!

 

What are your thoughts on how gluten is portrayed in popular/social media?

I can’t say I am a fan.  A lot of North American advertisements poke fun at the gluten free diet. It really downplays the seriousness of celiac disease and the gluten free diet. And, that has far reaching negative effects for the celiac disease community.  

Interestingly, when I was in Italy, it was not like that at all. They took it very seriously there and one time mentioned to me, “celiac disease is, of course, very serious. Why would anyone voluntarily follow a GF diet if it wasn’t medically necessary?”  Makes me laugh a bit as the GF diet can be quite a fad here in North America. 

 

In your experience, are there any positives associated with being diagnosed with such a severe condition such as new foods you have learned to love, taking your nutrition more seriously or something else?

Of course!  It gives you your health back and there is no price on that!  Despite all the challenges, I would never have it any other way. It opens up so many opportunities to cook with new foods and find delicious alternatives. I don’t think I would be as creative in the kitchen as I am now, without my celiac diagnosis.  One food that I would’ve never eaten prior is buckwheat. I use it quite often in my kitchen now as it is a wonderfully nutrient dense grain with a delicious, nutty flavor. Makes great pancakes and pilafs.   

 

Anything else you’d like to share that hasn’t been touched on?

Selena is a registered dietitian specializing in the dietary management of celiac disease in her virtual private practice  She offers individual consultations and also offers on online program for those with celiac disease who continue to struggle with digestive health symptoms. 

You can find Selena on:

Web: healthbean.ca

Instagram: @celiac_dietitian

 



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