3 Things to Do When First Diagnosed with Celiac Disease

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Being diagnosed with celiac disease can be very overwhelming. Firstly, as unfortunate as it is, there is not much support out there when your doctor hands you the diagnosis of celiac disease. Many of my clients have told me that they were informed to ‘google’ the diet and were then shown the door.

I remember when I was diagnosed, my doctor said “well you’re a dietitian so this should be easy for you.”

Yes, that was it.

I definitely feel I had a leg up than others, for sure. But, it was still very difficult for me. The first year I learned so much more than the basic gluten free diet. From reading labels correctly, to correcting nutrient deficiencies, to navigating social situations, the learning curve is steep. And, of course, when you live a disease everyday, you see things through a different lens.

It is not as simple as ‘googling’ the gluten free diet. And, in fact, I would say it is much more dangerous to google the information as there is a lot of inaccurate information on the internet, especially when it comes to gluten free and celiac disease.

So, if you have just been diagnosed, take these 3 steps to get your health back on track:

1. Seek out accurate information from dietitian experts in the area of gluten free and celiac disease

Just as there are doctors that specialize in gastrointestinal disorders (gastroenterologists), there are dietitians that specialize in certain areas as well. And, when it comes to celiac disease, it’s very important that you use a dietitian with this expertise.

Registered Dietitians with expertise in the gluten free diet are the nutrition professionals you want to turn to in the case of celiac disease, non-celiac gluten sensitivity or wheat allergy. Not only have they taken a 5 year degree program to become registered as a dietitian in their particular province, they also have additional expertise in the gluten free diet helping to get you on the right track right away.

Avoid spending unnecessary dollars on a bunch of supplements, unnecessary and inaccurate ‘food intolerance’ tests, unnecessary microbiome assessments and wisely invest your health dollars, simply, in a dietitian.

How to work with a dietitian 1:1 or in group settings:

  1. Private Practice Dietitians – If you have third party benefit plans, private practice dietitians are typically covered and you could be reimbursed for your time together.

At Healthbean Nutrition, we offer direct billing to insurance companies.

2. Public Health Dietitians – If you live near a large city, you may live near a specialized celiac center. For example, in Hamilton Ontario, Macmaster University has a celiac center. Ask your doctor if you can be referred to one of these as they typically have dietitian experts on staff.

3. Save on Food Dietitians: Dietitians at this grocery store hold group grocery store tours and can help you navigate the store so you can choose safe and healthy products for your health condition. They are free.

If you are interested in a tour for the Kelowna group, you can sign up here.

Invest in resources written by registered dietitians with expertise in the gluten free diet:

  • Shelley Case, RD, is a well-known Canadian dietitian that specializes in celiac disease and she has written a book on everything celiac disease and it is well worth the investment.
  • Real Life with Celiac Disease written by Melinda Dennis, RD is also a great resource.
  • Tristcia Thompson from is another well-known dietitian and runs a website called gluten free watchdog which tests gluten free products submitted from the public using third party testing. She publishes whether the product is safe to consume or not and includes detailed information on the tested product.

2. Eat single ingredient, whole foods

Yes, you need to learn to read labels like a pro. It’s a life changing skill that every celiac needs to nail down. A simple tool to start learning how to read labels can be found here.

For now, though, and especially if if you are super overwhelmed, take a deep breath.

For the first few weeks while you let the diagnosis sink in and while you wait to see a dietitian, you can simply choose to eat whole foods that have no ingredient lists to navigate. And, it doesn’t take a professional chef certification to prepare a simple, delicious meal made from whole foods.

Fresh produce items like apples, kale, potatoes, beets, oranges, avocado, tomatoes, plain poultry, fish, tofu, eggs, have no ingredient lists and can be easy to prepare.

You can prepare fast meals on one tray, called sheet pan meals which can be very tasty. For example, lay down pepper and onion strips, and sweet potato cubes on a baking pan. Drizzle with a few tablespoons of oil. Roast at 350F for ~25-30minutes. Top with over medium eggs, a few cherry tomatoes and avocado cubes and you have a hash bowl ready in 30 minutes.

3. Find support groups

A diagnosis of celiac disease can be very socially isolating. It may even increase the risk of depression due to the significant challenge of adapting to the gluten free lifestyle (beyond celiac).

The Canadian Celiac Association is the voice for all Canadians living with celiac disease. They are an amazing organization and so I would encourage you to connect with them in the following ways:

  1. Visit the Canadian celiac association website
  2. Join their very active and engaging Canadian celiac association FB group

In addition, many cities have free celiac support groups. Connect with them as well!

  1. Kelowna in person celiac support group 
  2. Okanagan online FB support group

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