Celiac Disease: this is why we should talk about it.

 

Celiac disease AND gluten! We have all heard of it these days but living with it can be difficult … very difficult … especially if you are newly diagnosed.

Eight years ago our family discovered one of us had celiac disease … aka me! It can present itself at any stage in a person’s life and the average age is 46 … me again!

After seeing my doctor, it was discovered my tiredness was due to anemia, which is quite common, but a not always known symptom for celiac disease. Plus there was also the worry of the stomach pain and what was causing it, so the tests began. One test was the IgA-TTG antibody blood test, which came back very high (I forget the numbers). Six weeks later it was the small intestinal biopsy and then the visit to a dietician at the local hospital. A bone density screening was done, and osteopenia was discovered.

And so my new relationship with food began. Learning to eat clean and enjoy REAL FOOD. It was very hard and lonely to start with and oh … the mistakes we all made. The hardest part of this new diagnosis was educating me, my family and my friends. The best part over the past two years has been learning how to make gluten free sourdough and eat GREAT BREAD again. We all crave bread it seems!

A diagnosis for celiac disease can take up to 12 years and it is also hereditary. All my siblings and my two daughters have been tested. Both my girls have been diagnosed in the past 4 years; one had the IgA-TTG antibody blood test twice over a period of a couple of years before it came back positive. She knew something was wrong, as well as having anemia and the hereditary factor. There were also nephews and nieces diagnosed, but none of my siblings. When you are newly diagnosed it is not just the children that need educating, but the parents as well.

My niece was 10 when she was diagnosed with celiac disease and it was especially difficult to watch her deal with dietary restrictions, when other kids around her did not have to worry… it just seems so unfair!!

Celiac disease is so common in my family so I have decided to share some helpful tools from the CCA.

Untreated celiac disease can have serious health consequences and because symptoms may appear quite differently from one person to the next, it can be tricky to diagnose and is often mistaken for other health problems.

Usually when people discuss their celiac symptoms, you hear about bloating, gas, stomach pain and diarrhea. Other not so commonly known symptoms are joint pain (me), low bone density (also me) migraines (which we suffer from), dental problems, and fertility problems.

The Canadian Celiac Association (CCA) is offering online tools to further educate people with celiac disease and to help with earlier diagnosis. The CCA is asking Canadians to #GoBeyondTheGut and test their knowledge about the not-so-typical signs of celiac disease. I did this myself and it took no time at all. I was surprised with the long list of celiac disease indicators and I was doubly surprised that I was not familiar with all of them.

CCA’s Growing Up Celiac Workbook is, and I quote, “A 20-page easy to read resource, written especially for parents who have children with celiac disease or gluten sensitivity. It contains information about the disease, tips from fellow parents, nutrition and other resources, recipes, and of course GF lunch and snack ideas.”

Another useful tool that the CCA is providing is a Symptom Quiz. This is a questionnaire that can be filled out and discussed with a family doctor to help with a sooner, rather than later, diagnosis.

The harsh reality of this disease is that there is no cure … at this stage … which means a life sentence of NO GLUTEN. Hopefully the more we discuss the symptoms then people can start living a gluten free and healthy life. Whether its celiac disease, gluten sensitivity or that itchy skin rash called dermatitis herpetiformis.

Lastly having celiac disease can be lonely in a room full of gluten…. NEVER under estimate how thrilling it is, when someone brings you a gluten free cake or cookie.

Facebook: @CCAceliac

Twitter: @CCA celiac

Instagram: @ccaceliac

Connect with the Canadian Celiac Association on their social channels.

 

2 thoughts on “Celiac Disease: this is why we should talk about it.

  1. Carla Balzun says:

    Thank you for this! I too experienced symptoms of anemia for many years. Each year I’d go for my physical and each year it was assumed my anemia was due to my periods. Finally, after trying different remedies for about 15 years, I was tested for celiac disease (I wasn’t even sure what that was!) I was 42 years old. My son was diagnosed a few years later in his early 20’s.
    It’s definitely been a time of learning and looking at food differently. I’m actually grateful for that. Celiac has brought very positive change to my health and wellness:)

    Like

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