10 Surprising (and Relatable!) Celiac Statistics

Living with celiac disease often means you don't know anyone personally who shares your disease or experiences. This makes it difficult to judge if your experiences with celiac disease are similar to others. I often wonder, am I a normal celiac or not? I think to myself, are others out there like me? Do they feel like I do?

I was curious if my own experiences with celiac disease was similar to others. So I decided to do some research for statistics. What I found was eye opening and surprising, even to me. It's interesting to look past the celiac help books and see what others on a gluten free diet really feel like and live with on a gluten free diet. There are so many misconceptions about celiac disease, even in the celiac community. Here's some statistics that show how people with celiac disease are really living everyday:

1. 68% Of those with celiac disease have a shared kitchen
Having a shared kitchen more common then I expected. While a shared kitchen is totally doable, it makes staying gluten free harder (AKA cross contamination is everywhere).

Quick Tips:

  • Have a dedicated gluten free part of the counter
  • Have all your gluten free pots, pans, mixing spoons and sponges the same colour so they don't get mixed and everyone knows the difference.
  •  Paper towel is your new best friend

2. 57% Sometimes feel embarrassed to eat in front of other people
There is still a stigma against those eating gluten free foods, but the quicker you can ignore this the happier you'll be. Regardless if you're bringing your own food or ordering a gluten free meal don't feel ashamed or awkward about it.

Quick Tips:

  • Ask yourself why you feel uncomfortable sometimes eating in front of people and see if it's holding you back from social experiences. If it is make a list of ways you can overcome this fear.
  • Don't avoid it, this will only make the feeling worse.
  • Know that most people are kind and you shouldn't feel embarrassed because of your medically necessary diet.

3. 60-70% Of adults with celiac disease only go into partial remission
Children with celiac disease have a 90% remission rate, but adults with celiac disease only go into complete remission 30-40% of the time. This is suspected to be from continued gluten exposure or because the person has extensive damage to their small intestine from several years with the disease. Partial remission means there is still some inflammation in the small intestine and symptoms aren't completely relieved, despite a gluten free diet.

Quick Tips:

  • Eliminate any risk of cross contamination by eating a diet low in processed foods (even gf ones), grains and be careful eating out. 
  • If you're still experiencing symptoms get checked to see if there is a different underlying condition.

4. 70% Regularly ingest gluten accidentally, despite thinking they're on a strict gluten free diet
This is a sobering statistic. Staying on a very strict gluten free diet is hard, so knowing that more then likely you're are still ingesting gluten despite your best efforts can make you feel defeated. The good news is there is some easy steps you can take to lower your risk of accidentally eating gluten. 

  • Repeat from above, eliminate processed foods
  • Do an overview of the potential places you could be getting sick from and eliminate possible cross contamination risks. Like being careful in a shared kitchen and restaurants.

5. 44% Get glutened a least once a month
Do you find yourself getting glutened all the time? I was surprised that half of all of those with celiac disease get glutened at least once a month. 

Quick Tips

  • If you find yourself getting glutened regularly and eat out consider taking a break from eating at restaurants to see if that helps.
  • Again, eating a diet in whole foods and low in processed foods and grains can help further reduce your gluten exposure.

6. 49% Have sacrificed a major life event because of their celiac disease
No one should have to miss out on anything because of celiac disease. This to me was one of the most surprising statistics. It shows you how intertwined food and culture are. When you eliminate a food group you shouldn't have to miss out on life.

7. 12% Admit to cheating on their gluten free on purpose diet regularly
12% might not seem like a high number, but that's 12% to many. We've all been there, tempted to eat our old favourite foods, but there are real consequences that far outweigh the short term benefits of eating that doughnut.

Quick Tips

  • If you feel the urge to cheat remember that cheating on your diet can lead to everything from cancer to other autoimmune diseases.
  • Have healthy homemade gluten free replacements to eat instead of cheating.
  • Just say no! Don't feel pressured into eating gluten.

8. 5-22% of people with celiac disease have an immediate family member (first degree relative) who also has celiac disease.
If you have celiac disease it's so important that your first degree relatives get tested for celiac disease, even your second degree relatives.

9. Only 35% of newly diagnosed patients had chronic diarrhea
This dispels the myth that diarrhea must be present to diagnose celiac disease. You can have zero digestive symptoms (or no symptoms at all) and still have celiac disease. It's surprising to learn that not even half have chronic diarrhea, which is the main symptom that's associated with celiac disease.

10. 41% of adults diagnosed during the study were asymptomatic (without any symptoms) when diagnosed
I was under the impression that majority of people diagnosed with celiac disease were very ill at the time of diagnosis, but to learn that 41% had no symptoms was a surprise. Celiac disease without symptoms is usually discovered because of an iron deficiency, weak bones or abnormal blood test results. 

Beyond Celiac
University of Chicago Celiac Disease Research Center

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