When I was first diagnosed with Celiac disease I had no idea what it was. I did not know anyone at that time that had celiac. I left the doctor glad to have answers, but I did not know what was next. I went home, started researching, and bought a bunch of books so I could begin to educate myself.
Shortly after I was diagnosed, my four-year-old daughter was diagnosed with celiac disease. That made things a bit more stressful. It's awful worrying about accidental gluten ingestion for yourself, it's even worse worrying about your child.
The first year was difficult. Going gluten-free did not solve all my stomach issues. It took a full year to start to feel better. I needed to learn everything I could about gluten. I quickly learned that gluten can hide in so many products. Recipes had to be adjusted so we could eat them safely and eating out was a nightmare.
The more I look back on my experience the more I wish the medical community were better educated about celiac disease. Every patient diagnosed with celiac disease should get a referral to a dietitian who is knowledgeable about celiac, as well as a referral to a doctor who specializes in celiac disease. I believe this happens in bigger cities where there are celiac centers but many of us don't live close to those areas. If these resources were available to my daughter and me, I believe our adjustment would have been much smoother.
The restaurant industry also needs more education about celiac disease. When I traveled to Ireland this summer, I was amazed at how much servers knew about celiac. This was throughout Ireland not just in the larger towns. Each menu listed the top 14 food allergens at the bottom. Then each food item had to display what allergens they contained. Almost every place we visited had at least one item that we could eat that was gluten-free. Why is this not the case in the United States?
I hope that all of us in the celiac community, continue to educate and advocate about celiac disease. The more people we can educate, the more understanding others will have. This is not a fad, a weight loss plan, or a diet for us. This is our medication and the only choice we have to stay healthy. We need our community to take it seriously. Hopefully, this education and awareness can help others get a diagnosis sooner and make living with celiac disease a little easier and less isolating.
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