Celiac Awareness Month – Living Gluten Free

It’s Celiac Awareness Month!

Being gluten free for eight and a half years now has been tough.  Back when I was diagnosed, gluten free products were in short supply.  Virtually no restaurants had ever heard of the disease.  And for a kid who was told while staying in France that she “tu manges les pains comme un gateau” (you eat bread like cake) (though in my defense true French bread is devine), having to leave behind the pastas, pizzas, breads, sandwiches, and things I never thought of like soy sauce, frappuccinos,  and tomato soup, was torture. (I’ve never really missed beer!)

Today, Celiac Sprue is much more well known – especially thanks to celebrities like Elizabeth Hasslebeck and progressive communities offering gluten free options.  Still, it’s a hassle to say the least when eating out, going to parties, and even just trying to explain it to others.  I’m so thankful for my gluten-free buddy who helped me in those early days.

Celiac Sprue is an autoimmune disease.  When I consume gluten – found in wheat, rye, barley, semolina, spelt, kamut, and other grains – an immune-mediated toxic reaction occurs, causing damage to my small intestine and doesn’t allow food to be properly absorbed.  Anyone with Celiac Disease knows how excruciating a “celiac attack” can be.  And the effects can stay with me for weeks after, impacting my gastro-intestinal system.  Thus, I maintain a strict gluten free diet.  If I didn’t, I could suffer from even worse complications down the line like iron deficiency, osteoporosis, vitamin and mineral deficiencies, and cancer.  Besides, no one would willingly put themselves through a celiac attack.

So what do I do to keep living a normal life?

  • I eat at restaurants with a specified gluten free menu like PF Changs, Outback Steakhouse, Pei Wei, BJ’s Brewhouse, Carabba’s, Beau Jo’s (in Denver), or others. (you can often find these on their websites)
  • If the restaurant doesn’t have a specified gluten free menu I call ahead to ask if the manager or chef knows what’s gluten free on the menu or what can be prepared gluten free.  If they aren’t sure, I ask for ingredient lists and explain cross contamination (that my food needs to be prepared and cooked on clean surfaces that don’t have wheat on them)
  • I always make sure to be clear with the waiter that I CANNOT have gluten on my plate, and have learned to send things back without regret if they get the order wrong.  I usually tell them it’s an allergy because more people understand the importance of food allergies
  • I eat healthy.  Really, a lot of the grains we eat are in things that aren’t so good for us, like fried foods, pizzas, white breads, fast food, etc.  I have PLENTY to eat – vegetables, fruits, meats (watch the marinades and spice mixes), yogurt, cheese, milk (though some with celiac also have lactos intolerance unfortunately), corn or potato or rice based products, and products that leave out wheat as a filler – like eating a natural tomato soup instead of good ole campbell’s and finding soy sauces without wheat.  (always read the labels)
  • Many stores now have a gluten free section, or intermix gluten free products throughout the store.  A grocer will usually be willing to tell you where to find what you need.
  • Early on, I joined local support groups to meet people living with celiac and get advice
  • I support local businesses that make gluten free products, it’s fun to try new things that people come up with.
  • When traveling internationally, I carry cards explaining celiac in different languages.  I was so grateful for these on my only international trips since my diagnosis.  I never had an issue in Amsterdam or Bosnia (I didn’t have a card for Srpski but I was able to get the point across).  In fact, quite a lot of European countries cater to us celiacs and are quite knowledgeable.
  • I educate friends and family and offer myself as a resource for those newly diagnosed and support research – particularly at the University of Chicago Celiac Disease Center
  • And I pack my own food wherever I go – on the plane, out for the day, at work, or at family gatherings and potlucks.

I could go on and on about being celiac isn’t as many comment “so horrible.”  Though many say, “I’d die if I couldn’t eat those things,” it’s not so bad.  Sometimes it takes a bit to adjust your taste buds to the taste of gluten free – it’s not the same texture or density but you’ll get used to it.  The amazing part is how many name brand products are coming out with gluten free products or labeling their products as gluten free.  Chex finally got rid of the malt flavouring in their cereals so they are gluten free.  (I wish Corn flakes and Rice Krispies would join suit!) Betty Crocker makes AMAZING cake and brownie mixes.  Yoplait’s yogurts are all marked on the back “gluten free.”

Plus there are many more products on the market now that taste amazing – anything by Udi’s, options from Glutinos, Cookies and donuts from Kinnikinnick, King Soba noodles (I recently discovered these and they are super delicious and come in many varieties), Larabars and Kind bars, Van’s waffles, Enjoy Life brands, and many more.  So you won’t have to worry about lack of choices.  To keep costs down, I order online if I want to buy items in bulk – usually from Amazon.com.

The most frustrating thing for me about celiac disease is feeling left out.  I hate going to office parties or lunch meetings where I can’t eat anything.  And then I can’t stand when someone tries to “fix” it but ends up making a big deal over it and embarassing me.  Mostly, it’s frustrating to constantly educate others about the disease (including hospitals where you would think they would know) who make flippant comments about “what can you ever eat?” and “man, that sucks, I couldn’t do that.”  I suspect I’m not alone in these frustrations.  So for those without celiac, be sympathetic.   I have many options, I live just fine without gluten and probably healthier than I did before, and I hope that others will become aware of this disease.  What I cannot imagine is how those who are homeless or poor or those displaced by disasters may not have access to gluten free products.  Maybe we can focus our efforts on ensuring food banks and relief efforts can have gluten free options for those they serve.

Here’s a bit more info:

  • 1 in 133 people have celiac, which can only be affirmatively diagnosed at this time with a blood test and biopsy of the small intestine.  Most people go undiagnosed or misdiagnosed (still many think they have irritable bowel syndrome and not celiac)
  • Celiac disease affects at least 3 million Americans.
  • 60% of children and 41% of adults diagnosed have no gastro-intestinal symptoms (making it harder to diagnose, and even harder to convince these folks to convert to a gluten free diet)
  • The average length of time it takes for a symptomatic person to be diagnosed with celiac disease in the US is 4 years
  • Those who have Celiac Disease may also suffer from other autoimmune diseases such as Type 1 diabetes
  • There are more than 2,000 gluten free food items available in the United States, and consumers are more likely to find these foods in regular grocery stores. From 2004 – 2005, sales of gluten-free foods increased by 77.8 million dollars (a growth of 14.6%).
  • Celiac is not a good diet to lose weight as many gluten free products actually have more fat and sugar to make it a bit tastier

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5 Responses to Celiac Awareness Month – Living Gluten Free

  1. JJ says:

    My mother has (or has had) practically every illness possible: polio, MS, cancer, blood pressure complications, and on and on. She has just been diagnosed with IBS and I keep trying to convince her to go gluten-free for just a little while, to see! But she’s never heard of celiac, so she doesn’t really “believe” in it — which is what public awareness efforts are all about. 🙂

  2. […] National Celiac Disease Awareness Month (see my post – Celiac Awareness Month – Living Gluten Free) […]

  3. Conrad says:

    I think that Celiac Awareness Month has been pretty successful this year! I hope that lawmakers will start to take notice about food labeling for those suffering from food allergy’s. As you mentioned in this post there are over 3 million people who suffer from Celiac Disease and over 20 million people who suffer from a form of gluten intolerance. With big rallies in Washington and Ottawa, Canada this month I’m sure the disease will start to appear on their radar.

    Many thanks for this very informative post!

  4. […] for celiac, if you asked me which of my illnesses I’d cure first, it would be this autoimmune disease […]

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