National Foundation for Celiac Awareness – Celiac Awareness Month

In case you haven’t already heard, May is Celiac Awareness Month. This is a fairly new designation; but it’s quickly gaining ground. I, for one, hope it continues to do so. The National Foundation for Celiac Awareness states that 3 million Americans are affected by celiac disease, yet 95% don’t know they have it. That’s nearly 3 million people that are suffering from symptoms ranging from digestive distress, emotional, neurological, and behavioral disorders, numbness and tingling in various parts of their bodies, headaches, malnourishment, and many other things, not knowing there’s a way out. Did you know there are more than 300 symptoms of celiac disease? All of these could be alleviated by a gluten-free diet.

And that’s just celiac disease. What about those with gluten intolerance? The numbers for those that cannot digest gluten are many times higher.

Many of us with undiagnosed celiac disease or gluten intolerance visit the doctor, complaining of symptoms. I did. It started in 2004-2005 – and I complained of a lot of digestive issues. (In hindsight, I had some of these issues for many, many years before then – they just worsened over time.) After multiple visits to my doctor, multiple visits to a gastroenterologist, I was told I had Irritable Bowel Syndrome. I was given several medications (none of which worked). After explaining to my doctor that I had an immediate family member with diagnosed celiac disease, he reluctantly gave me a blood test. All the while he told me I couldn’t have this issue – I wasn’t underweight. (Fact is, many people with celiac disease and/or gluten intolerance can be at any weight.) My blood test did come back negative. I kept eating gluten, and resigned to the fact that I’d have to deal with my issues for the rest of my life.

A few years passed. Over time, I wanted to be healthier. I didn’t feel energetic anymore, and I had even been given ADD medications for a while, as it became harder and harder to focus at my job. I started to try to exercise daily. I transitioned to a healthy, nourishing diet. More whole grains (lots of whole wheat bread), more vegetables, less fast food. I did all the “right” things. And yet I continued to feel worse. I got sick more often, I couldn’t handle stress, my hands and feet would swell, go partially numb and tingle, I couldn’t focus, and my digestive issues continued to plague me. My vitamin B and D levels were low, even though I regularly took supplements and ate properly. Towards the end of my “gluten-eating time”, I couldn’t eat anything, it seemed, without severe heartburn and/or nausea. I’d given up my well-loved imported beer, my coffee, and regularly took Prilosec with little relief. Finally, after talking with other family members that already went gluten-free, I decided to eliminate gluten from my diet. I did a 90-day trial. Most of those symptoms disappeared before the 90 days was up. I felt better – better than I had in a long time. I did eat gluten at the end of the 90 days, to “double-check” that it was indeed causing me harm, and my reaction to it was severe enough that I knew I had to stay away from it for the rest of my life. I never received a formal medical diagnosis of celiac disease, but I know my body doesn’t like gluten. That’s enough for me.

Many times, throughout this process, I felt like I was going crazy. That it was “all in my head.” That I had to deal with it, and that I was just getting older. (I went gluten-free at age 29. I certainly hope that’s not old!) I’ve heard this story echoed over and over as I’ve become friends with others that have discovered they are intolerant to gluten or have celiac disease. Often times, it takes years until a diagnosis is reached. Or in my case, it’s a matter of personal trial and error. (In my mind, that almost makes it tougher – many people don’t feel “validated” without that diagnosis. We should take our health and our diet just as seriously as those with a diagnosis. After all, our bodies react “seriously” to gluten!)

This is what makes Celiac Awareness Month and the National Foundation for Celiac Awareness so important. Their mission is to further research and raise awareness for celiac disease and gluten intolerance. They work to improve the time it takes for someone to receive a proper diagnosis, and to help people improve the quality of their lives.

They offer valuable information for anyone curious about what celiac disease is, what the symptoms can include, and how to deal with a gluten-free diet. They offer educational opportunities and events. They are even highlighting gluten-free bloggers every day this month on their blog (I’m one of them highlighted today!) Their website is a wealth of information and an opportunity to gain a sense of community. (For those of us dealing with gluten intolerance or celiac disease, we need all the information and community we can get.) I hope to see more and more positive events in the future from the National Foundation for Celiac Awareness and others – awareness is the only way that the millions of undiagnosed people can begin to find relief.

For those of you that suffer from some of the symptoms of celiac disease or gluten intolerance - it’s not all in your head. Visit your doctor. Get tested. Listen to your body. For me, that last part is still a work in progress, but I feel a million times better than I did two years ago. I promise you, if you find gluten is causing your problems, removing it from your diet might seem daunting at first, but you’ll feel the benefits. Your body will thank you.

Want to read more stories about symptoms of celiac and gluten-intolerance? Check out this great post by Gluten-Free Girl. She shares her story, but there are many, many commenters on that post that share theirs as well.

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7 Comments

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7 responses to “National Foundation for Celiac Awareness – Celiac Awareness Month

  1. Thanks for sharing your story and promoting celiac and non-celiac gluten sensitivity awareness, Alta. The latter is the most important to me as the folks who fit in that category will continue eating gluten and getting worse as you demonstrated. NFCA is a great organization and does so much for those who are gluten free or need to be. I think the best part of their website, in fact, is their section of personal stories. Just like yours you’ve shared here, the stories will help people know if they have a gluten issue. Off to check out your feature!

    Shirley

  2. I like the way you presented your post above. You are a blog mega guru!

  3. Great post—this is really interesting to me, since I have some of my own issues and also because many of my clients could benefit from more information too.

  4. For the last few weeks I’ve had terrible heartburn and have been wondering if it was to do with gluten!!!!! Oh, I’ll have to watch it. Thanks for sharing

  5. Tara

    Thank you for this post! I’ve recently considered the possibility of having celiac due to the number of symptoms that have been present for years, but have worsened in the last year. I never thought it could be that until one symptom led me to a Google search last week which led me to celiac. Like you, I started exercising and eating better (whole foods/whole wheat, vegetables/fruits, etc) years ago but I still feel ill most of the time! I’m getting tested this week but if it comes back negative, I know I’m still going to give the gluten-free diet a shot. It was nice to come here and read your post at this point in my life.

  6. Alta – Thank you for your well written and presented article on your decision to go glutenfree! It was almost as if you were describing me and my problems.

    About 4 years ago I was more or less forced into glutenfree eating – I had terrible stomach problems – could hardly eat anything and finally when I was given a meal (fish covered in wheaten – not corn flour – batter) I was vomiting all night and that was a very strong incentive not to eat gluten again. My situation was compounded by my being lactose intolerant also. (I am sure that I was lactose intolerant from as early as I can remember – I never liked milk because it made me feel icky and most of the time, I vomited when made to drink it).

    I had a blood test which showed that I was borderline celiac but my doctor said that blood tests are not conclusive especially if I had not eaten gluten for a couple months prior to the tests. Luckily he was sympathetic and advised me to avoid gluten and lactose, and seemed satisfied that my improvement of health and well being indeed proved this.

    I have met with a lot of “poohoo-ing” of being gluten and lactose intolerance when going out to eat. It is not taken seriously at all. I usually smile politely and say that I would have almost immediate reaction to eating gluten products by vomiting – so they think twice about making sure I have no gluten in my meals. If I said I was celiac (that would be considered validated by a doctor so therefore not a fad of mine) but I prefer to speak the truth.
    I found your site by accident and was thrilled to find it and all “the whole gang”. How marvellous. I will have soo very many options and recipes to try out.
    Thank you for sharing and all your hard work to help everyone else to enjoy eating gluten/dairy free (etc) foods.
    Cheers from Australia, Peggy

  7. tastyeatsathome

    Peggy – thank you so much for sharing your story. It sounds like you’ve made the right decision – to go gluten-free. I say “poopoo” to those “poohoo-ers”! I’ve had the full gamut of reactions from strangers and friends alike, so I understand. But we have to take care of our bodies, right? Thanks again for stopping by.

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