Celiac and Gluten Intolerance Awareness

May 2010 is officially Gluten-Free Awareness Month. As I mentioned before, the first-ever Gluten-Free Challenge is happening on May 22-23, 2010 in order to raise awareness. If you’re interested in learning more about the challenge (or taking the challenge!), check it out at http://www.gogfchallenge.com/.

A lot of other things are happening this month in order to promote the awareness of celiac disease and gluten intolerance. For example, check out the 16-page article here in today’s USA Today. It’s a great overview of celiac disease and shares interesting stories of various people with celiac disease. I certainly hope this and other efforts increase awareness. After all, celiac disease is one of the most undiagnosed autoimmune disorders in the world – and particularly in the United States. It is believed that one in 133 Americans have celiac disease (1 in 56 with related symptoms, and 1 in 22 for those with first-degree relatives with diagnosed celiac disease), but approximately 95% of those Americans are undiagnosed. They don’t know they have it. Undiagnosed celiac disease can lead to many complications, including increased risks for cancer, osteoporosis, osteopenia, iron-deficiency anemia, neurological problems, and other related autoimmune diseases, such as Type 1 diabetes, thyroiditis, or alopecia. Obviously, having celiac disease and not knowing it, and not treating it, has consequences.

What are some of the symptoms of celiac disease? Once upon a time, when celiac disease was considered rare and a childhood disease, diarrhea was one of the primary symptoms. Now, doctors are starting to understand that the symptoms associated with celiac disease are varied. They can include:

– recurring abdominal bloating and/or pain

– chronic diarrhea and/or constipation

– vomiting

– Liver and biliary tract disorders

– weight loss

– pale, foul-smelling stool

– iron-deficiency anemia that does not respond to iron therapy

– fatigue

– failure to thrive or short stature

– delayed puberty

– pain in the joints

– tingling numbness in arms or legs

– painful sores in the mouth

– a skin rash called dermatitis herpetiformis (DH)

– tooth discoloration or loss of enamel

– unexplained fertility or miscarriage

– GERD

(for more symptoms, visit here)

Many times, people with a range of these symptoms are misdiagnosed with diseases such as irritable bowel syndrome (IBS), ulcerative colitis or Crohn’s disease, GERD, or countless others. Some people exhibit some of these symptoms, but some people with celiac disease are what they call “silent” celiacs – they exhibit little or no symptoms.

The tests for celiac disease available are relatively straightforward. There is an antibody blood test, and there is a biopsy test. The biopsy is more accurate, as it can potentially show damage to the small intestine (villi) – the “gold standard” indicator of celiac disease. However, there are still those that show negative on these tests, yet their health still improves on the gluten-free diet. These are the people thought to have gluten intolerance. Some were not tested for celiac disease, or perhaps they were tested but the results were negative. (This is what happened to me) Regardless, they know they feel better without gluten. For these people, the proof is in the pudding (or gluten, really). Some research has suggested that gluten intolerance is even more prevalent than celiac disease.

If you or someone you know exhibits some of these symptoms, get tested. In my situation, I was feeling worse and worse. I wasn’t even 30 years old yet, but was fatigued, had constant heartburn, digestive symptoms, vitamin B12 deficiency, tingling and numbness in my hands and feet, and intense brain fog. I was doing everything “right”. I was exercising daily. I wasn’t overweight. I ate a lot of fresh fruit and vegetables and whole grains. Yet I continued to feel worse. Even though my blood test came back negative for celiac disease, I knew that I had a family history of gluten intolerance. So I finally made up my mind that I had to try something. So I went on a gluten-free diet for 2 months. Rather quickly, most of the symptoms disappeared. I felt less fatigued. My mind was clear. My heartburn started to go away. And when I “tested” myself (I ate rolls, couscous, and a cookie within 24 hours), I immediately knew. Those symptoms all came rushing back, plus some. I was SICK, and it was dramatic enough that there was no question in my mind. Ever since then, I have been gluten-free, and my health has improved. I am still healing, but it has made a dramatic difference in my life.

Learning to live gluten-free isn’t a piece of cake (haha). But once you understand the rules, it starts to become a routine. The easiest thing to do – and the best thing for your health – is to eat items that are naturally gluten-free. Most Americans eat way too many processed foods anyway, and it takes a toll on their health. For those with gluten intolerance, the toll is even greater. Processed foods have a lot of hard-to-digest preservatives, and many have gluten-containing ingredients (some of which are not readily apparent, even to the best label-readers.). It’s much easier to digest whole, natural foods – fresh chicken, fresh vegetables, steamed rice, etc. For some helpful hints on transitioning to a gluten-free diet, check out Shirley at Gluten Free Easily’s list of 50+ Gluten-Free Items You Can Eat Today or Karina at Gluten Free Goddess’s Gluten-Free ABCs. It’s a big change for many people. I can’t lie to you about that. But I promise you, it’s worth it.

Don’t forget that support is important too. You don’t have to feel isolated. The Gluten Intolerance Group has local chapters – you can feel free to join and attend meetings and such. There are forums, such as Celiac.com, where you can discuss anything, gluten-free related or not.  My preferred support group is right out here in the blog world – I have found friends, even heroes, in my blog reading! You think it’s tough being an adult with gluten intolerance? Check out Elana at Elana’s Pantry or Heidi at Adventures of a Gluten-Free Mom, both of which feed their children gluten-free diets. Shirley at Gluten Free Easily is active in her local gluten-free support groups and is always helpful. Linda at Gluten-Free Homemaker seems to be the queen of baked goods. Amy at Simply Sugar and Gluten Free and Ali and Tom at Whole Life Nutrition Kitchen really help me out in making super-nutritious, delicious meals. Diane Eblin is driving our newest blog craze, 30 Days to a Food Revolution, over at The W.H.O.L.E Gang. Each of these blog friends and many, many more have been instrumental in not only keeping me sane as I transitioned to a gluten-free diet, but they’ve been inspiring, helpful, and such great friends.

So if you haven’t already signed up for the challenge, please consider it. Also consider increasing celiac and gluten intolerance awareness any way you know how – post updates on Facebook, Twitter, or email your friends.

Don’t Forget!

There’s still time to enter for a chance to win a zoo animal pancake pan! Check it out here!

Resources used for this post include:

The University of Chicago Celiac Disease Center

http://emedicine.medscape.com/article/932104-overview

The Gluten Syndrome.net

The Gluten Intolerance Group of North America

Comments

  1. says

    Great post…lot’s of important information packed in here!

    We eat a lot more gluten free at our house (since I did my detox last year and have seen tremendous results) I’m going to look into doing the challenge.

    Thanks for posting all of this valuable information.

  2. says

    Outstanding post, Alta! (I greatly appreciate the kind words and link love, too.) Sharing your own story is so helpful. It helps folks see that you have to completely remove gluten for a good period of time to see its effects, both the positive when one is 100% gluten free and the negative when one ingests gluten again, accidentally or purposely.

    I think part of the problem is that folks who have one or several of these issues can look at this listing and still dismiss them. The recurring abdominal pain can be, “Oh, Susie, just has another tummy ache. She’ll be okay in a little while.” Or, “John spends a lot of time in the bathroom. His whole family is that way.” Or “Mary is just a little behind.” The reality is that it’s not the issues themselves that run in families, it’s the cause of them–often gluten. Plus, we all tend to accept our issues (particularly if we’ve learned to live with them), and our doctors often accept them as our particular “plots” in life, too, giving us lots of medicines to combat many of the issues. Thanks so much for spreading awareness, Alta! I just recommended your blog in my presentation on Using Blogs and Other Social Media to Your Best Gluten-Free Advantage. :-)

    Shirley

  3. says

    I love this post Alta, great resource links you mentioned, I love Shirley’s 50+ List, I am going to print it for Sam’s teacher! Thank you for mentioning my blog, such an honor for me. :-D

    Happy Mother’s Day tomorrow!

  4. says

    This post is so full of great information – thank you! Our son has experienced food intolerance that was so severe he could only handle chicken, peas and rice for several months. Foods just did not work well for him because it seemed like everything made his Eczema so bad. It was a hard time for our family. I wanted to share though that after going to so many doctors and using so many creams – the one thing that has helped him so dramatically has been his Vidazorb chewable probiotics. It was truly a miracle for us when we saw that it cleared his skin up so much and allowed him to finally eat and tolerate all kinds of food that he once could not. I hope our story can somehow help :)

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