Why Gluten-Free? National Celiac Awareness Month

chocolate zucchini cake with chocolate coconut "buttercream" frosting

Disclaimer: I am not a medical professional, and the following is simply based on my thoughts and experiences, as well as experiences of others. Tasty Eats At Home is not a substitute for medical advice and care. If you need medical advice, please seek the advice of a professional.

Lucky you, dear readers: throughout this month, I will be sharing information related to celiac disease and gluten intolerance. (Okay, okay, and soon, the recipe for this cake…)

Why?

May is National Celiac Awareness MonthThe National Foundation for Celiac Awareness has committed to increasing awareness of this disease. It is estimated that three million Americans have celiac disease, yet 95% remain undiagnosed. Undiagnosed celiac disease can mean a lot of trouble for someone’s health, including osteoporosis, intense damage to the digestive system, hypothyroidism, and a host of symptoms (explained below) and other health issues. Still others remain undiagnosed because they don’t display classic symptoms, such as Heidi of Adventures of a Gluten-Free Mom, but they suffer in other ways, sometimes from related auto-immune disorders.

In short, awareness is a good thing, and it’s much-needed.

Many of the stories you read related to celiac diagnosis are dramatic. And for good cause. Many times people that suffer from celiac disease go years without a proper diagnosis. They’re misdiagnosed with Crohn’s, with “failure to thrive“, with GERD, with IBS, or are told it’s “normal” or worse, dismissed as if their symptoms are “all in their head.” Fortunately, the medical community is turning a corner and diagnoses are occurring with more regularity than ever, but it’s still a dramatic struggle for many sufferers. Some have been in and out of hospitals, or even near death, before they are properly diagnosed.

In my case, it wasn’t quite so dramatic. You see, I was never diagnosed with celiac disease.

Then why am I gluten-free?

I am gluten-free because I am gluten intolerant. How did I discover this? I started to have a lot of digestive issues in my early twenties. It started as bloating and constipation alternating with diarrhea. I visited my doctors, who prescribed a few things (none of which worked), and then I saw a gastroenterologist. They conducted a few tests, including a celiac blood panel test (at my insistence, as my father has celiac disease – I didn’t know at the time that the blood test isn’t all that accurate). It came back negative – all the tests came back negative. I was told I had IBS and was sent on my way.

Over the next few years, my symptoms got worse. I was exhausted even with adequate sleep. My digestive issues worsened and now included heartburn that couldn’t be remedied by any medication. I’d given up alcohol and coffee, but even eating caused heartburn (so did not eating). I had tingling and numbness and swelling in my hands and feet. Recent bloodwork showed vitamin deficiencies. And I had brain fog. I couldn’t keep on task, at times would space out on the simplest things. Finally, I’d had enough, and in 2009 I opted to do a 60-day gluten-free “challenge” to see if it helped. I felt so much better soon after eliminating gluten from my diet – nearly all of those symptoms vanished. When I reintroduced gluten into my diet on a trial after that 60-day period to “see” what happened, I immediately had those symptoms rushing back – I’d stumble over words when trying to speak, my hands and feet would swell, I’d be exhausted and nauseous and oh, the digestive woes that resulted! I knew gluten was a problem for me, so I’ve stayed away from it ever since.

I didn’t end up with a list of debilitating illnesses, and thankfully, I wasn’t hospitalized before I realized gluten was the culprit. I owe part of that swift realization to my father, as he was the one that endured years of misdiagnosis before he suspected that he had celiac disease (which was later confirmed by tests). Because I knew about this, I had a heads up that gluten might be a trigger for my ailments as well. I feel blessed to have been able to make the necessary changes to my diet before my health got worse.

People decide to follow a gluten-free diet for a variety of reasons. Often, it’s due to a diagnosis of celiac disease. But many other times, such as in my case, people find they have a sensitivity or intolerance to gluten. Discovering this sensitivity or intolerance isn’t always easy. I only discovered my intolerance by eliminating gluten for a while to see if my symptoms abated. In my opinion, this is the best way to truly determine whether gluten is an issue for you. Some of the symptoms gluten can cause include:

– Abdominal cramping

– Intestinal gas

– Diarrhea and/or constipation

– IBS-like symptoms

– Unexplained vitamin deficiencies, such as B-12, iron, vitamin D, etc.

– fatigue or lack of energy

– unexplained weight gain or weight loss

– migraine headaches

– depression

– mouth sores

– joint pain

GERD

– tingling/numbness in hands or feet

– multiple food allergies/intolerances (evidence of leaky gut syndrome)

– auto-immune and inflammatory diseases, such as lupus, thyroid disorders, Type 1 diabetes, Crohn’s, etc.

There are over 300 symptoms of celiac disease, including some of these (that span across both celiac disease and gluten intolerance) and so many more. Sometimes, gluten can be detrimental to your health without any outward symptoms, or those “traditional” celiac-type symptoms (digestive issues). If you think gluten is causing problems for you, it’s best to get in touch with your doctor to rule out celiac disease. But even if the medical tests come back negative, gluten could still be a culprit. That’s how it happened for me, and I was only able to find out by eliminating it from my diet. Do what is best for your health. (see disclaimer above) You can learn a lot about celiac disease at the National Foundation for Celiac Awareness.

For me, I felt like I was going crazy, like my symptoms were “all in my head” or that I was just “getting older”. (I went gluten-free at age 29. As far as I recall, that’s not old!) But previous to going gluten-free, I’d focused on becoming healthier – I was eating more whole grains (read: whole wheat!) and lots of fruits and veggies, whole foods, and good sources of protein. And I was getting sicker. Only after determining for myself that eating gluten-free was a good idea did I eliminate many of my symptoms and start to really feel like myself again.

Nearly three years later, I’m feeling much healthier. I’m still healing (I still have a touchy stomach that doesn’t really like a lot of grains, and I’ve gone dairy-free as well), but most of those ugly symptoms are a memory. Sure, I had to make some adjustments. I can’t promise all of it has been easy. It hasn’t. But I wouldn’t have it any other way.

Which brings me to you? Do you, or someone you know, suffer from some of these symptoms? Do you have someone in your family that has celiac disease? (If celiac disease runs in your family, it’s much more likely that gluten may affect you as well!) If so, it’s worth doing some digging, with the help of your doctor, to determine whether gluten is an issue.

Believe me, it’s worth it.

And believe me, you’re not alone.

There’s a lovely gluten-free community out there. The National Foundation for Celiac Awareness is a great place to start and to get information. Since it’s National Celiac Awareness Month, there will be a wealth of gluten-free information shared on their blog. Check back every day for helpful tips, whether you’re a gluten-free newbie or a veteran. Or visit Udi’s Gluten-Free Living Community. This site is completely free to join, and there are Live Chats and forums discussing every topic from gluten-free desserts to how to deal with family and friends who just don’t “get” it.

Or share your stories here. I may not be an expert, but between all of us, we can definitely learn from one another, and help one another along the road to healing.

Thank you for all that you do and for being here to help me along my journey! You guys rock!

 

 

Comments

  1. says

    Fantastic post, Alta. You know how much I believe in sharing personal stories to help others see themselves and have the courage to take action to get better. I am also grateful that you share that it’s not an instant solution, but one you would do over again. Hoping for your continued healing and getting better and better!

    Thanks for this one, Alta. Will share!
    Shirley

  2. says

    Great post. I also tested negative to the blood test. My doctor encouraged me to try the GF diet anyway because she said she’d had patients feel better on it. (I had pain in my stomach – that did go away.) I also call myself “gluten intolerant.”

  3. Gloria Breton says

    Thank you so much for posting this! I have Hashimoto’s and also consider myself gluten intolerant. I may actually have celiac, but since I stopped gluten a few months ago (at the recommendation of many Hashi’s resources), testing is even more tricky for me. What I do know is that I tried gluten again a couple of weeks ago and got really sick (terrible muscle and joint pain, swollen glands, numbness and tingling in my arms and legs, jitteriness, headache, and a feeling like I was sleeping on broken glass at night). As soon as I stopped the gluten my symptoms started to go away. I am still exhausted and not back to my “pre-gluten trial” self, but it was enough to convince me that, test or no test, I cannot tolerate gluten. Family members think I am following the latest fad. I just have to take that with a grain of salt and continue on with my quest for a healthy, gluten-free (also dairy/soy/rice/bean and refined sugar-free) life.

    • altawrites says

      Shirley – Thank you! I agree – sharing stories helps in so many ways. I know that talking about our various stories throughout the celiac/gluten-free community over the past 3 years has really helped me. Thanks for sharing!

      Shannon – I hope you find the GF diet to solve your stomach pains! I figure it doesn’t matter what we call ourselves, when it’s all said and done – it only matters that we feel better! :)

      Gloria – I might have had celiac disease too, but I never went for the biopsy test (and even that is tricky) and went gluten-free before I could be tested. So I’m with you there. I am glad you’ve taken on the gluten-free diet and are feeling better – and sometimes, it’s nice to have that confirmation (when you do eat gluten) that tells your body “hey, we don’t like this, don’t give it to us again!”. Hopefully your family will come around. There is a section on the Udi’s GF Living Community Forums that is just for dealing with family and friends – you’re not alone with them not taking you seriously. Sometimes, it takes time. Best wishes to you!

  4. says

    Stories such as yours, Alta, put it all in perspective. Thank you for sharing. It’s so important to increase awareness and help people understand the variety of ways gluten can undermine health.
    Melissa

  5. says

    I really appreciated your post. I am 52 years old. And I have an identical twin sister. So we both have (of course, we’re identical) Hashimoto’s since we were 20. Well, 3 years ago, my sister was having trouble with her thyroid medication being absorbed by her body. So her doctor decided to do a biopsy of her intestines. And discovered she had Celiac! So, of course I had my doctor run blood work on me, and I came back with Celiac. We have been gluten free for almost 4 years. My frustration comes from my other family members refusing to get tested! We have 5 other siblings that won’t get tested. Our mother died at 55 (was never tested, by we both know that’s what she died from) and I have 8 children that only 3 have been tested. The others won’t. My youngest of the 8 is 17, and I had her tested, and she also has it! Our biggest challenge is finding “quick” foods and snacks that are gluten free when your on the go! And finding “cheap” good bread!!

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