What I’ve Learned In A Year, Gluten-Free

It dawned on me this morning that today was a significant day. One year ago today, I decided to go gluten-free for a 2-month trial. But unlike a previous attempt at a gluten-free diet, this time, I would be overly cautious. This time, I would give my body time to decide whether gluten was a problem. And when I “challenged” in August (Meaning I consumed gluten. Consumed is such an understatement. I scarfed down a roll, some bulgur salad, and a piece of chocolate cake. Yikes!), I knew. All of those symptoms that had slowly abated came rushing back. I was sick – sick enough to know for sure that for my body, gluten was the enemy.

I would love to say that changing to a gluten-free diet was as simple as turning on a light switch. It wasn’t. I thought it would be relatively simple – after all, I have cooked for my Dad, brother, and sister many times, and they have all followed gluten-free diets for years. But cooking for someone once in a while and living the gluten-free life are two different things. There was indeed a learning curve – and I’m still learning. But I am still so thankful for making the decision to go gluten-free. While it’s definitely not a decision everyone should make, it has changed my life for the better. I thought I’d share some things I’ve learned during my journey this past year, in hopes that my lessons learned can help others that are just starting out.

Start with fresh, whole, naturally gluten-free foods. This is not only easier to learn (there’s no label-reading on a piece of fresh fruit), it’s easier on a sensitive, still-healing digestive system. While it’s normal to want a gluten-free version of your favorite old gluten-filled dishes, it’s best for your body – and your wallet – to keep the purchase and consumption of processed, packaged, or even homemade gluten-free “replacement” foods to a minimum. Allow yourself to heal and nurture your body with real food.

Listen to your body. Many times, those of us with gluten issues have overly sensitive digestive systems. Some of us will have intolerances to other foods in addition to gluten. Over the past year, I’ve learned that my body can’t handle being overtaxed, and it just doesn’t like a lot of things. I have recently removed dairy from my diet as a result, and I limit my consumption of sugars and processed foods. If I’m having a particularly rough day, I revert back to what my body seems to handle best – whole, natural foods with very little done to them. (see above)

Be patient. For some, removing gluten from their diet meant they saw immediate, drastic improvement, almost overnight. For me, and for a lot of others, this wasn’t the case. Some symptoms disappeared pretty quickly – I was no longer exhausted, I could think clearly, my feet and hands stopped swelling and tingling, and within a few months, my chronic heartburn went away. But some  took longer. My digestive system is still sensitive, so I know I’m still healing. But I do see small improvements – things that used to bother me before are more tolerable now. But just because I’m not 100% better a year later doesn’t mean that the gluten-free diet isn’t working. I know it is. It just takes time. (If someone could tell that to my desires for things like cakes, pies, cookies, etc., that would be great.)

Speak up. I am not one to want to make a big deal out of things. I don’t like feeling as though I’m “high-maintenance”. When I visited a restaurant, or was invited to someone’s house, I didn’t like asking a bunch of questions about what was in the meal, how it was prepared, etc. I felt like I was drilling people. And at first, I paid the price for my lack of thoroughness. I learned the hard way that I must be an advocate for my health, and I couldn’t be shy about asking the required questions. Now, I have overcome this “shyness”. If I am going to eat someone else’s food, I ask a lot of questions. I have to. I remind myself to try to see it as an opportunity for education. If the restaurant is willing to listen carefully and accommodate me, and they come to understand my needs, it’s a win-win for both of us. I become a loyal, repeat customer for them, and I have a place where I can relax and enjoy my meal. When it comes to visiting friends, I feel it’s also an opportunity for education. I have some friends that are truly wonderful – they research and learn what is safe for me to eat, and have accommodated me. For that, I’m truly grateful. For those times when I’m unsure of the food, I make alternate plans for my meal, so I’m not taking chances on my health. Which brings me to my next point.

Plan ahead. If you will be away from the house for a while, make sure you pack safe snacks or a meal. If you are traveling, make plans to bring snacks and even possibly meal components (or scope out a good grocery store, if possible, where you will be staying). This way, you won’t be so hungry that you are tempted to risk questionable meals. If you find yourself in a situation where you have to attend a dinner where none of the food being served is “safe”, then you will have a snack handy to enjoy, and you can still participate in the social aspects of the meal. Some good, portable snacks include: Lara Bars, KIND bars, fresh fruit, nuts and dried fruits, gluten-free crackers (I love Mary’s Gone Crackers), carrot and celery sticks, or even hard-boiled eggs. If you travel often, Shirley at Gluten-Free Easily travels often while following a gluten-free diet, and she navigates quite well! You might consider checking out her blog for some tips.

Read labels carefully. Become intimately aware of where gluten lurks in processed foods. While eating processed foods all of the time isn’t good for anyone, for those with gluten intolerance, they can be particularly difficult. Gluten can turn up in a lot of things that you wouldn’t expect – vitamins, shampoo, lipstick, condiments, broths, sauces, marinades, spices, etc. There are a lot of ingredients listed on labels that may mean that the item contains gluten, but those ingredients are not always obvious. There is a helpful list here to help you determine whether an item is safe. If you are still unsure, don’t use the item. You can contact the manufacturer for more information, or you can also use resources to assist you in determining whether the item is safe. Triumph Dining is one such resource, but there are others. (There is even an iPhone app for that!) Make sure you read labels every time you purchase an item – even if it was safe before, the manufacturer may have changed the ingredients.

Allow yourself to be human. It’s okay, especially at the beginning, to grieve. It’s okay to be angry, frustrated, or sad about the change in your lifestyle. You might feel left out of certain things. You might feel like no one understands. Some days, it might just feel like it’s just too hard. That’s totally understandable. It’s during these times when a good, solid support system is essential. Your support system can always be your family and friends (I know I owe so much to my husband – he has had to learn so much throughout this process, and he’s been supportive, understanding, and flexible. Without him, I think there might have been times I would have gone crazy!), but there are also support groups out there. The Gluten Intolerance Group has a lot of branches in North America, for instance. There are also a huge number of gluten-free bloggers out there – my gluten-free blog friends have been a great source of support for me!

Fall in love with what you CAN eat. There is a bounty of delicious, gluten-free food out there. Once I mourned my “loss” of gluten-y foods, I began to shift my focus, not on what I can’t eat, but what I can eat. There is so much to enjoy. Right now, we are in the middle of the best time of year for fresh, delicious foods – I can’t get enough of summer’s juicy berries, fresh zucchini and squash, okra, tomatoes, peppers, onions, herbs, peaches…the list goes on and on. The possibilities for recipes with all of these foods are endless!

For those of you that also must adhere to diet restrictions, what lessons have you learned? What tips do you have to share?

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