Gluten-Free Is Medicine for Me

Imagine having a disease that can be treated entirely by the food you eat. Imagine not needing prescription medicines or having to deal with the side effects from medicine that can often be worse than the symptoms you are trying to treat. You have heard about the healing power of food, but have you heard of a disease that can be healed by only food? Does this sound too good to be true?

This is exactly the case with celiac disease. The only treatment for celiac disease is a lifelong 100% gluten-free diet. Celiac is an autoimmune disease where eating gluten damages the villi of the small intestine, resulting in malnutrition and any of over 300 possible health symptoms. Since tests for celiac disease are only accurate while still eating gluten, it is essential to get tested for celiac disease before trying a gluten-free diet. Ask your doctor to order the celiac disease panel, which is a simple blood test.

The great news is that there are so many choices for finding delicious gluten-free food. It does require vigilance to ensure the food you order at a restaurant or buy in a store is truly gluten-free and not impacted by cross-contamination. However, you will quickly learn the best questions to ask for your safety. Gluten-free is medicine for me. Is it your medicine too?

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Should I Try a Gluten-Free Diet?

Are you thinking of trying a gluten-free diet as a New Year’s resolution or because you think it is a cool trend? Are you wondering if a gluten-free diet is a weight loss diet? Here’s what you need to know before trying a gluten-free diet.

1. Get tested for celiac disease before trying a gluten-free diet. Testing for celiac disease is only accurate if you are still eating gluten.

2. Eating gluten-free is not a weight loss diet, fad or trend. If this is your reason for trying a gluten-free diet, you will be highly disappointed with the results if you don’t have a medically necessary reason for following a gluten-free diet.

3. Gluten-free foods are not healthier choices. In fact, many gluten-free products may be unhealthier than their gluten counterparts and lacking in fiber. There is no benefit to choosing a gluten-free dessert, pizza or bread when you aren’t intolerant to gluten. In fact, this choice will likely be more expensive.

4. Determining if a food is gluten-free can be complicated. Do you know how to determine if oats are safe or unsafe? Do you know all the ways gluten can be hiding in foods, such as malt in Rice Krispies? Do you know how to prevent cross-contamination?

5. If you tested positive for celiac disease, then you need to follow a 100% gluten-free diet. This is the only treatment for celiac disease. Use this gluten-free guide to get started.

6. If you tested negative for celiac disease, but think your health symptoms may be caused by gluten, you could have gluten sensitivity. Here’s what Beyond Celiac recommends for diagnosing non-celiac gluten sensitivity.

“Non-celiac gluten sensitivity is diagnosed by process of exclusion. Experts recommend that you first get tested for a wheat allergy and for celiac disease. If both of those are negative, then your doctor may recommend a gluten elimination diet. If symptoms improve on a gluten-free diet, then you likely have non-celiac gluten sensitivity. It is very important that a knowledgeable physician oversee this entire process, which can help to omit patients self-diagnosing themselves and to reduce the likelihood of a placebo effect occurring during dietary intervention.”

Now that you have the facts, will you still choose a gluten-free diet?  

My Top 5 Celiac Disease Facts

Share these facts for Celiac Disease Awareness Month this May, and leave a comment with what facts you would add to this list. Let’s fight the countless gluten-free myths and insensitive jokes by sharing the facts! 

1. I have an autoimmune disease, not a food allergy.

2. A 100% gluten-free diet is medically necessary for me. It is not a fad, weight loss diet, celebrity trend, or a joke. 

3. Please get tested for celiac disease before experimenting with eating gluten-free.

4. If “gluten-free” food comes in any contact with gluten while cooking or serving, it is not safe for me to eat. 

5. I love that there are tons of delicious certified gluten-free products. I am not deprived or suffering!

How to Get SAFE Gluten-Free Food at a Restaurant

How do you determine if the gluten-free food at a restaurant is truly SAFE for someone with celiac disease to eat? There has been tons of news coverage about Domino’s launching a “gluten-free” pizza that is not SAFE for those with celiac disease.

 

Since May is Celiac Awareness Month, it is the perfect time to implement an easy technique that people with celiac disease and gluten sensitivity can follow at restaurants. We need to ensure restaurant employees understand the importance of SAFE gluten-free food, and don’t confuse our order with a weight loss fad!

 

Use my SAFE technique before taking a bite! 

 

Shared cooking equipment, serving spoons, or fryers? Don’t eat it! 

Alert the chef that you will get extremely sick if your meal is not 100% gluten-free.

Follow recommendations and reviews from gluten-free websites, blogs, and support groups.

Examine their knowledge of gluten-free ingredients and cross-contamination.

  

Help keep the gluten-free community SAFE by sharing this blog post!

New Resource for Gluten-Free College Students

The National Foundation for Celiac Awareness (NFCA) has a new digital publication for gluten-free college students called GREAT U. The terrific resource is a must read for gluten-free high school students applying to college. Those already in college will find the guide handy not only for themselves, but for helping roommates and friends understand the gluten-free diet. Parents will enjoy reading GREAT U, especially the tips on how to make the ultimate gluten-free package.  

 

“GREAT U was created to build gluten-free students’ confidence and empower them to take action on their own behalf while on campus. All students deserve a GREAT college experience, and this publication helps them do just that.”

 

Here are my favorite articles in GREAT U:  

• Gluten-Free No-Nos in the Dining Hall 
• Gluten-Free One Liners
• Hurdling the Obstacles
• Dating Dos and Don’ts 
• Great Stories from Our GREAT Schools (Emory University, University of Nebraska, Lincoln, and University of Colorado Boulder)
• How to Start Your Own Gluten-Free Advocacy Group on Campus

 

Thanks to Kelly Clayton, NFCA’s college intern, and Udi’s Gluten-Free for making this resource possible! Click here to download GREAT U. When you are done reading it, be sure to click the reader feedback button at the bottom to let NFCA know how great you think it is.

Big Gluten-Free News: Glutino Acquisition, FDA Gluten-Free Labeling Proposal, and Schwan’s Pizza

In a shocking announcement yesterday, it was revealed that Smart Balance paid $66.3 million in cash to acquire Glutino Foods! 

"We are very impressed with the Glutino management team, led by Terence Dalton, and believe the skill sets of both the Glutino and Smart Balance teams will contribute to improving the performance of both companies. Both companies have similar missions and values. Through this combination, we believe Smart Balance's core competencies in sales, marketing and product development will help Glutino realize its growth potential, ultimately creating long-term value for our shareholders, and exciting opportunities for our new and existing employees.”

Earlier this week, the FDA held a teleconference about gluten-free labeling, and said that gluten-free labeling rules are expected to be finalized in the third quarter of 2012. Read this great recap of the teleconference from The Savvy Celiac. To submit your comments electronically to the FDA about the gluten-free labeling proposal, follow these steps. Comments are due by October 3, 2011.

1. Go to http://www.regulations.gov. 
2. Select submit a comment from the task bar.
3. Enter FDA-2005-N-0404 in the keyword box and click search.
4. Go to the actions column and select submit a comment.
5. You have 20 minutes to complete your form before the session will timeout. 

As kids are getting ready to head back to school soon, the National Foundation for Celiac Awareness has exciting news about school pizza.

“Schwan’s Food Service, Inc., a leading provider of pizza to K-12 schools, colleges and universities, healthcare facilities and other foodservice venues, has introduced two new gluten-free pizza products to the market. With nearly 40 years’ experience bringing pizza to 75% of the nation’s schools, Schwan’s is committed to ensuring their products are nutritious and delicious. The two new gluten-free pizzas – one for the K-12 market and one for colleges and other operations – are the latest examples of this commitment. Schwan’s Food Service teamed up with the NFCA to better understand the challenges of gluten intolerance and celiac disease, provide training for their sales force, and offer training to their customers.”

The pizza is certified gluten-free and individually wrapped on a baking tray. Many children will be able to enjoy purchasing gluten-free pizza in their school cafeteria this year!

Celiac Disease and Gluten-Free Foods: 10 Great Websites with Accurate Information

When searching for an answer to a question about celiac disease or a gluten-free diet, these websites provide reliable and updated information. In addition to this alphabetical list, many celiac centers have websites with accurate information.

Celiac.com was excluded from this list because of their forums. While forums are good for connecting with other people, most contain a plethora of misinformation. The web is flooded with outdated information about celiac disease and gluten-free foods, so this list will help you find accurate information. 

• Celiac Disease Center at Columbia University
• Celiac Disease Foundation (CDF)
• Celiac Sprue Association (CSA)
• Gluten-Free Dietitian (Tricia Thompson)
• Gluten-Free Drugs
• Gluten-Free Living
• Gluten Intolerance Group (GIG)
• National Foundation for Celiac Awareness (NFCA)
• University of Chicago Celiac Disease Center
• University of Maryland Center for Celiac Research

 

Finding Gluten-Free Support on Twitter, Facebook, LinkedIn, Ning, and Forums

Whether you or a family member are new to gluten-free life or have been gluten-free for years, social networking sites offer invaluable gluten-free support. You likely already discovered the plethora of gluten-free blogs and websites and may be overwhelmed by too much information.

With gluten-free social networking, it is easiest to start with what you know. For example, if you are on Facebook and using it to connect with former classmates, it will be easy for you to like some gluten-free Facebook pages and add gluten-free friends. If you are already using LinkedIn for professional reasons, you can join gluten-free groups there.

My recommendation is to join at least one national/international celiac forum, a local celiac support group, and Twitter. If you are only joining one forum, I suggest the Celiac Listserv. I belong to the DC Celiac Yahoo group, which is a fantastic local resource that even has an extensive restaurant database.

These articles from my Gluten-Free Social Media Tips blog provide information on social networking as well as many links to help you get started.

10 Reasons to Tweet Gluten-Free

Gluten-Free Tweeting 101: Follow These Easy Steps

Top 10 Gluten-Free Facebook Fan Pages

Discover LinkedIn Groups

Ning Makes Gluten-Free Social Networking Easy

Popular Gluten-Free Forums

Unless you are a blogger, gluten-free professional, or social media specialist, don’t go overboard joining everything here. Each one requires time and effort to get the most out of it. No matter how many Facebook pages I like and create, I still find myself on Twitter daily, spending less time on Facebook. If you have a question or need assistance, post a comment below or tweet me @MarylandCeliac.

View the Transcript for the Celiac Episode to Air on Second Opinion

Recently, I blogged about the Celiac Disease Episode to Air on Public Television on October 15 or 16.  The transcript can now be viewed online. This great episode includes Alice Bast from NFCA and Dr. Daniel Leffler.  The patient, a 42-year-old man, presents with swelling in his hands, joint pain, and lactose intolerance. Later, he develops GI symptoms.

This episode is truly amazing awareness! One of my favorite parts is this quote from Alice.

"Yeah, malignancies, and I ended up seeing twenty-two doctors before I was diagnosed, but in my case I also had reproductive health issues.  So when you say how can it affect you, I had a full-term stillborn child, I had three miscarriages, and my youngest daughter was two pounds when she was born.  So she fit into the palm of my hand.  I’m five foot nine and I weighed a hundred and thirty pounds now.  I was down to about a hundred pounds. My hair was falling out, my teeth were breaking, and the doctors were telling me that I had postpartum depression and telling me I had psychiatric problems, you name it, anemia, so a lot of this — I had, you know, swelling in my joints.  I had such diarrhea that I couldn’t even go to work."

All aspects of celiac disease are discussed, including testing, related conditions, complications, and the gluten-free diet. Celiac is even referred to as "a multi-symptom chameleon disease." 

Celiac Disease Symptoms and Treatment: An Excellent Video

Watch this excellent video of Dr. Daniel Leffler, Director of Clinical Research at the Celiac Center at Beth Israel Deaconess Medical Center, and Melinda Dennis, a registered dietician, discussing celiac disease and their new book.  The video aired this week on the Fox morning news in Boston.  Visit their website for more information about their new book, Real Life with Celiac Disease.

When a Family Member Refuses to be Tested for Celiac Disease

It is frustrating to hear about people who refuse to be tested for celiac disease. Fortunately, when I was diagnosed with celiac disease in 2007, all of my family members were willing to be tested.

I often hear on Twitter and in celiac groups about family members who refuse to be tested for celiac disease. Perhaps their refusal is based on fear, denial, or inaccurate information. Here are some of my thoughts on how to help them.

Share the facts.

While there are many good gluten-free blogs and YouTube videos, sharing information directly from a medical source is important. This information from the University of Chicago Celiac Disease Center is excellent in concisely explaining the symptoms of celiac disease and who needs to be tested. Complications of untreated celiac disease are described at the end of this fact sheet from the American College of Gastroenterology.

Focus on the positive.

Many people mistakenly think that gluten-free food doesn’t taste as good as gluten. While that was the case in the past, there are now so many great tasting gluten-free products, including Udi’s gluten-free bread. In fact, the Betty Crocker gluten-free brownies were rated number one in the Epicurious blind taste test of 21 gluten and gluten-free brownies.

Gluten-free products are also more readily available to consumers, and many mainstream products are very affordable. General Mills and Hain Celestial each make over 200 gluten-free products. Purchasing a gluten-free grocery guide, which lists thousands of gluten-free products available in many regular grocery stores, can be useful in locating products.

For eating out, there are numerous options, including chains like PF Chang’s, Bonefish Grill, Outback, ZPizza, and Uno Chicago Grill. For those who enjoy baking, there are terrific gluten-free all purpose flours as well as the new gluten-free Bisquick. 

Explain that planning makes it possible.

With some extra planning, anything is possible while eating gluten-free. The Gluten-Free Travel Site has reviews of restaurants, grocery stores, and hotels throughout the world. Many people with celiac disease are successfully traveling internationally, enjoying cruises, and camping.

If you were diagnosed with celiac disease years ago and family members are still refusing to be tested, be sure to share with them what gluten-free life is like today and how much it has improved. They may be remembering your bread that tasted like cardboard or your difficulty finding a restaurant. With your continued efforts, a family member may eventually surprise you and decide to be tested!

Dr. Vikki Petersen Responds to the Today Show Gluten-Free Segment

A recent segment on the Today Show called, “Gluten-free: Diet fad or healthy option?” stirred up a lot of emotions in the gluten-free community. You can watch the segment here, but the better and more informative video to watch is this one from Dr. Vikki. Does a gluten-free diet cause weight loss or weight gain? Dr. Vikki has the answer.

Gluten-Free Videos: Fox News Strategy Room

Here are some good gluten-free video segments that recently aired on FoxNews.com on The Strategy Room, "the web's most talked about live show."  Marlisa Brown, author of Gluten-Free, Hassle Free, is one of the panelists in the videos.

If all the videos do not properly load on this page, click refresh or the play buttons at the bottom to watch them.














Click here to watch the fourth video segment, Gluten Alternatives.

Below is one more video I found on YouTube, which looks like it aired recently on the Fox News television channel.

A Fantastic Article about Celiac Disease

Every week, I read several articles about celiac disease and the gluten-free diet that show up in Google Alerts and various news feeds. Many of the articles appearing in newspapers and other sources have inaccurate information about celiac disease, referring to it as an allergy and only focusing on digestive symptoms.

When I encountered this article, "Gluten Free: Millions Have Celiac, Few Diagnosed", written by Jaclyn Gallucci and published yesterday in the Long Island Press, I was impressed with the title and photo. As I read the article, I was amazed by how detailed it was and how many facets of gluten-free life were accurately explained through interviews with several people. It is a well-written and intriguing article, which would be great to share with friends, coworkers, and family members. Here are some of my favorite parts.

"She had celiac disease, a potentially fatal, but treatable, disease that is almost never diagnosed properly, if at all. Even when it is, parents and children struggle to get others—including doctors and school administrators—to take them seriously."

"Over time, celiac can lead to cancer, malnutrition and other disorders. But because many people think of gluten-free as a diet or fad, the fact that the disease is a serious, chronic, lifelong problem, is often overlooked."

"Since celiac, a multi-symptom and multi-system disease, doesn’t always involve a stomachache, produces strikingly different symptoms in different individuals, and often mimics other disorders, it is commonly misdiagnosed. Celiac could manifest as an intestinal infection in one patient, a rash or growth problems in another and neurological problems or even dementia in a third."

"Amanda, 9, was diagnosed with celiac when she was 5 years old. She had leg cramps, headaches and a distended belly. At her yearly checkup, the doctor found she was anemic."

"As a rule, every first-degree relative is supposed to be tested when a child is diagnosed with celiac. Albertelli tested positive for the disease. Even more shocking, her husband, who didn’t seem to have any telltale symptoms, was diagnosed as well."

"But avoiding gluten can be challenging, and cross-contamination is a serious possibility. If a piece of bread is only dunked in a pot of sauce that a celiac will eat or if a knife used to cut a doughnut is then used to slice gluten-free bread, there is enough gluten transferred in each instance to cause damage"

"After months of jumping through hoops, Amanda can now use a separate microwave." (referring to lunch at school)

The entire article is fantastic, so please take the time to read it. It left me feeling that the author, a complete stranger, has true empathy for people like myself with celiac disease. I wonder if she has a personal connection to someone with celiac disease. Thank you Jaclyn for this informative and refreshing article, which will help to increase awareness of celiac disease!

Videos: Kids Talking About Celiac Disease and Eating Out Tips

These celiac disease videos are from Children's Hospital Boston. This is a good four minute video featuring several kids talking about living with celiac disease. The kids share some experiences and advice. The ending is very positive.



This video about eating out shows the questions to ask at restaurants.



The above videos and 10 other Celiac Family Health Education videos are clips from a two hour long DVD available for purchase.

10 Important Facts about Celiac Disease and a Gluten-Free Diet

1. Do not start a gluten-free diet until you have been tested for celiac disease (celiac panel blood test and endoscopy if necessary). Testing will not be accurate if you are already eating gluten-free. An endoscopy is necessary to confirm a diagnosis of celiac disease and sometimes to help interpret the results of the celiac panel blood test, which is not always accurate.

2. Many people who test negative for celiac disease are gluten sensitive and find that symptoms improve on a gluten-free diet.

3. Celiac disease is an autoimmune disease, not an allergy. It is not part of food allergy testing. Eating gluten damages the villi of the small intestine, preventing nutrients from being properly absorbed. If left untreated, celiac can lead to osteoporosis and cancer, among other things.

4. The only treatment for celiac disease is a 100% gluten-free diet.

5. Symptoms of celiac disease vary greatly and some people have no symptoms or only mild symptoms, like migraines or fatigue. Symptoms are commonly misdiagnosed as other conditions and there is a lot of misinformation about celiac disease. In fact, 97% of people with celiac disease don’t know they have it, and it can take years and many doctors for people to be correctly diagnosed.

6. Celiac disease is genetic. If one family member has it, others should be tested.

7. Gene testing for celiac disease does not tell you if you have celiac disease. If you do not have any of the genes associated with celiac disease, then you can rule out celiac disease. If you do have some of genes, all it means is that you may develop celiac, but many people with the genes never develop it.

8. While there are countless great gluten-free foods and many restaurants have gluten-free menus, cross-contamination is the biggest challenge for most people with celiac disease. Gluten crumbs in a condiment jar, a cooking utensil or serving spoon that has been used on gluten, and even airborne wheat flour, can all cause a person with celiac disease to have a severe reaction, which can last for days.

9. Eating gluten-free is not a weight loss diet. Many gluten-free breads and other baked goods are not only expensive, but high in fat and calories. Many people with celiac disease gain weight on a gluten-free diet as the body heals and begins properly absorbing nutrients. Eating foods that are naturally gluten-free is cheaper and healthier than processed gluten-free foods.

10. While wheat is a top eight allergen required to be listed on food labels in the United States, gluten is not. Gluten (wheat, rye, barley, and contaminated oats) is found in many products and some products are unsafe for people with celiac disease as a result of cross-contamination. Only oats that are certified gluten-free may be consumed on a gluten-free diet and some people with celiac disease are unable to even tolerate oats that are certified gluten-free.

For more information about celiac disease:

Celiac disease: Have you been tested?

Celiac disease videos, articles, and resources to share

Celiac disease statistics, video, and a gluten-free care package

Gluten-free 101: How can I better understand food labeling?

Don’t miss the numerous useful links on my sidebar in two sections: Newly Diagnosed Resources and Celiac Links.