Problems with Celiac Disease Being Called a Gluten Allergy

Celiac disease is a serious autoimmune disease, not an allergy. Similar to an allergy, when you have celiac disease you must be extremely careful not to ingest any gluten and eating gluten is dangerous to your body, but the similarities to an allergy end there. Some people are allergic to wheat, rye, and barley and thus say they have a “gluten allergy”, but that is different than people who have celiac disease.

Here is a great quote from STAT Kids.

“While technically Celiac Disease is not an allergy, it is commonly referred to as a gluten allergy as a practical way to explain the dietary restrictions it requires. Although ingestion of gluten does not cause an acute, life-threatening reaction, it does cause a physical reaction which can make a person with Celiac Disease sick in the short term, and exacerbate a chronic condition over time. Since many schools, child care facilities, restaurants, and the public in general are becoming more allergy-aware, using the term gluten allergy facilitates the immediate goal of preventing an exposure to foods containing gluten.”

When at restaurants, there is a definite need to describe celiac disease as an allergy. However, in the media, I believe it is extremely important to not refer to celiac disease as an allergy when the intent is to increase celiac disease awareness. I have seen several television interviews, articles, and even books describe celiac disease as “a gluten allergy”. So, what are the problems with calling celiac disease an allergy? I recently asked this question on twitter and before I share the responses, which include two useful links explaining the differences between celiac and allergies, here are some of my answers.

Since 97% of people with celiac disease are undiagnosed, accurate information which encourages people to be tested is important.

Allergy testing does not include testing for celiac disease. So, if you have been tested for food allergies, it is unlikely that you were also tested for celiac disease. Testing negative for an allergy to wheat, rye, and barley does not mean you do not have celiac disease. Some people who test positive for gluten allergies may also have celiac disease, but testing positive for a gluten allergy does not mean you have celiac disease.

Most of the 256 symptoms and related conditions associated with celiac disease are different than symptoms of food allergies. When you experience celiac disease symptoms such as fatigue and joint pain, it is not obvious that this could be because of eating gluten. Futhermore, some people with celiac disease show no symptoms and show no external reaction when they ingest gluten.

While wheat is one of top eight allergens required to be listed on food labels, gluten is not. Including gluten as an allergy on food labels to aid people with celiac disease and gluten sensitivities would be very useful. Celiac is sometimes referred to as a "wheat allergy", which again is inaccurate.

Responses (quotes) from the gluten free twitter community

tastyeatsathome the reaction is different. And an allergy you can sometimes "grow out of". Celiac is life, baby!

celiacdisease here's my reason why CD should not be called an allergy: http://tinyurl.com/cvw5kn

madamebarberi using the term allergy REALLY does not paint a realistic picture of the disease or its implications!

souralice because then people don't understand the full effect of gluten on our bodies! I always hear "why don't you get allergy shots??"

GFTiff Can not increase tolerance over time to gluten (like you can to dogs and cats via allergy shots).

GFTiff Not an allergy because:Cant take benadryl/claratin/etc allergy med for gluten-reaction. Epi-pen not for gluten-reaction.

GFCosmetics Reason it isn't an allergy - Because you can't take medicine to clear it up like hay fever.

I think these two tweets from GingerCM sum it up well!

GingerCM Celiac isn't an allergy at all -- it's a disorder of the immune system. http://tinyurl.com/crtg9u

GingerCM BUT, when I'm on real time/eating out, unless it's a GF friendly place like Outback, I stress "allergic" part for my safety

Follow me on twitter - MarylandCeliac and all the other wonderful gluten free people on twitter.

Video - Biocard Celiac Home Test

Checkout this video showing how to use the Biocard celiac home test. Canadian residents can purchase the product here for $50 and at some retail stores. The test is expected to be approved in the U.S. in 2009 according to Vanessa Maltin. People outside of Canada can call (905) 271-2122 ext. 2 for more information or send an email to info@2gpharma.com.

"Biocard™ Celiac Test can be used as an aid in the diagnosis of Celiac disease, but the final diagnosis must be confirmed by a medical doctor. The Celiac blood test requires only 1 drop of blood from the fingertip, and it can be carried out and evaluated in under 10 minutes. The sampling is practically painless."

Celebrity Apprentice Update - Annie Duke's Favorite Gluten Free Pasta

I found Annie Duke's twitter profile from her blog when I was viewing her gluten free turkey meatball recipe and leaving a comment. I am so pleased to announce that she responded to my tweets. Wow! Sometimes celebrities do respond! She told me that her favorite gluten free pasta is Ancient Harvest Quinoa, which is what she used on the Celebrity Apprentice. She has a close friend with celiac disease and her daughter Maud has a wheat allergy. For more on this episode of Celebrity Apprentice, read my earlier post.

I just discovered a post on Annie's blog that lists the many allergies that she and her kids have, which they recently discovered. Here are some quotes from her blog about the allergies.

"So I thought that since my joints were swelling up a lot along with the stomach pain that maybe it was food that was affecting me. So off I went and when I got my results it was totally obvious why the only days I felt at all well was on days I didn’t eat. I am allergic to green beans, cabbage, carrots, garlic, onions, sesame, soy, baker’s yeast, pistachios and hazelnuts."

"Now for poor Leo. He is allergic to mushrooms, salmon, sesame, malt, vanilla and brewer’s yeast. It is the last one that is really bad because along with beer, win and champagne, brewer’s yeast is in vinegar which means he can’t have any prepackage mustard, mayonnaise, ketchup, salad dressing, most soups, jarred sauces etc. Vinegar is in everything because it acts as a preservative. The vanilla is a pain too because it means I have to bake special cookies and such for him with no vanilla and the poor kid can’t eat most chocolate because chocolate almost always has vanilla in it."

"Now Lucy. Lucy is allergic to green beans, carrots, garlic, CHICKEN, EGG YOLK, and cashew."

I assumed from her statements and actions on the show that she must have a personal connection with celiac disease or allergies. It certainly must be a challenge cooking for her entire family. I was a little surprised at her pasta choice and that the executives liked it. While we do eat the Quinoa sometimes and like it, we prefer Cornito and Orgran. Most people I talk to think Tinkyada is the best.

Update - April 24, 2009 - Annie also made meatloaf and chili on the Celebrity Apprentice and both of these recipes were gluten free. Her chili recipe is on her blog.

Amazing Awareness – Celiac Disease on Celebrity Apprentice

Tonight on Celebrity Apprentice, the task was to create a new healthy frozen meal for Schwan's. Annie Duke suggested turkey meatballs with gluten free pasta. When questioned by Joe Kernen from CNBC Squawk Box, "Who would eat gluten free pasta?", Annie quickly responded with "the people who need gluten free are people who have wheat allergies or celiac disease". Joe seemed skeptical and thought it would taste bad. She prepared the turkey meatballs with vegetables, instead of bread crumbs. Although her team was reluctant, Annie advocated for the gluten free meal and the team ended up choosing it after tasting the three dishes Annie cooked.

Everyone enjoyed the gluten free turkey meatballs with pasta, which was the winning meal. During the presentation, Jesse James said "the gluten free market is one of the fastest growing segments in the food industry as more people are developing wheat allergies or things like celiac disease". The Schwan's executive said "I like the innovation in it" and "gluten is hot, there is no doubt about it". Obviously, he meant gluten free, not gluten. As Annie left the board room, she said "I told you the gluten free would work".

Earlier today, the episode of Last Restaurant Standing with customers with celiac disease aired again on BBC America. I am truly shocked that I watched two television shows today that mentioned celiac! This truly is reality television as the gluten free turkey meatballs and pasta is now being sold at Schwan's.

You can vote for Team Athena as your favorite on the Schwan's website. This entire episode can now be viewed online. The gluten free part is in the second half of the episode and the presentation begins at 68:38. The first mention of celiac starts at 57:00. Annie posted her gluten free turkey meatball recipe on her blog.

Celiac Disease Mentioned in “Kids’ Letters to President Obama”

I am so proud to announce that my daughter’s letter was just published in Kids’ Letters to President Obama. This new book was just released today by Random House and can be ordered on Amazon or found in stores, including Barnes and Noble in the new humor section. The book contains approximately 200 letters that were selected from the 2,000 letters that were submitted.

My daughter’s letter can be found on page 60 in chapter 3. The chapter is called “I Have a Few Questions, If You Don’t Mind.” I am so happy that not only was her letter selected, but her entire letter was published in the book. She asks President Obama seven questions, and I am so honored that she chose to include celiac disease. Here is the question that mentions celiac disease.

“Are there any foods you can't eat? My mom can't eat gluten because she has celiac disease. Can you make a law so that there are more gluten free foods for people with celiac disease to eat?”

Here is another question she asked.

“Do you ever forget where some of the rooms are in the big White House and get lost?”

For my daughter, who is 7-years-old, this is the most exciting thing to ever happen to her. I purchased an extra copy of the book to donate to her school library. I know she will have a wonderful time sharing the book with her first grade class, the principal, and school staff.

I found out about the request for letters from her school newsletter and submitted the letter in December. This series of books called “Kids’ Letters” is a tradition with every new president, which Bill Adler began when President Kennedy was elected. It is so exciting that my daughter’s thoughts are a permanent part of this historical time!

10 Positive Things About Having Celiac Disease

Yesterday, I happened to walk by many delicious looking gluten baked goods at Trader Joe’s. I said to my daughter, “I am glad they are not gluten free”. She was shocked and asked why. I said, “if they were gluten free, I would be tempted to buy them and eat too many sweets”. I think that this is the first time I ever said I was glad something was not gluten free. It really got me thinking and here is the result - a list about the positive things about having celiac disease. Please share your comments and share this list!

1. Your health is better!
2. You helped improve the health of other people by telling family members, friends, coworkers, and doctors about the importance of testing for celiac disease.
3. You don’t need medicine or surgery to treat your disease.
4. You don’t have to share your food. This is from the video of Dominick Cura’s fourth grade presentation.
5. You save money by not impulsively buying sweets, by not impulsively eating out, and by not buying your lunch daily.
6. Since you read labels, you have a better idea of the nutritional facts and ingredients of the foods you eat and can make more informed choices.
7. You appreciate the small things in life and find joy in them like new good gluten free foods, the mention of gluten free or celiac on a television show, gluten free lists of foods and medicines, and an informative blog post or review. (Yes, these are big things to celiacs, but they are still small things in the big picture of life.)
8. You eat healthier at home when you don’t feel like driving far to eat out or buy gluten free convenience foods.
9. You have something to blog about.
10. You participate in amazing internet networking with other celiacs and have an instant bond with them.

Amazing Awareness Articles

Here are some recent articles about celiac disease awareness.

“Jean Duane, Alternative Cook Moderates 'Gluten Free Goes Mainstream'” A gluten free presentation was given at the international convention of culinary professionals.

“Against the grain: Wheat allergy doesn’t mean diners can’t enjoy dessert” The pastry chef at a Boston hotel has celiac disease and makes many gluten free chocolate treats.

“Girl’s struggle with celiac disease inspires family” This is a shocking story about the organizers of the chip in for celiac golf tournament.

The next three articles are from my DC Gluten Free examiner page.

“New legislation makes April celiac disease awareness month in Pennsylvania”

“International walk and run for celiac disease in Baltimore” Please consider making a donation to support celiac research! Read the article to learn the location of the world's first celiac center and who did the study that found 1 in 133 people have celiac disease.

“Gluten Free Cooking Spree in the DC area: Buy your discount tickets now” Watch the funny ad from You Tube.

Seven Things You May Not Know About Me

I was tagged by Amy Leger at The Savy Celiac to reveal "Seven Things You May Not Know About Me". I have enjoyed reading these posts from other bloggers and I hope you will enjoy mine.

1. I have never been glutened. I just got the results of my latest blood test, which confirm I am eating gluten free. Before I was diagnosed over two years ago, I had many symptoms. I wonder how I will react if I accidentally eat gluten. I guess that is why I still dream about eating gluten and having no reaction, instead of the nightmares others report about eating gluten.
2. I have been through a lot of personal changes in the last year. I will be moving again this summer and then looking for a job later this year. I would love to find a job combining my two passions – writing and increasing celiac disease awareness.
3. I love Jif peanut butter! I put peanut butter on so many things, including Dove chocolate, Nut thins, bananas, English Muffins, and bagels. I don’t like jelly with my peanut butter. I like jelly alone, but when I eat peanut butter, I only want to taste the peanut butter.
4. My favorite TV show is “Grey’s Anatomy”. I would love to see a story about celiac disease on it!
5. I can’t stop craving eggrolls. I hope PF Chang’s will add them to their gluten free menu. I am not skilled enough in the kitchen to try to make my own.
6. I need very simple and fast gluten free dinner recipes.
7. I have a BA in psychology from the University of Maryland and I used to work in human resources.

Here are the seven people I am tagging. They are all people I follow on twitter and they follow me. I like their tweets and blogs. There are so many wonderful gluten free people on twitter. You can view my daily gluten free tweets (updates) here.

1. Amy Ratner at Gluten Free Living
2. Alison at Sure Foods Living
3. Kristen, creator of gluten free fox, at Naturally Dah'ling
4. Stephen at Gluten Freeway
5. Amy Feldman at Gluten Free Gossip
6. Stacy at Guaranteed GF
7. Heather at Celiac Family

“The rules are simple. Link to your original tagger and list these rules in your post. Simply share seven facts about yourself in the post. Tag seven people at the end of your post and let them know they’ve been tagged. And have fun!”