National Celiac Awareness Month
October is National Celiac Disease Awareness Month. By increasing awareness of issues we can hope to facilitate better education, screening, detection, research and treatments of those issues. My youngest son has Celiac Disease. Many people don’t know what Celiac Disease is. I myself didn’t know what it was until my son CJ was diagnosed with it a couple of years ago. And you thought I knew EVERYTHING.
So, wondering what Celiac Disease is? Celiac Disease is an autoimmune disorder.
From the National Institute of Diabetes and Digestive and Kidney Diseases website: “Celiac disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food. People who have celiac disease cannot tolerate gluten, a protein in wheat, rye, and barley. Gluten is found mainly in foods but may also be found in everyday products such as medicines, vitamins, and lip balms. When people with celiac disease eat foods or use products containing gluten, their immune system responds by damaging or destroying villi—the tiny, fingerlike protrusions lining the small intestine. Villi normally allow nutrients from food to be absorbed through the walls of the small intestine into the bloodstream. Without healthy villi, a person becomes malnourished, no matter how much food one eats. Villi on the lining of the small intestine help absorb nutrients. Celiac disease is both a disease of malabsorption—meaning nutrients are not absorbed properly—and an abnormal immune reaction to gluten. Celiac disease is also known as celiac sprue, nontropical sprue, and gluten-sensitive enteropathy.”
The symptoms of Celiac Disease can manifest in different body systems. Some of the most common symptoms of Celiac Disease include abdominal bloating, pain, diarrhea, constipation and weight loss. I can’t tell you all of the symptoms of Celiac Disease because there are so many. Each case of Celiac Disease is different and effects the person that has it differently, which is probably why it is one of the most undiagnosed conditions there is. About 1 in 133 people have Celiac Disease. A person must have a genetic predisposition to have it and it can effect anyone. It is frequently found in people that have other genetic conditions, such as Down Syndrome. There is no cure for Celiac Disease and the only way to manage it correctly is to follow a lifelong diet with no Gluten products.
Now that I’ve made you aware of some of the facts about Celiac Disease, let me make you aware of the realities of having a child with Celiac Disease. My child can’t eat many of the things your child can. That might not sound like a big deal to you but you try telling your child no to everything and see how you feel when you watch his face fall. If I had one wish for anyone diagnosed with Celiac Disease it would be that they never got to taste food with gluten, so they wouldn’t know what they were missing.
My child can’t have pizza at your child’s pizza party. He can’t have McDonalds Chicken McNuggets and Fries. He can’t have bagels. He can’t have the fun kids’cereals that are advertised on tv. He can’t have donuts. He can’t have most cookies. He can’t have potato bread, or most other breads for that matter. That means he can’t have hot dog and hamburger buns. He can’t have your child’s birthday cake. Schools do not serve gluten free lunches.
Let’s talk about what he can have. He can have vegetables. He can have rice. He can have pasta that costs between $4 and $5 per bag. He can have potatoes. He can have meat and poultry that isn’t breaded. When grocery shopping you will have to read every word of every ingredient on every label. Gluten isn’t always easy to identify either, so you’ll need to know all of the other names for it and the names it hides in as well. Sounds like a lot of fun for mom and child alike, doesn’t it? One more thing. A Gluten Free diet is VERY expensive.
Both parents and professionals need to learn more about Celiac Disease. Recognizing this need, the National Digestive Diseases Information Clearinghouse launched the Celiac Disease Awareness Campaign. Some things you can do that won’t cost a cent and will help increase awareness about Celiac Disease include asking your grocery store to carry gluten free products and spreading the word, whether it be in conversation or by blogging about it. Another thing you can do to increase awareness and help people with this disease and others is encourage more specific food labeling. I don’t feel people should have to squint at a food label to read every ingredient when a condition such as this affects as many people as it does. I think all food manufacturers and producers should be forced to label themselves more clearly.
We must educate ourselves and others about Celiac Disease. You may not think this affects you or your family directly, but that may not be the case. As a condition that is usually misdiagnosed or overlooked completely, it may very well affect someone you care for. Now tell me, did you know about Celiac Disease before reading this? I’d be interested in hearing if and how it has affected anyone in your family.
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I had definitely heard about this before your blog as I have a Celiac daughter. It is suspected that our other 2 are Celiac as well based on their reactions to gluten encountered outside of the home. However, since they were completely GF at home, they didn’t have enough gluten in their systems to test them. We have since required them to be GF everywhere as well. If they desire to do a challenge by adding gluten when they’re older so we can test then they’ll have that option.
I appreciate both yours and Jen’s information on the May & October gluten-awareness months. I’d say this cause could definitely use two months to increase awareness.
It is definitely a long, hard road when one is first diagnosed. We went from spending $200/month on EVERYTHING (food, diapers, HBA, paper products, etc) because of my super-couponing to spending $800/month almost overnight. That has now evened out some thanks to our co-op, United Foods. Their prices on things such as rice-pasta are TREMENDOUSLY less than those that you an find in the store. I can get Tinkyada pasta for $2/bag through our co-op. I HIGHLY recommend anyone with food allergies to find a local co-op.
Just 3 months ago, I received a diagnosis of Celiac as well. I should have known as I was diagnosed with a “wheat allergy” as a child that I was told I had grown out of. My lack of being GF outside of the home and years of not being GF led me to acquire auto-immune thyroid disease.
Auto-immune disorders are VERY common in Celiacs who don’t go completely GF. The very fact that many with auto-immune disorders don’t go GF because they are improperly diagnosed speaks volumes about our need for awareness regarding this disease; especially within the medical community.
As a nurse, I have witnessed HOSPITALS giving gluten-containing food to patients with a GF diet requirement. It was only MY knowledge due to my daughter’s condition that prevented an infraction in newly-diagnosed patients. That also led to a campaign within those hospitals to ensure foods labeled as “GF” on their menus were INDEED gluten-free.
I have also written many companies requesting that they completely disclose their GF status to those who monitor (such as ClanThompson) and that they properly label their foods as such. I especially like to encourage the use of the words “gluten-free” on products that are; explaining that we would be more likely to purchase products labeled as such. I would ensure every gluten-intolerant or Celiac patient to do the same.
Thanks for the blog. I think I’ll go do the same on my blog.
Amys last blog post..Plans
I had definitely heard about this before your blog as I have a Celiac daughter. It is suspected that our other 2 are Celiac as well based on their reactions to gluten encountered outside of the home. However, since they were completely GF at home, they didn’t have enough gluten in their systems to test them. We have since required them to be GF everywhere as well. If they desire to do a challenge by adding gluten when they’re older so we can test then they’ll have that option.
I appreciate both yours and Jen’s information on the May & October gluten-awareness months. I’d say this cause could definitely use two months to increase awareness.
It is definitely a long, hard road when one is first diagnosed. We went from spending $200/month on EVERYTHING (food, diapers, HBA, paper products, etc) because of my super-couponing to spending $800/month almost overnight. That has now evened out some thanks to our co-op, United Foods. Their prices on things such as rice-pasta are TREMENDOUSLY less than those that you an find in the store. I can get Tinkyada pasta for $2/bag through our co-op. I HIGHLY recommend anyone with food allergies to find a local co-op.
Just 3 months ago, I received a diagnosis of Celiac as well. I should have known as I was diagnosed with a “wheat allergy” as a child that I was told I had grown out of. My lack of being GF outside of the home and years of not being GF led me to acquire auto-immune thyroid disease.
Auto-immune disorders are VERY common in Celiacs who don’t go completely GF. The very fact that many with auto-immune disorders don’t go GF because they are improperly diagnosed speaks volumes about our need for awareness regarding this disease; especially within the medical community.
As a nurse, I have witnessed HOSPITALS giving gluten-containing food to patients with a GF diet requirement. It was only MY knowledge due to my daughter’s condition that prevented an infraction in newly-diagnosed patients. That also led to a campaign within those hospitals to ensure foods labeled as “GF” on their menus were INDEED gluten-free.
I have also written many companies requesting that they completely disclose their GF status to those who monitor (such as ClanThompson) and that they properly label their foods as such. I especially like to encourage the use of the words “gluten-free” on products that are; explaining that we would be more likely to purchase products labeled as such. I would ensure every gluten-intolerant or Celiac patient to do the same.
Thanks for the blog. I think I’ll go do the same on my blog.
Actually, National Celiac Awareness Month is May. The number of organizations, groups, and countries which celebrate Celiac Awareness in May continues to grow and there’s a reason.
The May observance was chosen to coincide with recognition of other medical conditions, related to celiac disease, that are observed in the same month. Celiac disease is still relatively unknown and being able to draw connections between these medical conditions and celiac disease helps to elevate its importance and enhance awareness. Some of the other May health observances include:
Digestive Diseases Awareness Month
Digestive Diseases Week
Food Allergy Awareness Month
Food Allergy Week
National Arthritis Month
National Eosinophil Awareness Week
National Osteoporosis Awareness and Prevention Month Women’s Health Week and Women’s Health Check-up day
Internationally, the Association of European Coeliac Societies recognizes Celiac Disease in May and celiac events are held throughout the world to raise awareness. (The association represents 26 countries of the EU – including Andorra, Austria, Belgium, Croatia, Czech Republic, Denmark, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Luxembourg, Malta, Netherlands, Norway, Portugal, Romania, Russia, Slovakia, Slovenia, Spain, Sweden, Switzerland, and UK). The Canadian Celiac Association (CCA) will begin its celebrations in May starting in 2009. Celebrating in conjunction with other nations is important since celiac disease is the most common genetic disorder in the world!
American Celiac Disease Alliance (ACDA)
American College of Gastroenterology (ACG)
American Dietetic Association (ADA)
American Gastroenterology Association
American Osteopathic Association
Celiac Disease Center at Columbia University
Celiac Disease Foundation (CDF)
Gluten Intolerance Group (GIG)
National Foundation for Celiac Awareness NFCA)
University of Chicago Celiac Disease Program
University of Maryland Center for Celiac Research Westchester Celiac Sprue Support Group
Wm. K. Warren Celiac Disease Research Center
UC San Diego
123 Glutenfree
Alba Therapeutics Corporation
Aline Medical
Allergy Grocer
Alvine Pharmaceuticals
Amazing Grains LLC
Andean Dream
Arico Foods
Authentic Foods
Bakery on Main
Bard’s Beer
Barry Rosenthal Studio
Bob & Ruth’s Gluten-Free Dining & Travel Club Brookfarm Cali Fine Foods Candle Café Candle 79 Case Nutritional Consulting Cecelia’s Marketplace Celinal Foods Cerrone Cone, Inc.
Collins Trucking
Emerson’s Restaurant
Endangered Species Chocolate Company
Ener-G Foods, Inc.
Enjoy Life Brands™
Farm Pure Foods
Food-Tek
Foods by George
French Meadow Bakery
Gifts of Nature
GlutenEvolution
Glutenfreeda Foods
Gluten Free Cooking Spree
Gluten Free Gourmet Solutions LLC
Gluten Free Kneads
Gluten-Free Living
Gluten Free Mama
GlutenFree Oats
GlutenFree Passport®
Glutino Foods
Great Northern Growers Cooperative
Green’s Beer
honestly speaking
Island Ice Cream and More
Jackson & Wheeler Restaurant
KC Medical Management
Kinnickinnick Foods
Kimball Genetics
La Tortilla Company
Lettuce in Love, Inc
LilliandLoo
Living Without
Miguel’s Products
Namaste Foods
Nana’s Cookie Company
National Sorghum Producers
Nature’s Chemistry LLC
Nearly Normal Cooking
Nielsen-Massey Vanillas
North American Society for Pediatric Gastroenterology,
Hepatology and Nutrition (NASPGHAN) Pamela’s Products Pioneer Nutritional Formulas Prometheus Laboratories, Inc.
Rafferty’s Restaurant
Risoterria Restaurant and Bakery
San-J International, Inc.
Savory Palate
Shire Pharmaceuticals
Silly-yak Shirts
Stonyfield Farm
Sylvan Border Farms
Tastes Like Real Food
Tricia Thompson, MS, RD
Tuttoriso Ristorante e Cafe
Vivi’s Original Sauce
Jen – Thanks for visiting. I don’t have an issue with different countries and organizations trying to raise awareness at different times. It’s an important issue that needs awareness, I can blog about it again in the spring. http://www.csaceliacs.org goes with October. I am familiar with much of the info you left, I’ve seen it posted elsewhere. You missed gfgreatbakes in your list.
Thanks Valmg! I’ll update the list w/GFbreakbakes and look forward to seeing the announcement in May for National Celiac Awareness Month. Until then, I’ll continue to enjoy your blog!
Yes such awareness and useful causes can surely improve thousands of lives for sure. Great article. The effort is commendable.