I realized a few days ago that last week (I can’t remember the exact date) marked my 6th year of having celiac disease. I became very ill towards the last week in July in 2002. I thought I had the flu and my doctor couldn’t understand why. It seemed like every test she performed, the results said that I was perfectly healthy. There’s the story of my life.
When I was 11 years old, I started my sixth grade at a new school. I didn’t know very many people and I started getting sick. My pediatrician kept saying that my stomach aches were just nerves from being at a new school and being around people I didn’t know and once I got used to everything I would get better. I didn’t. For a little over a year, she told me that everything I was feeling was all in my head and I would grow out of it especially since I was going through puberity at the same time. Finally my parents took me off dairy and after a week I started to feel better. Then I had a bad day at school and I ate a small bowl of ice cream when I got home. Forty-five minutes later I found myself in the bathroom with a stomach ache. My parents told me that I was lactose intollerant. Toward the end of my sixth grade year my uncle got married and I was the train bearer. My mom told Aunt Lois that they figured out that I was lactose intollerant and Aunt Lois told my mom, “Watch her for Celiac Disease. It runs in the family.” We didn’t know what celiac disease was until eight years later.
When I got sick in July of 2002, the main thing I was munching on to help relieve my stomach ache was saltine crackers. Who knew that the one thing that has always calmed my stomach was causing more damage rather than helping. When my mom and I went to my doctor (different one than before) my mom remembered what Aunt Lois had said and asked Donna if that could be the cause. Donna said that it could be and told me to go off gluten for a little while and see what happens. The first thing they take away from me was dairy and now bread and anything containing flour. I thought my life was going to end. Obviously it didn’t. Just like I had with dairy, after about a week I tried a small amount of gluten and I got sick. Knowing that it ran in the family and that the insurance probably wouldn’t have paid for any testing, Donna decided not to have me undergo the small intestine biopsy needed to fully confirm the exsistance of celiac disease. I already showed quite a few of the more common symptoms and I was diagnosed.
Six years later and I still have celiac attacks. The most difficult thing to come to terms with after being diagnosed is the fact that you now have to cut one entire food group out of your diet. You’d be amazed at what gluten is in. It’s in everything from mayonaise to soy sauce, salad dressing to deli meat. The next time you’re shopping for food, take a few extra minutes and read the labels of everything you buy. You’d be amazed at what companies put in their products. Gluten can be hidden in products that list it as “modified food starch” but doesn’t say what kind of starch (wheat, corn, rice, potato, or tapioca) and gluten can be found in distilled vinegar (regular vinegar is fine, but stay away from the distilled stuff). Eating has become difficult in the sense that you have to cook about 90% of everything you eat from scratch. You want those frozen dinners that you can just pop in the microwave when your in a hurry? Forget about it. Just about every single one contains some form of gluten. Maybe I should explain a little more about what celiac disease is…
Celiac disease (also spelled coeliac) is an autoimmune disorder that does not allow the body to digest gluten that is found in wheat, rye, barley, and sometimes oats. When a celiac consumes food containing gluten, the villi in the small intestine reacts and send antibodies to kill what they think is a foreign substance, but there isn’t any so the antibodies attack and harm the villi, which are responsible for the absorbtion of nutrients (vitamines and minerals) in food. The result is typically a very nasty stomach ache. Some of the most common symptoms include diarrhea/constipation, vomiting, weight loss, iron-deficiency anemia that does not respond to iron therapy, fatigue, delayed puberty, joint pain, pale sores inside the mouth, a skin rash called dermatitus herpetiformis (DH), unexplained infertility, and psychiatric disorders such as anxiety or depression and in my case migraines. Most celiacs will have one or more of those symptoms. It is a genetic disorder that affects both children and adults. There are no medicines and there is no cure. The only known treatment is a life-long strict adherence to a gluten-free diet, which is not as easy as it sounds but is getting easier.
You want to know facts? Well here you go:
How common is celiac disease? Research shows that 1%, or 3 million, Americans alone have celiac disease. However about 97% are undiagnosed because it is difficult to diagnose.
The University of Chicago’s Celiac Disease Center states that in average, 1 in 133 Americans have Celiac Disease. About 1 in 22 will have celiac disease if a first-degree relative (parent, child, sibling) already has the disorder and about 1 in 39 if a second-degree relative (aunt, uncle, cousin) who are Celiac.
The University of Maryland’s Center for Celiac Research states that “celiac is twice as common as Chron’s disease, ulceric colitis and cystic fibrosis combined.”
Is celiac disease a food allergy? No. Food allergies are usually something that people can grow out of, like lactose intollerance (just not in my case). Celiac disease is an autoimmune disorder that you will have for the rest of your life. Sucks I know but that’s the truth.
Is celiac disease related or linked to any other disorders? Yes. According to The University of Maryland’s Center for Celiac Research, “Celiacs are more likely to be afflicted with problems relating to malabsorbtions, including osteoporosis, tooth enamel defects, central and peripherial nervous system sidease, pancreatic disease, internal hemorrhaging, organ disorders (gall bladder, liver, and spleen), and gynecological disorders.” Celiacs that do not adhere to a gluten-free diet are at a higher risk of developing certain tyes of cancer, especially intestinal lymphoma. About 180,000 American that have Type 1 Diabetes also have celiac disease. And about 350,000 Americans with Down’s Syndrome also have celiac disease.
Is celiac disease life treatening? Only when not treated by sticking to a gluten-free diet.
What should I do if I think I have celiac disease? Ask your doctor right away. Please don’t put if off, because if you do have celiac disease and you put it off, you could cause even more damage.
There are plenty of books and websites out there ready and more than willing to help. Some of my favorite books are: The Gluten-free Bible by Jax Peters Lowell (ISBN 0-8050-7746-4) and The Gluten-free Gourmet Cooks Fast and Healthy by Bette Hagman (ISBN 0-8050-6525-3). More companies are recognizing celiac disease and marking their packaging as being a gluten-free product.
One of the best things that has happened to me since beging diagnosed is my experience eating, without worry, at Disneyland and California Adventures. If you have any food allergies or special dietary restrictions, go to City Hall in the front of Disneyland (or Walt Disney World in Florida) and explain what you need and they will bend over backwards for you. I know. Trust me. They will give you a sheet of paper listing all the restaurants and foods that are gluten-free, dairy-free, kosher, vegetarian and vegan along with anything else you can ask for, but you have to ASK. They will also tell you that if you need to ask for the Head Chef or Sous Chef and they will see you personally. I had the Head Chef, Sous Chef AND Manager at Red Rocket’s in Tomorrowland help me with one dish. The Sous Chef made my spagetti and even told one of the cooks to ask someone else for the answer to their question because he was making my dish and wouldn’t be distracted. I can’t begin to tell you how special that made me feel.
My dream now is to open a bakery that caters to everyone, not just celiacs. I want a place where everyone, no matter what dietary restrictions you might have, can enjoy a meal at the same table and not worry about what you are putting in your mouth and the effect it might have on you later.
If you think you might have celiac disease or have just been diagnosed (with anything, not just celiac disease) my best advice is breathe, relax, and do as much research as you can. It’s a tedious task I know but hang in there. You’re alive and that’s all that matters. Make the most out of life and embrace every curve ball nature will throw at you. As Nick Jonas of the Jonas Brothers said in an interview for the Disney Channel about his Type 1 Diabetes, “It doesn’t slow me down and I’m not gonna let it.” It’s the same thing with my celiac disease. It doesn’t control me. I control it.
Thank you to everyone who has supported me for the last six years and will support me for the rest of my life. I don’t think I can thank you enough. You have been the rock that has grounded me when I felt like I had lost everything worth living for. Celiac disease is maintainable. Just keep living life to it’s fullest and never let anything, especially a disease, get in the way of you chasing your dreams.
For more information about celiac disease, please visit the following websites: