Celiac Disease Awareness Month

Some of you may know that May is Celiac Disease Awareness Month. I was actually unaware of Celiac Disease (CD) until last November, just prior to my diagnosis in December 2009. I was vaguely aware of the existence of gluten-free foods, but didn't know what gluten was or why anyone would create foods without it. Now I have to know every detail of this disease, every possible hidden source of gluten, every side effect that might indicate accidental ingestion of gluten, etc. Since there are many of us out here (approximately 1 in 133 in the U.S.) suffering from CD, another form of gluten intolerance, or who are simply avoiding gluten for other health reasons--for example, to mitigate the symptoms of medical conditions such as Autism or Asperger's--I thought it might be helpful to share some basic information and some etiquette tips for interacting with gluten-free folks.

For some people, eliminating gluten from the diet is a choice. For those of us who suffer from CD, it really isn't. When a person has Celiac, gluten is toxic to the body. The body reacts with an autoimmune response, typically involving, but not limited to, persistent gastrointestinal distress and pain, nausea, rashes, fatigue, swollen glands, frequent illness and infections, other food allergies, and the list goes on. Over time, exposure to gluten begins to kill the villi in the small intestine which are responsible for absorbing nutrients, and the nutrients cease to be absorbed, resulting in malnutrition. In some cases, those afflicted will lose tremendous amounts of weight without trying. In my case, I gained a ton of weight--about 40 pounds--out of nowhere. My body thought it was starving to death because my nutrient absorption was so horribly impacted, and I was starving all the time. I ate like a maniac.

Celiac Disease is chronic and incurable. It does not go away; with the elimination of gluten from the diet, however, it will eventually go into remission. CD is considered to be in remission once the villi are fully functional again in the small intestine. This typically takes between six and eight months following the elimination of gluten from the diet.

As if it weren't fun enough on its own, CD increases one's risk for various cancers and other autoimmune diseases, such as lupus and rheumatoid arthritis. A percentage of people with Celiac Disease also are diagnosed with Dermatitis Herpetiformis, an autoimmune skin condition related to Celiac which features a blistering, itchy rash. I was diagnosed with this last week and can assure you that it is unpleasant. I'll save my whining about that for another post.

People who have CD are generally okay with the fact that they have it. A lot of us dealt with our symptoms for so long prior to diagnosis that it's just a huge relief to take control of your health. You don't have to apologize for all of the things we can't eat. We have a lot of really great options, and most people are so relieved that they feel better and are healthy that avoiding things we used to love is truly not a big deal.

We really can't eat any gluten. I seriously can't have "just one bite" of that cake you made, because within 30 minutes my glands will all be swollen, I'll be achy from head to toe, I will be overwhelmed with exhaustion, the backs of my thighs and my lower legs will be maddeningly itchy, and then nausea and worse will set in and stick around for three to five days. I'm sure it's delicious and thank you for offering, but "just one bite" is never, ever going to be worth it.

Support from family and friends is so incredibly crucial. I am so blessed to have the most supportive friends and family ever. My twelve year old daughter selected P.F. Changs, a very gluten-free friendly restaurant, for her birthday dinner, and chose Betty Crocker's gluten-free brownies instead of a cake so that I could easily share in the celebration. Both my mother and my mother-in-law have moved mountains to make not just edible, but delicious, things for me to eat when we're together. My husband is a saint about the food we keep in the house, and has educated himself about what I can and cannot eat to help keep me healthy. My friends are great about going to restaurants where I can eat, and not rolling their eyes when I begin my high-maintenance menu deconstruction, or cooking me separate meals at their homes. So many people suffering from CD are not as fortunate as I am. If you have a friend or family member who has CD, please take my advice--be considerate and kind about it. Ask them questions about what they can and cannot eat, educate yourself as much as possible, and be patient with their needs. CD is a genuine and serious medical condition. It's not an easy situation to navigate and we need all the support and encouragement we can get.

People with Celiac Disease are going to have some bad days. There are days that I just want to eat a piece of pizza with a crust made from glorious wheat flour, and I can't. Don't say things like, "Well, you could have that, you'll just get sick." No, I can't. You don't understand what you even mean when you say I'll get "sick". Sick is an understatement. The better choice would be to just shut up, and think for a minute how you would feel if you had to give up McDonald's french fries, and Mellow Mushroom pizza, and Stella Artois, and Krispy Kreme doughnuts for the rest of your life, and try to understand why sometimes we get a little cranky about it, and if we decide to eat Reese's peanut butter eggs and gluten-free potato chips for dinner, because we really want some fried chicken and we can't have it breaded in flour, don't give us any crap.

We're not just being overly dramatic or high maintenance when we read labels obsessively, or go over the minutia of the menu with a restaurant manager, or smack that stuffing-covered spoon out of your hand before you stick it in the gluten-free mashed potatoes during Thanksgiving dinner. It really is that important.

One last thing: please, for the love of all that is sacred and holy, never tell someone with Celiac Disease that you understand what they're going through because you did Atkins once. It is not even remotely similar. If you don't believe me, read this post again.