Living with Celiac Disease

Wheat

Since May is Celiac Disease awareness month, I thought I'd do my bit. I don't really hold with awareness months, because generally the only people who are aware that it is an awareness month are the ones who are already aware of the disease...
I was diagnosed with Celiac Disease when I was seven after it was triggered by a bout of mono. If I hadn't been diagnosed, I would have died of starvation.

Most people haven’t the faintest what Celiac Disease is; Doctors and sufferers included. It has no cure and no prevention; once you have it, it’s for life. It’s not catching, because it’s genetic. If your parents both carry the gene, there’s nothing you can do to avoid it.

Celiac Disease is an autoimmune disease, which basically means it’s what happens when your body starts attacking itself. Rheumatoid arthritis, Cancer and Crohn's disease are other well-known autoimmune diseases; this is why you can develop cancer even if you’ve never smoked a day in your life.

This image shows a normal cross-section
 of the small intestine (top)
verses a celiac's small intestine
after contact with gluten (bottom)

When I was seven, I couldn’t spell the name of my disease, but I knew full well what it was and how it affected me. I lost weight, my hair was falling out, I suffered from a fatigue so extreme I couldn’t climb the stairs. What was happening inside of me was something close to science fiction. Because of the altered chemistry of my intestines, a protein named gluten was slicing up my insides like billions of tiny knives.

Gluten is something akin to magic; it’s what hold’s dough together when you’re kneading it. Gluten is an integral part of three grains: wheat, barley and rye. By eliminating these three grains and all their verities, a celiac sufferer can lead a relatively normal and painless life.

Of course it’s not as easy as it sounds. Wheat, in particular, is the most commonly used flour in the world. It’s wonderful stuff; you can make bread out of flour, yeast and water and it won't fall apart, or go stale overnight; wheat is hardy and grows beautifully, and if you eat the whole grain, you’ll have a very balanced and healthy diet. Just eliminating bread isn’t enough, however, because wheat is used in everything from shampoo to an additive in pepper.

Many people are probably familiar with the label ‘Gluten Free’ that appears in health food stores and specialty isles. Fortunately for us, companies dedicated to gluten free food are increasing, but it’s still an expensive diet, mostly because the companies, in order to appeal to as many people as possible, cater to a number of different dietary restrictions like egg and nut allergies, diabetes and lactose intolerance. The result is often disgusting.

Udi's is one of my favorite gluten free brands

All people need to do is hear the word ‘diet’ and they think it must be healthy, however the gluten free diet is not healthy and its adherents often suffer from vitamin deficiencies. If you don’t have celiac disease or a related wheat sensitivity, don’t go on the diet; it’s not worth it. There’s nothing in the world better for you than whole grain wheat.

Celiac disease is fairly common, affecting about one in every two hundred people. Italy has the highest percentage of celiacs in the world; so if you have celiac disease and you want to go globe trotting, that might be the place to start. Many countries have rules and regulations regarding the parameters that must be met in order for a product to be called gluten free. The rule of thumb is three parts per million; which is basically three particles of gluten per million particles. Any higher, and celiacs know it.

Canyon Bakehouse is another first rate gluten free bakery
flickr

There are several myths circulating about celiac disease that should be cleared up:

Oats contain gluten: Actually, oats contain a protein similar to gluten and most people with celiac disease can tolerate it (not me, unfortunately); however, the oats must be carefully processed from the field to the shelf, to avoid cross-contamination. So to be on the safe side, avoid oats unless they are specifically labelled ‘gluten-free’.

You are allowed to cheat: Celiac disease is an affliction where no cheating is allowed in the diet. Even if you have no symptoms, or very few, you are still damaging your body. Adding ‘small’ amounts of gluten also won’t help you ‘get over’ the disease. You cannot alter your genetics. If the correct diet is maintained, celiac disease has a good prognoses, but if you cheat, you will almost certainly develop cancer and/or diabetes.

Celiac Disease is an allergy: This is one of the worst myths circulating. Celiac disease and allergies are both autoimmune reactions, in that it is your immune system doing the damage. The two often go hand in hand and are sometimes mistaken for each other, but they are very different things.

Rice is the most common substitute for wheat,
but it's lower in nutrients and makes terrible flour

If you think you have celiac disease, go see a specialist. Primary care physicians are great, but I have yet to meet one that actually knows what celiac disease is. 

If you want more information about Celiac Disease, check out the Celiac Sprue Association. My final line to all ye Celiac sufferers out there is; you are not alone.

~Psyche