An introduction to Celiac Disease and Gluten

For anyone who doesn't know what celiac disease is, it is an auto-immune disease in which one's own immune system responds to eating gluten by attacking one's body.  Damage is primarily in the small intestine. But, the immune system can also attack other areas of the body. The typical symptoms are diarrhea, abdominal pain, constipation, etc. Sometimes symptoms aren't typical. For instance, anemia, arthritis, migraines, ... I'm not going to list everything because it gets really long. Google celiac disease if you want more information. Not only are there many different symptoms to celiac disease, the severity of symptoms varies. Some people don't have any pain after eating gluten and others only need to touch something with gluten in it before touching their mouth and they will be in agony. I will just say that even if a celiac doesn't feel bad after eating gluten (some people don't), the intestinal damage can result in major health problems down the road--like cancer or complications of malabsorption. If you have been diagnosed, please avoid it and don't cheat.

How do you get diagnosed? The gold standard is to get a biopsy, go on a gluten-free diet, and get another biopsy. If there is intestinal damage in the first biopsy and improvement in the second biopsy (i.e.--you are healing by not eating gluten), you have it. I have to admit that I didn't get officially diagnosed. I went on a gluten-free diet and felt so much better, I gave gluten up completely. I actually didn't know about the biopsies until later. In order to guarantee enough intestinal damage to show up in a biopsy now, I would have to eat gluten for a month. Not worth it!! There are some additional tests they can do now. There is a blood test for for antibodies to gluten (antibodies are the part of your immune system that help your body remember what to attack).  You have to make sure to get the right tests and there are some people that will have false negatives.  I believe that you have to be eating gluten in order to have enough antibodies to get a positive result.  When I last was reading up on it about 3-4 years ago, the consensus was that children under 4 generally didn't have enough antibodies to show up using this test. You can also do genetic testing. The problem is that you can have the genes and not have celiac disease. That's because celiac disease doesn't actively start until it is triggered by some event. Sometimes the trigger is illness and other times it's something else. For me, it was getting parasites.

When I first discovered I had celiac disease at age 18, doctors were not very well informed about it. They still believed it was very uncommon. The accepted numbers then were something like 1 in 2000. Now they know it is as common as 1 in 133 people. That means you'll be running into a lot of people who have it. After first being diagnosed, it's nice to have a support group. There are often local support groups. I used to visit a celiac disease forum online. The community had many knowledgeable people, including some doctors, who were celiacs. If you have any questions, this is a great resource. Here's the link.  Click the "Start Reading" button on the left to view all the posts. Also, realize that food is a very emotional thing. You may find you have to mourn not being able to eat your favorite foods or the loss of convenience eating gluten-free brings. Eventually it will get better. I don't remember what many gluten-filled foods taste like or miss them anymore.

What exactly is all this fuss about? What is gluten? It's a protein and it is found in wheat, rye, and barley. At least, those are the typical grains listed, but there are other grains that are related enough to wheat, rye, and barley that they are a problem. For instance, I know spelt and kamut also have gluten. Technically, oats do not. However, oats are often processed in the same facilities as wheat and so there is usually some wheat mixed in. You can find some oats that are grown in dedicated fields and processed in dedicated facilities. Some celiacs, including me, still have problems with these dedicated oats.  My advice is to avoid them. Some items that can be used to make gluten-free flours are rice, potatoes, tapioca, corn, quinoa (keen-wah), beans, buckwheat or kasha, millet, and sorghum. I'm not making exhaustive lists here, just giving you an idea of what's out there.

For those who haven't thought about it, where do you find gluten? It's in flour--even white flour (still made of wheat!). So, any bread, cookies, cakes, etc. contain wheat.  Soups use wheat flour for thickening so canned soups are usually not okay. Most cereals, even rice crispies, aren't gluten-free because they are made with malt flavoring and malt comes from rye. That also means no beer! Even foods that have no gluten in their recipes can be a problem--they might be processed on the same equipment with things that do contain gluten. Allergy labeling has gotten much better. Many manufacturers will now say something like, "Produced in a facility that also handles wheat" or "This product contains wheat." Some people are willing to eat food that might be contaminated. And, it's true, the food may never come in contact with wheat. But, you'll have to decide if you're willing to take that chance. I'm not. The best way to figure out what has gluten is to read the labels!! Chex has recently created a dedicated facility just for gluten-free cereals so Rice Chex, Corn Chex, and some of their other flavored Chex cereals are gluten-free. It says on the box, so make sure you check. One other place people never think to check for wheat is soy sauce. One of the primary ingredients of most soy sauce is wheat flour. There are some brands that don't have wheat in them, or you can find tamari sauces which don't use wheat. White DISTILLED vinegar, made from wheat, used to be considered to have gluten. Now, however, they have determined that the gluten doesn't survive the distillation process (it involves evaporation and condensation--gluten is too heavy to evaporate or something like that). An easy way to avoid gluten, especially as you're coming up to speed, is to stick to simple, unprocessed foods.

Again, the information I've included here isn't exhaustive. It will hopefully give you a place to get started.