Sunday, January 4, 2009

FAQ: New to Celiac

I've noticed that all the newbies on the Celiac groups ask the same questions. They generally know the basics, i.e. what Celiac is, and why they must avoid gluten, but that's it. So I'm writing an FAQ. It's filled with my opinions on things, but it's noted as my opinion, not fact.

1. What is gluten in? What foods do I have to avoid? Wheat, barley, rye, spelt, durum, triticale, and commercial oats. These and their by-products are found in any number of foods. Check out's list of things to avoid Be especially careful with soy sauce, any bottled sauce, vitamins, and candy. Remember, some gluten-containing ingredients don't necessarily have the words gluten or wheat in them. For example, malt is almost always a barley product. Brewer's Yeast is glutenous.

2. How much gluten is too much? Can one little crumb really do that much damage? Any amount of gluten is too much. One crumb can set of a major auto-immune reaction and cause internal damage to the villi of the small intestine. It can hurt like hell, or not at all. You may not even notice a reaction, but if there is gluten in the system of a Celiac sufferer, there will be damage, i.e. No reaction != no damage. Various countries have different standards for the label gluten free. In Australia, things can be labeled gluten free if they have 5 ppm (parts per million) or less. In Europe, it is 200 ppm. Personally, I get sick at as little as 5 ppm. The gluten in Rice Dream makes me sick.

3. One person in our house has Celiac. Does the whole house have to go gluten free? Or can we have just gluten free food for our Celiac person? That depends. How careful can you be? Will you be using regular flour? (Airborne contamination is a real problem). Can everyone in your house be counted on to keep crumbs out of the gluten-free food?

Personally, I strongly recommend making the whole house gluten free. Here's my story: I was diagnosed in 1999. I went on a gluten-free diet, but did cook gluten foods for my family. I also went to restaurants and didn't worry about food made on the same line as gluten items because I had no visible reaction from these things. Some of my symptoms got better. Some didn't. Those were not attributed to Celiac at the time, and I got a diagnosis of Fibromyalgia and Chronic Fatigue Syndrome. I was in agony, but I wasn't having the GI symptoms very often. I was taking narcotics for pain. I was taking sleeping pills for my insomnia. I was a mess. I couldn't concentrate, I couldn't function on most days. I developed myoclonic seizures. In 2005, my husband was diagnosed with Celiac as well. Our house became gluten-free. My Fibromyalgia all but disappeared, my Chronic Fatigue evaporated. I am now healthier than I've ever been. And I do mean ever. I still have the seizures, but they are known not to get better on the gf diet. They get worse if I get any gluten at all. We were careful. I had a different toaster, different utensils, different margarine, etc. Everything went through the dishwasher before I used it on my foods. It wasn't enough. I could have been spared 6 years of pain and misery, and lifelong seizures, if only I'd insisted the others eat gluten-free food as well.

4. Do I have to replace my cooking utensils? Yes! Stainless steel, glass and ceramics will be okay, but cast iron, anything with teflon, anything wooden, or made of porous plastic will have to be replaced.

5. Should the rest of the family be tested? Absolutely. Celiac runs in families. Sometimes there are no symptoms either, so test everyone.

6. Are these tests reliable? No. The blood tests are not reliable. Especially for children. At 11, my Celiac daughter tested negative. She is definitely not negative. False negatives are very common. False positives are very rare, but not entirely unheard of. Biopsy of the small intestine via an endoscope is considered the gold standard, but even that can be falsely negative if the damage is patchy and they don't take enough samples.

If you suspect gluten, but have had negative tests, consider testing from Enterolab, or just do a gluten challenge. Take gluten out of your diet for 2 months. Then eat something gluteny. See what your body does. Even if you don't get a definitive diagnosis from the doctor, you'll know that you cannot tolerate it.

7. What's the deal with lactose intolerance and gluten? Lactose is digested by the tips of the villi. If these villi are damaged, they will not work properly. Once on a gluten free diet, the villi will heal, and you may be able to tolerate lactose again.

8. Can I eat at restaurants? In my experience, no. I have a reaction every time I eat at a restaurant. Every time. Some people say that they can eat at restaurants, no problem, but I am reminded that no reaction != no damage. Unless the restaurant is entirely gluten-free, I cannot imagine how they could keep gluten out of the other food. For example, do they make bread, dough or batter? If so, how do they keep the flour from getting in the air and then landing on the other food and cooking surfaces?

I know, I sound like the gluten Nazi, but having seen what the long term effects of gluten contamination can be, I am now VERY careful, and I hope that others will be too. Remember, long term damage to the small intestine can lead to Cancer, other autoimmune diseases and neurological problems. Is that restaurant meal worth it?

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