Quote:
Originally Posted by LeslieLou
kaplods.....I feel the same way about being tested. From what I have researched, the testing isn't accurate. Some people with celiac do test positive but some people can test positive even if they don't have celiac. Also, some people WITH celiac will test negative. And the biopsies...well....if they aren't done in the right spot of the small intestines that has been affected then they will show negative too. After all that, the only treatment is to avoid gluten...so I just decided I would do that. I may consider getting testing sometime later but for now...I'm just gonna avoid gluten. I dont really miss bread cause I feel better without it. You can always wrap your turkey or whatever in a piece of romaine lettuce and also you can have corn torillas you can wrap them in.
Gluten can even be in instant coffee or condiments. Reading labels has become crucial for me :P
Kaplods...if a little bit of wheat can cause you to have a red, itchy rash then a lot of wheat might be dangerous for you. I would certainly avoid it if I were you.
I agree. The longer I go without it, the more severe the reaction and the smaller the amount that seems to trigger symptoms. Since there's no telling how severe the reaction could become, I have to assume a zero threshold.
The noodle incident was a huge mistake. I was so excited to see our favorite restaurant add a dish that had been a favorite I hadn't had in years, I forgot completely that noodles usually = wheat. I'm surprised that hubby didn't remind me, but he thought I was choosing to take the risk. We then talked about it, and I asked him to remind me whether it seems obvious or not. I'm not saying it's his responsibility to police what I eat, but until this becomes second nature, having some extra help will be appreciated.
Most of the books recommend not going onto the diet without testing. The true severe celiac diet is so restrictive they don't want people to have to go through that if they don't have to - but they also point out that without the test, people who do have the disease may not be as careful as they need to be.
I understand the reasoning, but I'm not really willing to go back to eating a lot of wheat, just to prove that I can't eat wheat.
The rules are so confusing though. They even say that if there are wheat-eaters in the house, you have to keep different sets of cookware for the wheat food and the gluten-free foods. You can't cook gluten-free until an hour after cooking wheat, because wheat particles in the air can settle on the gluten-free food.
They used to think that children with celiac disease "grew out of it" because symptoms became less (obviously) severe, but they've learned that continuing to eat wheat increases the adult's risk for autoimmune disease including lupus (I have an autoimmune disease that shares some features with lupus).
Since I've drastically reduced wheat, yeast, and sugar (and carbs in general), my autoimmune disease appears to be in remission, except for flares after I eat significant amounts of those foods. Since they tend to appear in combination, I wasn't (and still am not completely) sure whether it's all three, or just the wheat.
It's interesting though to read the stories in these cookbooks about people diagnosed with celiac disease, how even they (knowing for sure they had the disease) had to learn "the hard way" in the beginning. Wheat is in so many things, even foods that should be gluten-free and wheat-free aren't. Some celiacs react to oats - and oats are (in theory) are gluten-free. But often oats are processed in a plant on the same equiptment that processes wheat. In some cases, they believe that oats were contaminated not in the processing plant, but in the field (if oats are grown in a field near wheat, the oats can become cross-contaminated).
Some celiacs never eat in restaurants, others are very careful (and ask to talk to the chef and see the kitchen).
It's a bit overwhelming.