Sorry it took me a while to get back online. My house is crazy this time of year. Tara is only one of four children and the oldest is a teenager, not yet driving. So, I don't get as much time to devote to the computer as I'd like.
I know exactly what you mean about the doctors. As a matter of fact, Tara's first doctor argued with me about what he had told me and not told me she should be eating. I changed doctors and all the second doc could say was there wasn't any medicine on the market for children, and sent me on my way. I was so dumbfounded and frustrated that I didn't even know what to ask next, and so we just left-with no more information than we arrived with! As far as Tara's pain, it doesn't last for days, only as long as it takes for her bowels to rid itself of the trigger. She must have very fast motility because it usually only takes about an hour, but sometimes a couple of hours. But it was so severe that she sometimes would even lay on the floor in the bathroom and pull at her face, hair and clothes, sometimes screaming, asking why can't somebody find out what's wrong with her, but mostly begging God why He can't just take it away! But she (nor I) have lost faith! I keep reminding her that it was because of Him that we found Heather's website and she leads a mostly normal life now! After her attacks she would go straight to bed, exhausted. She also has had trouble with her weight. She weighs only 57 pounds, up 2 pounds in the last week! I have an appointment with a nutritionist in about two weeks, and she's instructed me to keep a detailed food log for when we come in to see her, so that she can suggest some supplements. But as far as you just starting out, I can tell you, I wish I had read ingredients more closely in the beginning. In the beginning when she was only eating "safe" food, I didn't take into consideration such things as MSG (monosodium glutamate), or dried dairy hidden in products (anything with whey), and egg yolk. Tara can't handle ANY egg yolk! And there is only ONE mayonnaise I've found that doesn't contain egg yolk. It's Hellman's Low Fat (grass green lid) mayo. She still only eats it sparingly, only because she's scared. But even something as simple as Taco Seasoning. I made tacos (with ground turkey) for dinner one night and used a prepared packet to season - WRONG! It contained dried milk. Now I look up things in the recipe message board any time I try to modify a recipe. At first you may feel like he may never eat but a handful of the same things for the rest of his life. But after you learn how to check ingredient lists for triggers, it gets easier to modify some of your family's favorite foods. Sorry for the long post, but I hope this helps. Feel free to email me if you feel the need to talk privately. firstname.lastname@example.org