Everyone in my family has a certain degree of gluten intolerance--my daughter mild, my husband moderate, and I'm severe. My husband and I also are intolerant to soy, and we also have an allergy to casein (cow milk products), which we suspect my daughter is also getting (she was allergic to cow's milk as a baby, grew out of it, and has the potential to acquire it again). We were diagnosed 3 years ago; I was 40, my hubby was 37, and my daughter was 7.
I find it much easier to live with a gluten intolerance diagnosis than I would with a Celiac disease diagnosis. Because Celiac is an auto-immune disease, you cannot have any amount of gluten/gliadin at all. Nada. Whereas with intolerance, you can have some gluten/gliadin--sparingly--depending on what your reaction is and what symptoms you get when consuming gluten/gliadin. In a perfect world, you shouldn't eat anything with gluten/gliadin, even with gluten intolerance--but we don't live in a perfect world. And once you start reading--really reading--ingredient lists and note all of the many, many different ways that gluten is hiding in ingredients, you'll begin to see how hard and difficult it truly is to stay away from wheat, barley, rye, and all of the many different derivatives made thereof.
It is a lot harder and a lot more restrictive to live with a Celiac disease diagnosis. Basically, you have to cut out just about all premade/packaged convenience foods (unless they're specifically gluten free products) as well as fast food. Even if a restaurant states they do gluten free--it usually means one or two items are gluten free, and that's all the choice you get. An example is Panchero's Mexican fast food. The nacho chips (corn), salsa, guacamole, are gluten free; you can have a burrito minus the burrito (there is no substitute offered); and only the chicken and pork are gluten free (the beef has both gluten and soy in the sauce mix.
Many times, if you take the meat off the bun, you're okay if you have gluten intolerance to just eat the meat. However, if you have Celiac disease, not even a gluten bun should touch the meat--otherwise, the meat is contaminated with gluten. So for a Celiac person, just taking the meat off the bun wouldn't work; the meat would have to come out of the kitchen having never touched any bread (ditto for no croutons on a salad. If the salad comes out with croutons, an entirely new salad has to be made because the croutons have contaminated the salad).
Another restaurant that offers gluten free would be Uno's Chicago Pizzaria, which just started offering gluten-free pizza about 9 months ago. They have three types of pizza (pepperoni; vege--mushrooms, peppers, onion; and cheese) that they make up in a dedicated area in the morning, then freeze and take out when needed. I called and asked if they could also do goat cheese instead of cow cheese and was told by our restaurant in town that if they had a day's notice, they could modify the recipe. But the ability for us to just spur of the moment order a gluten-free pizza from them is gone because of our casein issue as well.
I subscribe to the magazine Living Without, which covers a wide expanse of all food allergans but devotes most of its pages to celiac disease/gluten intolerance. They have some wonderful recipes inside, and also on their Web site that you might want to check out. I stay away from those "chefs" who post recipes--only you have to buy their flour replacement mixture in order to make their products. Living Without gives you lots of substitution ideas at the back of their magazine, as well as various flour substitution mixtures.
I agree, attending a gluten free group is a lifesaver for most people, at least until you understand the disease and get homemade cooking gluten free under your belt. I belong to MAGIC here in Madison, WI. Great organization. However, I always caution that if you have mere gluten intolerance, the Celiacs in the group tend to look down upon you. Like you and your problems aren't as serious or demand as much attention as theirs. This is an outlook shared by other friends of mine who are gluten intolerant.
Another thing I have noticed since traveling the gluten free path: Usually those people who test positive for Celiac disease also test positive for lactose intolerance (usually, you can still eat/drink cow milk if you take lactaid products or buy lactaid milk). For those of us with gluten intolerance, I am finding that many of us are testing positive for casein allergy (or whey allergy, the other protein in cow's milk), which means NO cow dairy products at all. However, many of us find that we can still eat and absorb (and not get sick from) goat or sheep milk/products. Something to do with a specific enzyme or amino acid that's in cow's milk that is missing in goat and sheep. We also drink or use other milk alternatives, like almond, rice, hemp, oat, coconut, and hazelnut. Just an FYI.
Our MAGIC group has a large gluten free library of recipe books, which we're allowed to check out. That would be another way to find some recipes.
Basically, it's trial and error and getting your child (and your family--you and your husband and other siblings) to retrain your palate to eat healthier and more organic fare. There are many companies now making gluten-free products--but the taste of many of them isn't always the best. Also, the shelf life of baked products is very short--which is why the mixes bought at the store don't make big batches. Some goodies, however, can be frozen, which will extend life/great taste. And of course, anything you make at home in your own kitchen will make a larger batch.
If your daughter tests positive for Celiac, you'll have to replace the toaster (so that no gluten crumbs come into contact with her food), and probably other pots and pans and culinary tools. We didn't have to go that extensive; again, we don't have Celiac. However, I did buy a replacement toaster, since we only eat nongluten bread in the house, and kept the old toaster for when company comes (my parents bring their own bread to eat, so they need a toaster).
Some books that have helped me enormously and might be of help to you:
1. Recognizing Celiac Disease: Signs, Symptoms, Associate Disorders & Complications by Cleo J. Libonati, RN, BSN, with foreword by David M. Capuzzi, MD, PhD
2.The Gluten Connection: How Gluten Sensitivity May Be Sabotaging Your Health--And What You Can Do To Take Control Now, by Shari Lieberman, PhD, CNS, FACN
3. A Patient-Expert Walks You Through Everything You Need To Learn and Do The First Year: Celiac Disease and Living Gluten-Free; An Essential Guide for the Newly Diagnosed, by Lules E. Dowler Shephard with forword by Alessio Fasano, MD
4. Celiac Disease: A Guide to Living with Gluten Intolerance, by Sylvia Llewelyn Bower
5. Celiac Disease: A Hidden Epidemic, by Peter H.R. Green, MD and Rory Jones
6. Gluten-Free Girl: How I Found The Food That Loves Me Back...& How You Can Too, by Shauna James Ahern
I have found all of these books to be highly informative and very easy to understand for the average person.
And lastly, some great replacements for wheat, rye, and barley are the grains/grasses: teff, quinoa, corn, rice, amaranth, chia seed, flaxseed, millet, and wild rice. I'm sure I'm missing some; you'll discover lots of variety as you explore different options for your family. Chickpea is another good alternative, as are other legume flours and nut flours. Two gluten-free breads that you can buy at the store ready-made are Udi's (white or multigrain and cinnamon raisin) and Rudi's (white, multigrain, two other flavors). I buy most of my products at Whole Foods or Woodman's here in Madison, WI, as well as a few GF products and organic foods at COSTCO and Willy Street Co-op. I do not like Trader Joe's.
Good luck to your daughter and your family. If you'd like more information, please don't hestitate to contact me.
