Celiac Disease

A friend sent me an email asking some questions about Celiac disease.  I understand she is doing a case study for one of her nutrition classes, and like any good student she's using all the available resources, including me. ;)  She asked about specific foods. I spent a good amount of time typing all this up, so I thought I'd share.  If you've ever wondered why I'm so darn picky about my food, or why eating Gluten-Free is so expensive, have a read.

Hi A,
I'm happy to help :)

I bit o background. Most of my knowledge is based on life experience having been diagnosed with Celiac Disease in October of 1996. I was diagnosed based on a symptom picture, response to diet and heredity. My mom was diagnosed a few months earlier with the traditional stomach biopsy. My brother and only sibling also has CD. Since May of 2008 I have been eating casein-free as well. I was still having problems and my naturopath suggested I try to remove dairy to see if I had any improvement. Turns out that a lot of celiacs also react to the casein protein the same way they do gluten. I am also mostly vegan, (regular salmon and maybe 2x per year a few eggs), and I eat a whole food almost all organic diet. Most Celiacs do not. They are what I have come to call 'common' Celiacs who eat a very Standard American Diet except that they subsititute GF foods for what they used to eat. ie lots of bread, bagels, pasta, etc. I also have a bunch of food sensitivites on top of these dietary restrictions including most latex-related foods and I follow an anti inflammatory (arthritis) diet. (basically no nightshade veggies, sugar, alcohol, or caffeine.)

I let you know all of this because I will answer all of the following information as if I were a common Celiac. Meaning, I won't simply say, eeew, bologna. yuck, and move onto the next one. ;)

bologna (and other processed meat products) -rarely are thse actually gluten-free unless specifically stated. Protein is expensive, plain and simple. If it's possible a company will add modified food starch to their product to save money. The starch could be corn, or tapioca, but it's usually not specified on the label. Often flavorings are used like teriyaki, soy sauce, or smoke flavoring which are rarely GF. While most basic dairy foods are GF, anything that is low fat or fat free rarely is. The fat is removed from the product and replaced with starch. Ice cream, cottage cheese, yogurt, sour cream and margarine are suspect.

Lean Cuisine- the only prepared meals I even look at are at Whole Foods or Sprouts. Espcially the diet foods. Same as above, to reduce calories the fat is removed and replaced with starch fillers and artificial flavorings. And soy sauce is not GF, so anything Asian is usually out.

Casserole- Any common market brands like Campbells, etc are not GF. In fact, I have found very few canned soups that are but Amy's and a couple fo othr "natural' brands are GF. Green beans and onions are ok, but any pre-seasoned product is suspect. At a friends house I would not touch this unless they were able to tell me which brand of soup they used and I knew it to be GF.

Cheese food- I actually think some of thse are GF. Velveeta is, but a lot of brands are not. Starch fillers again. In my world it's not real food so I don't go there. No nachos at the movies for Celiacs.

Pudding- I doubt most common brands are for the same reason as the other foods above. I have found a brand (can't recall the name) at Whole Foods that I can make that was safe. Lately, I've made my own using various milk substitutes, unsweetened, chocolate, agave, and arrowroot.

Cola- for years Celiacs were told that caramel coloring was not GF and so we all avoided brown sodas like cola and Dr. Pepper. I've been told since that that information was incorrect. Info on vinegar changed too. Distilled vinegar used to be on the no no list, now I'm told it's ok.

A few words on food labelling. The FDA and activist organizations are working on this. In fact, I just recently filled out an online FDA survey about it. As I understand it to be labelled "Gluten-Free" a facility must pay an independant testing agency to test their product and processing methods for the presence of gluten. It's part of why the foods are so expensive. Gluten can only be present in some small amount measured in parts per million or something to make the grade.
A lot of reputable natural food companies are now opting for the less secure "No Gluten Ingredients Used" with a reassuring statement on the product like, "We at Natural Food Company care about your health. That's why we monitor our process for the presence of allergans and maintain high quality standards." Personally, if I'm familiar with a company and have used their products before, then this is usually enough for me. There is also the vague label of "this product is processed in a facility that also processes wheat, dairy, and tree nuts." It doesn't say how far away the wheat was processed or if it was on the same machinery on the same day, or if they clean the machinery in between products, etc. It's like playing roulette with my gut. Labeling like that is to protect the company from law suits, not to protect me and my health.
The new labels that came out, what, 5 years+ ago, that list common allergans at the end of the ingredients in bold has been helpful. Sometimes I'll read a list and it looks fine, but the end says "Contains wheat and soy." Huh. A few years ago I'd have eaten that. Hopefully the FDA will get on this and there will be some standardization soon.
There are no laws on labeling for alcoholic beverages. Celiacs can't have malt like wine coolers or hard lemonade, or barley beer, and some liquors are processed differently to add gluten. I think regular Cuervo is ok, but Gold is not. Top shelf vodka is ok, but cheaper well vodkas add the mash back in to add flavor. No labels here. The only way to know this is by reading research online.

A few other thoughts. It has been shown in studies (I have no references) that flour from baking stays in the air for some 60ft before it settles. That's why places like Picazzo's Pizza, who offer a GF crust, cannot make their own GF crust in the same facility. It must be prepared offsite in a GF bakery. Processing is key. I've been told that Picazzo's takes care to cook the GF crust not directly on the same surface as the regular crusts. Some places have "allergy pans" for rice noodles and such, but the education of cooks, food prep, and servers is necessary to improve handling procedures. And there's never any guarantee unless I do it myself. Even PF Chang's, one of the first chain stores to have a GF menu, still says eat at your own risk and we're not responsible for your food reactions.

Many Celiacs think it's silly to use GF personal care products. I do not. It' smy believe that once something enters my energy field it affects me, think about muscle testing and kinesiology. No, it might not set of the auto-immune reaction in the gut, but it can still 'stress' my energy and my physical body. I choose to use soaps without oat protein, and shampoo without wheat protein. I read labels on hand lotion, hair coloring (henna), toothpaste, make-up, mouthwash, moisturizing cream, and chapstick to name a few. I also have MCS, multiple chemical sensitivities, so I use everything fragrance-free like detergents and cleaning products.

There are also sources of gluten that most people aren't aware of. Wax on conventionaly grown fruits and veggies, adhesives like the back of envelopes, and Pam cooking spray are a few that come to mind.

Heh. No wonder I'm a little paranoid.

Wow, I really rambled. I hope this helps your class. I enjoy educating about CD, especially someone like you who has some expertise in nutrition and natural foods. Thanks for asking.

light and blessings,
Lauren