Gluten-Free Alternatives

How to Go Gluten Free!

Going 100% gluten-free can be simple or complicated depending on your eating habits and discipline. For most people it’s somewhere in between. The complicating factors are 1) How often you eat out, and 2) How often do you eat processed or prepared foods. (For example: breakfast cereals, canned soups, barbeque sauce).

Eating Out

Eating out poses a problem because you can’t control, and often don’t know, the ingredients being served in a restaurant meal. I thought I was safe ordering cheese enchiladas from Mexican restaurants–wrong. It turns out that enchilada sauce is thickened with flour. Something as seemingly simple as meatloaf with mashed potatoes and gravy may contain breadcrumbs in the meatloaf and flour in the gravy.

In addition, a restaurant may make a certain gluten-free dish, but they might use cooking equipment that has residue bread crumbs or flour on them. Suppose you order a hamburger paddy from a restaurant without the bun. They may fry the burger in a frying surface on which they brown the bun which may contaminate the burger. Or suppose you go to a Mongolian barbeque restaurant and load your bowl with meat and vegetables, assiduously avoiding the noodles. Then you watch as the cook stir fries the order on a stove that has cooked 50 previous orders with noodles. It’s sad, but these are the facts.

Your best bet to ask about the ingredients before you order. Tell the waiter or waitress you have a severe allergy to wheat and barley and that you will KEEL OVER AND DIE IN THE MIDDLE OF THE RESTAURANT if even a speck touches your mouth. Be aware that many people might not know whether a dish has gluten in it or not. For example, a chef may use soy sauce in a dish and not know that it contains gluten.

Eating Processed or Prepared Foods

The problem here is that gluten is hidden in so many products. Beer is made from barley. Almost all soy sauce contains wheat, which means that teriyaki chicken, steak, and salmon has gluten in it. (Thankfully there are some gluten-free soy sauces[LINK]) Rice Krispies are gluten-free, right? Wrong, they contain malt, a derivative of barley. Campbell’s Mushroom soup? Thickened with flour. And so on. Even something as seemingly benign as packaged dates or candies may have been dusted with flour to prevent sticking.

The key here is to religiously read the ingredient list on the packaging of all prepared foods, and to know which types of foods and ingredients contain gluten. Congress has recently passed into law a bill that requires food makers to label, in plain English, eight troublesome ingredients: milk, eggs, fish, crustacean shellfish, tree nuts, peanuts, wheat, and soybeans. It will not go into effect until 2006 and unfortunately barley and rye are not included on this list, however, it is a good head start. We provide a list gluten-free and gluten containing foods here[LINK], but we cannot guarantee that this list is 100% comprehensive and without mistakes. In addition to this list, there are a number of other lists that you can find on-line.

Probably the most effective way ensure a 100% gluten-free diet is to prepare all your foods from scratch. Some diets such as the Paleolithic Diet are naturally gluten free. Pam’s primary diet consists of meat and fruit or vegetable salad. In any case, going gluten-free will take some amount of discipline.

Ataxia Awareness

Before starting the diet, become very aware of how you feel. Ask yourself these questions, and write down the answers with as much detail as you can:

How ataxic are you?
What time of the day or month is your ataxia worse?
What are the symptoms and how bad are they?
Are the symptoms getting worse? If so, how quickly are they getting worse?

You want to have a good documented awareness of how your body feels now so that when you lower your anti-gliadin level you can tell whether the gluten-free diet is working for you. You’ll also want to record your current anti-gliadin level before you start the diet, and you should get regular blood tests to monitor your progress. It is impossible to know how sensitive your body is to gluten. It may be that only a very minute amount may be dangerous to you. For that reason, you must strive to eliminate gluten completely. It is also impossible to know how the gluten-free diet will affect your ataxia except by experience. I started out with a level at 63 (below 20 is considered normal). My latest test was below 1 and I’m feeling pretty good!

Going Gluten-Free

Ok, you’ve gotten your test, you’ve made yourself aware of your ataxia, and you’ve decided that you are going to go gluten-free, now what? Step 1: go to your kitchen set aside every item that contains gluten. Be brutal. Read the label on every food item in your refrigerator, freezer, and cupboards and compare those items to a gluten free list. (We provide one here[LINK], but there are many others that may be easier for you to use or perhaps more comprehensive.) Don't be shocked if ? of everything in your kitchen is in the gluten pile. Besides wheat and flour, particular ingredients to watch for are food starch, anything with the word malt in it (malt flavoring, vinegar, and so on), textured vegetable protein, and soy sauce.

Sometimes it helps to have a friend or loved one help you do this. Watching mounds of your favorite foods being banished from your kitchen can be personally excruciating and the support will help. Don’t let them do it all, though. You need to get the feel for what types of ingredients are in various types of food. When you have completed the separation, send the food to your neighbor or to the local homeless shelter.

The next step is to determine what you will be eating for the rest of your life. For most of us there are some major carbohydrate foods that we eat every day which will no longer be safe for us to eat. This may be such things as bread, pasta, flour tortillas, pizzas, cakes and so on. Some of these can be replaced with excellent gluten-free substitutes, for example some rice pastas are as good as wheat pastas. Others, can be replaced by items that are ok, but not as good as the original (bread). Finally other items (Pizza) have no decent substitute. One thing to know is that gluten-free replacement foods are rather expensive at this time. Hopefully prices will come down as demand increases.

Our gluten-free grocers can help replace some of these foods. We have taste tested and given the thumbs up to most items in the grocers, but as with many things your tastes may vary from ours. First orders are given a 10% discount. In addition, a percentage of every sale will be donated to the National Ataxia Foundation.

The Gluten-free and Gluten-ful List

There are many gluten food lists, and you should look at as many as you can. This is just urs, compiled from other lists including the one we received from the NIH.

The following is a list of common foods that are safe (contain no gluten) and unsafe (may contain gluten). Again, note that this and any other list cannot be completely comprehensive, and may even contain some mistakes. Use your judgement and read labels!

The following items may or may not contain gluten depending on where and how they are made, and it is sometimes necessary to check with the manufacturer to find out:

# 1) According to 21 C.F.R. S 101,22(a)(3): "[t]he terns 'natural flavor' or 'natural flavoring' means the essential oil, oleoresin, essence or extractive, protein hydrolysate, distillate, or any product of roasting, heating or enzymolysis, which contains the flavoring constituents derived from a spice, fruit or fruit juice, vegetable or vegetable juice, edible yeast, herb, bark, bud, root, leaf or similar plant material, meat, seafood, poultry, eggs, dairy products, or fermentation products thereof. Whose significant function in food is flavoring rather than nutritional."

# 2) Maltodextrin, when listed on food sold in the USA, must be (per FDA regulation) made from corn or potato. This rule does NOT apply to vitamin or mineral supplements and medications. Donald Kasarda Ph.D., a research chemist specializing on grain proteins, of the United States Department of Agriculture, found that all maltodextrins in the USA are made from corn starch, using enzymes that are NOT derived from wheat, rye, barley, or oats. He cautions, however, that there is no guarantee that a manufacturer won't change their process to use wheat starch or a gluten-based enzyme in the future.