Fortunately, around where we live anyway, there are sections in our regular supermarket and in some of the health food stores that sell gluten free products. We have been experimenting with gluten free diets since 2004 when my son was born with Down Syndrome. I had read that people with DS are more likely to develop Celiac Disease, so I kept him gluten free until he was 2. He has eaten wheat etc. for the last three years with no problems, but my daughter's problem has made me realize that I should make him gluten free again, too.
It is not easy at first, especially if you eat a lot of processed foods, and it can seem overwhelming and almost impossible. I used to think "what can we eat?" since wheat was such a big part of our diet (pasta, crackers, bread, cakes, cookies, donuts, etc.) The other problem is, if you have the same sort of allergy to wheat, you may notice that you feel terrible for a few days, if you totally eliminate it from your diet. It makes it twice as hard to get through, when you are craving wheat all the time. I think eliminating it from the diet, however, is a good test, since I didn't think it was a problem for my daughter until she didn't eat it for two days. Yesterday she was terrible - she cried non stop for 3 1/2 hours and wanted to eat constantly. Today she seems better.
Anyway, if you plan on trying such a diet, I would figure out what cannot be eaten, and then make a meal plan. Stock up on items that can be substituted, stick with it and plan on feeling terrible for at least three days. After this three day period, if it is wheat that is causing your problems, you will feel much better. You also have to watch for hidden ingredients such as barley malt in rice krispies etc. Just because it says rice, does not mean gluten free (unless it is clearly stated on the package) about milk - I let my kids eat organic whole milk yogurt, plain, with a bit of fruit mixed in for flavor. no pre-sweetened small containers. they don't like milk anyway.
The worst part for everyone, was no pizza.
I found that once I eliminated all the junk (breads, cookies, etc.) I stopped craving them and don't even like them much any more.
Good luck with everything. I know how difficult this all is, especially when the specialists tell you that they don't know what causes the problems. I can't accept that there is no way to find the cause. To me, it seems likely that most problems are dietary. Taking drugs just masks the symptoms and doesn't solve the problem.
I thought it was interesting that my daughter's neurologist said that he was willing to let us try a nutritional approach, if we could get accepted by the doctor in Boston who does the program. He told us that usually, all medications have to be tried first and shown not to work before they will accept patients for dietary treatment. I guess there is no money to be made by getting people to change their diets.
Here is a link to the book that I mentioned before. I had to use inter-library loan to get it sent to my library, and I am still waiting for it, but there are several pages from it that you can read here.
The following is from an article I read two days ago.
Also, you can find lists of foods online that show what to avoid on gluten free diets. For now, we are just eliminating wheat, barley, oats and spelt. some say corn is bad, but it has never bothered me.
DIETARY ASPECTS OF EPILEPSY
Food reactions can trigger epileptic seizures. The main culprits are the following foods that are rich in glutamate and aspartate, two very excitatory amino acids:
1) Grains: Wheat, barley, and oats are highest in glutamine. Corn and rice are lower. Therefore they are much better for anyone with a tendency for epilepsy.
2) Dairy Products: All cow milk products are high in glutamine. Goat-based cheeses and dairy is much, much better. Cow-based cheese that is worst include cheddar, Swiss, Monterey Jack, Mozzarella and worst is PARMESAN. Casein is very concentrated in cheese and is 20% glutamic acid by composition.
3) Beans: Soy, Pinto, lima, black, navy, and lentils. These are also high in glutamic acid or glutamine.
4) Seeds: Sunflower, pumpkin, and others are also high in glutamine, though less than wheat and dairy. They can often be eaten in small quantity with a meal unless one is very sensitive.
5) Peanuts: These are very high in glutamine, as are cashews, pistachios, and less-so almonds. Everything in moderation applies when eating nuts of any kind. So, I do not recommend you reach for nuts when you are really hungry unless you can stop after a few. For example, seven toasted almonds at once is plenty.
6) All Soy Products, except perhaps for a little tofu and tempeh. Soy is very high in glutamine. Beware, as soy is incorporated into many, many products as a filler and cheap protein source. It may be labeled as vegetable protein, textured vegetable protein, soy isolate or not labeled at all, sadly.
7) Diet Drinks And Diet or Non-sugared Foods of All Kinds: these are the primary source of aspartate as they are often sweetened with Nutrasweet, also called Equal or aspartame. AVOID ALL PRODUCTS CONTAINING THIS INGREDIENT.
8) Prepared Foods Such As Soups: 70% of prepared foods and many soups have MSG. AVOID ALL FOOD PREPARED WITH MSG. This may also be labeled as hydrolyzed vegetable protein, soy protein extract, textured vegetable protein – or not labeled at all, sadly.
9) Meats: Note- All meats are naturally rich in glutamate and aspartate. Rabbit and turkey are the highest. Lamb and eggs are the lowest. Chicken is not bad either. We believe that the amount in a normal serving of meat should not be enough to cause problems. I think that it is all of the other "unnatural" sources when combined with the meats that are causing the problems.
Sixty to seventy percent of the American Diet is wheat and dairy (with heavy emphasis on cheese). This, combined with the amount of artificial sweeteners being consumed and the addition of soy protein, is leading America and the world into an epidemic of seizures and other inflammatory (pain) syndromes such as fibromyalgia, arthritis and many others.
WHAT TO EAT
1. Drink Plenty of the Best Types of Water.
Spring water is a better long-term drinking water as it contains more beneficial minerals that most people need for long-term nutrition.
2) Vegetables. These are not only excellent foods, especially when steamed and cooked in other ways, but not overcooked. They are also very low in the offending amino acids.
3) Flesh foods, especially, chicken, lamb and some turkey are excellent. Eggs are also relatively low in glutamine.
4) Grains to eat include rice and blue corn in moderation until the intestines are healed. White rice is fine and brown rice is generally even better. Organic blue corn has other excellent properties, which is why it is recommended. It is also less hybridized than most white corn in particular. Organic yellow corn may also be good.
AVOID all forms of wheat, including bulgur, durham, semolina, triticale, spelt and the others. Avoid all wheat products, which is difficult if you eat processed foods with flour, thickeners, dough conditioners and much more.
5) Fruit is not very recommended although it is low in glutamine and aspartame. It is not desirable because of its high sugar content on one hand and its high water content as well. Water in the fruit dilutes stomach acids, needed for proper digestion. Eat it alone if you must have it. The sugar content of most fruit upsets blood sugar terribly in some children and can easily trigger a seizure. Also the fruit acids are not handled well by many ill people. These are another cause of problems with fruit. Fruit is also very yin in Chinese medical terminology. This can cause problems, particularly in slow oxidizing individuals, as explained above.
5) Dairy. Eggs are excellent, as they are proteins with quality fat with a very low glutamic acid content. Goat milk products are also very low in glutamine. Cows milk and cheese are high in glutamine, by comparison, and are best avoided or eaten in lesser quantity. Organic milk products are often tolerated much better by some people. Butter is acceptable.
6)Nuts that grow on trees such as toasted almonds, toasted pecans and walnuts are best. NOTE: These are relatively low when compared to peanuts and cashews.
Pecans, for example, have half the amount of glutamate that peanuts have but that is still quite a bit. Again, everything in moderation applies when eating nuts of any kind.
OTHER FACTORS IN MILK, DIETARY Ph AND STIMULANTS
Drinking milk can trigger seizures in sensitive people. Milk is very high in calcium, but low in magnesium.
This author worked with a child who had an inborn chromosome disorder. Each time the child ate food that caused her body to become too alkaline, such as fruit, she had a seizure. Correcting her pH by avoiding certain foods reduced her seizures.
The consumption of sugar, caffeine or the excitotoxins such as MSG and aspartame (Equal or Nutrasweet) only aggravate seizures. Stimulants of all kinds can produce fluctuations in blood sugar that affect neurotransmitter levels and may irritate delicate structures in the nervous system.
In summary, diet should never be ignored in cases of epilepsy. The patient would be well advised to keep a dietary record. Note any correlation between foods eaten or not eaten, and the occurrence of seizures.