First off, let me clarify by saying that I by no means expect people to go out of their way to buy specific ingredients for me (often expensive ingredients that they will only use once) nor cook dishes specifically for me. I don't feel entitled; like people should cater to my needs. If I am at your place for a meal, and I cannot eat something that is served, I will not make a big deal of it. That only makes you feel bad and makes me look bad. We live in a first-world country after all; if I don't get full at your place it is not the worst thing; I can eat when I get home. In fact, I am often prepared for not being able to eat everything that is served and I often eat a snack or even a small meal at home before I come! If I am feeling courageous enough, I may call ahead of time and ask what the person is planning on making, and that way, if you don't mind, I can bring whatever I need (salad dressing, for example). Sometimes, if I feel comfortable enough, I may ask if you can change a small part of the meal (put the salad dressing on the side, for example) and that way I may be able to eat the meal. But I just want people to know that I am not going to be upset with them if they don't cook according to my needs because I think that is just conceited; you are not my servant; you have been gracious enough to invite me over for a meal. But please also know I may not be able to eat everything, and not to feel sorry for me. I'll be okay!
Second of all, let me say that my reasons for avoiding certain foods are very real, and actually quite serious. It's not just because I don't like something or am concerned about gaining weight. Neither do I do it to get attention. Rest assured, I would LOVE to eat the foods I am avoiding!!
Thirdly, let me say a genuine "thank-you!" to the people in my life who have cared enough to ask what I can and can't eat. Most of the time, I admit, I assume that my health problems are a hassle and a nuisance to people, and even that they think I am making it all up. It always amazes me when I find out some people really don't mind going out of their way to provide food I can eat; that they actually want to. So thank you for caring. It means a lot to me, it really, truly does.
So, three things: why can't I eat certain foods? what foods can't I eat? and what foods can I eat?
For starters, I have a couple more minor health concerns that I prefer not to talk about in a public forum like this, but they do somewhat influence what I can and can't eat. There's no reason really to go into deep detail here, so I'll just say that I try to avoid anything acidic or spicy - so things like orange juice,oranges, and lemonade are a definite no-no, as is hot salsa. I also don't drink carbonated beverages. If I ever do have anything acidic or spicy - such as tomato-based products, a bit of pineapple, fruit juices in general, too much pepper or vinegar, etc - I make sure to drink lots and lots of water. And water's always a good thing! :)
Okay, now to the critical stuff! I will tell you what I can and can't eat, to the best of my abilities, but first the 'why'. I have epilepsy (specifically, Juvenile Myoclonic Epilepsy). If you do research on JME as I have, you will find that very few people have food sensitivities that affect their epilepsy, or at least there are very few who have tried dietary modifications to help their JME. But for epilepsy in general you can definitely find information. The main source of my information has been this website; my neurologist was very interested in my experiences and so I passed on to him the information that I had found helpful. However, neither my family doctor nor my neurologist have been overly helpful. My neurologist had me tested for gluten sensitivity and I am not gluten intolerant. Otherwise everything I have learned has come from trial & error and research online. If I could afford it, I would go see a nutritionist or naturopathic doctor. My neurologist is semi-retired now and I have been told I have to find a new one, so hopefully my next one will have some insight. What I would really love to see is an epileptologist; unfortunately my understanding is that there is only one in my province. Anyway, most of that is an aside to the fact that I have epilepsy and what I eat affects it. This was not always the case. I had JME for approximately 9 years before food became a problem (I believe triggered by sudden changes I made to my diet for an unrelated problem). Now for the last 5 years life has been a learning curve of figuring out what I can and can't eat, where I can buy alternative foods (some expensive, some delicious, some gross), and trying new recipes (sometimes pretty much inventing them!). So what happens if I eat something I shouldn't? Do I immediately fall down and convulse wildly? No. (Btw, I never convulse wildly, lol. I have 'jerks' - muscle jerks in my arms, which I remain conscious during, and I have grand mal (or tonic-clonic) seizures for which I do lose consciousness and will fall if I am not already lying down in a safe place (which I usually am because I know it's going to happen) but even for these I am told my body pretty much just gets very stiff and only jerks slightly). When I eat something I shouldn't, my body's response is very hard to describe - it is somewhat like a feeling of pressure in my head combined with a feeling of grogginess. It is somewhat similar to the feeling I feel before jerking (which almost always occurs upon awakening too early; the hallmark of JME). At this point I immediately quit eating whatever I was eating, and if possible I will go lie down til the feeling goes away. The real danger comes if I eat something very bad for me, or if I eat bad things in too large quantities, or if I eat bad foods too frequently, or if eating something bad happens to coincide with another one of my triggers. Then I am likely to jerk, usually starting the next morning and potentially lasting for hours, and if I jerk too much, for too long, have big jerks, or don't get the rest I need, I could have a grand mal seizure. With a grand mal seizure comes the risk of hurting myself or others, feeling like I've been put through a wringer washer physically & emotionally for a day or two, causing my husband stress, and of course the minor inconvenience of losing my drivers license for a year. So why don't I just go on a different medication or a higher dose of my medication, you ask? Well, that would not take care of the problem completely. I have yet to hear of a case where medication completely controls a person's JME. Also medication, particularly brain-altering ones like anti-epileptic drugs (AEDs), always come with side effects, a number of difficult ones that I already live with. Also I have already made a huge sacrifice in my life by switching to the medication that I am on - not being able to get pregnant on this medication - so that I could be on the best medication for controlling my epilepsy so that I could be the best mother possible and hopefully start a family through adoption.
Let's move on to the facts of what I can and can't eat. First of all, what I can't eat. Note that some of these ingredients I need to avoid 100%. Others depend more on the factors I mentioned earlier - the problems occurring not only if I eat something very bad for me, but also if I eat bad things in too large quantities, if I eat bad foods too frequently, or if eating something bad happens to coincide with another one of my triggers. These are things you can't necessarily know, so I need to be the judge of whether I can eat something or not at a certain time. It may be confusing to you sometimes. It is to me, too! I am constantly listening to my body and evaluating and re-evaluating what it's doing, thinking about what I ate and what I will eat, plus taking into account all my other triggers. It can be very wearying as sometimes it feels like things are not consistent, but I am very thankful to have discovered natural ways to help control my epilepsy.
What I Can't Eat
- Soy - Soy is a huge one for me. And you would be surprised what soy is all in. You pretty much have to become a label-reader for this one. I avoid all types of soy - soybeans (edamame), soybean oil, etc. Soy can be hidden under other names, such as hydrolyzed soy protein, textured vegetable protein, soy isolate, monosodium glutamate (MSG), etc. I am wary of any product with the ingredient vegetable oil, and sometimes contact the manufacturer to find out what that is specifically (for example, Tostitos tortilla chips lists vegetable oil on their bags, and when contacted they kindly told me it was 50/50 sunflower oil and corn oil). The majority of chocolate out there has soy lecithin in it. I have found this to not be the hugest of problems, perhaps because of the small quantity, but I still try not to eat it too frequently (I have found a few soy-free chocolate bars out there). Common foods that you will find soy in are salad dressings including Miracle Whip and all mayonnaise's except for Hellmann's (even Miracle Whip's Olive Oil mayo has soybean oil) - you can buy salad dressings from the refrigerated section (like Renee's brand) that don't have soybean oil, but some have other bad ingredients; obviously soy sauce; a lot of prepackaged/processed foods like canned soups; some frozen chicken breasts; margarine; I cannot think of everything that has soy in it right now but there is a LOT! A number of flavours of potato chips have MSG.
- Grains - This is another big one for me. I avoid all whole wheat, oats, barley, and rye. I used to be able to eat white flour occasionally in small quantities but it started to become a problem so now I don't eat it either (I have occasionally put a tiny bit of white flour in as a thickener for sauces but prefer not to). There are some gluten-free flours that I can eat but not all of them. I haven't learned yet exactly which are safe or not (there are so many available with this gluten-free craze going on right now!) but as of now I also avoid oats, bran, quinoa, millet, and buckwheat until I know for sure. So the obvious places one would find grains are baked goods like bread & buns, hamburger & hotdog buns, cakes & pies, muffins & cupcakes, desserts & cookies, waffles & pancakes, etc. More hidden places are things like canned tomato soup and wieners. Also don't forget the breading on chicken or anything that has breadcrumbs, as well as breakfast cereals, crackers, pasta, and pizza crusts. Of course I am just scratching the surface with this one as well!
- Cow's milk products and Casein - Another big one. If you're wondering what casein is, it's a protein in milk, and it's very concentrated in cheese. I avoid all cow's milk cheeses. I used to occasionally eat small amounts of mozzarella, but have since found it to be troublesome as well. The WORST cow's milk cheese is Parmesan. I really need you to tell me if you have sprinkled a little of this in a salad or mixed it into a casserole or what not. Cheddar is also very, very bad. But I don't eat any cow's milk cheeses - Monterey Jack, Swiss, Feta, Ricotta, Cottage Cheese, Cream Cheese, Havarti, Brie, I could go on and on and let me assure you, I miss them ALL! I am a HUGE cheese lover!!! I used to be able to eat other cow's milk products, just not cheeses, without too much difficulty, but things have gotten worse, so now I try to avoid them all for the most part. This includes milk, butter, sour cream, yogurt, cream, ice-cream, etc. I am not as strict (yet) with these items as I am the cheeses but I do exercise caution with them.
- Beans - Just like the soybeans, I can't eat any beans. So think of things like refried beans, bean dip, chili, etc.
- Nuts - I can't eat any nuts, the worst ones being peanuts, cashew, pistachios, and almonds. Well, actually I have heard that almonds are not quite as bad, but I prefer not to test this out. So no peanut butter for me, nor treats made with nuts in them. (Please note: I am not allergic to these foods. So, unlike if a child had a nut allergy, you can have nuts in the house, etc, and I will be fine. I just can't consume them.)
- Seeds - Seeds such as sunflower seeds and pumpkin seeds. I don't know if this includes sesame seeds or not. Also includes lentils, although I've never eaten them in my life anyway. This is not a super critical one; I should just not consume seeds in large quantities.
- Aspartame - I don't have a hard time with this one at ALL, because I have always found the artificial sweetener aspartame DISGUSTING, lol! Aspartame is, of course, found in diet drinks. It's often called NutraSweet or Equal. It is in most foods labeled "sugar free". I have no idea what I would do if I became a diabetic, lol.
- Meats - I don't avoid meats, but some of them should not be eaten in large quantities or too frequently. These include turkey, rabbit (I don't ever plan on eating one anyway, lol), and grain-fed meats. As of this point in my life I don't check to see what my meat ate when it was last alive, lol.
- Mayonnaise & Salad Dressings - For mayonnaise I eat Hellmann's mayo. Both the regular one and the olive oil one do not contain any soybean oil. For salad dressings I either buy a refrigerated brand such as Renee's (first checking the ingredients to make sure it doesn't have Parmesan or anything else bad) or I make my own. It's actually really simple to whip up a vinaigrette, especially when you have seasoning already on hand (Epicure makes a really yummy Italian one).
- Rice Pasta & Gluten-free Baked Goods - I have gotten totally used to pasta made with rice, and for that matter so has my husband! Our grocery stores all sell a very wide variety of different pasta shapes (still missing manicotti, but hey). I also buy Udi's gluten-free hot dog buns and hamburger buns (they cost an arm and a leg but thankfully not a brain, haha). I have not yet had success worth talking about it when it comes to baking with gluten-free flours, and I can't eat all of them anyway. Just because it says "gluten-free" does NOT mean it is safe for me! I have also bought some gluten-free mixes (cake, waffles, muffins, etc) and most are wonderful, especially Betty Crocker's GF cake mixes; I swap out the butter for canola oil and it works just fine. On occasion I treat myself (it's expensive) to a small loaf of gluten-free bread (I can't remember the brand; it's from Safeway) - it needs to be toasted to taste good, but at least I can have some little sandwiches!! I can eat coconut, so if I go to Tim Horton's with a friend (where I can pretty much not eat a single thing) I can get those DELICIOUS coconut macaroons they have on hand there. I also buy Udi's gluten-free pizza crusts on rare ($) occasions. Breadcrumbs for chicken I make using a combo of Cornflakes crumbs and tortilla chips crumbs plus seasonings and it is delish.
- Meats - Wieners I buy Schneiders Naturals brand because it doesn't contain any wheat. For frozen chicken breasts we buy Dunn-Rite because it is soy-free and gluten-free. There can usually be hamburger patties found that don't contain wheat or soy; just read the ingredients label. I've never been a huge meat-eater and most meats are okay; it's the additions that can be a problem.
- Goat Milk & Goat Milk Cheeses - Goats have become my friends, lol! Seriously, though, I am SO thankful there are goat dairies around here and that our local grocery stores provide these products. I can get goat milk at Sobeys and Safeway; goat mozzarella at Sobeys and Superstore; goat cheddar at Sobeys (and if not in stock there, at De Luca's in the city). Of course every store carries soft goat cheese, which I mix together with goat milk to create "sour cream". It is a very rich version of sour cream and I don't use it in big quantities. In place of Parmesan cheese, we buy Myzithra, which is a sheep's milk cheese. We have to go to the city to either De Luca's or Fenton's in the Fork's for that one, but that's okay because we buy a large amount, grate it all and freeze it. Goat feta is another one that's easy to find. I even found goat Gouda (at De Luca's in the city) which I have bought once; it was so good and I used it in place of Fontina cheese in a recipe. I would LOVE to be able to find butter, yogurt, sour cream, ice-cream, cream cheese, and cream made from goat's milk but this hasn't happened yet. I learned how to make Ricotta using just 3 ingredients - goat milk, salt, and lemon juice - and it turns out great every time I make it. Recently my husband bought me coconut "ice-cream" (Luna & Larry's Organic Coconut Bliss) and it was AMAZING!! It is soy-free, dairy-free, and gluten-free (I can't eat all their products, though, as some contain nuts).
- Beans, Nuts, Seeds - I haven't found any replacements for these yet, and I do miss them. They are such a great source of fibre and my new motto has pretty much become "an avocado a day keeps the doctor away" when it comes to getting enough fibre! Seeds are not the worst thing, though, and I have discovered I can make a homemade pesto using pumpkin seeds and Myzithra cheese, instead of pine nuts and Parmesan (which is what most recipes call for; store-bought ones usually have soybean oil).
- Other things - I can eat - and I like - the majority of fruits and vegetables. So I consume a lot of them. I also eat a lot of potatoes, eggs, and I can also eat rice. "Plain" food is really the best route for me as it is the additional ingredients that are usually the problem. For example, yes I can eat potatoes, but if I go to a potluck and there is scalloped potatoes (because we know those have to be at every potluck, right?) there could very likely be canned cream of soups in there, or sour cream or butter, or cheese. So something like a baked potato is a much better bet for me. Some people put soya sauce in their rice, or fry their eggs in margarine. So I always have to ask what is in food. This is something I just have to get used to, and it is very difficult for me. Going out to eat is a struggle beyond words. I've learned what dishes I can eat at which restaurants, and I don't get much variety! But that's okay; I am SO thankful that God has provided me food that I can eat!
- Chicken Nachos (should be soy-free, GF chicken; the tortilla chips should also be soy-free)
- Penne with Goat Cheese and Spinach (should be rice penne)
- Basil Pasta Shells (should be rice shells; dish should be greased with olive oil)
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