Thursday, December 18, 2008
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the narcoleptic allergic girl
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Narcolepsy and Neuroscience
Gluten and Allergy Links
Wines I Like
Below is a list of wines that I've tried that don't make me sick. I can't guarantee they're gluten free, but they seem fine to me. :)
Hogue Merlot
About This Blog
When I first discovered in 2002 that I could control my neurological symptoms through a strict diet instead of medication, I thought I was the only one. My body became my own personal science experiment. But recently through the Narcolepsy Network and Celiac.com forums I have found others who've discovered the same exact thing. In fact, Dr. Iris Bell did a quick little study on the subject at Stanford back in 1976, so the concept is nothing new. I am frequently asked about my diet, and how I figured out what to avoid, by other people with Narcolepsy. So I've decided to post it all here. That way, if you want to pick my brain, you can just click a button! :)
I am convinced that there are some (perhaps not all) people with Narcolepsy that would greatly benefit from this kind of diet if they tried it. After all, aren't we always striving to live better with less reliance medication? Everyone has a different list of foods, but there is quite a bit of overlap between them. I am a research scientist by profession, and someday I hope to study the links between diet and Narcolepsy further (if I can ever get into grad school.) But, for now, I will simply share my thoughts and personal experimentation with you. Thanks for reading!
About Me
- zia
- I am a gluten-intolerant person with Narcolepsy (PWN). When I eat the tiniest crumb of gluten, my Narcoleptic symptoms get astronomically worse for several days. Plus I get all those unpleasant Celiac GI symptoms. I have excessive daytime sleepiness (EDS), cataplexy (C), hypnogogic hallucinations (HH), and sleep paralysis (SP). I also have non-epileptic seizure-like episodes that are 100% due to gluten ingestion. When I eat a gluten-free diet and avoid the other fruits & grains I'm sensitive to, I can live a relatively normal life without medication. I've been symptomatic since 1994. I was diagnosed in 1998 and I have been med-free since 2002 when I discovered food was my problem. I have not had the best luck with doctors, who like to un-diagnose me and then re-diagnose me with the same thing every time. They don't believe me when I say I can control my Narcolepsy by avoiding certain foods. I now see a Naturopath to manage my symptoms. I have 2 family members with Celiac Disease and 2 more with symptoms. Some day I would like to get my HLA typing done to see if I've passed this on to my son. I think he should know if he has anything to look forward to.
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Finding Food Triggers
The best thing to do when looking for foods that might be triggering your symptoms is to keep a food journal. Write down everything you eat and include the amount and the time you ate it. Then write down every symptom you have and when you have it. You may start to see some correlations, especially if your symptoms get worse right after meals. For instance, when I eat bananas, I'm paralyzed right afterwards for about 2 minutes. When I eat buckwheat or pizza, I have to sleep for 30 minutes right afterwards. So I avoid them.
Some foods have longer delays between eating and symptom onset. Gluten is like this for me. If I eat gluen, I may get sleepy right away, get sick 6 hours later, but the really bad neurological symptoms don't start for 12-15 hours and then they continue for 3 days no matter what I'm eating after that. It took me 6.5 years to finally figure this out but I wasn't keeping a journal that entire time. That's why it's important to keep track of the times you eat and the times you have symptoms. If you have a symptom and were eating definite "ok" foods all day, don't rule out something you ate the day before. It's definitely possible.
When you think you've found something that's triggering an episode, try cutting it out of your diet for a couple of weeks. Then reintroduce it by eating it a couple of times (preferably by itself so you know it's not something else.) If you get a reaction, then you know your observations were correct and you can put that on your "no" list (I keep a spreadsheet of foods I have tested.)
Sometimes you may have to eat certain foods twice to get a reaction. I have this problem with rice, and I still haven't figured out why. But if you get a reaction the first time, don't bother eating it a second time. What's the point?
Some people go on an elimination diet to find food triggers. This is actually how I figured this out the first time. You can find some resources online to help you do this. I don't want to go into it in too much detail since I'm not an expert on the subject and I don't want anything here misconstrued as medical advice. Just entering "elimination diet" into a Google search brings up quite a few great resources.
I haven't met a single Sleep Specialist that has heard of diet triggering Narcolepsy symptoms, and the ones I've talked to scoff at the idea. I think they tend to be some of the most close-minded doctors I've met. But I've met quite a few people with Narcolepsy that swear it's true and are living healthier, more alert lives by simply following a strict diet. Most people have different foods on their list, but there seem to be some foods that people share in common. Grains and processed sugars are among these, as are peanuts and eggs (choline-containing.) I think it's misleading to simply say it's the carbohydrates, though. There are carbohydrates I have no trouble eating, even though I have tried to avoid most others.
So while it's best to figure out your own triggers rather than just following what someone else is doing, there are some common foods you can try first if you'd like. Sticking to plain meats and veggies and going gluten-free is a great way to start. If you want to find a doctor to help you with all of this, find a Naturopath in your area. They know quite a bit about food and environmental effects on chronic diseases, and use common scientific and medical knowlege to find natural ways to alleviate symptoms. They are also very supportive and won't call you crazy for feeling sleepy all the time. :)
Ok, now for some of the golden rules of food testing (I'll update this as I think of them):
1. Never test new food in public! You don't want people hauling you off to the ER because you ate a spaghetti dinner or something. Wait until you're home, no matter how badly you want to eat that double-fudge choclate brownie. Get it to go!
2. Read labels obsessively. Read the labels of every package of food you are considering buying. If you're avoiding something commong, like sugar, you're going to be amazed and appalled at how many foods contain it. If you are avoiding gluten you're going to have to become a Super Sleuth because gluten as a zillion different names and isn't even always declared on the label if it's used as a binding agent for a different ingredient (like spices!) Manufacturers only have to declare wheat, not overly processed sub-components of wheat. You'll not only have to memorize every name it has, but also make lots of phone calls to manufacturers and do lots of internet searches that resemble the following formula: "[name of ingredient or product] gluten".
Foods I Avoid
The following foods trigger my Narcolepsy. "N" denotes nap-inducing "food coma" foods, and "C" means it paralyzes me for a time. "GI" means gastro-intestinal problems.
This is simply a list of foods I avoid. I found them through trial and error while on an elimination diet, and afterwards. I am not recommending everyone else quit these foods. Everyone I've talked to seems to have a slightly different list, and the only way to find out what foods are triggering your symptoms, if any at all, is to do an elimination diet and slowly reintroduce them one at a time. So please don't take this as a guildeline for any sort of "Narcolepsy Diet." This is not medical or scientific advice. It's just what I discovered for myself.
- Apples (N) (possibly just apple skins)
- Pears (N)
- Bananas (C)
- Buckwheat (N)
- Mango (C)
- Rice (N)
- Oats (N)
- Bran (N)
- Barley (N/C)
- Molasses (N)
- Wheat (N/C)
- Rye (N/C)
- Chamomile (C)
- Dandelion (C)
- Shell Fish (C)
- Persimmon (C)
- Concentrated Fish Oil (C)
- Yeast (C)
- Pumpkin Seeds (C)
- Beans (N)
- Sage (C)
- Clam (C)
- Oyster (C)
- Peach (C)
- Nectarine (C)
- Pomegranate (C)
- Grapefruit (GI)
- Grenadine (C)
- Artificial Hormones like birth control (C)
- Cannabis (C)
- "Hickory" or "Smoke" flavoring (N/C)
- MSG (N/C)
- Aspartame (N/C)
- Most sugars (N)
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