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kimberlyaz

Do Any Of You Eat A Gluten-free Diet?

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I use to to think diet coke made me sleepy, then carbs.

For me it's the aspartame in the diet coke that does me in. I had a coworker years ago that turned me on to some fancy new gum (Orbitz or something) which had aspartame in it. Man I loved that gum and chewed it non-stop for a week. by the end I was a zombie. I'd have to sleep all the time and when I went to take a nap I'd crash hard, sleeping really deeply and not able to wake up. but when I did manage to, I didn't feel rested at all, like I didn't sleep a wink. It was the worst N I've ever had. Since then I'm deathly afraid of aspartame. It's bad stuff!

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I posted this under a different topic but it didn't pop up under new posts so I'll post it again here.

I've been truly gluten-free for over a month now and I accidentally ate gluten twice--once last week and once on monday. Last week, 6 hours after lunch I got these horrible intestinal cramps. I asked my Celiac brother if that time frame was correct and he said yes. Then Tuesday I was having C in my dreams in the morning and my myoclonus woke me up out of the dream. I was having seizures and C all morning and had to stay home from work. I was dismayed that it could just happen without having eaten anything and that I really didn't have any control over it. But I was wrong! I tracked it down to a seasoning I used on my lunch the day before and, unfortunately, on my breakfast that morning. I got terrible cramps again after breakfast and that made me think...maybe it's gluten! I called the company to make sure the "spices" really had gluten. They confirmed it. I had more myoclonus that night and some spontaneous C the next day, just once at home, but by then I could predict it.

I can now think of so many times when this has happened to me. Like when I was pregnant and would eat a bagel for breakfast and then seize and be paralyzed all night long. It stopped when I was diagnosed with gestational diabetes and had to change my diet. But we thought it was just the pregnancy hormones changing. And that's just one example of this happening to me. It's so amazing that that's all it was. Gluten. I don't even feel as tired when I'm really avoiding it. I have so much more energy and I can think clearly. I still have C when I'm laughing at something funny, or when I'm really nervous, but it doesn't happen 'out of the blue' anymore. It's such a relief!

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Hey Dog Dreams, glad to hear you are feeling better!!

Just want to make a couple general comments here-

If you are narcoleptic and on a ketogenic diet you will not have acute symptoms. Your sleep attacks and mood disorders will subside. But if you are not strictly gluten-free, checking your sauces and other products, you will still be producing antibodies and killing your orexin cells over the long term. That is what happened to me.

There is an contrasting problem for long-time narcoleptics who are following the gluten free diet but not restricting carbs. Orexin cells are glucose sensitive in all people. It sort of acts as a hormone to stimulate you to find food, so once you've eaten, the rising level of blood sugar lowers the production of orexin. (sorry tryptophan, this is the real reason people get tired after eating.) If you're missing a substantial portion of your orexin cells you will have a much more noticable glucose reaction. If you have stress induced cataplexy, you are probably also extra-sensitive to sugar. Keeping blood sugars low improves residual orexin production. Exercise has the same effect. For blood-sugar control I recommend reading "Dr. Bernstein's Diabetes Solution".

Best wishes to you all.

Heidi L.

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Keeping blood sugars low improves residual orexin production.

Yes this works for me. I discovered it almost 7 years ago by accident and I try to avoid sugars unless it's naturally occurring, such as in fruit. I've noticed that fructose takes my body longer to break down and convert to glucose so I don't have as much of a problem with it. Conversely, corn syrup (and "high fructose" corn syrup, which is a misnomer btw) is the opposite. It takes a chemical process to break the sucrose in corn down into its smaller components of glucose and fructose. D-glucose is the most ready-to-use sugar your body can possibly get and it spikes your blood sugar very fast! (I took O-Chem! yay me! :) ) As long as I'm eating natural fructose, sugar alcohols, or sucralose I'm fine. Sometimes I can also tolerate expeller pressed sugar cane, but not recently.

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BTW Provigil is not gluten-free. It can contain wheat flour or something like that. So if you are trying to be 100% gluten free and you are on Provigil, you are not 100% gluten free. It's terrible, I know, but many Celiacs with EDS and/or N have discovered this much to their dismay. You have to talk to your pharmacist when you get a prescription to make sure you get gluten-free meds for anything.

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I've gone on and off the gluten-free plan, the yeast free plan to avoid Candida issues etc. Although the gluten-free seemed to have the best results it was absolutely the most difficult to keep up with b/c it's so finicky, needs absolute commitment for quite a long time to see results and it's a challenge to find foods without gluten and/or hidden gluten ingredients at an affordable price plus, when one is in a perpetual state of exhaustion all one is looking for is something easy to prepare and eat.

Also, one can find out if they're having a Candida issue by a simply at home test: in the morning just as you wake up, before drinking or brushing your teeth, get a glass of water and spit into the cup and wait to see if streaks of white muck begin to form. This means you may have a Candida issues, which can cause havoc on the body as well and most likely exacerbate N along with many immune system disorders. If this happens, it’s best to avoid refined, high fructose sugars if at all possible and you will most likely feel some relief within a few weeks. It kind of sucks that we have to be so regimented to become as well as we can be, but it is what it is and it could always be worse, I suppose.

Just some thoughts. It's difficult to keep up with all the structure we have to adhere to in order to live the best lives that we can, but drawing from so many different suggestion on this board could prove to be quite helpful in the end. OH, and I agree, Aspartame is the devil! VERY, very bad for my N, I dunno about others, but it kicks my butt.

I apologize if this entry is a bit disjointed but my sleep med is kicking in.

So, nite, nite.

Good luck all and be well,

jenji

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