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Do Any Of You Eat A Gluten-free Diet?


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#21 angellus

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Posted 03 November 2008 - 01:28 PM

I dont eat a gluten free, however i do eat a low sugar diet, lower carbs..

I tried atkins i think in 1999 or 2000 and went too extreme.. i had extreme heaaches and irratability.. Im sure i was eating too little carbs... I then found the sugar busters diet.. I ate about 7 times a day small meals and without much excercise.. i lost 50 lbs in about 3.5 months. After i lost the weight i started working out and put on muscle weight. I continue to eat as a whole this way and have kept the weight off. I dont do cardio just light weights. Some of you probably saw me at the conference , I think i was about 220 there, At the drs today 212. But at my highest 260. I carried it.. sort of..lol. Being tall helped, but i was just a mess then. Of course.. now im thinner.. but still a sleepy boy..

#22 dogdreams

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Posted 03 November 2008 - 10:23 PM

It's nice to see so many people finding this helps them. My diet is simply "no carb". Of course I still get carbs from veggies and potatoes, but it's pretty strict.

My brother has Celiac and I'm diagnosed as "gluten intolerant." When I described what happens to me when I eat gluten, he said "welcome to my world!" So maybe mine is closer to Celiac simply because of the genetic relation to actual Celiacs? I dunno. I never get clear answers when it comes to my health. It's usually just up to me to figure it out and then find a clever way to tell people so they don't ask too many questions. It's just too embarrassing. I wish I was "normal", whatever that means.



#23 angellus

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Posted 04 November 2008 - 02:46 PM

QUOTE (dogdreams @ Nov 3 2008, 10:23 PM) <{POST_SNAPBACK}>
It's nice to see so many people finding this helps them. My diet is simply "no carb". Of course I still get carbs from veggies and potatoes, but it's pretty strict.

My brother has Celiac and I'm diagnosed as "gluten intolerant." When I described what happens to me when I eat gluten, he said "welcome to my world!" So maybe mine is closer to Celiac simply because of the genetic relation to actual Celiacs? I dunno. I never get clear answers when it comes to my health. It's usually just up to me to figure it out and then find a clever way to tell people so they don't ask too many questions. It's just too embarrassing. I wish I was "normal", whatever that means.

no carb except potatos?... thats a pretty good source of carbs..

#24 dogdreams

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Posted 05 November 2008 - 09:26 PM

QUOTE (angellus @ Nov 4 2008, 11:46 AM) <{POST_SNAPBACK}>
no carb except potatos?... thats a pretty good source of carbs..


I'm not really trying to avoid the carbohydrates in grains and processed sugars, per se. I am sensitive to them for some other reason. However, it's an easy enough rule to follow because it includes much of what triggers my N. I don't know exactly what chemical compounds in grains and fruits sets my N & C off, so maybe I just use "no carb" to make it simpler to explain to other people.

i can't eat grains because they mostly come from grasses (except corn, which can eat), and I'm allergic to grass (itchy skin) and grass pollen (omg June is the worst hay fever ever!) but potatoes are in the nightshade family and I have no problem with anything in that family. The Low-Carb Diet avoids most of my triggers, so I'm grateful that it became so popular because it's given me a lot of alternatives to "necessities" like chocolate and ice cream. smile.gif As long as it doesn't have aspartame, corn syrup, or sucrose, I'm good.

I did find an interesting blurb about a naturally-occuring chemicals called profilins that are found in grass pollen and some fruits. Turns out every fruit I'm sensitive to is on the grass pollen & birch tree pollen list for profilins. So now I'm thinking...grass sucks! lol wink.gif

It's been a long struggle to figure out just what exactly triggers my N/C so that I can be more systematic in avoiding potential triggers. I don't think it's perfect yet but I feel I'm getting closer to narrowing it down. doesn't mean I'm even close to being right though. I have no way to test it scientifically. But I just can't help but to keep searching for the answers...

#25 angellus

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Posted 06 November 2008 - 02:19 PM

QUOTE (dogdreams @ Nov 5 2008, 09:26 PM) <{POST_SNAPBACK}>
I'm not really trying to avoid the carbohydrates in grains and processed sugars, per se. I am sensitive to them for some other reason. However, it's an easy enough rule to follow because it includes much of what triggers my N. I don't know exactly what chemical compounds in grains and fruits sets my N & C off, so maybe I just use "no carb" to make it simpler to explain to other people.

i can't eat grains because they mostly come from grasses (except corn, which can eat), and I'm allergic to grass (itchy skin) and grass pollen (omg June is the worst hay fever ever!) but potatoes are in the nightshade family and I have no problem with anything in that family. The Low-Carb Diet avoids most of my triggers, so I'm grateful that it became so popular because it's given me a lot of alternatives to "necessities" like chocolate and ice cream. smile.gif As long as it doesn't have aspartame, corn syrup, or sucrose, I'm good.

I did find an interesting blurb about a naturally-occuring chemicals called profilins that are found in grass pollen and some fruits. Turns out every fruit I'm sensitive to is on the grass pollen & birch tree pollen list for profilins. So now I'm thinking...grass sucks! lol wink.gif

It's been a long struggle to figure out just what exactly triggers my N/C so that I can be more systematic in avoiding potential triggers. I don't think it's perfect yet but I feel I'm getting closer to narrowing it down. doesn't mean I'm even close to being right though. I have no way to test it scientifically. But I just can't help but to keep searching for the answers...


I hear you about looking for triggers.. I use to to think diet coke made me sleepy, then carbs. But i eliminated or went to whole grain and the lower glycemic carbs.. and I still had attacks. I do know that stress and anxiety make it worse. Guess that's why i am alone..lol

#26 dogdreams

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Posted 07 November 2008 - 10:49 AM

QUOTE (angellus @ Nov 6 2008, 11:19 AM) <{POST_SNAPBACK}>
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!

#27 chimbakka

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Posted 08 November 2008 - 07:45 PM

QUOTE (Kimberly @ Aug 20 2008, 05:58 AM) <{POST_SNAPBACK}>
This is likely going to be a long post, so hang in there.

I've worked for a health insurance company for the last 6+ years, so I am always looking for "medical evidence" and reading clinical studies to learn more about WHY I have Narcolepsy.

I understand that I have it because there is a lack of hypocretin/orexin in my brain and because I have a genetic predisposition by possessing the HLA-DQB1*0602 gene.

I understand I get my genes from my parents. But WHY am I lacking hypocretin/orexin?

Did something cross the blood-brain barrier to damage my brain? What was it? How did it do that? Was it a virus? Was it an "intruder" that caused an autoimmune reaction? Did it damage the hypocretin/orexin transmitters so less was produced, or did it damage the receptors so less was received? Is my brain still being damaged?

Obviously I will be donating my brain to Stanford so they can continue to look into these things.. but.. I am impatient and want to know NOW how this happened, so I can understand how to prevent future damage to my brain and the worsening or development of future neurological conditions.

This became even more important to me when I came across an article this weekend that indicated a link between Narcolepsy and Parkinson's Disease. Let's just say I am having a hard enough time with Narcolepsy -- I don't want to get Parkinson's. There is no proof in the article that says that people with Narcolepsy develop Parkinson's, so don't let my statement cause fear. But how can we NOT think that it's a possibility, especially since we don't know HOW our brains got damaged in the first place?? http://www.scienceda...70504122134.htm

So.. back to the topic of gluten-free.

Gluten is a protein found in wheat, barley, and rye. It is basically in every bread product, cracker, cookie, roll, pastry, etc.

People who are allergic to Gluten are diagnosed with a condition called Celiac Disease, which is very serious. When they ingest gluten, it actually causes damage to their intestines which reduces their ability to absorb nutrients from their food.

I dont have Celiac Disease, I don't have any gastrointestinal symptoms when I eat gluten.

However, there has been some research done that indicates there is also Gluten sensitivity (rather than allergy), where people don't have gastrointestinal symptoms. They have neurological ones instead, and may not even know about them. A researcher named Marios Hadjivassiliou started looking into this in the mid-1990s, and he believes that neurological conditions like gluten ataxia, neuropathy, seizures/epilepsy, cognitive decline, depression/anxiety/panic, migraines, schizophrenia, ADD, and autism might be tied to Gluten sensitivity. In other words, he thinks that instead of damage to the intestines, people with Gluten sensitivity are suffering damage to their BRAINS.

He also believes that certain autommine conditions like MS, Addison's, Rheumatoid Arthritis, Lupus, etc may also have a Gluten-sensitivity link.

So.. Narcolepsy is a neurological condition that is theorized to have an autoimmune cause, right? So -- is it the consumption of Gluten that caused my brain damage? Am I sensitive to Gluten without even knowing it?

(Years worth of reading on this research can be found at http://jccglutenfree.googlepages.com/ )

Interestingly, people with Celiac Disease often have the genes HLA DQ2 and HLA DQ8. Dr. Hadjivassiliou has found that people who have non-Celiac gluten sensitivity often have HLA DQ1 (same gene that is found in 90% of people that have Narcolepsy with Cataplexy), DQ2, or DQ8.

All of this is leading me to wonder if I eliminated gluten from my diet, would I see an improvement in my symptoms? Or -- could it stop the progression of any further neurological damage?

There was research done at Duke University years ago that says that a low-carbohydrate ketogenic diet helps with the symptoms of Narcolepsy. What's low carb? NO BREAD! So which is it -- low carbohydrates, or the elimination of gluten -- that caused the improvement??

Which leads me to my question. Do any of you eat a gluten-free diet? Has it improved your symptoms? Do you have any more research or articles on this subject for me? It is so restrictive and very difficult to maintain, so I don't want to have to expend tons of energy on special food preparation if I won't get anything out of it.

Thanks for sticking with me!

Kimberly


I worked with a boy with cerebral palsy who had really bad seizures. They put him on a ketogenic diet that keeps him in acidosis and this helped a lot with the seizure activity. I can't tell you exactly what's in it, he is fed by G-J tube so it's a little different.

#28 dogdreams

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Posted 21 November 2008 - 01:37 AM

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!

#29 Heidi L

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Posted 03 December 2008 - 10:05 PM

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.

#30 dogdreams

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Posted 06 December 2008 - 12:00 AM

QUOTE (Heidi L @ Dec 3 2008, 07:05 PM) <{POST_SNAPBACK}>
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! smile.gif ) 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.

#31 dogdreams

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Posted 06 December 2008 - 12:02 AM

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.

#32 jenji

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Posted 06 December 2008 - 12:27 AM

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