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Emails and replies to my site and blog posts, mostly from Narcoleptics. 

 

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Dear Heidi-

After reading your blog, I decided to try  a gluten free diet. I have never felt better. I have been gluten free for 2 weeks and I feel fantastic. I have stopped my medications and each day I feel better and better. Thank you!
I am a school teacher and I really struggle with fatigue. I am on my feet from 5:00 a.m. until 3:00 p.m. and I rarely  get a chance to sit down. By the end of the day I struggle to stay awake. This week was the first time that I did not feel like taking a nap as soon as the kids left to go home. It's Amazing!

Thank you again
Julie N

 

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Heidi,

I thought I would just write you an e mail to let you know how things have been going.  I feel great.  I had no idea how bad I felt until I started to better!   I have so much energy and I no longer have that overwhelmed, depressed, moody/broody, emotional thing going on anymore!  And I am so happy for that.   I used to go to my husband's huge family gatherings and have to seek out a quiet place to nap/hide to get away from the noise and confusion.  Over the years everyone has learned not to relay on me for any help or to even be worthwhile company at holidays. But on Thanksgiving I was up talking and playing with my little neice and nephew, helping my mother-in-law clean up, watching everyone play games and I was not bothered by any of it at all and that alone is enough for me to never touch gluten again!  I told my mother-in-law that for the past 8 years I have felt like I was either falling asleep, waking up or fighting sleep off and now I don't feel like that all the time.  Even when I do have a nap attack, I seem to recover from it right away, and it doesn't bother me.  Even though my heart's desire is to stop taking the Provigil perhaps taking it along with my diet will be the answer in the end. We shall see!

 

Thanks so much for you support and information...

Laura M

 

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Hi Heidi!
I'm sorry it took me so long to write back - I have been wrapped up in lots of things (mostly learning more about celiac) and your e-mail slipped off the first page of my e-mails - out of sight!

 

Even though I have tried not to eat gluten or dairy for the past 3 1/2 weeks, I think I have accidentally eaten some a couple of times. Yesterday I felt awful. Today I am feeling better. It took about a day for me to "recover."  Hopefully there will be enough evidence in my system, and the fact that I stopped eating gluten will not mess up the test results.

I have been feeling so much better, except for the occasional bad day like yesterday. The good days now way outnumber the bad, but it used to be the other way around. I feel almost like a different person - but kind of like I used to feel when I was younger and would get all kinds of projects done. I did a bunch of things today, including grilling a whole lot of meat so I can have enough protein on hand, easy to eat. That is, if my teenagers don't eat it all first!

I cleaned out a cabinet in the kitchen that held all my plastic containers, a project that I have been planning to do for months. And
Saturday I did a lot of yard work (was finally warm out). It's crazy how much I really feel like doing things now. I just couldn't figure out why I never could get motivated before. Part of it was the fatigue, part was the muscular aches, and part was the depression. I really don't feel depressed anymore. That is so fantastic!

I have learned so much since I talked to you! I have been reading every day. I want to keep feeling good, and to me it is worth it to not eat gluten if I can keep feeling this good.

Thanks for keeping in touch!

Jackie K

 

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Week one of Gluten avoidance

My hubbie and I are both trying to eat gluten free, as time go on more and more of our staples have been replaced.
Just finding it a bit difficult shopping in the Health section of our grocery store with a 13 month old who's tired lol!

So how has this week been? I've noticed that I don't get as tired as I used to. Today I haven't taken any modfinal and even though I was up with the baby last night I feel just a touch tired and don't really have any urge to nap.
On a similar night last week I would be very tired predictably at 9am 11am 2pm and 5-7 pm. I'm going to schedule a blood test with my GP. This is such a massive improvement that there has to be a connection of sorts. One point that I have to include is that I've also cut out aspartame and it's fake sweet freinds. I probably gained 5 pounds, I was too afraid to step on the scale, the first week of that but I'm noticing that I really don't have any huge cravings for sweets now. I eat one candy and that's all I really want.

The biggest problem I'm having is Tim Horton's. Canadian's blood pumps with Timmies coffee, especially in the city I'm from. So naturally I crave a good donut. Oh well, if this get's me back to a more normal state of life I can swear off donuts!

 

Indigo B

 

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Hi Heidi,
I emailed you several months back about gluten intolerance and you were very kind to answer me.  I have another question - if you wouldn't mind answering.

After 2 months on a gluten free diet I did indeed feel better - with arthritic joint pain completely gone in my knees and hips, back as better as well.  Yesterday, I accidently ate a product with wheat starch and within 12 hours I was having significant pain in knees, hips and feet again.  I did not have a HIGH score on the gluten sensitivity test  but was definitely well over the criteria limit... do you think it likely that such a very small amount of gluten would trigger such a strong response?

Dee D

 

 

Hi Dee-


So glad to hear you are feeling better.   The alleviation of my aches and pains has been one of the most surprising and wonderful things that has happened to me.

 

Yes, even a small amount of gluten will give you a full immune response.  The body doesn't really regulate the response, it just senses the trigger and starts producing antibodies as fast as it can until the trigger is gone.  The only time I've been glutened in the last year was at the airport, I asked about all the ingredients so whatever did it was probably just an additive,  but I had a full-on nap attack at the gate waiting for the plane.  I've even read about some super-sensitive people who can't go into bakeries because they inhale flour particles.

It's sort of annoying, would be way better if you could eat a little bread and have a small reaction, but that's not the way it works.   The good thing is, with the small amount of gluten you ingested the immune response will be of limited duration.   If you get back on the wagon the effects should subside much more quickly than the first time you detoxed.

 

Get well soon,

Heidi

 

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I really like this series-

 

Hi Heidi,

Thank you so much for the info....EVERYTHING sounds familiar. I thought I was having a breakdown of some sort. I started my gluten free diet today, and am hopeful that I will have results like you!

 

 

Hi Heidi,

I've been on my gluten free diet for a couple of days now, and I feel better already....I am AMAZED!!!!

 

 

Hi Heidi,

I am sticking to gluten free, except that I cheated last Friday Ė

I had a very long day, and my boyfriend offered to bring home a pizza so wouldn't have to cook - I figured it would be ok to cheat this one time.....HA!!! After inhaling the two very yummy slices, I did a few things around the house and then after about thirty minutes felt that overwhelming fatigue. I decided to just sit on the couch for a minute - next thing you know I was sound asleep - went into sleep paralysis - a very bad episode this time. The rest of the evening was wasted, because of the rapid heartbeats and horrific headache that accompanies me when I wake from these "sleep comas" as I call them. Do you think the gluten works that fast or maybe it was just coincidence?? I certainly won't be cheating again anytime soon!

  

Again, thanks for your help.

Anna  V

 

 

You guys make me smile...

 

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I received this one on my birthday.   Best gift ever.

 

Heidi,

Just wanted to let you know that the gluten free diet has put my Narcolepsy in complete remission!   I have a new life! I get up around 6:30 stay awake all day with tons of energy. My Naturopath also is treating for anemia and low Vitamin D levels, but if I eat any gluten what so ever, the nightmares, sleep paralysis and cataplexy return. I owe my deepest gratitude to your hypothesis; you hit it on the head.  Best of luck to you, let me know if I can help in any way.

 

Ann S

 

 

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I received this one on January 20th...

 

I just wanted to thank you for putting all your info out there.  I have been experiencing narcolepsy with cataplexy symptoms for about a year and a half and the first couple of doctors wrote it off as panic attacks.  I finally got into a doctor that referred me to a neurologist and she sent me for sleep testing.  I have sleep apnea so they couldnít do the nap test.  I donít go for a follow up with the neurologist until the end of February to see how the CPAP is working.  Iím hardly using the CPAP because I am having a hard time adjusting to it.  Anyhow, I decided to go gluten free on the 1st of the year and I feel crazy better.  I am no longer falling asleep while Iím driving, I can be home after work without passing out as soon as I sit down, the sleep paralysis is gone and I no longer get the head bobbing episodes or the extreme shakiness when I find something amusing or Iím excited.  Getting rid of the shakiness and the being able to drive home from work without getting sleepy has been miraculous.  I feel like a whole new person. Iíve also just added Methylcobalmine and D3 into my vitamin regimen.  Should I still get tested for Celiac? Anyhow, I just wanted to say thanks soooooo much.

 

Heather S

 

Crazy better.  Ha.  Happy New Year indeed!

 

 
 

 

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This is not a figment of my imagination.
A number of people have contacted me who figured out basically the same thing on their own.
I have personally received a couple dozen more testimonials like this in response to this site.
Including a few multi narco families.
And there's now a group over on Facebook called Gluten Free PWN that has over three hundred members... 



 
 

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