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Narcoleptic And Losing Weight?


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#1 AshleyChemE

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Posted 15 June 2011 - 10:38 AM

My boyfriend (now husband) started getting chronic migraines when he was 16. He was also tired all the time and fell asleep while driving (wrecked once). We were so focused on trying to find out what was causing the migraines that we figured he was just tired from being worn down by the pain. He went to dozens of doctors, went on tons of different meds for the headaches, and finally just gave up on medicine and tried going natural (at my urging). The medicines were causing all sorts of side effects like depression, anxiety, and general moodiness. At this point he was 20, ate like a horse and weighed 120 lbs at 6'.

His migraines kept getting more and more frequent and he kept getting more and more tired. He tried drinking a protein shake every morning to gain weight because his GP told him he was dangerously thin. He slept 14 hours a day, took naps, and was still exhausted with bags under his eyes. He missed classes and wouldn't respond to phone calls or text messages because he was always asleep! Last year over his Christmas break we decided to try more doctors. We set up appointments with a migraine specialist, a sleep doctor, an allergist, and his nose doctor. He had surgery to correct a deviated septum but that just helped him breathe a little better. The migraine doctor just tried to put him on another anti-depressant. The allergist put him on some other medicine. The sleep test results came back with a diagnosis: Narcolepsy.

He agreed that he would wait a few months to start the medicine while we tried to come up with alternative treatments for his narcolepsy. I looked on-line for natural treatments for narcolepsy and came across several of these message boards. A lot of people were sharing how they went on the South Beach diet or the Atkins diet and their narcolepsy symptoms almost disappeared! I thought they were on to something and thought maybe it was a blood sugar level thing. One DAY of not eating any simple carbohydrates and my fiance felt so much more awake! That week I came across more posts and articles, even research studies that linked celiac disease (gluten intolerance) to narcolepsy.

The first test for celiac disease is a blood test. There are a lot of false negatives for this blood test though, and they recommend a biopsy of the small intestine if you want to know for sure. My fiance got the blood test done and it came back with a weak positive for celiac disease. He eliminated gluten from his diet that next morning (after eating a huge hamburger with bun and drinking a beer the night before) and the results were amazing. By the end of that first week he could sleep for 7 hours a night and feel rested all day! After a month or so, his headaches started to subside! He still gets migraines, but they are not NEARLY as frequent as before. We are still discovering new things that have gluten in them. You really have to be rigorous about reading every ingredient label, and even then it isn't always called "wheat" or "gluten."

We never would have guessed that an autoimmune response to something he was eating was causing him so much pain. After looking on-line for a week for natural treatments and finding a link, why didn't any of the doctors he visited give him a simple blood test for celiac disease?

I don't want other people to suffer with narcolepsy needlessly. I'm not saying that I think everyone with narcolepsy actually has celiac disease. I do believe that a significant portion of people with narcolepsy, diagnosed or undiagnosed, are suffering from a gluten intolerance. I encourage you to try the gluten free diet. Stick to it for as long as you can to see if there are results. His results showed up in a day, but there are a lot of other people that report months before they show signs of recovery.

After two months of an almost gluten free diet (that stuff creeps up everywhere!) he weighs 143 lbs and climbing! Just FYI, he didn't have any of the other symptoms listed for celiac like intestinal cramping, upset stomach, irritable bowels. If you have been diagnosed with narcolepsy and have lost weight, you're not alone! Please post here if you have celiac's disease, lost weight, and were diagnosed with narcolepsy!

#2 lara

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Posted 18 June 2011 - 11:51 AM

My boyfriend (now husband) started getting chronic migraines when he was 16. He was also tired all the time and fell asleep while driving (wrecked once). We were so focused on trying to find out what was causing the migraines that we figured he was just tired from being worn down by the pain. He went to dozens of doctors, went on tons of different meds for the headaches, and finally just gave up on medicine and tried going natural (at my urging). The medicines were causing all sorts of side effects like depression, anxiety, and general moodiness. At this point he was 20, ate like a horse and weighed 120 lbs at 6'.

His migraines kept getting more and more frequent and he kept getting more and more tired. He tried drinking a protein shake every morning to gain weight because his GP told him he was dangerously thin. He slept 14 hours a day, took naps, and was still exhausted with bags under his eyes. He missed classes and wouldn't respond to phone calls or text messages because he was always asleep! Last year over his Christmas break we decided to try more doctors. We set up appointments with a migraine specialist, a sleep doctor, an allergist, and his nose doctor. He had surgery to correct a deviated septum but that just helped him breathe a little better. The migraine doctor just tried to put him on another anti-depressant. The allergist put him on some other medicine. The sleep test results came back with a diagnosis: Narcolepsy.

He agreed that he would wait a few months to start the medicine while we tried to come up with alternative treatments for his narcolepsy. I looked on-line for natural treatments for narcolepsy and came across several of these message boards. A lot of people were sharing how they went on the South Beach diet or the Atkins diet and their narcolepsy symptoms almost disappeared! I thought they were on to something and thought maybe it was a blood sugar level thing. One DAY of not eating any simple carbohydrates and my fiance felt so much more awake! That week I came across more posts and articles, even research studies that linked celiac disease (gluten intolerance) to narcolepsy.

The first test for celiac disease is a blood test. There are a lot of false negatives for this blood test though, and they recommend a biopsy of the small intestine if you want to know for sure. My fiance got the blood test done and it came back with a weak positive for celiac disease. He eliminated gluten from his diet that next morning (after eating a huge hamburger with bun and drinking a beer the night before) and the results were amazing. By the end of that first week he could sleep for 7 hours a night and feel rested all day! After a month or so, his headaches started to subside! He still gets migraines, but they are not NEARLY as frequent as before. We are still discovering new things that have gluten in them. You really have to be rigorous about reading every ingredient label, and even then it isn't always called "wheat" or "gluten."

We never would have guessed that an autoimmune response to something he was eating was causing him so much pain. After looking on-line for a week for natural treatments and finding a link, why didn't any of the doctors he visited give him a simple blood test for celiac disease?

I don't want other people to suffer with narcolepsy needlessly. I'm not saying that I think everyone with narcolepsy actually has celiac disease. I do believe that a significant portion of people with narcolepsy, diagnosed or undiagnosed, are suffering from a gluten intolerance. I encourage you to try the gluten free diet. Stick to it for as long as you can to see if there are results. His results showed up in a day, but there are a lot of other people that report months before they show signs of recovery.

After two months of an almost gluten free diet (that stuff creeps up everywhere!) he weighs 143 lbs and climbing! Just FYI, he didn't have any of the other symptoms listed for celiac like intestinal cramping, upset stomach, irritable bowels. If you have been diagnosed with narcolepsy and have lost weight, you're not alone! Please post here if you have celiac's disease, lost weight, and were diagnosed with narcolepsy!



A family member of mine has Celiacs and she had the same problem where the doctors didn't just give her a simple blood test. That family member ended up being prescribed a medicine that actually made the pain even worse. I think there could be a possible link between Narcolepsy and Celiacs, although it is a complete mystery what that link would be. I have Narcolepsy and being related to someone with Celiacs gives an individual around a 30% chance of having it. It seems that there are many underlying causes to Narcolepsy and for some, but not all, a change in diet makes the difference. I'm glad the gluten-free diet is working for your husband, and I highly reccomend not letting any gluten "creep up" in his diet. For my family member it was said by our physician that it would be unsafe for them to even consume something with 2PPM of gluten. In regards to the weight loss, both my family member and I have had inexplicable weight loss at times. After being on Nuvigil for 1 month, I dropped 7 pounds from my already low weight. Being on that medication is the only reason I could think of that I might lose weight. My family member has also struggled with keeping weight on, before and after they were diagnosed with Celiacs, and has sometimes gone to an unhealthy weight. I'm not sure if I've helped or completely gone off-topic, but I'm glad to hear that everything is working out now for you and your husband.

#3 micesneeze

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Posted 10 July 2015 - 08:06 PM

Genetic test for narcolepsy and celiac can be ordered through Kashi Clinical Laboritories, Inc. Portland, Oregon.

Narcolepsy and celiac can be compared once the basic info is gathered.

I carry the N gene but not celiac. I have no gluten trouble but my source of severe migraine was banana.The 3rd day of eating one banana/day produced a very severe migraine. No bananas equals no migraines for over 10yrs.

Good Luck!

#4 semontgo87

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Posted 20 July 2015 - 09:51 AM

I have Narcolepsy w/C, and last year tested negative for Celiac. However gluten definitely bothers me. BUT, I never had a noticable problem with it until a bad and sudden fever back in 2013, ever since then I've had Celiac-ish symptoms when I eat wheat. My doctor suggested that I actually have a more general carbohydrate sensitivity (similar to FODMAPS). But wheat is the worst offender.  (I should mention, when it comes to weight, I actually have the opposite problem - I have a hellish time loosing weight, or even just preventing weight gain.)

 

In regards to migrains - I occasionally get optical migrains. For me, it seems to be linked to eating too much aged protein (I'm supposed to be on a low carb diet, so cheddar cheese used to be my standard snack). According to what I've read, that's a typical trigger for normal migrains too. I'm sure if you visited a migrain specialist you already know about that. So I'm not sure that my migrains have any relation to narcolepsy. Thankfully they are a few and far between.