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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Celiac Disease And Narcolepsy
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I was doing some research and came across a few researches that link Narcolepsy to Celiac Disease and gluten sensitivity.

Now I find this very interesting because one of my major problem is severe fatigue/sleepiness. It's like I'm never fully awake during the day. I feel like I'm in a sort of (bad) dream state / fog most of the time because of it. I find it painful to keep myself awake and stay alert. And then at night I don't sleep well. I wake up very often with rapid heartbeats and feeling really hot/sweating. I also have episodes of sleep paralysis coupled with auditory hallucinations.

I always thought to be narcoleptic required that you randomly and unwillingly fall asleep at awkward times during the day... and though I struggle to stay awake I don't fall asleep randomly... but now I'm thinking maybe I suffer from this? At work most days I get so tired in the afternoon, my eyes are closing and I have to fight to keep them opened. This happened recently at a party. (I wasn't drunk. :lol: )... I was in the middle of a conversation and suddenly started to fall asleep, my eyes kept closing, it was so painful to stay awake I was getting a huge headache from it. I noticed some people were looking at me because it was so weird.

Anyway, the question is, does anyone here also suffer from Narcolepsy? Did you find that going gluten free helped you? And if so, how long did it take for the sleepiness to go away? (I only found out I was celiac / gluten sensitive recently... I have only been gluten free for a few weeks and imagine it'll take a while before I feel better... but should the fatigue problem have improved by now?)

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Narcolepsy has recently been classified as an auto-immune disease. That would be a connection to a gluten free lifestyle helping the overall health of the patient. (Sounds like we have hit on the same articles.)

A vitamin B12 defiency could explain some of the symptoms and is common among Celiacs. A good explaination of Vitamin B12 defiency can be found searching Pernicious Anemia.

Are you going to talk to a doctor about a sleep study test?

An extended family member was recently diagnosed with 2 sleeping disorders (not narcolepsy) as I was looking into "sleeping beauty" I found a NON-PROVEN genetic association to what appeared to be one of the Celiac genes. As the genetic strings are so long, :rolleyes: abbreviations might be leading me to a wrong conclusion they were discussing the same gene.

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Narcolepsy has recently been classified as an auto-immune disease. That would be a connection to a gluten free lifestyle helping the overall health of the patient. (Sounds like we have hit on the same articles.)

A vitamin B12 defiency could explain some of the symptoms and is common among Celiacs. A good explaination of Vitamin B12 defiency can be found searching Pernicious Anemia.

Are you going to talk to a doctor about a sleep study test?

An extended family member was recently diagnosed with 2 sleeping disorders (not narcolepsy) as I was looking into "sleeping beauty" I found a NON-PROVEN genetic association to what appeared to be one of the Celiac genes. As the genetic strings are so long, :rolleyes: abbreviations might be leading me to a wrong conclusion they were discussing the same gene.

Hey! thanks for the reply. =)

My doctor thought I might have B12 deficiency too, but I passed a blood test a month ago to look for that and everything was fine. I didn't have any vitamin deficiencies actually.

I've been thinking about doing a sleep study test yes... I'm pretty sure I have a sleep disorder of some sort... hmm will have to look into it.

I just googled sleeping beauty syndrome, sounds crazy! Nowadays it seems every health problem I research can be linked to celiac / gluten... who would have thought something silly like that could cause so many disorders! lol

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Wow, I just found this not long after posting about the same thing regarding my daughter getting very tired at school. She's been getting extremely sleepy at school and wasn't sure if there was a relation with Celiac, which she was diagnosed a couple years ago.

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Anemia can cause tiredness. Very common with Celiac. :rolleyes:

After accidental glutenings it can take a week to get back to a normal energy level.

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Anemia can cause tiredness. Very common with Celiac. :rolleyes:

After accidental glutenings it can take a week to get back to a normal energy level.

Yeah I know it's very common in celiacs, and of course whenever I get glutened the fatigue gets worse for a while... but even in my 'normal' gluten free state, I feel extremely tired and spaced out... despite blood tests showing I don't have anemia and have no vitamine deficiencies at all. It's been a lifelong issue too.

Oh well, only a sleep study will tell.

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Hi there, I was also diagnosed with Celiac at age 28 in October 2010 (my most prominent symptom was fatigue with some GI symptoms) and just last week (after a genetic test and also a sleep latency test) was diagnosed with Narcolepsy. For about 2 years, I was suffering from EXTREME fatigue... not just the kind you have in grad school. After the Celiac diagnosis I thought I would get better but was still dragging my feet. For the narcolepsy I started taking 100mg Provigil and by the second day on the meds felt MUCH MUCH better! If I eat something contaminated with gluten, I still feel SLAMMED with fatigue the morning after consuming that food item, but I hope that as I get the narcolepsy under control, that it will improve... it's only been 2 weeks for me.

I should also say that the same immunity genes, known as MHC class II molecules (AKA "HLA type") are the same group for narcolepsy as celiac (in addition to MS and Type I Diabetes). They are HLA-DQ and HLA-DR types. There are lots of different alleles within these types, but many are related. (I've got a PhD in immunology, that's the VERY simplified version of what's going on). It's not uncommon to have more than one autoimmune disease. Celiac is known to be associated with the onset of other autoimmune diseases. Narcolepsy is my 3rd autoimmune disease (I also have Raynaud's). I also come from a family with the gamut of autoimmune diseases from at least 4 generations before me.

If you are still sleepy after being on a strict gluten-free diet, go to a neurologist or sleep specialist and see what you can figure out!

Good luck!

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I was doing some research and came across a few researches that link Narcolepsy to Celiac Disease and gluten sensitivity.

Now I find this very interesting because one of my major problem is severe fatigue/sleepiness. It's like I'm never fully awake during the day. I feel like I'm in a sort of (bad) dream state / fog most of the time because of it. I find it painful to keep myself awake and stay alert. And then at night I don't sleep well. I wake up very often with rapid heartbeats and feeling really hot/sweating. I also have episodes of sleep paralysis coupled with auditory hallucinations.

I always thought to be narcoleptic required that you randomly and unwillingly fall asleep at awkward times during the day... and though I struggle to stay awake I don't fall asleep randomly... but now I'm thinking maybe I suffer from this? At work most days I get so tired in the afternoon, my eyes are closing and I have to fight to keep them opened. This happened recently at a party. (I wasn't drunk. laugh.gif )... I was in the middle of a conversation and suddenly started to fall asleep, my eyes kept closing, it was so painful to stay awake I was getting a huge headache from it. I noticed some people were looking at me because it was so weird.

Anyway, the question is, does anyone here also suffer from Narcolepsy? Did you find that going gluten free helped you? And if so, how long did it take for the sleepiness to go away? (I only found out I was celiac / gluten sensitive recently... I have only been gluten free for a few weeks and imagine it'll take a while before I feel better... but should the fatigue problem have improved by now?)

Hi - my daughter is thought to have narcolepsy which is the result of her celiac disease.  She has a very limited life - as she has to rest a geat deal, and NEVER EVER feels well.  She has been gluten-free for at least 3 years without an accident.  In order to stay awake for a few hours a day she takes 60mg of Vivance, although is perfectly capable of falling asleep right after taking it.  She drinks strong coffee and does her best to stay awake for a few hours a day.  Driving is very difficult for her, as is really everything - and to cope emotionally she takes lexapro (which she cant get off of because no matter how gradually she reduces, she becomes suicidal very quickly), and xanax.  She cannot be tested definitively for narcolepsy until she is off of the Lexapro because of Lexapro's usual interference with stage 3 and Stage 4 sleep, which means it is very likely that part of her chronic extreme fatigue may be the result of long term severe deep sleep deprivation.  Good luck.  There is so much to Celiac Disease and I am glad to see that people are really talking about their deep dark illness, and are no longer being treated like they are making it up and are head cases.  

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Six or seven years back, I use to fall asleep between words while giving a spelling test.  Nutritional supplements overcame that.  I still didn't find out I had celiac.  I didn't experience total freedom from fogginess and fatigue until we cracked that.

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Hi - my daughter is thought to have narcolepsy which is the result of her celiac disease.  She has a very limited life - as she has to rest a geat deal, and NEVER EVER feels well.  She has been gluten-free for at least 3 years without an accident.  In order to stay awake for a few hours a day she takes 60mg of Vivance, although is perfectly capable of falling asleep right after taking it.  She drinks strong coffee and does her best to stay awake for a few hours a day.  Driving is very difficult for her, as is really everything - and to cope emotionally she takes lexapro (which she cant get off of because no matter how gradually she reduces, she becomes suicidal very quickly), and xanax.  She cannot be tested definitively for narcolepsy until she is off of the Lexapro because of Lexapro's usual interference with stage 3 and Stage 4 sleep, which means it is very likely that part of her chronic extreme fatigue may be the result of long term severe deep sleep deprivation.  Good luck.  There is so much to Celiac Disease and I am glad to see that people are really talking about their deep dark illness, and are no longer being treated like they are making it up and are head cases.  

Is she taking the name brand Xanax or a generic? I have PTSD and have taken the generic form of Xanax (alprazolam) for a while, when it is needed, because when my doctor prescribed it he checked and the name brand was not gluten free. It may not be the case for her but many doctors over prescribe the Xanax dosage. It I took the amount prescribed I would be a zombie. With my doctors permission I tweaked the dose to 1/4 of what they orginally prescribed and that does what it needs to do without making me sleepy. For some of us suicidal ideation can be a sign of glutening so do make sure that the meds she is taking are for sure gluten-free by checking with the company that makes them. Don't trust the pharmacy to check and the doctor will not usually know so call the company and ask yourself.

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Hi, before I went gluten-free aboutv 6-7 years back, i found i was having attacks of severe indigestion which were always followed by attacks of nacolepsy, lasting up to 3 days. I'd spent maybe a year [previously ignoring these symptoms and hoping they'd go away. Prior to that  I'd never experienced narcolepsy except as a symptom of illness or reaction to drugs, but rather had always needed relatively little sleep (5-6 hours) and could easily skip sleep altogether when busy ( a blessing since i'm slow). I had , however sufferered from recurring bouts of "arthritis" since my teens (i'n 54 now) and chronic fatigue since around the age of 40, both of which had considerably worsenened at that time.

 

The gluten-free diet seemingly not only cured the indigestion and  narcolepsy, but also the fatigue and "arthritis".  Can't be certain of the other two, but certailny the GI symptoms and narcolepsy were triggerered by gluten, as evidenced by my numerous errors when i first went on the diet .

 

to complicate the piccture, my good health didn't last long. I now get all the same symptoms (yes, including narcolepsy) in response to a widening range of different foods, and  attacks of the narcolepsy out-of-blue, with no clearly identifiable trigger. The fatigue is now ridiculously bad.

 

It's increasing;l looking like gluten is a trigger for this stuff, rather than a cause , in my case. But yep- definite association between gluten and narcolepsy, here.

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I find the genetic link between narcolepsy and celiac very interesting but I also have to wonder if your vitamin deficiency tests were actually accurate. Is it possible that your levels fell within the normal range but were on the low end? Did you get the results from your doctor that you could do some of your own research into the numbers?

I ask because I also had problems that seemed to crop up or get worse after going gluten free, and though I did show deficiencies when I got tested, my levels weren't so far out of the normal range to make me (or the gastroenterologist) think that they'd be causing problems. Supplementing them definitely helped, and very quickly. Though I never fell asleep mid sentence, I did have a few scary days where I couldn't stay awake for more than an hour at a time.

Vitamin D seemed to help with the sleep problems, and vitamin B12 with abdominal pain. But I normally take my supplements with orange juice so perhaps folate was in the mix as well?

Curious about narcolepsy, I read a few scientific studies and see that there are links between it and both metabolism and autoimmune responses.

For the metabolism issues, I wonder if an endocrinologist would have any insight or could determine if you're suffering from any thyroid problems that could have been caused by the gluten allergies since it is one of the organs that gluten tends to damage.

For the immune responses, I wonder if an investigation into additional food allergies wouldn't also be wise. I've read a lot about proteins that are similar enough to those in gluten for the body to confuse them or to have similar reactions, and there are plenty of people posting in this forum about milk and soy allergies in addition to gluten.

And while you're waiting for doctor's appointments, you could do some more research into the carbohydrate connections to see if cutting back on them could help lessen symptoms while you wait for more definitive answers.

I don't know about you, but I'd much rather know the cause of a problem rather than just treat the symptoms, or at least try to find more natural solutions before turning to pharmaceuticals.

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I was doing some research and came across a few researches that link Narcolepsy to Celiac Disease and gluten sensitivity.

Now I find this very interesting because one of my major problem is severe fatigue/sleepiness. It's like I'm never fully awake during the day. I feel like I'm in a sort of (bad) dream state / fog most of the time because of it. I find it painful to keep myself awake and stay alert. And then at night I don't sleep well. I wake up very often with rapid heartbeats and feeling really hot/sweating. I also have episodes of sleep paralysis coupled with auditory hallucinations.

I always thought to be narcoleptic required that you randomly and unwillingly fall asleep at awkward times during the day... and though I struggle to stay awake I don't fall asleep randomly... but now I'm thinking maybe I suffer from this? At work most days I get so tired in the afternoon, my eyes are closing and I have to fight to keep them opened. This happened recently at a party. (I wasn't drunk. laugh.gif )... I was in the middle of a conversation and suddenly started to fall asleep, my eyes kept closing, it was so painful to stay awake I was getting a huge headache from it. I noticed some people were looking at me because it was so weird.

Anyway, the question is, does anyone here also suffer from Narcolepsy? Did you find that going gluten free helped you? And if so, how long did it take for the sleepiness to go away? (I only found out I was celiac / gluten sensitive recently... I have only been gluten free for a few weeks and imagine it'll take a while before I feel better... but should the fatigue problem have improved by now?)

My husband does. I'm bugging him to get tested also. He often has diarrhea, but since he's had it forever, it doesn't seem like a symptom to him. His father had cancer of the small intestine, which could have resulted from celiac disease that wasn't properly diagnosed. He sleeps all day, sometimes - just gets so tired he can't wake up. Our daughter has been diagnosed with celiac disease. I am in the process of getting tested myself. My husband used to take Ritalin for ADD, but is no longer on it. Ritalin can help with narcolepsy also. I'm thinking that this has been part of his problem all along...

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Dotsdots,

I'm very curious to know about your husband and if he got tested and if so what the results were.  I was shocked when I found your post as I not only have narcolepsy with diarrhea everyday, but also my father had cancer of the small intestine which is thought to be due to undiagnosed Celiac.  So I was wondering if you would be kind enough to let me know if your husband found out what was going on or if anything helped him. 

Thanks!

 

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I have narcolepsy and went gluten free 5 years ago before I knew I had narcolepsy. I have the susceptibility gene for celiac which turns out to overlap with the one for narcolepsy. I don't have antibodies to test positive for Celiac, But gluten gave me migraines and I was losing bone density fast despite being on estrogen until I went gluten free. So I don't care if I don't have antibodies yet I'm not suffering to get them to be officially Celiac. I'm staying off gluten now. But it didn't cure my narcolepsy. But they are closely related so it may be that some people manifest more of the celiac have narcolepsy like tendencies or those with narcolepsy have some sensitivity to gluten even if not full blown celiac. Just a thought.

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I was not officially diagnosed with narcolepsy when I was younger and still haven't.  However, even in my junior high and high school years and on through my college years staying awake was always a struggle for me.  maybe the gluten was a factor back in junior high and just didn't realize it.    There were times in church and other times I would just BAM fall asleep without warning.  Frustrating and somewhat embarrassing to say the least.  Now that I have been off gluten for close to a year now, the "feeling" of needing to sleep is becoming less and less.  Still have periods of sudden sleepiness, but not as often any more.

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