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Sudden Spells Of Extreme Sleepiness When Glutened


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#1 raisin

 
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Posted 12 January 2009 - 12:01 AM

These are urgent, the need to sit/lay/lean against something right away with inability to keep eyes open. Many times a day, every day of gluten symptoms. Usually only lasts a few minutes, and comes out of nowhere.

Before going gluten-free, sudden sleepiness spells sometimes preceded a black out/collapse, lasting seconds - minutes. gluten-free or not, I also have significant daytime sleepiness, assumed (by Doctor, but no formal exam) sleep apnea, and an anxiety disorder. On gluten I can have insomnia or hypersomnia.

Is "almost sleeping" spells a normal gluten symptom, or should I keep watch out for something else (like narcolepsy)..?
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#2 rinne

 
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Posted 12 January 2009 - 12:31 AM

Sounds normal to me. :huh: :)

Many years ago, long before anyone ever talked about Celiac, I knew that wheat was kind of a problem for me and one of the ways I knew that was that if I wanted a nap I would make myself toast, guaranteed sleep.

I think I know that kind of sleepiness even, it kind of just pulls you under.
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#3 num1habsfan

 
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Posted 12 January 2009 - 12:34 AM

I think it is normal for Celiacs. Definitely sounds familiar..
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#4 jacqui

 
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Posted 12 January 2009 - 01:39 AM

These are urgent, the need to sit/lay/lean against something right away with inability to keep eyes open. Many times a day, every day of gluten symptoms. Usually only lasts a few minutes, and comes out of nowhere.

Before going gluten-free, sudden sleepiness spells sometimes preceded a black out/collapse, lasting seconds - minutes. gluten-free or not, I also have significant daytime sleepiness, assumed (by my doc, no formal exam) sleep apnea, and an anxiety disorder. On gluten I can have insomnia or hypersomnia.

Is "almost sleeping" spells a normal gluten symptom, or should I keep watch out for something else (like narcolepsy)..?


I slept for 5+ months for 20+ hours a day! My husband would wake me for meals and I would fall asleep while eating. I cut back on gluten because I joined Weight Watchers and carbs count as a lot of points. I did not know I had celiac until 4 months later. So when I cut back/very close to elimination of gluten I slowly stayed up more. Eventually my sleeping went to 4 hrs a day to 3 to 2...Now I may or may not nap but I am tired all the time.

The first time I was glutened I was in fetal position for 4 days and slept them away too. Last time I was glutened I do not know if it helped but I evacuated my system and all I noticed this time was my balance was worse then normal.
So I don't know if it depends on what gluten (wheat, barley, oats or rye) you get glutened with or the amount that may effect different symptoms. Does that make sense??

Take care, Jacqui
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Endometriosis
Hashimoto's auto immune disease
Diverticulosis
Celiac disease April 2006 - neuro symptoms I am assuming from celiac disease
HLA DQ 2 (celiac disease) and HLA DQ 6 (GS) either way my parents made sure I had something!
Insomnia
Hyperflexibility

Daughter 6 y/o (5 at diagnosis) celiac disease via labs (all >100) and flattened biopsy. NO symptoms!!

Daughter 8 y/o with BM ="C" since birth and breast fed, osteopenia, SEVERE eczema up to 5 y/o, now on and off (-) via labs and biopsy. HLA DQ 2 and HLA DQ 8! and possibly ADHD.

Son 3 y/o also HLADQ2 AND DQ 8! Negative panel
Husband MEXICAN and he has DQ 8! His family refuses all and anything with celiac disease, same with his PCP!

"What doesn't kill us makes us stronger..." Right? I think that's the saying.


#5 missy'smom

 
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Posted 12 January 2009 - 05:48 AM

What you described is very concerning. Have you ruled out hypoglycemia? I had extreme fatigue with celiac disease that got better over 2 years gluten-free. However I also have been a fainter and low energy my whole life and with recent confirmation of blood sugar issues, I now suspect that my fainting problems have been due to low blood sugar. Knock on wood, I haven't fainted since I started monitoring and managing my blood sugar. What you described isn't exactly what I feel but is similar enough on some points for me to mention this. Now when I feel that way or "just tired" sometimes, I test and low and behold my BG is low.

Insist on some testing(for whatever) if you think you need it. It certainly doesn't hurt. I was dsmissed several times over the years when I brought up the possibility of blood sugar issues until I finally found a new Doc. and insisted on testing, even though I didn't fit the profile. He was suprized but I wasn't. :(
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Son: ADHD '06,
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#6 jacqui

 
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Posted 12 January 2009 - 12:16 PM

What you described is very concerning. Have you ruled out hypoglycemia? I had extreme fatigue with celiac disease that got better over 2 years gluten-free. However I also have been a fainter and low energy my whole life and with recent confirmation of blood sugar issues, I now suspect that my fainting problems have been due to low blood sugar. Knock on wood, I haven't fainted since I started monitoring and managing my blood sugar. What you described isn't exactly what I feel but is similar enough on some points for me to mention this. Now when I feel that way or "just tired" sometimes, I test and low and behold my BG is low.

Insist on some testing(for whatever) if you think you need it. It certainly doesn't hurt. I was dsmissed several times over the years when I brought up the possibility of blood sugar issues until I finally found a new Doc. and insisted on testing, even though I didn't fit the profile. He was suprized but I wasn't. :(


I agree with you. My blood sugar is low but my doc's dismiss everything. I get very shakey and irritable when BG is low.

Thanks though....
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IBS 1994
Endometriosis
Hashimoto's auto immune disease
Diverticulosis
Celiac disease April 2006 - neuro symptoms I am assuming from celiac disease
HLA DQ 2 (celiac disease) and HLA DQ 6 (GS) either way my parents made sure I had something!
Insomnia
Hyperflexibility

Daughter 6 y/o (5 at diagnosis) celiac disease via labs (all >100) and flattened biopsy. NO symptoms!!

Daughter 8 y/o with BM ="C" since birth and breast fed, osteopenia, SEVERE eczema up to 5 y/o, now on and off (-) via labs and biopsy. HLA DQ 2 and HLA DQ 8! and possibly ADHD.

Son 3 y/o also HLADQ2 AND DQ 8! Negative panel
Husband MEXICAN and he has DQ 8! His family refuses all and anything with celiac disease, same with his PCP!

"What doesn't kill us makes us stronger..." Right? I think that's the saying.


#7 raisin

 
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Posted 12 January 2009 - 01:19 PM

Like many others here, I was hypoglycemic pre-gluten-free.. but like as you said, it isn't the same sensation. It also took me a long time to get a doctor to listen. :( My blacking out pre-gluten-free was also not caused by hypoglycemia. They assumed I must have low blood pressure, but I was always within the normal range, so it was never proven as the cause, either.
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#8 chatycady

 
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Posted 13 January 2009 - 06:46 PM

Extreme fatigue and sleepiness can be caused by low blood pressure. My doctor called it "dumping". Food passes too quickly through the small intestine, which in turns causes the blood pressure to drop. A change in 10 points in pressure can cause symptoms. So if you are normally 110/70 and drop to 105/60 you may have symtoms.

I would get faint, have black outs and sometimes get really sick to my stomach. My pressure at one time was 75/40!!! I'm normally 95/60. (Another indicator of celiac disease is chronic low blood pressure.)

It also is tied to hypoglycemia.

The gluten damaged the villi and therefore the ville don't produce the enzymes needed to split the more complex food molecules. That is why so many have food intolerances. These food are not digested properly and pass into the blood undigested - very bad for the immune system.

But there is a cure. Check out the SCDiet on the leaky gut food intolerance forum. Heal the villi and this too shall pass! :D
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#9 April in KC

 
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Posted 15 January 2009 - 03:01 PM

The first year I was gluten free, "sleep attacks" or "narc attacks" (as a friend calls them) were a VERY common experience for me - always after eating, so the suspected cause was accidental glutening.

Typically, I would start to feel sleepy 15 minutes to 1/2 an hour after eating. It would come on very suddenly. I'd have about 10 minutes where I could fight it, get off the road, put the kids someplace safe or whatever. But then I would HAVE to sleep. Sometimes I'd sleep for 45 minutes, sometimes for as much as 3 hours before I could really rouse myself and feel "right" again. It would also be accompanied by some room-spinning feelings, clumsiness, and getting tongue-tied.

Either I'm less sensitive now, or I'm better at avoiding gluten, but I don't have the spells nearly as frequently now. I still occasionally fight fatigue after eating, but it's usually more subtle than what I've described above.

I have sometimes wondered if the sleep spells were related to some type of antibody response from inside the body - that might explain why the attacks have been less severe as my antibody levels have fallen over time.
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#10 April in KC

 
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Posted 15 January 2009 - 03:33 PM

Hypoglycemia and hypotension are worth checking out for the original poster...but I don't think they're the cause of my similar incidents.

I do have occasional bouts of hypoglycemia, but the sensation is not quite the same for me. When I'm hypo, I feel lightheaded, shaky and very weird - but the glutening narc attacks are more like someone shot me with a tranquilizer dart. I really just want to sleep - and if I didn't have any responsibilities, it would actually be kind of pleasant. For me, it's more similar to being drunk or drugged - especially because of the accompanying coordination issues.

The sleep attacks were driving me nuts last year. I checked my blood sugar right as they were coming on, probably 4 different times. My husband would walk in and see me sitting on the floor, looking foggy, sticking myself & getting the meter ready, and he'd be like, "oh, no - not again." But the blood sugar was always between 95 and 125 - so not hypo. (When I feel hypo, I'm usually running between 55 and 80 and very conscious of wanting to eat.) It could be related to some type of insulin response, but I wouldn't know because blood sugar monitors don't really tell you how much insulin you're releasing, just what your blood sugars are.

I haven't checked blood pressure, because I don't have a cuff at home. I do get orthostatic hypotension sometimes, where you stand up and black out. But, again, it's a different sensation than the sleep attack.

I do have some risk factors for narcolepsy - like automatic behavior when I'm tired. For example, I was tired and drove to a house I hadn't lived in in 10 years one time - that's kind of a narc thing. Also I get sleep paralysis, another thing that happens with some narcoleptics. So maybe it's some type of narcolepsy + gluten sensitivity that only affects some of us?
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#11 marciab

 
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Posted 15 January 2009 - 05:10 PM

Hypoglycemia and hypotension are worth checking out for the original poster...but I don't think they're the cause of my similar incidents.

I do have occasional bouts of hypoglycemia, but the sensation is not quite the same for me. When I'm hypo, I feel lightheaded, shaky and very weird - but the glutening narc attacks are more like someone shot me with a tranquilizer dart. I really just want to sleep - and if I didn't have any responsibilities, it would actually be kind of pleasant. For me, it's more similar to being drunk or drugged - especially because of the accompanying coordination issues.

The sleep attacks were driving me nuts last year. I checked my blood sugar right as they were coming on, probably 4 different times. My husband would walk in and see me sitting on the floor, looking foggy, sticking myself & getting the meter ready, and he'd be like, "oh, no - not again." But the blood sugar was always between 95 and 125 - so not hypo. (When I feel hypo, I'm usually running between 55 and 80 and very conscious of wanting to eat.) It could be related to some type of insulin response, but I wouldn't know because blood sugar monitors don't really tell you how much insulin you're releasing, just what your blood sugars are.

I haven't checked blood pressure, because I don't have a cuff at home. I do get orthostatic hypotension sometimes, where you stand up and black out. But, again, it's a different sensation than the sleep attack.

I do have some risk factors for narcolepsy - like automatic behavior when I'm tired. For example, I was tired and drove to a house I hadn't lived in in 10 years one time - that's kind of a narc thing. Also I get sleep paralysis, another thing that happens with some narcoleptics. So maybe it's some type of narcolepsy + gluten sensitivity that only affects some of us?


I could've written this .. :) Narc episodes are very different from hypoglycemic. I used to try to sleep standing up. I think the only think keeping me awake was my nocturnal myoclonus (jerking when I'd go into REM).

I'm working on my OI (orthostatic intolerance) now too. Sorry to get off topic, but have you tried salt loading ? It helps quite a few ... I don't pass out, I just get fuzzy headed and weak after 20 minutes of light activity like housework. Then I have to lay down or sit until the feeling is gone ...
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Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)
August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...
July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)
Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)
September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

#12 georgie

 
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Posted 15 January 2009 - 10:15 PM

The first year I was gluten free, "sleep attacks" or "narc attacks" (as a friend calls them) were a VERY common experience for me - always after eating, so the suspected cause was accidental glutening.

This happened to me today. Even after two years you still do stupid things re Glutenings. I had a chiro appt and they do a massage first and forgot to ask. My guess its the cream.... Recall having this happen before and they checked cream and it was Vit E ??? Now I am trying to think what the final result re that was..... Anyway - today I could barely stay awake at the wheel coming home - and it DEF was NOT something I had eaten.
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#13 April in KC

 
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Posted 15 January 2009 - 11:58 PM

My guess its the cream.... Recall having this happen before and they checked cream and it was Vit E ???


Ding-ding-ding! Vitamin E was probably WHEAT germ oil.
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#14 April in KC

 
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Posted 16 January 2009 - 12:02 AM

Marcia, I haven't tried salt loading, but I'll read up on OI and salt loading to see what it's about. My orthostatic hypotension is really minor...it happens a lot, but usually just causes me to feel funny and lose vision for a little while. I've noticed that inhaling/exhaling restores eyesight very quickly - the lights always come back on the exhale breath. :)
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#15 jacqui

 
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Posted 17 January 2009 - 04:52 PM

This happened to me today. Even after two years you still do stupid things re Glutenings. I had a chiro appt and they do a massage first and forgot to ask. My guess its the cream.... Recall having this happen before and they checked cream and it was Vit E ??? Now I am trying to think what the final result re that was..... Anyway - today I could barely stay awake at the wheel coming home - and it DEF was NOT something I had eaten.



It may be the massage hitting a certain zone. Before I was diagnosed with celiac I saw an acupuncturist and after his treatment I would be totally wiped. I would fall asleep in car (my husband drove) and then go out cold for a few hours.
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IBS 1994
Endometriosis
Hashimoto's auto immune disease
Diverticulosis
Celiac disease April 2006 - neuro symptoms I am assuming from celiac disease
HLA DQ 2 (celiac disease) and HLA DQ 6 (GS) either way my parents made sure I had something!
Insomnia
Hyperflexibility

Daughter 6 y/o (5 at diagnosis) celiac disease via labs (all >100) and flattened biopsy. NO symptoms!!

Daughter 8 y/o with BM ="C" since birth and breast fed, osteopenia, SEVERE eczema up to 5 y/o, now on and off (-) via labs and biopsy. HLA DQ 2 and HLA DQ 8! and possibly ADHD.

Son 3 y/o also HLADQ2 AND DQ 8! Negative panel
Husband MEXICAN and he has DQ 8! His family refuses all and anything with celiac disease, same with his PCP!

"What doesn't kill us makes us stronger..." Right? I think that's the saying.





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