Sudden Spells Of Extreme Sleepiness When Glutened

[raisin]

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)..?

[rinne]

Sounds normal to me.

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.

[num1habsfan]

I think it is normal for Celiacs. Definitely sounds familiar..

[jacqui]

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

[missy'smom]

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.

[jacqui]

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....

[raisin]

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.

[chatycady]

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!

[April in KC]

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.

[April in KC]

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?

[marciab]

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 ...

[georgie]

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.

[April in KC]

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.

[April in KC]

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.

[jacqui]

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.

[LM-Ohio]

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.

Were you able to confirm narcolepsy? I have these exact symtpoms! Your description of feeling like you were shot with a tranquilizer dart is exactly what I've been trying to describe. It's not like feeling tired. It's like feeling drugged! And, I've been trying to get it diagnosed for over 15 years with little success. I finally ran accross narolepsy, but I've had to rule out sleep apnea which has taken the last several months.

Did you determine that it was narcolepsy, celiac, both or something else? Thanks!

[moose1988]

well i do not know if this is it, but have you considered narcolepsy? i know it sounds crazy, but i have narcolepsy and the latest research has found that it is an auto-immune disorder and many people with narcolepsy also have celiac, and when they follow the gluten-free diet, the symptoms of narcolepsy aren't as strong. the biggest symptoms of narcolepsy are excessive daytime sleepiness, extremely vivid dreams, hallucinations when falling asleep/waking up, cataplexy (which is loss of muscle tone in response to certain emotions)...

the test for narcolepsy is a sleep study and a sleep latency test.

[LM-Ohio]

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?

Were you able to confirm narcolepsy? I have these exact symtpoms! Your description of feeling like you were shot with a tranquilizer dart is exactly what I've been trying to describe. It's not like feeling tired. It's like feeling drugged! And, I've been trying to get it diagnosed for over 15 years with little success. I finally ran accross narolepsy, but I've had to rule out sleep apnea which has taken the last several months.

Did you determine that it was narcolepsy, celiac, both or something else? Thanks!

[bigfootme]

Sleepiness has plagued me all of my life but the same as everything else, I could never get a diagnosis. My first memory of it was when the school bus driver contacted my mother because he would have to shake me awaken me to get me off of the bus in the mornings. Looking back now, I realize that it was probably due to the large breakfast that I had eaten, as I did almost every morning. Things like Oats, Cream of Wheat, and all manner of wheat products from biscuits and gravy to toast.

I remember being sleepy almost all of my life, in school and then later in business meetings and actually falling asleep wherever I was. If I visited friends for dinner, I would pass out on their couch after eating. If the couch wasn't available, the floor was more than adequate.

Driving was a challenge as I had to pull over and sleep about every 50 miles, give or take a few. It wasn't a cat nap situation for the most part. Sometimes I would be better after and hour or so, but other times, I might not wake up for 3 to 6 hours.

At one point I slept for the better part of 6 weeks and then the doctor diagnosed me with EBV. I have always had low blood pressure and low blood sugar. But still after the EBV deal, I could not stay alert for very long at a time. My 18 year old son recently told me that I had been asleep ever since he had known me.

I was told that I was allergic to wheat by a nutrionist, later confirmed with allergy testing and then went gluten free. I am more awake now than I have been in years, but if I accidentally consume gluten, I know it almost immediately as the sleepiness comes back.

Needless to say, my house has been a wreck as things just didn't get done for so many years. Sleep was not an option, it was mandatory. I just couldn't stay awake.

[AliB]

I have come to this thread rather late in the day as I wasn't posting anywhere but the SCD thread for a while, but it is very interesting.

I didn't have narcolepsy, but I used to get periods where I would just become so fatigued that it would take all my effort not to lay down wherever I was. I have now realised that it was my digestion that was the problem.

My stomach would often feel 'weary'. I thought it was because I was overweight but my digestion was the real factor.

What I have learned is that the digestion draws a lot of energy from the body. If it isn't working properly then the amount of energy is increased and the body then has to draw energy and nutrients away from other areas in order to deal with the digestion. The digestion always takes priority as the body needs food in order to live.

I suspect that the reason I became fatigued is probably the same reason that others develop extreme sleepiness or even narcolepsy, because the body has drawn the energy away from that area in order to deal with the digestion.

Bit like when people fall asleep after a huge meal - the body has to shut down so that it can concentrate on the digestion.

Despite being told that the digestion has healed after going gluten-free I feel that some areas or aspects of the digestion may still be damaged in some and that may be why they still get similar symptoms even though gluten-free. Although a biopsy may appear to indicate healing, it cannot see what is going on underneath the villi, nor does it look for digestive problems within the pancreas, liver or spleen. Liver function tests only pick up whether the organs are doing what they need to be doing, not whether they are doing it under duress.

Blood sugar and insulin problems can also contribute. The alarmingly growing number of people with Blood sugar imbalances, either in Hypoglycemic episodes or in 'Syndrome X' or Diabetes is largely down to the high volume of carbohydrates that we consume in the West. The World has never before consumed anything like this kind of quantity, nor this kind of processing, of carbohydrates.

I was told years ago that I should follow a low-carbohydrate diet and when I did, I no longer had the fatigue or hypos (and I enjoyed much-needed weight loss). Had I stuck with it I might well not have developed Diabetes or become gluten intolerant either!

I now follow a low-carbohydrate, medium protein and higher (good) fat diet with plenty of fresh vegetables and some fruit and am not only losing weight again, but I have more energy, and more importantly I no longer need to take any insulin as my Blood sugars are now stable in or around normal range.

[Korwyn]

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.

The more research I do the more concerned I get because it seems that a lot of us with celiac disease are miss the whole gut health and nutritional deficiency issue during the first few months/years. I have found that due to gut damage and BACTERIAL IMBALANCE due to both celiac disease and various rounds of anti-biotics over the years, my intestinal bacterial balance has been way messed up, which is the cause of much of the nutritional deficiency. I am sodium, vitamin D, B12, B6, Omega 6, and Omega 3. Possibly others. These cause many various symptoms and associated conditions. Get the Red Book (http://www.recognizingceliacdisease.com by Cleo J. Libonati, RN, BSN). This book has been incredibly invaluable for both myself and my Dr.

[marlowg]

You might have a vitamin B12 and/or folate deficiency resulting from malabsorption. This leads to anemia resulting in low oxygen and high CO2 to the brain.

[kareng]

You might have a vitamin B12 and/or folate deficiency resulting from malabsorption. This leads to anemia resulting in low oxygen and high CO2 to the brain.

Just want to let you know that you are responding to an OP that hasn't been on the forum in 3 years. You probably won't get a response.

[L8discovery]

In answer to your question is extreme sleepiness a possible symptom of gluten intolerance: the answer for me was yes. The inflammatory response is not limited to your gut. If any gluten gets into the bloodstream your immune system will attack it wherever it goes, giving you all sorts of symptoms, depending on where the gluten molecules "get stuck." Your immune system can damage your body almost anywhere, giving you an unpredictable series of symptoms as it's trying to eliminate the offending antigen. You would not believe all the medical conditions that fall into the autoimmune category. For those who do not know, this particular immune response is not the same as the "allergic response", it's completely different. (Check out "innate" vs "passive" immunity.)

 

One more thing: Your body's immune system can cross-react (fooled) with more substances than just gliandin. For those who are on a gluten-free diet and still have symptoms, they could be either cross-reacting or not really gluten free. This is NOT a plug, but for those whose want to go to the EXTREME in elimination trials, try juicing fruits and vegetables as recommended by Joe Cross. I personally did it for over 2 months with incrediblly good results. (IE: Within two weeks of juicing, my high blood pressure was gone, not to mention my fatigue (sleepiness) problem)

 

 

 

 

 

[kareng]

 

One more thing: Your body's immune system can cross-react (fooled) with more substances than just gliandin.

 

 

Once again - There currently is no scientific proof for cross-reactivity in Celiac disease.

 

http://www.cureceliacdisease.org/archives/faq/whats-with-all-the-talk-about-certain-types-of-food-causing-cross-reactivity

 

"There is not yet reliable data about cross-reactivity. As for the alleged possibility that many gluten-free foods or drinks (such as coffee, milk, orange juice, etc.) would trigger symptoms in celiac individuals due to hidden antigens mimicking gluten or cross-reacting with anti-gluten antibodies, it must be clearly stated that this is all false information, devoid of any scientific basis, and must be rejected as untrue."