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Sudden Spells Of Extreme Sleepiness When Glutened


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#16 LM_Ohio

 
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Posted 19 May 2009 - 06:34 AM

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!
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#17 moose1988

 
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Posted 22 May 2009 - 10:11 AM

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.
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#18 LM_Ohio

 
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Posted 31 May 2009 - 05:49 AM

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!
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#19 bigfootme

 
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Posted 12 July 2009 - 12:05 PM

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.
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#20 AliB

 
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Posted 12 July 2009 - 02:58 PM

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.
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Ali - 50 - struggled with what I now know to be GI symptoms and poor carb digestion for at least 35 years! Diabetic type II (1997). Mother undx Celiac - lifelong diabetic Type 1 & anemic (plus 1 stillborn and 10 miscarriages after me). Father definitely very GI.

Stopped gluten & dairy, Jan 08, but still other issues so dropped most carbs and sugar and have been following the Specific Carb Diet (SCD) since March 08. Recovery slow but steady and I can now eat a much broader range of foods especially raw which are good for my digestion and boost my energy level.

Not getting better? Try the SCD - it might just change your life.........

#21 Korwyn

 
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Posted 14 July 2009 - 01:27 PM

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.recognizi...liacdisease.com by Cleo J. Libonati, RN, BSN). This book has been incredibly invaluable for both myself and my Dr.
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Undiagnosed for 20 years since first symptoms.
March 2009 - Negative Blood work
April 24, 2009 - Gluten-free
April 29, 2009 - Notably positive response to gluten-free Diet.
May 2, 2009 Dairy Free
May 6, 2009, Soy Free
May 27, 2009 Enterolab Results: Positive Anti-gliadin IgA, tTG IgA, Casein, HLA DQ2.2, HLA DQ8
June 4, 2009 Refined sugar free (except Raw Honey, pure Maple syrup)
June 29, 2009, Dad diagnosed Celiac by GI specialist via blood work and dietary response.
July 2009, Dad's gene test: double DQ8! Thanks Dad - I'll try to get you something nice for Christmas! :)
August 8, 2009 Really Soy free this time - Thanks Blue Diamond for the soy lecithin in the almond milk! :(

#22 marlowg

 
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Posted 07 February 2013 - 04:41 AM

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.
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#23 kareng

 
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Posted 07 February 2013 - 06:00 AM

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.
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#24 L8discovery

 
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Posted 09 October 2013 - 01:32 AM

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)

 

 

 

 

 


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#25 kareng

 
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Posted 09 October 2013 - 04:41 AM

 

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.curecelia...ross-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."


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Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#26 Porcelina

 
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Posted 17 October 2013 - 06:26 PM

When I'm glutinized, I get extreme fatigue and weakness. Feels like the flu and will last 24 hours. I've had customers tell me I look like crap during these events and no amount of coffee can keep me awake. I'm like a zombie.


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