Sleep Disorder/Celiac Disease

[justme]

My 7 year old son had 4 febrile seizures as a toddler and has had sleep disorders/events since he was 2.  He acts out his dreams (not just terrors, but conversations, movement, etc. 5 nights of 7) and has other symptoms consistant with Narcolepsy or sleep deprivation (but no overt cateplexy yet). Almost every other differential diagnosis has been 'excluded', although only one of the docs consider narcolepsy as truly possible because of his age. He's had 3 abnormal EEG's and an overnight EEG that didn't catch much. He had 5, 2 sec 'spike/wave' over the course of the whole night, which one neurologist says rules out epilepsy and another says it could be nocturnal epilepsy - especially because the activity is in the frontal-temporal area.  He's going for an MRI, a sleep study, and a psych evaluation (due to behavioral probs;high anxieties, fears).

[sonandsteve]

A related discussion, can you help my 2 yr old son was started.

[cckiki]

I am a 46yr old female with a one year dx of Celiac Sprue.  I had all the clasic symptoms of CS ie. digestive problems which are aprox. 75% controlled with my gluten free diet.  My ongoing symptoms are blood count irregularities and severe sleep problems and night seizure type episodes.  If I have even a minute crumb of gluten in the day I will experience wild dreams and inability to wake up out of a sleep or wake up in a severe jerking, can't breath exhaustion jerking type episode then be so exhausted when I finally do wake up that I fall back to sleep and the whole cycle starts all over again.  I can have this happen 1-5 times in a night.  The next morning I am extreamly dizzy and nausous for 24 hours until the gluten clears through my body.  I have been to x3 neurologists for this with none of them coming to a conclusion.  If I cook 100% all my food with no possible exposure to gluten these symptoms are 95% controlled.  I am wondering if anyone has heard of these symptoms with Celiac Sprue?

[CCF-Neuro-M.D.-JT]

There is an association between celiac sprue and epilepsy.  One article reported that about 5% of patients with sprue also have epilepsy and half of those patients have abnormal calcifications in the brain.  Your son's case sounds complex and he may benefit from admission to a pediatric EEG monitoring unit at a major academic hospital (pediatric EEGs can be difficult to interpret) so that there can be a definitive diagnosis of epilepsy.  This is very important as he should be appropriately treated if he indeed is having nocturnal seizures. An MRI of the brain as well as bloodwork should also be done to further investigate his symptoms/signs (as you are doing). As for the sleep disorder, I couldn't find anything in the medical literature regarding an association with celiac sprue, but that certainly doesn't mean there isn't one.  The sleep specialist you are seeing may have more current data or is likely more well-versed in the sleep literature. Best of luck to you and your son.

[justme]

(sry, had to continue here.)

The sleep specialist (highly regarded in his field), ordered blood work for celiac disease.
I have never been presented with this possibility before and in researching it, I'm afraid it may be far more likely than anything else. He has complained regularly of stomach and bone (right leg) pain, has short stature, etc.  Except that most of the problems I am aware of are the sleep events and consequences of lack of quality sleep.
Can Celiac Disease have such an impact neurologically and on sleep, without other really overt symtoms to indicate it? Are there any other possibilities? With everything they look at as 'possible' (epilepsy, tumor, cushing's disease, apnea, narcolepsy), it seems there is a common, overt presenting symptom that is absent. He struggles more and more to cope as he gets older and more is expected, and I want to be able to get him the appropriate supports and help.