[Research] Gluten Sensitivity & Temporal Lobe Epilepsy w/ sclerosis

[KarenB]

http://www.ncbi.nlm.nih.gov/pubmed/19244266

This isn't a brand new study, but I just stumbled across it.

48 patients with epilepsy which didn't respond well to meds were tested for autoimmunity.
-16 of the patients had temporal lobe epilepsy with hippocampal sclerosis
-16 of the patients had temporal lobe epilepsy without hippocampal sclerosis
-16 of the patients had epilepsy that was not temporal lobe

7 of the patients were found to be gluten sensitive. All of them were in the temporal lobe epilepsy with hippocampal sclerosis group.

Gut biopsies of the 7 patients w/ gluten sensitivity indicated that 3 had established celiac disease and 4 had inflammation consistent with early stages of celiac.

Conclusion: gluten sensitivity can lead to temporal lobe epilepsy w/ sclerosis

 

[RobinN]

brain gut connection

 

[KarenB]

Interesting that it affects the temporal lobe.

Jon has temporal lobe epilepsy, but no sclerosis. He does seem to have gluten sensitivity, but when we had him tested for it back in 2010, the blood test came back negative. At any rate, his epileptologist recommended he not eat products with gluten, even if he goes off the Ketogenic diet.

 

[Elaine H]

That is interesting, I have TLE, and cannot eat certain breads, certainly not white bread, pastry, crisps, nuts, in fact there are so many things that don't agree with me now that I live on multi seed batch toast and marmite, grapes and cheese, and certain cereals, no wonder I've lost so much weight recently. I was woken up in the early hours of this morning, with what was like really bad stitch in both sides of my groin. The doc keeps saying I have IBS, stress related, and I'm at the most stressed I've ever been in my life right now!!I had my second brain surgery due to Hippocampal Sclerosis in 2008. Thanks for that, very interesting.

 

[KarenB]

Elaine, I'm not sure if your multi-seed toast is made with wheat flour, but there's lots of breads that can be made without wheat. Some are available in the supermarket (at least in the U.S.). Bread can be made with rice flour, nut flour, flaxseed meal, etc.

Since you do have both temporal lobe epilepsy and GI issues, you may want to discuss with your doc getting tested for gluten antibodies.

 

[Elaine H]

Thanks for getting back to me, crazy eh, in the thirty odd years of being treated for TLE, nobody has ever even mentioned this possible connection to me, well, not that I remember anyway, I shall certainly mention to my Professor when I see him next time. We are learning all the time about the brain and cannot dismiss anything.
I know one thing about the bread I eat at the moment, it doesn't double me over in agony, the pain last night I think was caused by muesli I had for tea, and it had nuts in it, I love nuts!! I get so mad about having to poke and pick my way through food and being a fussy eater was a no no as a kid, you ate what was given to you, or you went without!! I am going for a meal with an old friend tonight, and I am not going to sit and read the menu for an hour, I usually have something with rice, pasta isn't too bad, although I know wholemeal is meant to be better, no wonder I dread meal times these days, I don't even drink wine anymore, have no social life, and this all leads to stress, which is of course the biggest culprit when it comes to my TLE.
Best Wishes X

 

[mikepen0287]

jeeze thats a little scary, at least my epilepsy was around before my ulcerative colitus.
though i have a few friends that have similar gut problems. while its a running gag we have that in common, would have to say i hope this doesn't mean that they can get epilepsy like me.

 

[KarenB]

Not wanting to scare you, Mike, but sometimes (even though it can be a cause), the colitis doesn't manifest itself in obvious GI symptoms until the epilepsy is established. In the case of Celiac disease, even when folks have it (and don't know it because they're not having a lot of gut problems), it can cause calcifications in the brain (which can be seen by MRI), and apparently this can trigger epilepsy (and other neurological issues). Some neurologists have ordered testing for celiac when they saw the brain calcifications, and they have come back positive.

Beyond Celiac, many patients with other GI problems -- such as ulcerative colitis and Crohns -- also have epilepsy. In fact, recently doctors have noted that young children (babies and preschoolers) tend to have seizures when they have a very mild case of rotovirus diarrhea. Robin is dead-on when she mentions the brain-gut connection.

In our case, after been seizure free for a year, Jon had a relapse after an intestinal illness, and then a 2nd intestinal illness 6 months later which evolved into chronic daily diarrhea put him over the edge into horrible tonic-clonic and tonic seizures every day (3 to 9 a day). We couldn't get the seizures resolved until we got the gut issues resolved (working very hard with a nutritionist who was also a pediatrician -- the GI doc was useless). He's been mostly diarrhea free since December 2012, and his seizures have gone back into remission since January 2013.

We also followed the guidelines of the Specific Carbohydrate Diet, which I would highly recommend to anyone who has both chronic GI issues and seizures (we were following a lot of it anyway, since Jon is on the Ketogenic diet, so sort of modified the guidelines to fit in with the Keto diet).

 

[mikepen0287]

i got my epilepsy from some brain damage, so i don't know how connected it would be.
but still pretty darn scary.

 

[AnneN]

I have never heard of this connection before. I am gluten intolerant and I have TLE and Grand Mal. My Grand Mal seizures only started when I reached puberty, but i suffered from terrible gut aches /problems as a child. Karen B can you just clarify if the study resulted in saying that the gut problems CAUSED the epilepsy or are they saying that there is a correlation between having Epilepsy and gut problems (e.g.: the two things just exist together). Either way this result is interesting. I am not too sure about what sclerosis is, I think I have a fair idea. Cheers. Anne.

 

[masterjen]

I have celiac disease and epilepsy. I was diagnosed with celiac just under 4 years ago when severe symptoms started, but was showing mild symptoms for 7 years before that which I didn't think much of and I handled by my own decision to not eat bread and seemed to be fine for those 7 years once I did that. Was diagnosed with nocturnal epilepsy 3 1/2 years ago, but again in hindsight can trace signs of seizures back about 6 months before that.
EEG is abnormal (something about white matter where it should be within the grey matter), but does not show signs of sclerosis (or tumor or scarring). One hour EEGs are normal but based on symptoms, diagnosis is frontal lobe seizures. Still waiting for video EEG.

I've always been convinced the two are related, but seizure specialist doesn't think so. I had that autoimmune blood test to see if I have a form of autoimmune epilepsy, but the test was negative. Would like to hear from others who have both epilepsy and celiac, and if you don't have the "classic" celiac-epilepsy connection of sclerosis, how did your doctor determine there was (or was not) a connection between the two conditions in your case.