Celiac Seizures

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Ecolimom

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I wanted to give an update on my son's diagnosis in case it might help someone else.
Nov 2013 my son had his first seizure. Complex partial. Middle of the day. It was preceded by a tiring weekend trip and accidental gluten exposure during our travels. He was diagnosed with BRE after an EEG that was done in the ER and started on Trileptal. The neuro we were referred to said that there was no way gluten exposure had anything to do his seizure.
Almost exactly 3 months later my son had a 2nd complex partial. We happened to have a consult scheduled later that day with a different neuro for a second opinion. She felt the seizure duration and characteristics were not indicative of BRE. We couldn't identify a gluten exposure preceding the second seizure and although this neuro did not rule it out she said there aren't many studies linking the two. She referred us to the Epilepsy Center at Florida Hospital for and MRI and 24hr EEG. The idea was to rule out physical causes behind the seizures.
After testing the epileptologist told us that she believes his seizures are caused by celiac disease and gluten exposure. She has seen a few similar cases of intractable epilepsy that presented on the EEG similar to my son.
My son has been on a gluten-free diet diet his entire life although we haven't been uber strict. When I first introduced foods to him I noticed that wheat seemed to 'run through him' so we just avoided it. (When we would eat out we didn't order things that obviously contained gluten but we didn't usually request gluten-free either) Allergy tests for wheat were negative so we thought he just had an intolerance. I'm thankful that we were mostly gluten free before since the seizure frequency would most likely have been much worse if he was having lots of exposure to gluten.
We are going to start weaning off of the Trileptal this week and are now following a strict gluten-free diet for our entire household. Fingers crossed we've nailed the cause and can keep him seizure free.
I was told twice (once emphatically) that gluten was not causing my son's seizures. In my gut I felt differently. I wanted to share in the hopes that it might help someone else someday.
 
Hi - I'm an adult with celiac as well as seizures, and I've been given the same story; ie. that the two are not connected. Like you I refuse to believe this. I have had seizures for almost 4 years, and was diagnosed with celiac just over 4 years ago when I had a "celiac crisis" (extreme pain abdominal pain, intestines threatening to shut down, etc.), although now in hindsight I can trace back very mild and intermittent signs of celiac to 6 years prior. While I've been religiously gluten-free since the diagnosis, I still have seizures. It is known that going gluten free does not always control celiac-related seizures, particularly in adults, at least in part because of potentially years of damage (eg. to the CNS and PNS) due to so-called "silent celiac" (ie. none of the obvious intestinal issues, or too mild and inconsistent to really signal a problem).

A question for you: I just recently read that meat and dairy should be avoided by celiacs unless the animals were grass fed, as opposed to grain fed. Have you heard of this? Has your son's doctor made any comment about this?? Thanks!
 
Hi Jen-
I've heard the same thing about grass fed meat and dairy. The logic makes sense to me. You are what you eat ( so they say) so if you are eating an animal product that was raised on gluten containing grains there would potentially be gluten residue in the animal fat and protein. Luckily grass fed butter and cheese is relatively easy to come by, Kerrygold is readily available in our regular supermarket and costco, but the grass fed meats are definitely a more difficult hurdle.
The epileptologist that gave us this latest diagnosis did say that there is no guarantee that DS will become seizure free on a GF diet but she felt comfortable doing a med-free trial.
I'm curious, can you track any gluten exposure to the seizures you have had? Because we were not super strict GF between the first and second seizure I'm wondering if perhaps several minute gluten exposures cumulatively lowered his threshold for the second seizure.
Also, I'm strongly considering trying the GAPS diet to attempt to 'heal' the harm that's been done to his digestive track. Obviously I need to find a good and affordable source of grass fed meats first though!!
 
Hi! I'm still not convinced as to how legitimate the claim is about the risk of eating meat/dairy from animals who have consumed grains. I agree some of the logic is there, but I also would think that by the time the animal digests and converts energy from the grain into muscle, fat, etc. that not much of the protein harmful to celiacs still exists. If you do find an answer to this, let me know and I'll do the same! It is at times frustrating enough to ensure everything is GF, and if we can avoid having to search for special meats and dairy products that would be nice!
I haven't been able to track seizures to gluten exposure, as I have had no gluten consumption in well over 3 years. I live alone and don't eat out, so there are no issues with cross-contamination, either. I do know of parents of children with celiac and seizures who can very clearly make the connection between gluten consumption and their child having a seizure. I do have other neurological manifestations of celiac, however: severe peripheral neuropathy, ataxia, and white matter abnormalities on MRI scans. Likely I was being affected by gluten long before the more obvious intestinal signs showed up that prompted testing to be done.
 
Gluten & Meat/Eggs

Jen I came across a site that may be of interest to you..... I can't post a link (I'm still a newbie) but if you look up health now medical (it's an integrative clinic in CA) they have a blog that covers much of the latest gluten/celiac research. Specifically there is a post covering getting 'glutened' from animal meats and eggs that's worth a read.
 
Many thanks. I'll look it up! What is your take on the info. so far? Do you think there really could be something to consuming meat, poultry and dairy from animals that have eaten grains??
 
After reading through the info I would suspect that for a very very limited group of celiacs meat and/or dairy contamination could be the culprit but that its a remote chance. (I would only go to the trouble of sourcing GF meat/dairy after trying everything else since the chance is so small). Eggs on the other hand, I would be more apt to source out with GF feed. Cost wise it wouldn't be as prohibitive and special eggs are easier to come by than special meats (at least in our area) The study discussed demonstrated soy contamination of the yolks, not gluten, but it does show that there is the potential of the feed to affect the end product. Again for a highly sensitive individual it might merit looking into.
Something else of interest in my reading is that many gluten-free grains are contaminated well above acceptable levels. Rice was the only consistently 'safe' GF grain. I think our next step may be to follow the Gluten Contamination Elimination Diet. I made homemade Corn Tortillas (with GF corn masa flour) tonight and saw digestive upset within 10 minutes with my son. Since I make mostly everything at home anyways what's a little more restriction to hopefully get to the bottom of this???? ;-)

From the health now medical blog...
What was the gluten contamination elimination diet exactly? It allowed brown and white rice as the only grains; fresh fruits and vegetables, no canned, frozen or dried; herbs; fresh meats, poultry, fish and eggs, nothing processed such as bacon, deli meat or sausage. Dairy products were eliminated for the first month and then reintroduced to see if they were tolerated. But only unflavored, unseasoned butter, milk or yogurt, no cheeses were allowed. Condiments consisted of oils and vinegar, excluding flavored and malt vinegars, honey and salt. Allowed beverages were 100% fruit and/or vegetable juices, milk (after the first month if tolerated), water, and gluten-free supplemental formulas such as Boost and Ensure. All cereal grains aside from rice are prohibited.

There's always more to read and learn!!
 
You're very correct, that there is always more to learn. More information is emerging all the time. I haven't finished going through all the information on the health now site, but it is all very interesting. I'm thinking along the same lines as you, that one would have to have a pretty severe case of celiac to be be affected by the meat of grain-consuming animals. But still, if a source of non-grain fed chicken or eggs was readily available, I would probably switch to that. I've been gluten free for 4 years, and still I'll have inexplicable intestinal issues crop up, and I'm left wondering if my gut is sensitive to other things. It's just so inconsistent I can never put my finger on exactly one thing that caused the problem.
One thing that I am not sure I support is rice as the only permitted brain (and presumably they are encouraging rice labeled as gluten-free; ie. grown and processed in uncontaminated areas). Elsewhere I've read that quinoa can be well-tolerated by most with celiac, and it contains a good source of protein as well as fiber. I did better with quinoa than rice at first! I know - contrary to what we would expect, considering rice cereals are the first given to babies because of how well-tolerated they are. Now I can eat both types of grains without a problem, but because of the overall higher nutritional value of quinoa, that has become largely a replacement for rice in my own diet.
 
Hi Ecolimom:

Jen and I have talked about this recently. I too have Celiac and have Complex Partials, while adhering to a very strict GF diet. There is absolutely a connection and info to back that up--I can't post links either yet, but the info is out there. 4 years on GF diet and still having seizures. One thing that may help is to check the med levels while he is still on medication. I had mine done recently and because of the absorption ( my Celiac went undiagnosed for so long, I still have many issues). The levels showed that I wasn't absorbing the full amount of the prescription.

Also to support the labeling of GF foods, I've read that it still allows an amount of gluten that is above what we can tolerate :(

PS: I love quinoa too! great recipes for it. Not sure how old your son is, but if he's younger, I feel your pain--I have two boys, 4 and 6, and it's difficult to get them to eat anything. I can't imagine the difficulty of having a child on a GF diet and getting them to try broccoli !
 
Has anybody tried probiotics?
Seems to work for me.
 
I have not been diagnosed with it.
I have had a colonoscopy, where polyps were removed.
I can't eat a lot of wheat (my boss made chicken and dumplings, I am going through the consequences now.)
I can't eat peanut butter either.
 
My "lecture" for anyone with celiac who comes across this thread:
Probiotics, unfortunately, are not a treatment for celiac. The only treatment is avoidance of ingestion of gluten. If one has celiac and continues to expose themselves to gluten, they put themselves at an increased risk for developing other autoimmune diseases, certain cancers, and neurological disorders. If a person with celiac takes a probiotic, it does not mean he/she can eat gluten and therefore avoid the GI upset and further damage to the small intestine, nor does taking a probiotic reduces his/her risk of developing other diseases or conditions.
 
Yup, you're right. I have first hand experience with that.
While probiotics do seem to help a bit, it does not help when you eat wheat.
 
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