Epilepsy and Celiac

[Bill1979]

I was diagnosed with celiac in 2006 through biopsy, which found devastated villi. Subsequent biopsies, usually every other year, have shown much healthier villi. But something new hit me in December 2020: seizures. I didn't realize it at the time, but I had been having absence seizures for years. Those are the kind where the lights turn off for a few seconds and you jump right back into whatever you were doing. I wasn't sure what they were until I suffered an actual seizure on Dec. 16, 2020, while working from home. 

I realized that I had "overdosed" on gluten -- after discovering (too late) that the soggy sauced sub bun I ordered at Jersey Mike's was a regular bun, not the gluten-free one I ordered.  That led me to do some research, which suggested that 2 percent of people with celiac develop epilepsy. I now take daily medication, but I've had five additional seizures since that first one. The first two (April and June 2021), we know why they happened (rx interactions). The last three, we think were related to too much gluten in my system from cross contamination. I currently take 3,000 mg of Keppra each day, up from the original 1,000 mg I started with in January 2021. 

We know that there are neurological symptoms to celiac and getting glutened, but I never thought mine would grow this severe. Anyone else out there have this experience? You're not alone. 

[Scott Adams]

Others have reported seizures here, and we do have some articles on this topic:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/epilepsy-and-celiac-disease/

In many celiacs the symptoms involve mostly the nervous system and brain, and these symptoms can take a long time to go away. How are your vitamin & mineral levels? Are you getting enough B12 and other B vitamins?

[Darcy Martinez]

Are you low carb?  

Gatorade helps me, sugar of gatorade is easily absorbed and used.  Benfothiamine might help you 

[Bill1979]

8 hours ago, Scott Adams said:

Others have reported seizures here, and we do have some articles on this topic:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/epilepsy-and-celiac-disease/

In many celiacs the symptoms involve mostly the nervous system and brain, and these symptoms can take a long time to go away. How are your vitamin & mineral levels? Are you getting enough B12 and other B vitamins?

Thanks for the links to previous articles on this. Very eye opening, particularly the one on the connection between autoimmune diseases and epilepsy. 

I also have discoid lupus and raynauds syndrome. 

My vitamin levels from bloodwork usually read normal, except D is sometimes low - particularly in the winter. 

[Scott Adams]

@knitty kitty sent this to me:

Gluten sensitivity and epilepsy: a systematic review

https://link.springer.com/article/10.1007/s00415-018-9025-2 

[Heather E.]

I have recently been diagnosed with Celiac. I had seizures start out of the blue as an adult. The doctors couldn't find a reason why. No head injuries or other findings to explain it. Years later the diagnosis came for Celiac. I don't know if going gluten free will help since I am new to Celiac but I do know it may take multiple changes in medicine to stop it. I have had to change meds multiple times. The doctors have also had to increase doses. It was very frustrating to go through. I take 400mg of Lamotrigine and haven't had a seizure since 2016. Just hang in there and it will get better. 

[trents]

Welcome to the forum, Heather.

Having celiac disease should not require you to make changes to your seizure medication unless the medications are not gluten-free. And you should check on that. It's usually not a problem but wheat starch can be used as a filler in pills, particularly if they are being manufactured outside of the USA. A good place to start to investigate that issue would be to contact the dispensing pharmacy. They can tell you who the manufacturer is. Also, since you are a newly diagnosed celiac, this may help:

It should be interesting to see if going gluten free will make an improvement in your seizure disorder. Celiac disease can cause neurological issues.

[Wheatwacked]

Welcome Heather. There has been research done on epilepsy and celiac disease. "Epilepsy is 1.8 times more prevalent in patients with celiac disease, compared to the general population. celiac disease is over 2 times more prevalent in patients with epilepsy compared to the general population. Conclusion: Patients with epilepsy of unknown aetiology should be investigated for serological markers of gluten sensitivity as such patients may benefit from a GFD."   https://link.springer.com/article/10.1007/s00415-018-9025-2

I did read another article that correlates a certain celiac disease symptom and epilepsy to white spots in the brain. You'll have to search for it. Anyway, the takeaway was that the cerebral white spots in both were from folate and choline deficiencies.

found one, search was "epilepsy white spots and folate deficiency": Actual Insights into Treatable Inborn Errors of Metabolism Causing Epilepsy    Although it is looking at metabolic problems in children, the malabsorption syndrome of Celiac Disease in an adult could imitate the deficiencies caused by errors of metabolism.  Many of the vitamins and minerals at risk in celiac disease are the same found to have a possible beneficial effect on seizures. It could be that the seizures were your first symptom of Celiac Disease.

It is important that you are getting more than 100% DV of all the essential vitamins and minerals. My current favorite factoid is that a lifeguard in August has a blood plasma 80 ng/ml vitamin D while low vitamin D (<29 mg/dl) is a common finding in Celiac Disease and for that matter many other autoimmune diseases.