Vegetariansim, Soy, and Epilepsy

[Katie]

So I've been reading a lot of how bad soy is for your body. I've been vegetarian for over 8 years, so I consume a lot of soy. I've been wanting to stop this, but I'm not sure what to do. I eat fish, so I'm not technically vegetarian (to me you're either veg or you're not, there's no in-between lacto-ovo, pescatarian, etc.).

Anyway, I have simple partial seizures that are about 80% controlled on Lamictal XR 100mg. I am seeing my neurologist next week hoping to increase it and see if that works totally. I have only had one supposed grand-mal but I was alone so we can't be sure.

I feel like my epilepsy is pretty mild in the grand scheme of things. So would modifying my diet really be that important? I get my produce from a local CSA (community supported agriculture) so I eat a variety of fruits and vegetables. I eat almost entirely whole grains, natural cheese, fresh caught (aka not farmed) fish, and organic omega-3 eggs. I cook all sorts of things for myself. But a lot of it is made with tofu or tempeh. Should I stop eating them? Do you think it's a big deal? I also take B complex supplements, if that makes a difference.

Are there any other vegetarians or partial vegetarians with epilepsy?

Thanks!

[Molly97]

I have to laugh at the time when I thought tofu was a good substitute for meat because I have found how sensitive I am to soy anything and everything. I consciously leave soy out, and my seizures dramatically decrease; eat soy and it's Seizure City. To my body, it's a big deal! Everyone's different.

[Katie]

So are you no longer vegetarian, or have you found other substitutes?

[Junebug]

All I know about how bad soy is for you is that soy is made with genetically modified organisms (GMO's) and is known to cause some types of cancer and other fatal diseases but unfortunately the Govt doesn't think that it is important enough to put lables on our food about GMO's.

[Nakamova]

When your seizures are relatively mild or well-controlled by meds it can be tricky to tell if you are sensitive to particular foods. Since your seizures aren't 100% controlled, there is the possibility that changing your diet might mean that you don't have to up your meds. The downside is that it can take time and patience to identify and eliminate a food trigger .

Any food can be a culprit, although wheat, soy, sugar, dairy seem be to be the most common. Soy could be a trigger, but it seems that wheat/gluten is the bigger problem anecdotally for folks here at CWE and elsewhere. If you think that soy may be a trigger, it shouldn't be too hard to replace its protein content in your diet (since you eat fish, eggs and dairy, and presumably things like nuts, beans, quinoa, etc). If you don't have a gluten sensitivity then you can replace some soy products with seitan-based ones instead.

In general, the fermented soy products (like tofu and tempeh) are considered less problematic than more processed forms. but I don't think there are a lot of statistics analyzing different soy foods in relation to epilepsy.

[Katie]

Thanks for the input.

I would say that generally 70-90% of my food intake is from non-GMO sources (and that includes soy and everything else). The CSA helps with that. I urge everyone to look into their local CSA.

I'm glad tofu and tempeh aren't that bad. I drink almond milk, which has surprisingly low protein content, in place of soy. But I do get eggs, cheese, and fish. I eat thinks with milk in them, I just don't drink it or use it in cereal directly.

[Endless]

Hi, Katie,

I'm 100% vegan. I eat non-gmo food (organic). I've tried going off soy for about two months (during an elimination diet) and it made no difference whatsoever in my seizures or anything else. Some people do have problems with soy, though. I'd try going off for awhile and see what it does.

There are lots of sources of protein. I rely heavily on legumes because of their high iron content as well as other vitamins and minerals . Especially lentils which have lots of iron, zinc, and calcium, as well as B3.

I belong to a CSA also. Aren't they wonderful? I just love getting my surprise box every week. It makes me cook a variety of things - more than I otherwise would. And they grow some really unusual stuff - but I love it. Last week was the first time I've ever cooked (or seen) cranberry beans. I steamed them and made a chilled salade with the last of the season's zucchini blossoms.

[Bernard]

Are there any other vegetarians or partial vegetarians with epilepsy?

I have been a vegetarian for over 25 years now. I ate a vegan diet for most of that time period. Within the last year or so, I've started eating a little bit of wild Alaskan salmon once in a while.

When I met Stacy, she ate anything (ie. processed food "crap", tons of caffeine, etc.). When our relationship got serious, she adopted the same diet I was eating. It's hard to say really how that might have affected her seizure activity because there were a lot of changes happening at the time and we can't really attribute anything to a single factor, but this was the time period where she used neurofeedback the first time and managed what was for her unprecedented - 4 years with absolutely zero seizure activity and no meds.

Unfortunately, something about giving birth wreaked havoc with her system and she has never quite managed to regain that Holy Grail since delivering our children. We went through a really dark period where her seizure activity was extreme and nothing we tried seemed to help.

Eventually, Stacy's doctor convinced us that she needed more protein in her diet so she started eating fish and chicken again. This in combination with taking Dilantin (which binds with proteins when metabolized properly) and other factors (regular sleep routine, etc.) finally managed to get her seizures back under control.

She still eats vegetarian meals here and there while also eating eggs, fish and chicken most of the time. She eats soy once in a while, but it's not every day. She currently has decent seizure control.

One thing I found significant for her was when she tried adopting the GARD diet, her seizures and menstruation period went haywire. Avoiding soy could be a key for anyone, but you won't really know until you try it out for yourself.

Unless you have a celiac intolerance, I believe that like most things - it's OK in moderation and potentially dangerous in excess.

[Katie]

Thanks to you both! Great information.

Endless, I love my CSA for the exact reasons you do. I eat things I normally wouldn't eat. I find when I go to the grocery store I buy the same things over and over, but in my CSA I get beets, okra, white watermelon, and so much else! It's really made a big difference in how often and how many different things I cook.

Bernard, I'm so sorry to hear about Stacy's hardships. I hope you both find something that works well for her again. I can't imagine how hard it would be to be epileptic with children. She's so lucky to have you to help her.

I'll start eating less soy than I normally would, but I won't worry about cutting in out completely.

Thanks again for the input everyone! Great to know there are other vegetarians and vegans too!

[Molly97]

Soy could be a trigger, but it seems that wheat/gluten is the bigger problem anecdotally for folks here at CWE and elsewhere.

Actually Nak, I think it's safer to say that glutamate is a bigger problem for folks here, soy being a primary source.

[Nakamova]

I guess I tend to think of soy and gluten running neck and neck as triggers, and I gave the edge to gluten because of the qualified success of gluten-eliminating diets have had for seizure control. Of course many of those diets eliminate soy too...

I think of both glutamate and aspartate as powerful direct triggers (in other words, eat a meal from KFC, or drink a diet soda, and suffer immediate consequences.) So you know right away that it's problematic. Gluten can also act that way, but it seems to have a subtler long-term component where over time the gluten intolerance prevents proper absorption of fats and other nutrients. This in turn can lead to a systemic imbalance that can lower seizure threshold.