Gluten free--problems with symptoms?

Garbo

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About three weeks ago (almost a month), I went about 90-80% gluten free, minus wheat by-products in dried fruit, etc. It was actually relatively easy and I felt fine.

Over the weekend, I ended up getting really, really sick-- stomach issues, migraine, etc.-- and it's not clearing up. I understand that a person can have "wheat withdrawal" (I was reading about it online and it's supposedly a "good thing"), but where does the line draw? Also, being a PhD student, I kind of can't handle symptoms like this until the summer.

Has anyone else experienced this? Has anyone else tried gradually cutting out wheat rather than going "cold turkey?" Any tips? My neurologist recommended trying the gluten free diet since he said he's had a lot of patients who have had success with it, although my seizures have become stable.
 

Nakamova

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Maybe you consumed some gluten recently without being aware of it (it can be a hidden ingredient).

It's interesting that you neuro recommended it although you were already stable. Was he hoping that you could reduce your medication as a result? It may be that gluten isn't necessarily an issue for you.

I think some folks have tried it when their seizures weren't being 100% controlled with medications, and/or when they have tested positive for coeliac disease or gluten-intolerance. Here are some CWE threads about it -- maybe they will help:
http://www.coping-with-epilepsy.com/forums/f39/controlling-seizures-raw-foods-5585/
http://www.coping-with-epilepsy.com/forums/f22/am-i-gluten-sensitive-16273/
http://www.coping-with-epilepsy.com/forums/f32/gluten-free-diet-no-seizures-8299/index3.html
http://www.coping-with-epilepsy.com/forums/f22/gluten-docs-seizures-good-news-5464/
http://www.coping-with-epilepsy.com/forums/f22/gluten-dairy-free-diets-2217/
 

masterjen

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I have celiac disease, and went "cold turkey" off of gluten because I had no choice. I did have issues with headaches/migraines, but they cleared after about 6 weeks. Part of your problem may be that you are "80-90%" gluten free. You are not eating gluten free until you are eating 100% gluten free. If gluten is indeed a cause or contributor to your symptoms, you need to go 100% off gluten. That takes a lot of careful label reading.
I note that you talk about going gluten free but only refer to wheat at one point. Be aware that gluten is in barley and rye as well, and the associated byproducts of wheat, barley and rye.
By the way, why did your neurologist not suggest being tested for celiac disease? If you have the condition, it will give you a heads up on just how careful you need to be (eg. can you eat a gluten free pizza at a regular pizza joint or not . . . those with celiac shouldn't, although some do). If you actually do have celiac, you will need to avoid this type of cross contamination everywhere meals are prepared, including in your own home. Also, there are other health conditions that can crop up due to having celiac, and if you don't have celiac it might be nice to know that you won't have to worry about those health issues or with minor amounts of cross contamination.
 

AlohaBird

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What you have is commonly known in Paleo circles as "The Low Carb Flu". By cutting out all the gluten products you also cut out your major source of carbs. Most westerners are on a carb based metabolism. A normal healthy metabolism can shift back and forth between burning carbs and burning fat for fuel.

To ease yourself into it, you might want to try adding a bit of some "safe starches" such as potatoes, sweet potatoes and other root veggies.

Or you could just tough it out. It feels awesome when you reach a fully ketone burning state. Feels like you are powered by rocket fuel.

The LC flu typically last 2 weeks to 1 month so you are almost there.
 

Joyful

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Has anyone heard about the book "Grain Brain?" It is written by Dr. David Perlnutter, a neurologist. He is completely against all grains b/c of the effect it has on the brain. Very close to paleo, only he allows cheese. Personally, I'm going paleo all the way to see if I can get off of these meds!
 

AlohaBird

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Has anyone heard about the book "Grain Brain?" It is written by Dr. David Perlmutter, a neurologist. He is completely against all grains b/c of the effect it has on the brain. Very close to paleo, only he allows cheese. Personally, I'm going paleo all the way to see if I can get off of these meds!
Yes, that is an excellent book. Another is "Wheat Belly" by Dr. William Davis.

Welcome to the paleo side. I'm doing paleo/GARD and having some great results getting off my meds. (GARD does insist on getting rid of the dairy while some paleo varieties let that slide).
 

Joyful

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I am still pretty new to paleo. I've been on it for about a week - no gluten or grains of any kind, no dairy, no legumes(including peanuts) and no processed foods. Oh, and lots of cocconut oil!

This is a major change for me - but I am adamant about this. Even though I've had epilepsy for over thirty years, I am still determined to get off of my medication. The main reason being that my husband and I still hope to concieve. Yeah, I know - I'm fighting the time clock! We do have a wonderful 12 yr. old son who we adopted at birth. I homeschool him.

I have been seeing a natropath dr. who has helped alot with herbal supplements. I hope this diet works. btw, what is the GUARD diet ?
 

AlohaBird

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Congrats on going paleo. Taking the leap. Good for you.

It's GARD. Stands for Glutamate, Aspartame Restricted Diet. Also stands for the Gut Absorption Recovery Diet. It is the brainchild of Dr. John Symes (website dogtorj.com) who is a veterinary doctor who has had amazing results with this for pet patients with epilepsy and then their humans who had epilepsy started trying it too with equally wonderful results.

His idea is that four main foods that make up 70-80% of the average American diet (as measured by calories) are the ones causing most of the problems.
These four are gluten grains, corn, soy (and all the other beans except green) and cow dairy products. His contention is that these four gum up and ultimately damage the villi on the inside of the small intestine where nutrients are supposed to be absorbed. This leads to all kinds of nutrient deficiencies no matter how healthy you may think your diet is.

If you give your gut a break from these four, it will be able to repair itself. How fast and how well depends on how much damage you have done I suppose.

He is also very adamant about cutting out all sources of glutamate and aspartame. Those big four foods are very high in glutamate plus any MSG or "natural flavorings" (yeahright) are out as are any fake sweetener sources.

So it ends up being very close to paleo but it doesn't concern itself with counting carbs. It does strive to have the most nutrient dense foods so that is paleo.

Check out the website. There is a lot more to it. This is just the thumbnail.
 
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Joyful

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Sounds like I've been doing GUARD and just didn't realize it - not too sure. I'm doing paleo, but there is no counting of calories or anything. I just avoid certain foods. I will check out the website, thanks.

btw, your dog looks sweet. What's his name?
 

AlohaBird

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Thanks, that's Valentino and he is a seizure alert dog. More than just a pretty face.
 

Joyful

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How wonderful ! I hope you don't mind me asking, but do you experience auras of any type? I do.

It is really hard to describe - it's like a wave of confusion washes over me, accoppanied by a feeling of anxiety, plus - sometimes I get goosebumps on my ams and legs along with it.

Whenever this happens, I know I will have a seizure either w/in minutes, hours, or even the next day.
 

AlohaBird

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My Seizures are only nocturnal so sometimes my auras are in a really confusing twilight zone between asleep and awake. That's where Valentino helps out. He wakes me up and if I can get all the way awake fast enough I can sometimes stop the seizure from going full blown TC.
 
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