Gluten Free to Fight Multiple Sclerosis

Five years after I as diagnosed with multiple sclerosis, my quality of life was rapidly deteriorating and I often had trouble walking.

My balance was off kilter most of the time and the other side effects from the disease, everything from bladder control issues to the infamous MS hug, were making me miserable.

Worst of all, I had attended an informational session by one of the pharmaceutical companies that made a multiple sclerosis treatment and I was terrified.

Many people with the disease, they said, end up in a wheelchair within the first five years after diagnosis.

I knew that being in a wheelchair wouldn't be the end of my life, but it certainly felt like it would. I'm not good with being confined or being subject to someone else's time frame. If I were confined to a wheelchair, I'd likely be unable to drive or go anywhere without assistance.

That sounded like pure hell.

So my husband and I tried a bunch of different things to try to forestall the disease.

We joined a gym and worked at weight training, about the only form of exercise that didn't risk me hurting myself when my leg randomly decided not to work.

We tried various diets -- Mediterranean, Atkins, high fiber and low fat -- all with minimal success.

I tried to force myself to walk more, thinking that if I did it more, I'd be less likely to lose my mobility.

And because of the balance issues, I was almost always bruised, usually on my hands and knees from falling so much.

The one thing I didn't want to do was go back to one of the conventional MS treatments. I'd been on one for about three years right after I was diagnosed and it came with its own side effects.

The beta interferon treatment gave me migraine headaches for the first time in my life. I couldn't sleep through the night. And yet after every shot, which happened once a week, I was so exhausted I'd sleep for the next 24 to 36 hours.

It also began damaging my liver.

I was close to hopeless and had made an appointment with the neurologist to look at new treatment options because nothing else seemed to be helping.

Then, in a last minute spat of research after searching for months, my husband found some testimonials from the United Kingdom with people claiming that going gluten free helped their multiple sclerosis. One woman even claimed she went from using a wheelchair to running marathons.

While that claim seemed outlandish, we figured it couldn't hurt to try.

We scoured the cupboards and removed anything with even trace levels of gluten. We studied all the sneaky ways it is added to foods, like masquerading as vegetable protein, and in October, 2009, we decided to go gluten free.

It sucked.

We were used to grabbing a sandwich for lunch or maybe a burrito, but both were suddenly off the menu. Many forms of soup were disallowed because they used wheat flour as a thickening agent. Just about anything except a salad was no longer an option at most restaurants as even French fries often had a flour coating.

We tried buying gluten free bread. It was like eating slices of cardboard.

Gluten free pasta was usually made with rice flour and either disintegrated when you boiled it or turned into a large gummy ball.

And most of the time, you could only get gluten free groceries at specialty stores.

Thank goodness all of that has changed.

We'd been gluten free for just short of a month when it suddenly became worth it.

We worked from home and my husband is a night owl; I work the morning shift and he takes the evenings.

One of the first things I did most mornings was walk across the road and grab the mail.

The road we lived on was oil and chip, basically hard packed stones with a little bit of liquid tar to hold them together. Think a half step up from a dirt road.

As I crossed the road, one particular rock was coming loose, forming a jagged edge. I stepped on it and yelped in pain. And in that minute I knew the gluten free diet was working.

Almost a decade earlier, before I ever got my official MS diagnosis, I'd started having pins and needles in my right foot.

It had gotten progressively worse and by the fall of 2009, I hadn't had much sensation at all in my right leg from the knee down for years. I could step on a pin in my bare feet and not notice it until I saw the blood. My right foot was my enemy, untrustworthy to bear my weight or know exactly how high I had to lift it to take a step up.

When I stepped on the rock, I started crying almost immediately. Not because it hurt, which it did a little, but because I could feel it.

I tested the theory as I went back in the house, stopping for just a second to stand on one foot, my right foot. I hadn't been able to do that in years.

It didn't collapse on me.

I rushed in to my husband who was sleeping and shook him awake. He was startled by the fact that I was laughing and crying.

"I stepped on a rock."

He looked at me like I was nuts.

"I stepped on a rock and I felt it."

We focus on remembering that feeling whenever being gluten free seems extra hard.

My doctors, neurologists and primary care, have scoffed over the years, though most of them have agreed it isn't hurting anything for us to be gluten free. But none of them give our diet credit for the life-changing effect it had.

Most of the time, they'll nod and say "You have relapse and remitting multiple sclerosis. You were just in a bad relapse at that point and are now in remission."

I'd agreed, except that remission has now lasted more than 11 years.

And I can force my MS to be more visible if I do something like stupid, like eat gluten for several days in a row. Making exceptions for holidays or special events is something I can do; my celiac friends cannot.

But if I make an exception for Thanksgiving, and then for leftovers and then for holiday cookies, I'll be stumbling again in no time.

I know this and carefully spread out my cheat days.

And I know that no matter what the doctors think, the diet makes a difference.

Thirteen years after my diagnosis and 9 years after going gluten free, I went to Ireland. Between walking through the airports and walking around Dublin, I walked more than 9 miles my first day there.

Before we went gluten free, I couldn't walk through the grocery store without a cart for stabilization and support.

My doctors keep telling me that the MS treatments have improved since my days of Avonex and massive side effects, but I'm not interested.

For me, diet, massage and regular exercise, mostly weight-lifting of one form or another, have been what I need to combat my multiple sclerosis. Thanks to those three things, I have full feeling in my foot and with it, the freedom to do the things I love,