Gluten and MS: Anecdotal Cure?

The evidence suggests that I have been living with multiple sclerosis since 2000, though I wasn’t officially diagnosed until 2005. Twenty years with a deteriorating neurological condition is a long time, but let’s talk about what a difference those years can make.

At Christmas in 2000, I was sitting on the floor wrapping presents.

One of them was a little large and slightly heavy. When I pulled it to me, my back objected. A lot.

So I did what people do. I whined for a day or two and then I went to the chiropractor.

The first couple treatments helped, but after the third one, I got that pins and needles feeling in my right foot, like I’d held it in the wrong position and it was asleep. But it didn’t go away.

I stopped going to chiropractor immediately and made an appointment with my primary care doctor. He chastised me for seeing a chiropractor, all but calling them quacks, and ordered a bunch of expensive tests. I had good insurance at the time.

I got a couple different back x-rays, some muscle relaxants and a bunch of lectures.

Turns out, I had some spinal issues I didn’t know about. I was apparently born with spina bifida occulta, meaning my spinal column isn’t quite as sheathed in bone as it should be. I also had some spots on the spine that turned out to be related, blood vessels that looked like sticky spaghetti.

And I had an extra lumbar vertebrae. You should have five. I have six. I like to joke that’s where my tail was supposed to be attached.

My primary care doctor sent me to a spinal surgeon who told me I had no need to see him for the next thirty years or so.

Multiple Sclerosis?

After seeing the surgeon and getting no answers, my primary care doctor said another explanation might be multiple sclerosis.

I was terrified.

I’m also a bit claustrophobic so when presented with the option of a closed MRI or an open MRI, I opted for the open one.

No one told me that, at the time, an open MRI was considered less clear and sub-optimal.

So I got my MRI, and the radiologist proclaimed my scans to be normal.

At first, I was thrilled. After all, multiple sclerosis was a death sentence, right?

But I still couldn’t feel my foot most of the time.

Looking for answers, I continued to see my primary care physician. He decided that it was likely just sciatica and that what I really needed to do was to start practicing tai chi and lose 20 pounds.

That probably sounds familiar to every woman, maybe every person, who has ever had to talk to a doctor about a hard to diagnose medical condition. Somehow, it always comes down to weight.

How exactly was 20 extra pounds causing my nerves to fail?

I wasn’t brave enough to ask that.

Instead I took the prescription for muscle relaxers, though I didn’t want to take them, and decided I was stuck with pain for the rest of my life.

I tried, mostly half-heartedly, to lose the weight.

The problem was I could no longer trust my body to do the things I wanted to do. I tried playing tennis with a friend and my leg would collapse when I moved to the right.

Walking for any real distance, or even standing for long periods of time became painful. And I accepted it because it was “just sciatica.”

Getting a real diagnosis

In May, 2005, my husband and I went on vacation to New Orleans, but I was in tears by the end of the first day.

My back seized so hard that I bruised myself trying to massage the knot out. My husband encouraged me to find a new doctor and get a better diagnosis.

But we had changed jobs and no longer had stellar insurance, so I thought about delaying it.

My body had other plans.

A week after our vacation, I was driving to work when I suddenly had double vision. I had to close one eye to drive and then immediately talked to an eye doctor I worked with.

Dr. Ortiz was a co-worker and a friend, so he offered me several different plausible explanations for the problem. By my choice, we tested them from least serious to most serious, starting with blood sugar issues.

When it wasn’t a sign of diabetes, we moved to muscle entrapment or other muscular explanations. The double vision subsided after a few days, but we kept looking for an answer. And in July, 2005, he sent me for a new MRI.

Hearing that I was claustrophobic, he told me he could prescribe a sedative if I needed it, but that a closed MRI was better for getting a good image. Wish someone had told me that before!

I had my MRI at 7 a.m. Just before noon, we received the fax from the hospital containing the radiologist’s report. The exact language is not something I remember except for the phrase “lesions consistent with multiple sclerosis.”

Of course at the time, the MRI was not the final tool for a clinical diagnosis. I had to have a lumbar puncture, sometimes called a spinal tap, and wait for the final diagnosis, but at least I finally knew.

And knowing was better, right?

Treatment worse than the disease?

My neurologist immediately started me on treatment for multiple sclerosis, a beta interferon using the brand name Avonex.

And it was the worst.

To be fair, I suspect the progression of the disease had more to do with my utter hopelessness at the diagnosis. But I had horrible reactions to the drug.

I could no longer sleep all night because I had bladder control issues. I was tired all the time. I had migraine headaches for the first time in my life. And I still couldn’t feel my foot. In fact, the pins and needles had progressed all the way to my right knee.

I got the shot every week and then lost the next 24 to 36 hours to “flu-like symptoms” — usually a massive headache, nausea and a desire to sleep.

The neurologist wanted to put me on other medications to treat the side effects of the main medication. I resisted taking medication to make it easier to take medicine.

I attended an information seminar about the disease, one sponsored by a pharmaceutical company, and was convinced I would end up in a wheelchair by the time I was 40.

I couldn’t walk more than 1/4 mile without stumbling and falling.

My quality of life plummeted.

I stopped taking the Avonex when it started affecting my liver functions and then refused to go on something else that would just have a different batch of side effects.

I decided I would rather deal with the disability caused by the disease than deal with the treatments.

Fortunately, my husband is even more stubborn than I am and decided he wasn’t quite ready for me to end up in that wheelchair.

We tried various diets, but they seemed to make things worse,not better. Exercise was frustrating and painful.

Then, he found it.

Anecdotal stories from the United Kingdom that some people found giving up gluten made their multiple sclerosis better.

One person claimed she went from needing a wheelchair to running marathons. I was skeptical but it couldn’t hurt.

So we tried it.

Going gluten free in 2009 was a lot more difficult than it is now. Almost none of the gluten free options that line store shelves were available then.

We scoured our cupboards and gave away pastas and breads and soups and sauces and all types of weird things that used flour as a thickening agent. We learned to mix non-wheat flours to make baked goods before ultimately deciding it was easier to live without most of those things.

We found substitutes, using rice instead of pasta for most dishes and cooking from scratch to avoid gluten sneaking into our food accidentally.

It was hard, very hard, at first and we almost concluded that it wasn’t worth the effort.

Then I went to get the mail.

Nothing special, something I did every day. Walk across the dirt road to get the mail out of the box on the other side.

But then I stepped on a rock. It was sharp enough that it poked my foot through my shoe.

And by the time I got back inside, I was in tears.

I’m sure I didn’t make much sense when I told my husband I hurt my foot and was laughing and crying about it.

He stared.

“I felt it.”

It was the first time in almost nine years that something as small as a rock got through the pins and needles to register pain. I was ecstatic.

You’d think that after not feeling my lower leg and foot for so long, I would have realized that the had feeling again. But the truth of the matter is it took a rock to make me feel it.

Since then, it’s been easier, most of the time. We had to adjust our eating habits, completely.

And over the next decade plus, I had to try to get confidence back in my body. I still don’t trust that right foot a lot of the time, but it’s better than it was when this all began.

In 2018, almost a decade after starting our gluten free experiment and getting down to needing support to walk more than a quarter mile, we went to Ireland and United Kingdom. Our first day there, we walked almost 10 miles.

That week, we walked 80 miles. I was limping and sore by the time we headed home, but I did it.

The final day we were in Ireland, I discussed my MS with our innkeeper. He’d lost a relative to the disease and told me that Ireland has the highest incidence of multiple sclerosis of any nation.

That was before I knew how much of my ancestry is Irish.

So is going gluten-free a miracle cure for MS?

Probably not. It doesn’t work for everyone. It didn’t help my mother whose MS is a mirror of my own.

My neurologist says she can’t imagine that it hurts me, because reducing inflammation is a good thing, but she scoffs at the idea that it is responsible for how much better I feel.

She might not believe me, but I know that when I decide just a little bit of gluten won’t hurt, it usually does. I stumble more and begin to lose my balance again.

Being gluten-free now is easier than it was. I can go out to eat again and get gluten free options. I can buy gluten free pasta in pretty much any grocery store. I can find gluten free snacks.

It’s not for everyone. My mother hated it.

But for me, going gluten free was the best health decision I ever made.