Another reader, Meg, shares her non-diagnosed but very real experience as someone “who is non-celiac but has benefited from a gluten-free diet”:
I think we enjoy sharing our stories because it is so incredulous to even us that an innocent cereal grain we enjoyed our whole lives could be the root of so much trouble. We wonder how we ourselves could be unobjectionably afflicted by a gluten intolerance at the same time the “gluten-free movement” is gaining so much traction. Yet the evidence is there. We don’t have answers, but we know it to be true.
For me, it started with a series of gradual and strange ailments at age 34: pancreatitis; shooting pains in my hands and feet and other joint pain; and finally, trigeminal neuralgia. This last one was the worst pain imaginable, like a searing frozen knife jabbing my left temple, cheekbone, teeth, and ear.
I sought doctors for each issue and each validated my pain [CB note: Here’s a contrasting series of reader stories], but they could find no underlying issue. It was a nightmare for me, and confusing and scary for my husband. Before all of this, I didn’t even have a primary care doctor. Within months, I had a half-dozen specialists and a clinical therapist.
The breakthrough came when I googled all of my symptoms together in one search. What resulted, a dozen times over, was not celiac disease (which hadn’t yet occurred to me) but MS. This was actually a relief—a matter-of-fact explanation for all of my symptoms.
An MRI had already been scheduled a few weeks away for the trigeminal neuralgia, and I assumed if I had MS, the MRI would show it. When I told my husband about my suspicions, it was with hope. Finally, possibly, a reason for all of this, and maybe medication to help manage the symptoms.
My husband gets full credit for the next part. He asked me if I’d heard of the Wahls Protocol—basically a diet free of dairy, grains, beans, sugar and everything else good in life, advocated by a doctor who followed it to manage her own MS. [CB note: Here’s a Q&A with Terry Wahls.] I’d never heard of the Wahls Protocol and was skeptical, but my hubs had lived with my agony for so long, I thought I owed it to him to try anything.
Three days later, the head pain had lightened significantly. Two days after that, it was all but gone. It was like a weighted torture helmet had been removed. The pain had been with me every day for about seven months and it was now gone. I was light as air. I smiled. I LAUGHED.
My first thought was: Okay, I don’t have MS. The Wahls Protocol might indeed be helpful to those with MS, but it couldn’t work so quickly. It had to be something I was eating or not eating. I tested food back into my diet and lo and behold: tinges of the facial pain returned about 20 minutes after eating wheat, and took a couple days to fully disappear.
It’s been about 18 months since that last incredible slice of pizza. I’ve accidentally eaten wheat a few times and have suffered a return of all the symptoms each time. My body is healing slowly but surely. Seldom, the pains come back when I haven’t eaten anything with gluten, or at least I don’t think I have. I can’t explain that. I don’t pretend to understand this any better than I do. I have tested negative for celiac. I just know that I won’t eat gluten again until medicine catches up with whatever it is that caused the worst time period in my entire life. (And I hope it’s an easy fix, because I miss real pizza so, so much.)
That’s my story and I’m sorry it’s a long one. Thanks for letting me share it and for publishing other stories like mine. The non-celiac GF lifestyle can be kind of isolating!
Update from another reader, who had a feeling in her knees:
I grew up in NYC and my diet consisted on bagels and pizza for my first 24 years. In my early 20s I started to have swelling in my knees. A knee would swell (a lot), then it would go away. As the issue resolved itself, I was frequently advised against any intervention. (I am a physical therapist so I have always had a relationship with orthopedists.)
In my 30s, the swelling started to NOT resolve on its own, and I frequently needed a knee drained and/or injected with cortisone. I could have one knee or the other drained 5-10 times a year … and I am talking about significant synovial fluid build up. I stopped squatting, kneeling, putting my knee on my treatment table, doing some Yoga poses. Even a few seconds of kneeling on a soft surface would result in grapefruit sized knees the next day. I began taking anti-inflammatories, which I got as free samples from an orthopedist friend.
Five years ago, he told me he could no longer give me the free samples, since the drug company was not giving them to him. The Celebrex I was taking cost $7+ /pill and I started the process of getting it from a Canadian pharmacy for 1/6 the price. I was taking about 15 a month.
In the meantime, I thought maybe I should try something dietary. I am already a vegetarian, I don’t eat junk food, but I do love my chocolate and bread. Sugar and flour are two things I have always called “white death,” as they are completely without nutritional value. I couldn’t bear the thought of not having chocolate, so I decided to stop eating wheat: no bread, no pasta, no pizza, no cookies. I had actually hoped that nothing would come of it.
It’s been over five years and I have had one knee drained only once, and I’ve taken just a few Celebrex for my knees. I do kneel a bit in my work, although this is not a good thing to do to knees in general, so I limit my kneeling time.
Amazing. I’m thrilled, my orthopedist is thrilled. My knees are happy. There are times I miss really good bread, but not enough to have really bad knees.