Patti came to our offices with her daughter and she’d written “Everything hurts” on our patient intake form. As she rose from the waiting room chair, her face grimaced in pain. Patti was middle-aged and seriously overweight. If there’d ever been a spring in her step, it had vanished long ago.
Patti said she’d been diagnosed with rheumatoid arthritis (RA) several years back. First her hands and wrists had been affected, but gradually the pain and stiffness moved to her feet and then to the larger joints and her spine.
Despite the pain, her x rays showed no problems. Her rheumatologist had told her this was fortunate because, as painful as her condition was, there’d been no damage to any of her joints. He attributed this lack of damage to the medications they’d prescribed and the fact that her rheumatoid blood tests had remained negative throughout the years. They called Patti’s condition seronegative rheumatoid arthritis.
When seronegative rheumatoid arthritis (SNRA) was recognized as a variation of regular RA some years ago, doctors didn’t quite know what to do with it. SNRA behaved like RA but lacked the positive blood test results needed to firm up the diagnosis.
Doctors observed that, over time, untreated SNRA generally got worse and some people went on to develop joint deformity and gradual loss of function. On the plus side, most people did respond to the usual RA menu of treatments: anti-inflammatory medications (NSAIDS) and later the disease-modifying antirheumatic drugs (DMARDS) and ultimately the injectable DMARD biologics, which block specific inflammatory pathways but also suppress your immune system and can increase your risk for infection.
But nothing worked for Patti
Her rheumatologists (she had seen several of them over the years out of frustration) had done everything by the book. They’d started with NSAIDs, then moved to methotrexate, the original DMARD originally developed in the 1950s for certain cancers and later found useful (and inexpensive) for autoimmune disease.
But Patti’s response to any new medication followed a pattern familiar to doctors. The med started out well, but within a few weeks she’d be back to square one.
Whether you want to call this a placebo response or simply wishful thinking on the part of both patient and physician makes little difference. Probably the patient so wants to feel better that her body starts to release its own feel-good chemicals and the new medication seems miraculous. But you can’t fool mother nature.
So her rheumatologists brought in the big guns, the injectable DMARD biologics. Humira, the biggest selling drug in the US (now surpassing $13.6 billion in annual sales), costs about $5,000 a month. The others, like Enbrel and Remicade, are variations with equal prices.
Over three years, Patti had been on four different DMARDS and her response had been the same: useful for a few weeks before her pain returned.
Patti’s cravings a factor
Because she was obese, even the most amateur diagnostician could guess that food might be playing an important role in her illness. Naturopathic physicians and nutritionists are far more focused on food sensitivity issues than conventional doctors. Many years ago, attending a naturopathic medical meeting held in some sensible state that licenses naturopaths, I learned that the food most craved is usually the culprit of any chronic illness.
When I began asking Patti about her eating habits, I never thought making a diagnosis would be so simple. I asked if she’d ever eaten anything that worsened her pain. “Bread. Oh, and pasta, too.”
“Are there any foods you really crave?”
Patti, reddening. “Bread. Nice warm bread, right out of the oven.”
At this point her daughter burst in. “Mom, tell him what happened with the French bread!”
Patti: “It was incredibly good. Warm, perfect. I ate the whole loaf…and I thought I was going to die my joints hurt so much.”
Her diagnosis, so obvious as I write this now, had been delayed for three reasons:
–Most conventional physicians pay little attention to the potential toxicity of foods.
–Having tested her for celiac disease (negative), her doctors felt there was no reason to advise her to curtail gluten foods.
–Patti, literally addicted to wheat, never thought to mention it.
The French, their bread, and denial of gluten sensitivity
Pondering Patti’s passion, I had to agree that no one bakes like the French. Everything you see in a French bakery is handmade and produced fresh that day. The French government actually has strict laws about bread preparation, a cultural imperative we don’t see in the US. I was surprised, but maybe not so surprised, to learn that except for proven celiac disease, gluten-related illness (called non-celiac gluten sensitivity) is virtually unacknowledged in France.
The result is that virtually all of France is in a state of denial about gluten sensitivity, though this is slowly changing. Most physicians have never heard of it. Gluten-free sections of bakeries and grocery stores are almost non-existent. Since it’s estimated that ten percent of any population has some degree of gluten sensitivity, it’s reasonable to assume that ten percent of the French are walking around in constant pain, buttering their croissants, bicycling home with baguettes, and being told by their physicians that their tests are normal and there’s nothing’s wrong with them even though they feel lousy.
Being in constant pain can make anyone testy and irritable, which, let’s face it, is how many of us perceive the French.
Good news, bad news
First I gave Patti the good news. I told her I thought she could get tremendous relief very quickly without any additional tests or drugs. She and her daughter smiled broadly.
The bad news was that until her next visit, she needed to be 100% gluten-free. Not a mouthful. Worried looks greeted this news.
In fact their changes in expression were so distinct they reminded me of the comic-tragic theatrical masks familiar to us all.
Her daughter piped up. “Come on, mom! I’ll support you–I’ll even do it with you!” And off they went.
Four weeks later, a very pleased Patti came into the office. Not only had she lost nine pounds, but she felt better than she had in years. Up until a few days ago, her pain had cleared almost completely.
“Hmmm,” I asked. “What happened a few days ago?”
Prone to reddening, I knew her answer before her confession. “I couldn’t help it. The bread smelled so good.”
“It was horrible. Every joint hurt so much I couldn’t move.”
David Edelberg, MD