A three year old is so excited about his first soccer lesson that he sleeps in his new uniform the night before, but when he gets on the field he is slow, seems lost and walks off the field after 15 minutes saying he’s too tired. At his next and last soccer practice he bursts into tears the minute he starts running. A couple of weeks later he has trouble getting out of bed.
This three-year old, named Shepherd, has arthritis – juvenile idiopathic arthritis (JIA) – an autoimmune disease that can cause disability, stunted growth, even blindness. Arthritis is hammering both his knees and wrists and his left shoulder and elbow. He’s a stoic three year-old, denying he’s in pain but tearing up when the doctor touches his joints.
He’s put on a NSAID, naproxen, to battle the inflammation in his joints, but his arthritis worsens, the joints in his fingers and thumbs begin ballooning and nodules begin forming on his knuckles. He’s wetting his pants because his fingers hurt too much to pull his pants down when he goes to the bathroom.
The nodules suggest it’s time to put him on a serious drug called methotrexate, used in larger doses in chemotherapy, and smaller doses for autoimmune disorders. The list of potential side effects (liver damage, increased risk of lymphoma) is terrifying, but the doctor assures them that the drug is perfectly safe at this dosage. Their son may experience nausea, dizziness and drowsiness, but his pain should ease; it’s a good tradeoff, but their doctor expects their son will be on this drug for life.
That gives the mother pause, and one day, out of the blue, she calls the friend of a friend who’s arthritic son went into remission using alternative medicine. Her son had repeatedly woken up screaming and crying a night since he was a month old.
A year and a half later they have a diagnosis. A massage therapist working in an integrative health department, and terrified at the idea of giving her son methotrexate, under the guidance of Dr. Leslie Mendoza Temple in Chicago, she takes an alternative health route. First a naturopath suggests a centuries old antiinflammatory concoction (four marvels). Then gluten, sugar and plants from the nightshade family are cut out. Probiotics (VSL-3), sour Montmorency cherry juice and 2,000 mgs.of omega-3 fish oils are in.
This integrative health worker didn’t believe a mysterious autoimmune process requiring a chemotherapeutic agent was the problem. She believed antibiotics and/or gluten or dairy sensitivity had trashed the integrity of her child’s gut lining, causing his gut to leak proteins and/or bacteria into his blood. The immune response to those proteins and/or bacteria was causing the inflammation that was attacking his joints. She noted that her kid had started crying a week after taking antibiotics. Had his gut lining gotten whacked by antibiotics that most children pass off with no problem? Nobody knew….but the timing was suspicious, and she was going to take the alternative route first.
Six weeks into his treatment her son’s pain started to lift. Three months later it was gone without him ever taking the chemotherapy drug, his doctor suspected he was going to be on for the rest of his life. Two years later he is still in remission.
Meanwhile, Shepherd was not growing normally, was sobbing in the middle of the night, and now had arthritis in his toes. His doctor wanted to increase his methotrexate, was happy for Walker to try the supplements but opposed to cutting gluten and dairy out of his diet.
With her husband backing the doctor, they compromise; Shane will stay on methotrexate and they will go full bore on the alternative regime. Five weeks later, Shepherd is worse, and his parents are a wreck…While Shepherd is spending entire days on his mothers lap, questions over the right course to take cause his parents to bicker and sleep poorly.
They get a second opinion from the director of pediatric rheumatology at Columbia who suggests they double the dose of methotrexate. Dietary changes, she flatly said did not work. Now the father, seeing no progress with his son, pushes hard to double his dose of methotrexate and warns their marriage could be in trouble. The mother holds firm but shaken by everything, manages to have her purse and suitcase stolen, then gets in a car accident. She promptly signs up to see a therapist. Their marriage and their lives are being pummeled by their child’s illness.
“Mommy, my knees don’t hurt anymore”
Six weeks, to the day remarkably, since beginning the no dairy, gluten, etc. regime Shepherd wakes up and says “Mommy, my knees don’t hurt anymore”. Over the next several months, his arthritis pain disappears.
He starts to grow again. He runs without pain. He’s has no less than 5 remissions over the period of a year, but each, two after antibiotics and three after eating gluten, can be explained.
It turns out that he’s incredibly sensitive to gluten; just a few bites of a sandwich can leave him in pain for as long as two weeks.
This is not to say that methotrexate doesn’t work; it does work in many kids, but the problem for this child was clearly diet. The Director of Pediatrics at Columbia isn’t buying the that idea at all, but their primary doctor is more open stating “I’m mystified by children on a daily basis”.
The Diet Blog Series
This blog is part of a series of blogs highlighting the effect diet can have on health. Recently we saw a woman with several autoimmune disorders who was able to get back to 80% through diet and supplements. This young boy eluded a lifetime of suffering simply by altering his diet. These blogs are not to suggest that dietary changes will have a dramatic effect in most people with ME/CFS; but to highlight the possibility for some they could. They are a powerful option to check out.
The Six Week Rule
You need to stay on a diet for six weeks to know if it will help – Dr. Nancy Klimas
For myself, I’m a bit haunted by the six-week rule. My jaw dropped when I heard Dr. Klimas say you need to be on a diet for six weeks. A week or two on a new diet has always been enough for me to tick off the dietary approach. My physicians, though, have always treated diet as a sidenote. None has insisted on dietary changes, and I’ve never been tested for gluten sensitivity or celiac disease. My diet knocks most other people’s out of the park but is it good enough for me? I wonder.
Finding that my knee flared up when I started eating a lot of tomatoes from the garden, and then flared back down when I stopped eating them has helped to put diet back on the front burner for me. Right now I can click off at least four things – sweets, brown rice, soy and potatoes that tend to put me sleep…which I continue to keep eating. (I am now off gluten :)).
Inflammation, Diet and Chronic Fatigue Syndrome (ME/CFS)
Lets a bit deeper look at the gut inflammation idea. It turns out that four different kinds of arthritis are associated with inflammatory responses in the gut including a gluten based one. Diagnosing celiac disease, as we re seeing in Niki Gratix’s blogs on Health Rising, can be tricky. The young boy, Shepherd, was as sensitive to celiac as could be, but a blood test was negative.
The blood isn’t the gut, however, and one study that found antibodies to food in the gut but not the blood, suggests doctors may have to go directly to the gut to get real answers.
The gut-inflammation connection is growing. Researchers are beginning to identify specific gut bacteria that may predispose patients to rheumatoid arthritis. They can turn RA free mice into RA mice simply by inserting bacteria in their guts.
Probably more important than single bacteria, however, are bacterial communities. Like the herpesviruses most healthy people are able to keep under control, ‘bad bacteria’ are already present in our guts. When our bacterial composition shifts, inflammation promoting bacteria can become ascendant creating a ‘fire in the gut’ as Niki Gratix calls it, that feeds inflammation not just in the gut but across the body.
The CFIDS Associations pilot gut microbiome study suggests people with ME/CFS have different bacterial communities than healthy people, and that exercise may exacerbate those differences. It’s becoming clearer and clearer the gut plays at least some role in ME/CFS/FM, and that a multi-pronged treatment approach including the gut makes sense.
The remarkable fact that gut symptoms aren’t necessary for a dysfunctional gut to be present ; that your gut could be whacking you without it being painful, is probably missed by many doctors.
- Dig Deeper: Celiac Disease, Gluten Sensitivity and Chronic Fatigue Syndrome: Pt I Misdiagnosis and Mortality
The gut, nevertheless, is frequently troubled in ME/CFS. IBS has become a more common complaint for me over time, but my lower gut has been sore to the touch since the beginning. I vividly remember Dr. Cheney saying, as I flinched while he probed that area, that lower gut sensitivity is very common in ME/CFS. Gut flora manipulation is in its infancy but we know that diet, probiotics, supplements, antibiotics and things like fecal transplantation can help. We’l b exploring these more in Ken’s and Niki’s blogs as time goes on.