Walk with me into the grocer as I pick up some healthy items. Stroll right past the spinach, peppers, berries, and ginger. Continue past the vitamin and supplement aisles, and for good measure cruise right past the yummy teas and spices. Cross off the popular kids in nutrition: agave, soy, turmeric, spirulina, stevia, flax, guarana, chicory, monk fruit, quinoa, apple cider vinegar, fermented foods, yogurt, and whole grain anything.
Reach over the dark leafy greens and select Iceberg lettuce and the white cabbage, not red. Pick up some white rice, heavens no — not brown rice, nor anything with a hull or seed. Skip the wine and the craft beer. And oh, those organic cosmetic products look soooo soothing, but wait — they contain resveratrol, aloe vera, willow bark, calendula, and rosehips. If you’re sensing a pattern here, this is what it’s like to live with Salicylate Sensitivity.
Nearly two years ago, I ended up in fight or flight mode in the emergency department with an allergic reaction. The culprits: a lovely strawberry and a popular new biologic drug. Television commercial actor Xeljanz (tofacitinib) for Rheumatoid Arthritis proved to be the catalyst that launched existing food and chemical sensitivities into the stratosphere (researchers, please take note). I had complete nasal blockage for four days, in which I could not draw air through my nasal passages and my blood pressure was low. I was sick with neurological symptoms for weeks: sunlight and breezes were uncomfortable, and my face was numb from forehead to chin.
Long story short, I underwent multiple allergy tests including the blood-based ALCAT, and dozens of intradermal skin tests (single item injections gauging my tolerance level for each food). I was the one who connected the dots: the only thing linking items such as strawberries, almonds, and rose essential oil was the pesky salicylate. Add in a decade of known aspirin and NSAID allergy, and it suddenly made sense.
Salicylates are chemicals that occur naturally in plants’ bark, leaves, roots, skin, and seeds that protect plants against diseases, insects, fungi, and harmful bacteria. They are also found in many medications, cosmetics, fragrances, household products, and preservatives. I have a history of unusual reactions to medications, foods, and chemicals, some going back to my teens. For the salicylate sensitive, the body rather reaches a lifetime limit and simply cannot process them.
My reactions are often grade 2 anaphylaxis, and include: shortness of breath, facial and nasal swelling, lip, mouth and facial numbness, flushing, syncope, heart palpitations, lips peeling, nose bleeds, skin discoloration, rash, urinary urgency and tinnitis. An odd effect of salicylates (SALS) has been that my hands would clench for days, leaving me intermittently unable to straighten my fingers. This symptom had greatly puzzled my rheumatologist, along with my perpetual, tender rib inflammation that is not costochondritis. If you are an autoimmune patient, I cannot emphasize enough that you should consider possibly a food intolerance adding to symptoms.
All of this underscores the fact that there is no one, true diet for each human body, and the word “hypoallergenic” is frankly, bullshit. “Healthy foods” is an oxymoron when applied to all humans. Our society is conditioned to believe that allergies consist of either: a) seasonal and dust mites, or b) the person who is at risk of death from often a single food allergy. There are far more types of allergies and sensitivities, and a host of possible symptoms. And yes, mine warrant that I carry Epinephrine.
I am often asked what CAN you eat? The standard response is the Meat, Potatoes & Water Diet for the SALS sensitive. Actually there are variances in levels of salicylate content in each plant based food, and each person will have a different threshold. Despite reactions and exhaustive testing I myself have continued to question, can this even be real? The answer time and again is unequivocally, YES. In the interest of what food “should be” healthy, I have tried to push the barriers, and find myself with serious reactive symptoms, and increased systemic pain and inflammation.
So how did this occur in me? The Oscar likely goes to Ehlers-Danlos Syndrome, and it’s supporting actors Mast Cell Activation Syndrome and Dysautonomia (often called the trifecta). My body simply reads things very differently, and hypersensitive reactions have nearly always been with me. I’ve had new doctors do an eye roll at my list of drug allergies, but more recently, the ER doctor brought the hospital pharmacist in four times to be certain their care was safe and adequate.
I am under the care of an excellent allergist/immunologist who works with a number of Ehlers-Danlos patients who have mast cell disorders. Even she was surprised to hear that I could smell mold in homes from the sidewalk, and that I was even having reactions to the plain baking soda I used as toothpaste. Salicylate Sensitivity was new to her, to my rheumatologist, to my nutritionist, and it was new to the world-class, last resort allergy clinic where I tested. There does seem to be a number of SALS sensitive people who also have mast cell disorders, and a few who have Ehlers-Danlos. Again, researchers please take note.
In the meantime, I am the girl who cooks with sea salt, fresh garlic, lemon juice, and technique to elicit flavor. I can get by with wee bits of dried spices, every few days. I can eat most meats, including chicken, beef, pork, lamb and shellfish, but am now allergic to fish, all nuts, most legumes, and every oil except canola. My staple foods are cauliflower, white cabbage, white potatoes, celery, shallots, figs, Bartlett pears, bananas, Golden Delicious apples, eggs, fresh dairy, limited wheat, rice, oatmeal and a lesser amount of carrots, onions, mushrooms, tomatoes, and watermelon. Coffee is high in salicylates, but I drew the line for my soul here, and enjoy two cups daily. I mean, I really, really enjoy them!
If this were not enough fun, I also live with Mast Cell Activation Syndrome that leaves me incredibly sensitive to sunlight, to heat, chemical odors, and to that fragrance you’re wearing. Not wearing fragrance? Ask your dryer sheets, shampoo, hairspray or deodorant if they are. I am the girl who uses very specific SALS-free cosmetic and personal care products by Cleure, and a handful of lightly scented goods. If I were to eliminate all fragrance under my roof, I would have greater difficulty in public places. I am also the girl who tosses junk mail quickly, as the ink odor makes me ill, along with new fabrics, and many synthetic products — including my new hairdryer! The great irony is that I feel best when in the fresh outdoors — I simply do not suffer seasonal allergies, it is about ingesting plant matter. For this I have the greatest gratitude, as nature is one of my huge joys, and my solace.
Having Rheumatoid Arthritis and Hashimoto’s also, I am in a bit of a spot medically. I can only tolerate limited medications, so it is a constant balancing, re-balancing, and a damn good bit of mettle. I adjust my sails and chart a new course. This life is not easy, but it has made me focus far more on life itself. There is so much beauty everywhere, and joy to be found or created each day. To that end, I am shifting my blog sails to focus more on interior design, and wild and bygone places that nourish my soul. Questions? Ask away. And I’d love to hear how you balance salicylate sensitivity, or your mast cell disorder.
“Mini-Mumps,” he declared. This doctor was not our first choice, but we lived in a one red light town. The preferred doctor was near retirement and did not accept new patients. So we saw Dr. Second Best and he declared that seven year old B, presenting with sudden sore throat, high fever, and severe headache, had Mini-Mumps. This malady was apparently his own construct. When I questioned that it seemed like Strep to which our family is prone, he dismissed my concerns. Instead, he tested her for Mononucleosis. As I type this today, I am floored all over again by how ludicrous the notion. I was a young mom at the time, and I could have never foreseen how pivotal and life-changing this illness and proper diagnosis would become.
Of course the Monospot test was negative, and Dr. Second Best prescribed antibiotics. Still, she continued to languish with throat pain, fever, and the swelling on her neck grew to a 2” diameter lump. She lost five pounds, developed sores at the corners of her mouth, and for the first time in her life was having spontaneous nosebleeds during the night. When she did not respond to the antibiotics, we took her to Dr. Next Town. He took one look at her and thought it was strep and clearly more serious. He contacted an ENT in Austin, 45 miles away and arranged an immediate appointment.
The ENT was very concerned about the significant lump on the side of her neck and did a fine needle aspiration and some scans. The lump was not a tumor, so we were not dealing with childhood cancer. We were grateful beyond words. After a one-week trial of Augmentin, the ENT admitted B for intravenous antibiotics. Though still tired, she did well in the hospital, as the heavy doses of antibiotics calmed the illness. However, the lump on her neck did not respond. So it was time for surgery. As it turned out, she had an abscessed lymph node. He had to drain the abscess, and B was sent home with a soft rubber tube protruding from the surgical wound to allow the final drainage. David and I had to wear our Perfectly Calm Parent Faces as we gently tugged at the rubber tube and cleaned the area as instructed.
B started Second Grade with the tube still in place, and wore a large gauze bandage around her neck. She answered the glaring questions, but was excited to see friends and to use that box of 48 crayons. She continued to take antibiotics until the tube was removed and the surgery declared a success. However, a short time later, strep returned. This time, we saw only Dr. Next Town who never hesitated to test for strep and treat her appropriately. She would complete a 10-day course, and two days later the strep would return. It became necessary to take a prophylactic approach and keep her on daily Amoxicillin.
One September morn at 2 a.m., B crawled to our room in terrible pain. Her ankles and wrists were locked. This was beyond our experience and we did our best to comfort her. We did not quite know what to think, and wondered — a reaction to surgery, another infection? Dr. Next Town saw her immediately, and once again arranged an immediate appointment with a very kind pediatric orthopedic surgeon.
The orthopedist ran labs and did a physical exam, noting a pinpoint red rash on her thighs, and the fact that her surgical wound was slow to heal. His immediate assessment was that this was a reactionary arthritis from the illness. Even after weeks of treatment and intravenous antibiotics, she still registered an elevated ASO titer (indicates recent Strep infection). Based on this and the collection of unusual symptoms, he declared that she had Rheumatic Fever. He referred B to a Pediatric Rheumatologist and prescribed liquid Advil in a fairly strong dose for a seven year old.
It brings tears to my eyes to think of the pain and stiffness B had in those early days, yet how usual and tough she remained. She immediately seemed to accept that “what is” had changed, far more easily than her parents. Kids are resilient like that. We parents have to remember to embrace that good cheer, and just quietly wipe away our tears. She would become stiff after sitting for periods of time, and her nightly bath seemed to escalate rather than relieve symptoms. After she bathed, I would help lift her out each night and wrap her in a thick, cozy towel. I donʼt believe she ever cried.
Sitting at her desk or cross-legged on the floor at story time was causing stiffness. So, I spoke with her teacher to explain what was going on. She was a tall, gray haired wife of a preacher, but failed the lesson on compassion. She suggested that B had enjoyed the attention of her hospital stay and surgery, and that she was trying to push my buttons. I am not making this up. This episode could comprise a blog post, but I’ll spare you the vitriol.
We waited four months to see a pediatric rheumatologist in Austin. During this time, B developed more pain areas including her hips and her rib joints. Her ribs would lock up and her hips would pop. As long as she remained on Advil, the symptoms were fairly controlled. Each time weʼd try to reduce the dosage, her pain and stiffness would increase. She would have good days and not so good days.
She saw Dr. Red Suit on a good day in January. This young pediatric rheumatologist wore stiletto heels and a bright red skirt and jacket to greet a seven year old. Not exactly warm and fuzzy. And it foretold the outcome of the appointment.
Dr. Red Suit examined B and peppered her with questions. When B had forgotten that her rib joints had been painfully locking up, the doctor lifted an eyebrow toward me. Her clinical notes would state that “the child could not recall rib pain.” I related to her that the orthopedist believed B had Rheumatic Fever, and she haughtily told me that she did not meet the Jones Criteria. This was 1992, and I would find out years later that the Jones Criteria were amended that very year. She did in fact meet the new criteria.
Revised Jones Criteria, 1992
Nor did Dr. Red Suit believe that B had any form of juvenile arthritis, and declared that she was simply hypermobile. She suggested we discontinue the Advil, though I explained the cause and effect each time weʼd try to lower the dosage. Dr. Red Suit did not order labs, nor did she find a follow-up appointment necessary. We were on our own.
As the years went by B would still have intermittent pains, stiffness, popping joints, and was prone to ankle sprains. We would refer to it as her “arthritis or whatever it is,” and she recalls finding it uncomfortable to sit at her desk for a full day of school. When she was ten I tried again, this time with an adult rheumatologist. I explained her history, the presumed Rheumatic Fever, and her intermittent but ongoing joint pain. I emphasized that we just wanted to know why this was still occurring. After the briefest of exams, Dr. Dismissal chastened me with, “You donʼt want your child to have arthritis.” No shit.
It would be fourteen years and several doctors later that B was diagnosed with Psoriatic Arthritis. This diagnosis was later amended to Undifferentiated Spondyloarthropathy, Rheumatoid Arthritis, and Sjogrenʼs Syndrome.