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.