I have battled several autoimmune and neurological conditions that are triggered by food and other factors for over 50 years. It took most of my life to reach not one, but all of my diagnoses. Each condition blurred the lines of the others, creating a confusing and unimaginable scenario that no doctor could have ever guessed.
My symptoms started in childhood with joint pain, fatigue, fainting, low weight, and respiratory and dermatological issues. Minor to major symptoms would come and go, but by my 30s, following pre-term labor, many symptoms began to linger longer with greater frequency, such as vomiting, asthma, eczema, fainting, numbness in my legs, high blood pressure, and an intolerance to most everything I ate.
My symptom list was so long, I used charts to keep track of them. Doctors would tell me the symptoms were psychological or that nothing could be wrong since the lab tests were all normal. It wasn’t until I was diagnosed with Celiac disease in my 40s that the diagnoses odyssey finally started. Little did I or my doctors know, Celiac disease would turn out to be the easiest of my health problems.
Celiac disease affects 1 in 100 people. Celiac disease starts as a hypersensitivity to gluten in the small intestine that leading to difficulty in digesting food and dozens of other physiological symptoms.
After starting a strict gluten-free diet, my gastrointestinal symptoms raged forward. By my 50s, I was also diagnosed with Eosinophilic esophagitis (EoE) and irritable bowel syndrome–all of which are managed by a combination of dietary restrictions, a low FODMAP diet, and Dupixent. Before Dupixent was approved by the Food and Drug Administration to treat EoE, I was weighing less than 110 pounds. I received a compassionate-use approval and eventually regained my weight. Oddly, my vision improved during the height of my struggle with EoE. I also continued to battle debilitating leg cramps and numbness, anesthesia intolerance, and symptoms after eating salty and high-carbohydrate foods. Again, doctors dismissed the other concerns.
Eosinophilic esophagitis (EoE) affects approximately 1 in 2,000 people. EoE is a chronic, non-IgE mediated immune system disease where white blood cells build up in the esophagus, causing inflammation and damage from food allergies.
By my 50s, I was diagnosed with two troubling neurological conditions: idiopathic intracranial hypertension (IIH) and hypokalemic periodic paralysis (HypoPP). IIH is sometimes discovered when patients begin to have vision symptoms while gaining weight–as was the case for me. While there isn’t a consensus on whether my IIH and HypoPP are independent conditions or even whether the combination of several of my conditions are the result of an unknown disease, the two neurological conditions turned out to be even more troubling than my gastrointestinal conditions. It’s common for IIH and HypoPP patients to have symptoms that resemble a stroke, muscular sclerosis, brain tumors, and seizure disorders. My IIH is managed by maintaining an ideal weight, and like many other patients, it’s helpful when I follow a low-tyramine diet.
Idiopathic intracranial hypertension (IIH) is a rare condition with an overall incidence of about 1–3 cases per 100,000 people annually, though it is increasing due to rising obesity rates. Only about 4% of IIH cases include patients with a normal weight– placing my case among the rare of the rare. Hypokalemic periodic paralysis is a rare genetic channelopathy with an estimated prevalence of 1 in 100,000 people. It causes episodic muscle attacks that are often triggered by high-carbohydrate meals, sodium, and/or rest after exercise that is relieved by, among other things, potassium supplementation.
Finally knowing the cause of my symptoms after decades of feeling awfully alone and misunderstood was one of the most liberating feelings in the world. Though I felt overwhelmed by learning to manage so many triggers, I accepted that I am also a part of the multidisciplinary medical team to save myself.
I couldn’t give up. I had to find more allies who want to share information and advocate for greater awareness of a variety of rare diseases—working together is our only hope. I joined patient advocacy groups and started participating in events to promote research on my conditions. I’ve learned that the more blank, starry-eyed looks I get from healthcare professionals, the more I know we should ask the scientific experts who speak at the health conferences hard questions about why some conditions cluster in multiples among some patients (and their families) and whether some diseases are actually part of a spectrum of diseases caused by the same pathway or genetic mutation. Yes, the situation is huge and overwhelming, but you can’t eat a whole apple at once—no pun intended.
About the Author: This article was written by Feather, who has been living with multiple autoimmune and neurological conditions for over 50 years. She is active with several stakeholder groups to advocate for the needs of individuals with rare diseases. She lives with her family in Northern Virginia.
