March Autoimmune Disease Awareness Part IV...Celiac Disease and Vestibular Dysfunction

Gluten is a protein found in
Wheat, Barley and Rye

Several years ago,  Celiac Disease entered the life of my family. I had heard of it, but I really didn't know that much about it. All I knew was that it caused gastrointestinal problems, and was diagnosed with blood work and a biopsy of the small intestine. After doing a little research, I discovered that Celiac Disease is a genetic, autoimmune disorder that affects approximately 1% of the population. When people with Celiac Disease ingest gluten (a protein found in wheat, rye, and barley), their bodies react adversely, which leads to damage of the small intestine. There is no cure for Celiac Disease, and the only treatment is a life-long, strict adherence to a gluten-free diet. As a family, we learned to read labels and cook new recipes that were gluten-free because we felt the best thing we could do was to educate ourselves and do our best to be supportive when we got together for family meals. But in my own household, my husband and I continued to enjoy delicious breads, fried chicken, gravy, pasta and casseroles, and that practice remained unchecked because, after all, we weren't affected by Celiac Disease...or so, we thought.

In 2010, after two years of almost constant upper abdominal pain, and an increase in intensity of the nausea that had come and gone throughout most of my life, my doctor finally referred me to a gastroenterologist. He recommended testing, which included an ultrasound, upper endoscopy with biopsies, and a Hidascan to check gallblader function; I was diagnosed with "inflammatory malabsorption" with patchy damage to my small intestine, and chronic inflammatory gallbladder disease without stones. In October, I underwent surgery to remove my gallbladder, which gave me some relief from the unrelenting upper right quadrant abdominal pain, but for the most part, the nausea remained. Within a few months, debilitating fatigue, severe joint pain, and rapid weight loss signaled a real problem with my health. To be honest, I was so relieved that I no longer had a constant stabbing pain in my gut, I failed to link my malabsorption diagnosis with what was happening now. After all, the gastroenterologist and the surgeon had both released me from their care, so how could any of what I was currently experiencing be related? Besides...having Lupus always kept me guessing as to whether or not my symptoms were a result of that disease flaring up, or if they heralded the appearance of a new disorder that was entirely unrelated. Seeking help from area doctors yielded no answers, while my nights were filled with agonizing pain and my weight plummeted to a mere 89 lbs. Not understanding that inflammatory malabsorption is often caused by Celiac Disease, I did not remove gluten from my diet, so I continued on a downward spiral health-wise, and I needed help.

My sister and my niece became involved in a gluten intolerance group to learn more about Celiac and its effect on a person's overall health. The more they learned, the more they suspected that more than just one in our family was suffering from Celiac Disease and/or gluten intolerance...I, along with multiple other family members, shared some of the same symptoms! They learned that Celiac Disease is hereditary and that people with a first-degree relative with the condition (parent, child, sibling) have a 1 in 10 risk of developing it too. In addition, the link between gluten intolerance and autoimmune diseases was simply too compelling to ignore. My niece contacted me and told me of a clinic she'd heard about in California that might be able to help me, so in July of 2011, my husband and I traveled to California for a full medical assessment. After extensive testing, it was finally determined that I am, at the very least, allergic to gluten; because I have the "Celiac Gene" (HLA-DQ8) along with a positive biopsy for inflammatory malabsorption, I, for all intents and purposes, suffer from Celiac Disease. Gluten is, therefore, poison to me.

I have noticed over the past few years that many people have decided to eliminate gluten from their diets, and some, especially those with autoimmune disease, are seeing benefit. Upon leaving the clinic in California, I immediately removed gluten from my diet, along with any refined or processed foods and foods that contain preservatives.  In addition to these dietary changes, I no longer drink any kind of soda, and avoid artificial sweeteners. Though it took a while to see improvement (and I still struggle greatly from the combination of diseases that I have), I know that my decision to make changes in what I ingest has been beneficial to my health. Changing my way of thinking about food was hard at first, but in due time, I learned how to bake delicious gluten-free biscuits, bread and crackers, and I can still enjoy my favorite rice-broccoli-cheese casserole because I learned how to make my own gluten-free cream of mushroom and cream of celery soups. Going out to eat is a luxury that we take on rare occasions, if we are sure the restaurant has gluten-free options available, but when considering the risk of cross-contamination, we would rather stay home than suffer the illness that ingesting gluten brings on.

Celiac Disease is a serious condition, which, if left untreated, can lead to additional serious health problems, including the development of other autoimmune disorders like Type I Diabetes, Multiple Sclerosis (MS), Dermatitis Herpetiformis (an itchy, blistering skin rash), Anemia, Osteoporosis, infertility and miscarriage, neurological conditions like Epilepsy and Migraines, short stature, and intestinal cancers. If you see yourself in anything I have written here today, please visit the Celiac Disease Foundation Website, complete the symptoms checklist, and, if you think you might have Celiac Disease, please make an appointment with your doctor.

As the final focus on autoimmune disease this month, I would like to briefly touch on one more disease that has affected my life in a profound way. In 2013, I began to have some unsettling symptoms that kept me in bed most of the time. I had been through a tremendous rough patch, having been diagnosed with Common Variable Immune Deficiency, Myasthenia Gravis, and suffering from a ruptured tendon in my shoulder that took two surgical procedures to repair. With autoimmune disease, any illness, trauma, or stress causes that disease to flare. Because I have more than one, I was bombarded with so many symptoms that it was difficult to determine which disease was flaring...or perhaps it was all of them! Little did I know at the time that a totally new autoimmune disease, Vestibular Dysfunction, was making its presentation. With no clue as to the root of my problem, I struggled daily for several months with imbalance, incoordination and severe vertigo. I was falling into walls, falling down, unable to get around without the world spinning or the floor seeming to drop out from under my feet. Having ruled out tumors or other neurological issues via MRI, my neurologist referred me to an Ear, Nose and Throat specialist, who ran special tests to determine the problem. The final determination: Vestibular Nerve Dysfunction, with permanent damage to the vestibular nerve caused by autoimmune processes. While the damage to the nerve can not be repaired, the brain can be retrained to compensate, and balance issues improve with vestibular rehabilitation, so I began therapy right away. I still have trouble with balance, dizziness and incoordination, especially in wide open spaces and dark rooms, but I have suffered no hearing loss and for that I am grateful.

I once wondered why my life has been impacted by so much pain, and illness. But I don't question that anymore because through it all, I have grown, and am a better person. I have learned to depend on my Anchor of Hope, my Jehovah Rapha, the God who heals. Oh, it may not be right now, or even tomorrow that the healing comes. But I know this...when the day arrives that I stand before Him, I will be whole and perfect, and it will not have mattered what has been before. My heart's desire is to hear Him say, "Well done, my good and faithful servant!" So today I ask, not "Why me?", but "Why not me?" and "What can I learn, and how can I use that knowledge to help someone else?" The Bible says, "Behold, I have refined thee, but not with silver; I have chosen thee in the furnace of affliction." (Isaiah 48:10), and I am thankful that He is refining me, little by little, to be the vessel of HOPE I know He has chosen me to be. So in wrapping up my series on autoimmune disease for March Autoimmune Disease Awareness Month, I want to thank each of you for stopping by. Perhaps you have been searching for answers to your health problems and have seen yourself in one or more of my stories. My prayer today is that something I have posted here is helpful to you.

God bless you...

"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars." ~Khalil Gibran~