Celiac Disease, Gluten Intolerance, & Gluten Sensitivity: The Road to Diagnosis

Gigi Stewart, M.A. Health Guide
  • Entire grocery aisles are devoted to it, restaurants have separate menus for it, and the media is abuzz about it these days. Being gluten-free is no longer an unheard of concept, and is becoming a way of living for many, gaining more mainstream ground every day. Once we learn that gluten, a protein found in certain grains (like wheat, barley, and rye), is to blame for our maladies, some of us forget that even though we have discovered our answer, not everyone has. So, for all of those who are still searching for answers and seeking relief for health issues stemming from an unknown cause, I want to share my personal experience with you. It was someone else's story that led me to the answers I needed to realize my path toward optimal health. I hope my story will help you.

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    I became "free" in 2008, and up until that time had lived with chronic pain and other untraceable symptoms for nearly 30 years. To put this in perspective for you, I celebrated my fabulous 40th birthday last September. That's correct; by the age of ten I had manifest symptoms of gluten-intolerance and sensitivity. So why didn't my parents rush their hurting child to the doctor for answers? The fact is that they did, many times, and the answers were at best guesses to placate my parents; a few blood tests and x-rays were peppered in for good measure to assure them that I did not have leukemia (I bruised easily) or some other life-threatening illness.


    I remember lying in bed at night, approximately age 12, crying because the joints in my arms and legs hurt so badly. My mother (who has lived with a diagnosis of IBD for all of her adult life) would fret over what could be wrong, administer pain relievers and a heating pad, and vow to find out why my pale legs, dotted with purple and blue marks, would not stop hurting. The feeble diagnosis was "growing pains".


    Of course, if that weak explanation had been accurate for the pervasive joint pain, it would not suffice as an explanation for the sensitive skin, weak and discolored tooth enamel, and severe abdominal pain (diagnosed as peptic ulcers at age 15) of my adolescence. These curious and unexplained symptoms were suppressed by such accommodations as special non-irritating detergents and soaps and avoiding certain foods (like pasta and dairy). Unfortunately, the weakened tooth enamel meant a copious amount of amalgam in my mouth by the time I graduated from high school.


    By the time I was in my twenties, I had been diagnosed with chronic anemia and fibromyalgia, an anomaly of which (at the time) few medical practitioners were aware. Sadly, many physicians attributed the debilitating pain and fatigue of fibromyalgia to a state of mind, as opposed to a legitimate physiological state. My refusal to accept judgmental glares and pain killers as treatment; therefore, meant that I must continue to live with the pain. When the condition gained widespread legitimacy in the medical community, I was sent to several rheumatologists, none of whom could offer much more than their sympathy and suggestions of alternating heat/ice treatments coupled with pain killers and tricyclic antidepressants. I appreciated the sympathy, tried the alternating heat/ice treatment, and tossed my prescriptions in the rubbish bin on my way out of the doctor's office. I continued to live with the pain that became progressively more debilitating with each passing year.


    During my late teens and early 20s, I was also plagued with near-constant illnesses resembling influenza and told that I "just have a weak immune system" and "low iron". Iron supplements did not seem to help and the best advice I could garner from doctors was to eat spinach, raisins, and lots of meat. There were myriad other symptoms such as numb and tingling limbs, extreme bloating after eating certain foods (especially pasta and dairy), brittle hair and nails, and general fatigue.


    At 29, increasingly fatigued and in near-constant joint pain, I had one of what would be 15 Transient Ischemic Attacks (TIAs) over a 6-month period. Neurologists marveled at the lack of underlying causes and my blood tests revealed no obvious clues. These short-lived warning signs of stroke, fortunately, do not cause brain injury, but did add a layer of mystery to my health issues, not to mention an entirely new set of diagnoses (adult onset epilepsy, for one). I now know that research has indicated a link between TIAs and CD (El Moutawakil et al, 2009).

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    While the TIAs (finally attributed to oral contraceptives), did cease, during most of my 30s, I was tested multiple times for thyroid disease, lupus, Lyme disease, and rheumatoid arthritis. Those tests were repeated almost annually, always yielding negative results, and reconfirming a questionably high white blood cell count and frighteningly low hemoglobin.


    In spite of all the health issues, I managed to have a family and make my way through graduate school where I studied behavioral neuroscience with a research specialty in chronic pain and analgesia. If there were clues to the cause of my pain, I wanted to find them. I wish I could say that I did, but lamentably, I cannot. After completing a rigorous graduate program, my physical health deteriorated and I felt bad in general most of the time. I did not want to get out of bed and I had pain in so many areas of my body that I could no longer discern its point of origin.


    I was still determined to discover the source of my health issues so that I could correct them, not merely mask them. Along with the pain, anemia, fatigue, and frequent illness, I began to have severe gastrointestinal (GI) issues, and all of this together was becoming too much to bear. To feel that bad and not be able to enjoy one of my great passions - food - was unacceptable. Something had to give.


    Seeing that I was at my wit's end, a close friend suggested that I go gluten-free. I had only heard of gluten as a result of his gluten-free diet of two years (due to a diagnosis of CD via biopsy), which had dramatically improved his health. Although skeptical, I listened to my friend's advice, information he had been given by his internist, and then the researcher in me got to work. I read everything I could find on the topic of Celiac Disease (CD) and gluten intolerance and sensitivity, and became convinced that a gluten-free diet was worth trying.


    I cleaned out my pantry, ridding it of all gluten-containing foods. I had always been a healthy eater - no fried foods, lots of fruits and veggies, lean means, monitoring my family's fat and cholesterol intake - but this was different. Even some of the "good" stuff had to go.

  • I started slowly, scouring labels and not venturing out beyond lean meats, fish, cheeses, fruits, veggies, and homemade salad dressings. But a mere 3 days into this new way of eating, I was a changed person. My husband said I seemed 10 years younger, and I was feeling it! Each day, I would tentatively nibble, wait to feel ill, and nothing would happen. No GI upset, no fibro pain, nothing. I was transformed.

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    In a short time, I began experimenting with alternative flours, refashioning favorite recipes, and creating many new ones, my health continuing to improve.


    Convinced that gluten was to blame for years of poor health, I made the decision to commit to a gluten-free lifestyle in spite of never having an official diagnosis of CD. In order to be tested, doctors told me I would have to go back to eating gluten for a short time prior to testing, and after years of such poor health, I have been reluctant. I was also advised that I had multiple symptoms that indicated more than a mere sensitivity or intolerance (high white blood cell count, low weight, chronic Iron Deficiency Anemia (IDA), signs of nutrient mal-absorption, TIAs). I had my diagnosis from my own body. I have considered going forward with testing, as it is important to know if one has CD, gluten intolerance, or wheat allergy - they are three different conditions; however, I have not been able to force myself to consume gluten in order to be able to be tested.


    Since adopting a gluten-free lifestyle, I have discovered several other food allergies (nuts and soy) and intolerances (dairy), and was able to get to the root of my chronic IDA, which literally saved my life. All of these issues, I believe, were realized because the "gluten veil" was lifted and confounds that previously prevented a proper diagnosis were removed.


    One of the roadblocks to discovering the cause of my many health issues was that my symptoms were never judged collectively, but always as standalone entities. Next time, I will provide some advice for those of you who may be dealing with issues similar to those I have faced, as well as information on CD, gluten intolerance and sensitivity, and other related allergies.


    If you have thoughts, questions, or a story of your own to share, I'd love to hear from you.

Published On: March 24, 2011