This Sunday I would like to introduce you to the latest volunteer Kim Ohlweiler. She’s a self-diagnosed Celiac, mother and true survivor who has graciously offered to share her story in hopes it will help others with gluten-related disorders.
Here’s Kim’s story:
“I grew up in rural north-western Ohio. I headed off to the big city as soon as I could, and spent 30 years as a high school band director in the greater Cincinnati area. I am very happily married with two grown children and 3 dogs. I was lucky enough to be able to retire in 2008 and now enjoy the good life with my sweet husband.
My celiac disease story begins very early in life. I remember having diarrhea as a very young girl, as young as 6 years old. I could even have had it before that, but I don’t remember and have no one to ask. My father passed away over 20 years ago, and my mother was deep into Alzheimer’s and wasting away herself when I discovered that I have some kind of gluten problem. In retrospect, I suspect both my parents may have had undiagnosed celiac disease. For myself, I do remember a lifetime of illness and a revolving door of doctors. I had persistent infections– tonsillitis, sinus infections, ear infections, and bronchitis, not to mention a myriad of viruses, beginning at age 7. I was on antibiotics constantly. I can only imagine what effect this has had on the microbes in my gut. I had strep-A pneumonia and viral meningitis as an adult, and now have non-allergenic asthma. I have had infrequent migraines, carpal tunnel syndrome, contact urticaria, an undiagnosed horrible itchy rash, balance problems, and brain fog. I even started going through menopause when I was only 39.
I was diagnosed with IBS at age 14 and was put on a drug (the name of which I don’t recall) that made me feel awful and have a very dry mouth. When I was 16, my family doctor put me in the hospital where they removed my tonsils and determined that I had a low-grade form of mononucleosis which they said I may have had for years. (Was this a missed diagnosis?) I was in the hospital on IV antibiotics for over a week. The infections subsided for a few years after this, but not the diarrhea and its accompanying cramps, bloating, and misery.
In college, I visited the on-campus clinic looking for help, and the doctor took me off the medicine I had been on for years, saying that it was a bad combination of chemicals that he wouldn’t prescribe for anyone (!) and suggested an elimination diet to get the diarrhea under control. I learned that I couldn’t drink carbonated beverages or eat raw vegetables or greasy foods, but gluten wasn’t on the list of things to avoid. Indeed, I had never heard of gluten. I stuck with that diet for years because it made me feel a little better, but the diarrhea never stopped.
After my first pregnancy at the age of 25, during which I had toxemia and which resulted in a c-section, I began my now life-long battle with obesity. In the 10 years following my son’s birth, I gained and lost over 1000 pounds. I was using Weight Watchers and successfully losing weight, but the weight never stayed off. I now weigh 230 pounds. Whether or not there is link to celiac disease here, I don’t know.
My doctor diagnosed me with metabolic syndrome several years ago, and I began what I saw as the fight of my life to not have diabetes, heart disease, liver disease, and arthritis. I have seen doctor after doctor; gynecologists, gastroenterologists, allergists, endocrinologists, dermatologists, otolaryngologists, surgeons, and chiropractors, and not one of them thought to test me for celiac disease. There were 46 doctors in all who missed it. Meanwhile, I began searching for my own answers.
I developed gall bladder disease in 2007 and was told by the surgeon who removed my gall bladder that I also have Fatty Liver Disease. In a discussion about weight and my diet, she said she suspected I didn’t get enough protein in my diet. I asked how much I should eat, and she said that I should be getting about 70 grams a day. This started me on a quest to figure out how much of everything I should be eating. How many carbohydrates? How much fat? What about sugar, vitamins, and minerals? The answers were not readily available to me despite extensive research, so I read as much as could find, then I guessed. At this point, no doctor had even suggested I see a nutritionist. And still, no thought of gluten entered my mind.
I developed a spreadsheet on which I tracked everything I ate. I read nutrition labels and looked up nutrition information on-line. I transferred all of this information (carbs, sugars, fiber, calcium, fats, protein, and calories) to a chart in my spreadsheet and created a Meal Calculator so I could calculate totals for casseroles and other multi-ingredient foods. In an effort to avoid getting Type-2 Diabetes, I decided that I should cut down on carbs. To me, this meant that I should know exactly what that meant! Again, I couldn’t find much information with any specific recommendations, so I decided on my own based on various readings that I would eat 20 grams of carbohydrates a day for two weeks to detox, and then eat 50-100 grams of carbs per day after that, not including “white foods” like bread, flour, rice, sugar, and potatoes. I balanced that with trying to achieve a 30% / 60% ratio of protein and fats calories. I also cut out most fruit, believing that fructose would impact my liver. I have no idea if this is correct, and the several doctors with whom I tried to discuss it now told me to see a nutritionist. I’m sure they were right about that recommendation, but since I have been through so many doctors and so many tests, and since nutritionists’ fees aren’t covered by my insurance, and since no one in this area advertises having specific knowledge of celiac disease, I haven’t sought out their expertise in person, only through online blogs and articles.
On my self-designed low-carb diet, my numbers in my blood work improved. Blood sugar came down, cholesterol came down, liver function improved, but I didn’t lose weight despite eating very low calories. I was surprised to find out that I was only eating between 900-1000 calories a day when I first started tracking my food! I had been doing this for years as I learned by going back through my Weight Watchers’ Journals and converting them from their points system to my new system. I began to force myself to eat between 1500-1800 calories per day and I honestly found it difficult to do. I would often get to the evening, after dinner, and still have over 500 calories to eat that day! I also started walking a mile and a half 4 days a week and working with a personal trainer once a week. My weight has not gone down. My doctors act as though they don’t believe that I am on a low-calorie diet and that I am exercising regularly.
Before Christmas 2012, a year and half after starting my low-carb diet, I decided to crochet gifts for all of my family and friends. By Christmas time, the arthritis in my fingers was so bad that I had to use an ergonomic crochet hook just to complete my gifts. I continued after Christmas working on a blanket I was making for my own family. My hands got so bad that I simply couldn’t continue. I also had inflammation in all of my other joints, especially my hips. Walking was difficult. Getting up out of a chair was difficult. I was miserable, unable to think, unable to exercise, and getting sicker every day. I was only 57 years old and not quite ready to sit all day! In May of 2013, my lovely daughter, Emily, who is 28 years old, suggested that I try going off gluten for a couple of weeks and see if I felt better. I still didn’t know what gluten was, and when she told me, I resisted. Not eat bread? The Staff of Life? No pasta!? That couldn’t be causing a problem, I insisted. Emily persisted, though, telling me she had read that a lot of the symptoms I was having could be caused by gluten sensitivity. So I tried. And it worked! By the end of 6 weeks – mid June, 2013 – I had figured out how to eat gluten-free. The low-carb diet had already gotten me eating whole foods, unprocessed foods, and healthier foods in general, so the switch wasn’t as hard as it might have been otherwise. I made some mistakes (thinking I could have a little piece of wedding cake at my nephew’s wedding since I had been so good about carbs,) and I got “glutened” in a couple of restaurants before I completely figured it out, but now I’m a good home cook and have converted most of my recipes, and those of my family and some famous chefs to gluten-free versions. I rarely eat in restaurants any more.
I have seen three of my doctors since my self-diagnosis. My gynecologist rolled her eyes and said, “If it makes you feel better…” I won’t be seeing her again. My asthma doctor would like for me to confirm the diagnosis, but he hasn’t yet convinced me that it will improve my situation. I figure that they have been treating me all along without testing for this, so now they have to take my word for it. My family physician whom I have seen regularly since the end of 2005, agrees that based on my reports and the improvement in many symptoms, that I do have celiac disease and that doing a gluten challenge just to prove it is unnecessary now that I have been off gluten for nearly a year. My persistent brain fog is gone, I haven’t had a migraine since, the arthritis is gone, I have a ton more energy, and I occasionally have normal bowel movements. I have never had normal bowel movements in my entire life, so it was truly shocking when I did! I was doing well until recently when I got a sinus infection. 2 weeks on Amoxicillin sent me into a tailspin and now I have diarrhea again, but it seems different somehow. I’m wondering if it might be that I still have IBS… I’m hoping that my system will restore its healthy bacteria and heal itself soon.
I have informed all of my family members that I have celiac disease and I know that 3 of them are scheduled to be tested before going off gluten. Their confirmation will be mine as well, the way I see it
After all this, I still have one big struggle to overcome. Why am I still overweight, despite my gluten free diet and activity changes? I don’t eat substitute gluten foods (like bread, cookies, pasta) often. I eat whole foods that I prepare myself and have increased my vegetable intake considerably. I haven’t read that there is a link between obesity and celiac disease, although I have read recently that doctors are beginning to test bariatric surgery candidates for celiac disease since they are finding that many of them do have it and that bariatric surgery is contra-indicated in that situation. I have also recently read that doctors should test for celiac disease when one presents with gallbladder disease. Too late for me, but it’s another piece of the puzzle.
I have tackled my disease only with the help of the celiac/gluten sensitivity community. Until medicine catches up, it seems we’re on our own, at least where I live. I am grateful for my online resources. They have made such a significant difference in my life that I can only hope my story helps someone else along their journey.”
Do you want to share your story and be featured in the Faces of Celiac?