Our Gluten Free Journey

Rick's Story:  My husband, Dr. Rick Horne, is the sweetest, kindest person on earth. Watching his health initially decline slowly and then at an ever increasingly rapid rate was heart wrenching and terrifying.
Rick was incredibly sick for years. Why? We did not know, and his doctors seemed to be as clueless as we were. His journey through the medical community to the discovery for his gluten intolerance—celiac perhaps?—is long and convoluted.
But, please indulge me for a moment, and allow me to take you way back to the beginning. His mom always had digestive problems—reflux, chronic constipation, diarrhea—worsening as she aged. She was diagnosed with Lupus back in the 50’s when diagnosis was based on symptoms rather than a definitive test. She lost a baby because of the high doses of cortisone she was taking.
As a young man Rick had some digestive problems, but being an officer in the Air Force and eating local food all over the world plus the fact he considered fried chicken and beer a balanced diet, well, let’s just say a little occasional gastric distress was nothing unexpected. He also had occasional tachycardia (his heart would race for a short period of time) which he controlled through a less than sophisticated medical treatment; he would smack himself smartly in the chest.
In addition to the gastric problems, Rick’s health began to deteriorate when he passed 50. He had a number of different, apparently unrelated symptoms. He transitioned between diarrhea and constipation. His reflux became a real problem, and he developed sleep apnea. By his late 50s he was sleeping on a wedge when he slept at all. His snoring was . . . there’s not a nice way to put this—extremely LOUD. The comforting part was his snoring did mean he was breathing and sleeping. When the noise would stop—no snoring, no breathing, nothing—I would panic, shake him and awaken him to get him to breathe.
He also suffered from a persistent pain in his side. He thought it was from my elbow hitting him to get him to turn over. He had several bouts with diverticulitis when his diverticula would become inflamed and infected.
Planar fasciitis made walking difficult after sitting, driving or simply getting out of bed. His heartbeat would race at times (nothing new), and he felt as if someone were reaching into his chest, squeezing his heart hard. A heart cath showed no problems whatsoever.
Severe rashes periodically developed all over his body, but would usually begin on his face resulting in his being diagnosed twice with Lupus. Medical tests did not support the diagnosis.
He had migratory joint pain, feeling as though someone was sticking ice picks into his joints at random intervals. Periodically his face and torso flushed a bright red making his skin feel as if he had severe sunburn that would last anywhere last from 10 minutes to an hour. These problems were more or less simultaneous and continuing despite various treatments.
Our internist was baffled. He was charged with coordinating our medical treatment and sent us to an ever increasing array of specialists in various locations from Mobile to Birmingham to Columbus Georgia for each of the separate problems. We saw a number of internists, gastrologists, pulmonologists, dermatologists, orthopedists, hematologists, oncologists, and rheumatologists. Each generally looked only at symptoms that fit within “their” world when making a diagnosis.
I had done some research on what diseases might share many of the symptoms. Consistently, the three that had most these symptoms in common were Celiac, Lupus, and Lyme Disease. For the last three years prior to his diagnosis, I begged his physicians to test for each of these three diseases. I guess I am the wrong kind of doctor, because nobody listened. They were looking through a straw and seeing only the symptoms they were familiar with treating, so they made the usual diagnosis and treated for the specific symptoms within their specialty. Sometimes the treatments would give some relief for a while.
So, how did he finally get diagnosed? Did the internist finally put it together? No. He retired. Did one of the specialists order some tests out of his comfort zone? No.
His urologist accidentally found the problem while testing for something totally unrelated. You won’t believe how this unfolded.
We were living a stressful life at this time. In addition to his many illnesses, we had lost his mom and my dad. We had just expanded our business. My mom had just died of severe dementia after living with us in diapers and having to be hand fed and bathed for a number of years. His urologist wondered if all the stress we were under for an extended period of time might have affected his adrenal glands, so she ordered a battery of tests.
The results were totally amazing. His adrenals were surprisingly good, but she asked if he knew he had a high sensitivity to wheat. He asked what that meant. She listed a number of symptoms, and asked whether he had experienced any of these. He said “No, I have all of them.”
She said he could be Celiac or gluten intolerant. Since the treatment is the same, she suggested we come off wheat for a couple of weeks and see if the absence of gluten in his diet made a difference. We stopped the wheat, actually anything with gluten, and you know what? Seventy-two hours later, as in three days, he was completely symptom free. For the first time in over 20 years, he was finally symptom free. The only symptom that seems unrelated to his gluten consumption was his tachycardia, but that responds well to medication.
We were somewhat naive about cross contamination and trusting eating establishments. Lots of foods are naturally gluten free, such as French fries, but not when they have been fried in the same oil as products breaded in wheat flour.
We really had a scare about a year ago when he became really sick from cross contamination. Although the manager/owner had been given our chef’s card and a thorough explanation, the message was not relayed to the cook in the back who apparently grilled Rick’s steak on the same grill where they had cooked breaded products without thoroughly cleaning the grill in between orders.
He has been off gluten for several years, and we still do not know if he is truly is Celiac. What we do know is that he is extremely sensitive, completely intolerant, of even minute amounts of gluten.
Our Celiac specialist, who we absolutely adore, in Atlanta, Dr. Cynthia Rudert, says to not let anyone give him a wheat stress under any circumstances. In retrospect his mom was probably Celiac or gluten intolerant. She was probably treated for Lupus unnecessarily, and if so, it cost her a precious, much wanted baby girl. And, her digestive problems eventually cost her life. If only we had known….?
Now there are suspected links between gluten and some forms of dementia. Could we have helped my mom with a change in diet if we had started early enough? Painful questions to which there will probably never be any real answers, only speculation and more questions.
So, how is Rick doing today? Rick is fantastic, feeling good and absolutely delighting me day after day with his love, devotion and sense of humor. He is healthy and enjoying becoming somewhat of a backyard farmer, which is another story by itself.
What are we doing to keep him safe?
1.      Our kitchen is totally gluten free with 100 percent dedicated gluten free equipment.
2.      When traveling, we take breakfast foods and homemade nibbles and try to eat our main meals at privately owned restaurants. Folks who have liability insurance on the line tend to pay greater attention to details. If we have to eat at a chain establishment, we demand to talk with the manager and chef/cook. We do not hesitate to walk out if we feel uncomfortable.
3.      When invited to friends, I always take plenty of food that I know is safe for Rick to eat.
As a parting note, I too avoid gluten even when eating out, and I have so much more energy. Besides, having a healthy, happy hubby makes me feel better.
My Story--The Wife of a Celiac: “I’ve come a long way, baby!” When my husband—who just happens to be not only the love of my life, but my best friend—was finally diagnosed as having a severe sensitivity to wheat, I left the doctor’s office with Rick feeling pretty darn confident.
With an undergraduate degree in vocational home economics education, plus taking a few elective courses in foods and nutrition during my doctoral studies, I really thought this “diet” would literally be a walk in the park. Plus, I had spent14 years in a high school classroom teaching primarily all of the food courses and several more years as a teacher educator teaching both pre- and in-service teachers how to teach home economics, including foods classes. And, being a retired Auburn University professor I not only have many personal friends and former students on faculty in the Department of Food and Nutrition Science and Family Life Programs in The Alabama Cooperative Extension System, I literally have access to the unlimited nutritional resources of the entire Land Grant System.
But, back to my story as the wife of a Celiac/severely gluten intolerant, aka, all around nice guy-walking to the car I just chatted up a storm about how avoiding gluten would not pose a real problem for us. So many of the foods we love—fresh fruits and vegetables, meat free of hormones, steroids and antibiotics, and seafood without chemical additives—are naturally gluten free. So, what is all the whoop-la about?
The researcher in me could not resist the need to read and study everything I could get my hands on and quickly. I needed the reassurance of what the authorities in the gluten free community had to say on the subject. The closest place I could go to get any “background” information was a Barnes and Noble bookstore. I could get on the internet and/or call some of my buddies when we got home.
Right off the bat, I found a magazine dedicated to helping not only folks who are gluten intolerant, but those with other food allergies as well. I thought “perfect!” Big mistake! This 
particular edition just happened to have a rather lengthy article about the various gluten free flours available. This article must have listed and discussed the properties of each at length of 20 plus flours. Needless to say, I was a little blown away.
To be perfectly honest, the only area I thought might be problem was in the baking arena, when had always been my favorite. I had maintained a sour dough starter and potato bread starter for years, baking several loaves weekly, giving most away to friends. I really dreaded giving this up.
I also admit I had never cooked with any type of flour other than wheat, so I had innocently thought I could simply substitute a single, as in one, gluten-free flour for wheat flour. I was obviously mistaken. It looked as if mastering gluten free baking was going to be more complicated than learning to use a slide rule in physics. As a baker, I thought I had lost all of those dessert and delicacies I had become known for making. I went to bed that night more depressed than I had ever been. And, that is where I got stuck in the “dough” for over a year, but more about that later.
I awakened the next morning with a renewed spirit and determination, jumping in with both feet without looking at the depth of the proverbial water. Being a home economist, I knew I could do this, making a conscious decision that learning about a gazillion kinds of gluten free flour would just have to wait. I put my energy into preparing  all the delicious foods my sweetie could eat safely.
The word “diet” also kept crossing my mind. I really don’t like that word and the negative conations. No one enjoys giving up something they love, and that is precisely what a diet does—it takes something away. And, for this to work I knew I too had to be totally committed to maintaining a medically necessitated gluten free lifestyle. Yes, I said lifestyle. Rick’s health was and remains my number one priority. Beginning that first day, I converted my entire kitchen to one that is totally gluten free with all dedicated appliances and equipment.
Why? The risk of cross contamination is simply too great to chance. After watching my husband be very, very sick for such a long time, removing all, and I do mean all, gluten including the hidden gluten lurking in other foods. I simply could—would not—not take a chance. More to come on hidden gluten and cross contamination in other posts.
We had always enjoyed elegant meals. I was determined to create recipes that would not only be delicious, but would be pretty and safe. I design wonderful, cheerful table scapes creating a welcoming atmosphere not only for us but for all who eat with us. Which brings up another point—guests who are not gluten free. When folks eat in our home, they are eating totally gluten free as well. We don’t try to keep it a secret, but we don’t announce to our guests their food is completely devoid of any type of food. And, you want to know something else? I have never had a complaint. The common remark is “This cannot be gluten free; it is too good!”
Where do I find all the great recipes I prepare? I already had most of them in my file, and I simply convert them using a few simple gluten free substitutions. I use the most popular gluten free magazines to keep me abreast of what is going on in the gluten free community, not for recipes, and here is why. Seems that those who make their living writing, teaching and consulting in the gluten free community have a vested interested in maintaining an air of secrecy, making everything so very freaking complicated. Recipes from these folks tend to be long and confusing with weird measures, such as 1/4 of a tablespoon. Now tell me something. When have you every seen a recipe in mainstream society calling for 1/4 of a tablespoon? For those of you who are curious, 1/4 of a tablespoon is equivalent to 3/4 of a teaspoon, which makes sense at least to me. And, while we are on the subject, these folks tend to abbreviate some measures while spelling others out. Drives me nuts.
Several months into this new lifestyle and still determined not to let a few sacks of flour totally defeat me, I struck out on my own, trying first one combination, then another based on all of those descriptions of flours. I finally hit upon a flour/starch combination that consistently works for me. I can’t promise that this blend will work in your recipes, but I have yet to make a garbage can deposit of failed food since I came up with this blend that is uniquely mine. And, I am using the same old recipes I have used for years. For a total “how-to” with this blend, visit my blog at http://brassbrassiere.blogspot.com/.
I can only imagine the frustration folks who did not have my background . Even worse, today many people don’t even know how to cook at all, having always depended on picking up fast food. Hey, come on. Even though my undergrad degree was in vocational home economics education, I felt overwhelmed for a long time.
In the middle of my initial confusion, I felt a little under the weather and decided to make one of those comforting casseroles. At that point a whopping big oops! Cream of anything soup is thickened with—you guessed it—wheat flour. And, then there are the buttery crumb toppings—again, all loaded with wheat.
So, it was back to the basics, aka, creamed soups and buttery bread crumbs. After thinking about my dilemma, I knew exactly what I had to do—make my own creamed soups and bread crumbs made simply by placing a couple of loaves of commercially prepared certified gluten free bread through the food processor.
When push came to shove, I got really creative, finding a whole host of “legal” substitutions for things I had always taken for granted. From that time forward, I have never given a second thought to preparing a casserole, because I have all the basic creamed soups tucked away in my freezer along with gluten free bread crumbs ready to be called into action on a moments notice.
And, that is just the tip of the gluten free iceberg. Hidden wheat is the real nasty piece of work in commercially prepared foods. Take Chiles in Adobo Sauce for instance. Who would have ever thought that anything made with peppers would contain wheat? Certainly not yours truly here. The list is endless. To be honest, we spend more air time on the phone with manufacturers verifying their products are in fact gluten free and safe for Rick to consume than we do talking with friends. I know that if Rick consumes a product containing even a very, very small amount of wheat, he can be very sick for months.
The nicer folks call me overly protective; some others call me other names I am sure. Managers at several of the chain restaurants throughout the southeast have a few other choice words for me that would not be very nice to publish—and, the encounters were not pretty sights either. I simply call myself a vigilant wife who happens to love her husband.
Once I got a handle on the hidden caveats of eating without gluten, aka hidden wheat in manufactured products and the huge risk of cross contamination, maintaining a gluten free lifestyle is literally a piece of gluten-free cake. At home, I have made all the “ingredients” I need for my cooking, such as my flour blend, creamed soups, ground gluten free bread and adobo sauce. We often travel with ice chests filled with home-made goodies and a pocket full of chef’s cards (click for link) explaining in great detail Rick’s medical problem and the steps that must be taken to avoid making him sick.
I know! This seems like a very long and awfully complicated process. Initially, yes! When you have a loved one as sensitive to gluten as Rick, you will invest whatever time necessary to keep them safe, as I do on a daily basis. At this point, I automatically translate gluten containing recipes to be gluten free.
If I could do one thing differently, we would seek a Celiac specialist immediately. By the time we got Rick to a Celiac specialist, he had been off wheat long enough, tests came back negative. And, because he so extremely sensitive to gluten, his doctor says a wheat stress test could be catastrophic.
That is the bad news; the good news is that gluten IS the only culprit I have to control. We are eating healthier than ever before and are feeling great. We are missing a darn thing!

1 comment:

  1. Thank you for sharing Rick's & your story! It's great that you also eat GF, both at home & when out - as you say, so many benefits, not the least of which are his & your health!

    A friend who died a few weeks ago at 72 was also DX with Lupus, probably in the 1960s, & thought she'd not make it to 40! Over the years, she had various health concerns, & the last 5-10 suffered from dementia which was thought to be Parkinsons related (Lewy's Body) .... my mother had some similar problems, including that dementia .... & I've also wondered if they had gone off wheat & gluten, would the progress have been the same?

    A dear friend of my daughter's, after going GF herself observed that several of our 'non-digestive' symptoms could be linked back to gluten, & suggested she get the DNA testing in 2009! Since my daughter & her girls each have 2 genes for intolerance, I realized I'd be better off without gluten as well, & have been SO glad!
    My daughter & I both had some heart palpitations, which have gone with the gluten! Her anxiety (12 years) was gone the 3rd day into being Gluten Free, & if that were the ONLY benefit, it would be well worth it! Her girls are now 12 & 7, the older struggles with 'image' & being like the other kids .... their 18 month old baby has been GF from before conception & is a shiny, healthy child!
    Thanks for all you share!


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