Monday, May 7, 2012

Good-Bye Gluten; Hello Health--My Husband's Quest for a Diagnosis

Dr. Rick Horne, aka "My Sweetie", is the star of my show!

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. 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.
In the green house @ the Biltmore while on vacation.
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.
Having a ball @ a party!
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 urologists 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.

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