Guest blog post by Bob Vogel
The month of May marked the final episode of “House”, the TV show about a misanthropic medical genius who headed a team of diagnosticians. A theme of each episode was a medical mystery–the patient’s life hanging in the balance. The symptoms would mimic a malady or disease, tests would appear to confirm it, yet the treatment often wouldn’t work, sometimes it made matters worse until at the last moment Dr. House would notice a seemingly insignificant symptom or clue that would lead to a completely different and correct diagnosis, the cure was usually simple.
SCI (spinal cord injury) can often produce symptoms worthy of an episode of House. Paralysis creates so many changes in the way a body works and reacts that it is paramount for those of us with SCI to learn what “normal” is for our body and to make note of any changes, like increase or change in spasticity or pain, and communicate these changes to the medical professionals that work with us to maintain our health.
At 52, I’m in my 27th year as a T10 complete paraplegic and I recently went through a four-year long “House worthy” medical mystery of my own. At first the symptoms were subtle, I started feeling really run down and fatigued, something I chalked up to a combination of being in my late 40’s and a full-time dad. Then I started getting a noticeable increase in neuropathic pain (a combination burning, pins and needles feeling) in my legs and an increase in spasticity. I brought this up to my primary care physician and he did a complete blood workup and urinalysis—all of which came back normal.
Then I started getting patches of itchy scaly skin on my right hand, a dermatologist confirmed it was psoriasis, http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001470/ , a condition caused by stress and or some type of inflammation, and she prescribed an anti-inflammatory cream.
The next symptom came on suddenly, severe neuropathic pain in my right abdomen at my injury level (at the belly button line)—it felt as if my pants were pulled up to my belly button and were scratching my skin. The pain came on so suddenly I wrote the date in my “SCI journal.” The area became extremely hypersensitive, and the neuropathic burning extended below the level of sensation on my abdomen.
Working in conjunction with my primary care and PM&R physicians, I tried everything from senna, a prescription laxative, to see if the pain was caused by constipation to various tests including an abdominal CT scan to rule out obvious (perhaps serious) problems and a spinal X-ray to check for disc problems, and scoliosis. All came back negative—good news but no closer to an answer.
Three years went by. The symptoms remained with no answers. Then I started writing a column on syrinxs (the formation of cysts on a spinal cord due to scar tissue from SCI) for my column Para/Medic http://www.newmobility.com/articleView.cfm?id=11770&srch=syrinx in New Mobility magazine. When I interviewed Dr. Scott Falci a Neurosurgeon at Craig Hospital in Denver, Colorado, an expert on the subject, a syrinx seemed to explain the onset of my spasticity and neuropathic pain. If this was the case I was looking at two surgeries, a 6-hour surgery to remove my rods, and another extremely complex surgery to fix the syrinx. Dr. Falci cautioned it is a serious surgery and is usually done if there is loss of sensation (sensation level moves higher). I had kept a log of my sensation level from the day I was injured—thankfully it hadn’t changed.
Dr. Falci said the main way to diagnose a syrinx is a case history, and by ruling out all other possible causes for the symptoms, I had ruled out most of them. A complete urological workup was done and ruled out kidney and bladder stones as possible causes for the symptoms.
By now I had endured four years of unexplained pain and fatigue; symptoms that were putting my everyday life on hold and seemed to be caused some something related to my SCI, most likely a syrinx, something that would mean the possibility of two major surgeries and a long recovery.
A follow-up appointment with my primary care doctor uncovered a clue that led to a “House” moment. Determined to help find an answer, my doctor ordered another blood panel, this time it showed I was anemic. I was referred to gastroenterologist for an endoscopy (small tube with a camera that goes through the mouth into the stomach and small intestine) and colonoscopy. The endoscopy revealed my small intestine was inflamed and had several tiny ulcers in it—a biopsy was taken from my small intestine and the results showed I had celiac disease http://www.mayoclinic.com/health/celiac-disease/DS00319/DSECTION – a condition caused by a reaction to gluten, which is found in wheat, barley and rye. To put it another way, I have gluten intolerance, meaning I’m allergic to wheat, barley and rye. A blood test confirmed that I have a “very high” sensitivity to gluten.
When I first got the diagnosis I had to chuckle because I had made sport of the media coverage of stars ranging from Oprah to Victoria Beckham touting how they had switched to gluten-free diets. When I would hear friends discussing the diet I say, “Oh boy, here we go again” and jokingly adopt a smug sounding voice and say “Excuse me waiter, is there wheat in this water? Because I’m gluten free!” Oh the irony!
I started eating gluten-free over a month ago. It was tough at first, especially when I realized that most beers are made out of wheat! When shopping I had to bring my reading glasses and a magnifying glass with me for the ingredient labels. Wow was it eye opening! It seems anything with more than three lines of ingredients has wheat in it, and a bunch of unpronounceable “additives” that probably aren’t healthy.
Perhaps this was nature’s way of telling me to get back to healthy (and tasty) eating. In my athletic days (usually broke) I snacked on fruits, and cooked my meals lots of stir fry vegetables with just a bit of meat (inexpensive and healthy). In the past decade or so I’d gotten into the habit of eating “toy food” (food that comes in a microwave or fast food wrapper), which probably isn’t good for me, and is adding a “spare tire” around my mid-section.
I’ve figured out the easiest way to shop gluten-free is to stick with fruit, vegetables, chicken and fish. I’m also figuring out a “go to” list of gluten free staples and I’ve discovered a number of gluten free beers! My favorite so far is Red Bridge by Anheuser-Busch.
And just like an ending to a “House” episode, it is working! When I went gluten-free my symptoms slowly started to diminish, and within four weeks they were gone! The neuropathic pain in my stomach and legs is gone, my leg spasticity has quieted down, the psoriasis on my hand is all but vanished and I seem to be getting my energy back.
The point of this isn’t to suggest everybody jump into being gluten-free, rather to offer one more tool in the myriad of possibilities when trying to solve problems associated with SCI. I was lucky that one simple cause explained and got rid of so many symptoms.
When it comes to gluten sensitivity, literature suggests it is still a grey area that effects a small part of the population. WebMD research suggests that 5% to 6%–about 18-million Americans—have some degree of gluten sensitivity. In various articles experts point out that although blood tests for gluten sensitivity have high degree of false negatives, if people are having symptoms that may be caused by gluten sensitivity (see resources) it is still a good idea to get a blood test. They further suggest that even if a blood test is negative, try a gluten-free diet for 2-4 weeks and see if symptoms improve.
As for me, I feel the diagnosis of celiac disease was like dodging a bullet—it has eased or eliminated severe symptoms and is giving me my energy back. I’m hopeful that avoiding toy food and getting back to a healthier eating pattern will also help me loose my “spare tire”.
Gluten-Free Diet; =Gluten Allergy; http://www.webmd.com/allergies/guide/wheat-allergy
Gluten Sensitivity: Fact or Fad?; http://www.webmd.com/diet/news/20120220/gluten-sensitivity-fact-or-fad?page=2
Para/Medic, Syrinx and Pain; http://www.newmobility.com/articleView.cfm?id=11770&srch=syrinx
Syrinx, “Untethering the Invisible Knot”, http://www.newmobility.com/articleView.cfm?id=11376&srch=Syrinx
Wheat allergy; http://www.webmd.com/allergies/guide/wheat-allergy
Bob Vogel, 51, is a freelance writer for the ROHO Community blog. He is a dedicated dad, adventure athlete and journalist. Bob is in his 26th year as a T10 complete para. For the past two decades he has written for New Mobility magazine and is now their Senior Correspondent. He often seeks insight and perspective from his 10-year-old daughter, Sarah, and Schatzie, his 9-year-old German Shepherd service dog. The views and opinions expressed in this blog post are those of Bob Vogel and do not necessarily reflect the views of The ROHO Group. You can contact Bob Vogel by email at firstname.lastname@example.org.