Q. I’m 36 years old and a T3 complete para. A nondisabled friend of mine had been having pain and cramping in his stomach along with occasional bouts of diarrhea for the past three years. After a battery of tests, he found out he has celiac disease, and now he has to adhere to a strict diet with no wheat, barley or rye products to avoid damage to his small intestine. How common is celiac disease, and since I have no sensation in my stomach, how would I know if I had it?
A. Dave, your question is a timely one. Many celiac disease symptoms are similar to living with chronic spinal cord injury. I know, because at 53, I’m in my 28th year as a T10 complete para and was recently diagnosed with celiac disease.
Celiac disease is a genetic autoimmune disease that causes the body’s immune system to attack the small intestine if a person eats even a minute amount of gluten — a protein found in wheat, barley and rye — which causes inflammation and damage to the small intestine. Failure to diagnose celiac disease — or continuing to consume foods with gluten if you have the disease — will cause damage to the small intestine and lead to malnutrition, weight loss, and can eventually cause irreversible damage and an untimely death (compared to the general population). A person with celiac must adhere to a gluten-free diet for life. Doing so will enable the small intestine to heal. Although celiac disease is inherited, it can emerge at any age.
According to the Mayo Clinic, the incidence of celiac disease in the United States is four times more common now that it was in the 1950s and currently affects at least 3 million Americans. The cause for the increase isn’t known. Theories include better diagnosis of celiac disease, and, ironically, better sanitation and hygiene (when the immune system isn’t stressed by fighting bacteria at an early age, our guts don’t develop to their full potential).
A much larger group of people — more than 18 million Americans — have gluten sensitivity, which causes many symptoms of celiac disease, but the reaction isn’t bad enough to cause small intestine damage.
Eating gluten-free has become a popular topic in news stories and diet books and talk shows. Oprah Winfrey has tried a gluten-free diet, which has boosted awareness. Most grocery stores now have gluten-free sections and many food manufacturers are creating gluten-free items —including gluten-free beer! Also, many restaurants are now offering gluten-free menus.
Although SCI doesn’t make you more likely to have celiac disease or gluten sensitivity, it does make it more difficult to diagnose. Depending on your level of injury, you may not feel certain symptoms like stomach pain or cramps, and many of the symptoms are the same as chronic SCI. According to the Mayo Clinic, celiac symptoms include: anemia, intermittent diarrhea or constipation, abdominal cramps, gas and bloating, joint pain, neuropathic tingling in the legs and feet, osteopenia or osteoporosis, and fatigue. Symptoms not associated with SCI include migraine headache and dry flaky skin similar to eczema.
The Mayo Clinic recommends seeing a doctor if you have any of these symptoms. With SCI, an increase of any of these symptoms is always a reason to see your doctor. This is especially important if anybody in your family has gluten sensitivity or celiac disease.
Gluten sensitivity and/or celiac disease is diagnosed with a blood test that detects higher than normal levels of certain antibodies (anti-endomysium and anti-tissue transglutaminase). It is important to continue your usual eating pattern before getting the blood test because switching to a gluten-free diet will lower the antibodies and cause a false negative. Another test is an endoscopy — a tiny camera fed through the esophagus into the stomach. If inflammation is seen in the small intestine, the endoscope will identify a small sample of intestinal tissue to examine under a microscope.
In my experience, celiac symptoms came on suddenly four years ago — a neuropathic sensation like pins and needles on the right front right side of my stomach at belly button level (my level of sensation). At first it was mildly annoying, but got worse over months. Doctors suspected the cause was everything from an aggravated disc, scoliosis, constipation, to a syrinx. A series of tests, X-rays — and a CT scan with contrasting dye in my stomach — came up negative, which ruled out scary possibilities like cancer, but did not determine a diagnosis. Prescription stool softeners and laxatives also failed to alleviate the symptoms.
The pain in the side continued, and other symptoms cropped up. Leg spasticity drastically increased as did neuropathic leg pain — all of which pointed to a syrinx. However, the old-fashioned stainless steel rods in my back meant an MRI wouldn’t work, and I wasn’t enthused about having a contrasting dye injected into my spinal cord and being further bombarded by radiation from another CT scan. I also developed a bad case of eczema in my right hand and arm.
After four years of tests with no diagnosis, my primary care physician ordered another blood panel. The results showed I was anemic. He sent me to a gastroenterologist who did an endoscopy, which showed inflammation — moderate damage — of the small intestine. A biopsy and another blood panel confirmed I have celiac disease.
For the past six months I’ve been on my life-long journey of gluten-free eating. My symptoms started to lessen within a month, and within four months they all but disappeared. Stomach pain is gone, spasticity almost completely gone, neuropathic leg pain all but gone, and the eczema has vanished. I just wish I’d had the celiac blood test when the symptoms first appeared so I could have avoided damaging my small intestine, which will heal, but may take up to two years.
Is going gluten-free for you? Try a gluten-free diet and see if it helps. People report resolution of symptoms in three to four weeks of a gluten-free diet.
My brother, who is nondisabled, had been dealing with severe stomach pain, diarrhea, and skin rashes for years. After I was diagnosed, I suggested he tell his doctor (our mom also tested “slightly” reactive to gluten). My brother’s blood tests for gluten sensitivity came back negative. However, according to Dr. Alessio Fasano, who heads the University of Maryland Center for Celiac Research, “false negative” blood tests occur about 15-20 percent of the time. My brother tried a gluten-free diet and within three weeks all of his symptoms resolved. He discussed this with his doctor, who suggested he stay on a gluten-free diet and work with a dietician to make sure he is doing it correctly. He also reports that within two hours of eating a couple of French fries — which were cooked in the same oil as breaded fish — he had a severe stomach upset and diarrhea episode.
In a WebMd article titled Going Gluten-Free, Dr. Stefano Guandalini, director of the University of Chicago Celiac Disease Center, cautions about committing to a long term gluten-free diet without consulting a dietician or doing research, as it can result in deficiencies in iron, vitamin B12, vitamin D, magnesium, fiber, and other nutrients often contained in fortified breads, cereals, and grains, something many gluten-free products do not have. Manufactured gluten-free breads, cereals etc., are also quite expensive, often double the usual price. The best way to avoid this is to avoid anything that comes in a wrapper and eat fruit, vegetables, meat and fish.
For me, I’ve re-learned to shop where true health food is located — in the grocery’s fresh meat, fish, fruit and vegetable aisles. I’m also learning the joy of taking time away from the computer and slicing and dicing veggies and meat to stir-fry in my newly seasoned wok — and looking forward to grilling up a storm when the weather warms up.
• Celiac Disease Checklist; www.celiaccentral.org/disease-symptoms-checklist/
• Celiac Disease; www.mayoclinic.com/health/celiac-disease/DS00319/DSECTION=symptoms
• Gluten-Free Diet, Gluten Allergy; www.webmd.com/allergies/guide/wheat-allergy
• Gluten Sensitivity: Fact or Fad?; www.webmd.com/diet/news/20120220/gluten-sensitivity-fact-or-fad?page=2
• Syrinx and Pain; www.newmobility.com/2011/01/paramedic-syrinx-and-pain/