Gluten Free Choice Consulting

As a society, we desperately need to reduce the costs of caring for chronic illness, the costs of intensively treating infants, children and seniors for failure-to-thrive, and the costs of treating the epidemic of autoimmune disorders affecting people of all ages. One under-recognized player is celiac disease – a hereditary intolerance to the group of related proteins found in wheat, barley, rye, and related grains like spelt, faro, kamut and triticale. Celiac disease triggers destructive autoimmune reactions in the body, causing malabsorption of nutrients and a host of associated symptoms. In addition to societal efforts to transform the Standard American Diet (S.A.D.) and our sedentary lifestyles to healthier practices, endeavors aimed at reducing healthcare costs and human suffering should include adopting wide-scale population screening for celiac disease and other forms of gluten intolerance.

Why? Because for more than a decade, multiple, peer-reviewed studies show that celiac disease is associated with an increased risk for developing autoimmune thyroid disease including Hashimoto’s and Grave’s Diseases, rheumatoid arthritis, vasculitis, lupus (SLE), scleroderma, sarcoidosis, and chronic musculoskeletal pain. Untreated celiac disease can also result in kidney nephropathy that can lead to kidney failure, multiple skin disorders, anemia, fatigue, fertility problems, and early osteoporosis in women. You’ll notice that the disorders above do not include gastrointestinal disorders, but celiac disease is frequently implicated in these disorders, too, including gastro-esophageal reflux (GERD), esophagitis, and intestinal lymphomas. We are only beginning to understand the impact of celiac disease on neurological disorders, including epilepsy, peripheral neuropathy, various forms of ataxia (balance and gait disorders), and even mental health disorders like schizophrenia.

What sort of pie-in-the sky and anecdotal “evidence” lies behind these outrageous claims? These findings come from The Mayo Clinic, The University of Maryland Center for Celiac Research, The Celiac Disease Center at Columbia University, The University of Chicago, and Johns Hopkins Bloomberg School of Public Health, as well as work by international celiac experts like England’s Dr. Marios Hadjivassiliou and Italy’s Dr. Carlo Catassi. It’s hardly pseudo-science.

As early as 2007, studies published in the British Medical Journal showed the feasibility of wide-scale population screening by community health nurses using a rapid antibody test and proved that the number of children identified could be dramatically increased with early screening. We already have the technology to do this, although better tests are a hot area of research and are continuing to improve. The cost of wide-scale population screening needs to be weighed against the enormity of our current health-care burden, which could be significantly and substantially lessened through proper diagnosis and treatment for celiac disease, now considered among the most common, undiagnosed chronic diseases. According to most research published in the past several years, conservative prevalence estimates remain roughly at 1 in 100, although only a fraction of these individuals have been diagnosed. This makes celiac disease more common than Crohn’s disease, ulcerative colitis, and cystic fibrosis combined—diseases with which we are much more familiar. Additionally, an international group of experts convened recently in Oslo, Norway to discuss the phenomenon of “non-celiac” gluten intolerance—ultimately recognizing it as a separate entity from celiac disease, with a different but significant immune response. This new definition of gluten intolerance can be applied to an estimated 6% of the population, dramatically increasing the number of people thought to be affected by immune-driven reactions to gluten proteins. Just how common is this? Here are some statistics for comparison:

• MS affects more than 350,000 people in the United States and 2.5 million worldwide. Celiac disease affects more than 3 million people in the United States alone.(The Cleveland Clinic, 2011)
• Coronary heart disease currently affects 6% of the US population—approximately equal to the number of people suffering from non-celiac gluten intolerance.(CDC, 2010)

From a gluten intolerance perspective, we need to get our act together, and soon, because the true incidence of celiac disease is rising rapidly. Celiac disease has been well-documented to have increased 400% in four and a half decades, and according to celiac expert Dr. Alessio Fassano, “the incidence of celiac disease in the US since 1974 has doubled every 15 years.” A Finnish study found similar increases in that country. And although awareness of celiac disease is increasing diagnosis, the 2009 Mayo Clinic serologic study proved increased prevalence between two matched cohorts spaced many decades apart. Simply put, celiac disease is increasing globally.

Early testing is crucial because celiac disease is found to nearly always onset before age 7, yet the time to diagnosis based on clinical symptoms can be decades, leading to lifelong illness and damage that is very difficult to repair. And—because celiac disease is both preventable and treatable with a gluten-free diet: no drugs, no hospitalizations, and no expensive procedures. In contrast, untreated celiac disease can lead to serious complications and can even be fatal. Testing for celiac disease should always be done among at-risk persons, including first-degree relatives of those with diagnosed celiac disease, and persons with Down’s syndrome or with Type I Diabetes. May has been designated as "Celiac Awareness Month". Let’s take this opportunity to begin a serious discussion on implementing population screening for celiac disease, beginning in the pediatrician’s office. Doing so will ultimately lead to a net savings, not an increase, in health care dollars. Are you listening, Governor Kitzhaber, MD?

Wendy Cohan, RN – Gluten Intolerance Educator and author of Gluten Free Portland Resource Guide, The Better Bladder Book, and the forth-coming (2012) What Nurses Know…Headaches. www.glutenfreechoice.com

References:

• Screening for Celiac Disease in a North American Population: Sequential Serology and Gastrointestinal Symptoms; Kent D Katz MD, Shahrooz Rashtak MD, Brian D Lahr BS, MS, L Joseph Melton III MD, Patricia K Krause BS, MBA, Kristine Maggi PA-C, Nicholas J Talley MD, PhD and Joseph A Murray MD; The American Journal of Gastroenterology 106, 1333-1339 (July 2011) | doi:10.1038/ajg.2011.21
• International experts define gluten sensitivity as a separate immune response from celiac disease. 14^th International Coeliac Disease Symposium, Oslo, Norway. http://www.schar.com/us/news-events/news/international-celiac-symposium-2011-summary/
• Diagnosis and management of coeliac disease in children; Richard Steele, for the CRF. Rubio-Tapia A, Kyle RA, Kaplan EL, Johnson DR, Page W, Erdtmann F, Brantner TL, Kim WR, Phelps TK, Lahr BD, Zinsmeister AR, Melton LJ 3rd, Murray JA. Postgrad Med J (BMJ) 2009 Jul;137(1):88-93. Epub 2009 Apr 10;

2/18/12 - I am finishing up a book for Demos Health, to be called, "What Nurses Know...Headaches". Look for it in late summer, 2012. choosehealth@glutenfreechoice.com
 
Thanks for your help with this exciting new project!

What’s up with this crazy title? It’s provocative for a reason—because too few of us are aware of the symptoms associated with an important condition that could be affecting your health: celiac disease. This hereditary autoimmune disorder is a form of dietary intolerance to the grains wheat, barley, rye, and their close relatives. Celiac disease is linked to a host of health problems ranging from “classic” gastrointestinal symptoms that include gas, bloating, and diarrhea (or constipation), to well-known autoimmune disorders like Lupus, Hashimoto’s Thyroiditis, and the skin condition Psoriasis.

Gluten intolerance has been in the news more often recently, and on talk shows as well, and you may have noticed the increase in gluten-free products on grocery-store shelves. Estimates for the number of Americans with some form of gluten intolerance range from 6% to 11%. But not everyone with gluten intolerance has celiac disease—which is defined by destruction of the intestinal villi, which can often be seen on duodenal biopsy of those with the disorder. One of the results of this autoimmune-driven inflammation and flattening of the villi is a decrease in the body’s ability to absorb fats. When fats are not absorbed in the small intestine, they end up in the large intestine, and eventually make their circuitous way out of the body as—you guessed it. And when stool (the medically preferred term for solid waste) contains large amounts of fat, or excessive gas—also associated with celiac disease—it floats. In fact, bulky, hard-to-flush, and floating stools are a cardinal sign of active celiac disease, along with fatigue, iron deficiency anemia, frequent or chronic oral canker sores, joint and muscle pain, and both osteopenia (bone thinning) and osteoporosis (loss of bone mass and bone density), which increase the risk for fractures.

One of the other curious things about celiac disease is that it can lead to inflammation just about anywhere in the body. This inflammation, in turn, can lead to a huge array of symptoms, so, quite often, celiac disease may actually be missed by doctors, who go on to diagnose another disorder instead, hence the nickname “the great masquerador”.

As a nurse and celiac disease educator, I’ve worked with patients whose presenting symptoms included: mental fogginess, gait disturbances, balance disorders, learning disabilities, Autism Spectrum Disorder, chronic skin conditions, failure-to-thrive (in both children and the elderly), cognitive decline, numbness and tingling in the hands and feet, late bed-wetting in children, bladder pain, frequency and urgency,  psychological disorders, including depression and bipolar disorder, chronic hives, chronic urinary tract infections, thyroid disorders, and infertility. What is the common denominator? It’s the body’s immune-driven response to ingesting one of our most common food sources.  It is difficult to believe that all of these frustrating, persistent, and often painful health conditions could be triggered by eating delicious breads, hand-made pasta, bakery pastries, and our everyday breakfast cereals. But it’s true for over 3 million people in the US, and that number is growing.  Yet what’s truly scary is that we don’t clearly understand why celiac disease has increased more than four-fold in the past five decades.

If you think that you may have a sensitivity to gluten-containing grains, learn all you can about this increasingly common disorder, and ask your physician to run a “celiac panel”, including the most widely available and definitive blood tests: Total IgA, IgA and IgG anti tissue transglutaminase (tTG) and IgG  deamidated gliadin peptide (DGP), and possibly also endomesial antibodies (EMA). The newer IgG DGP test produces fewer false negatives and is more successful in patients who are IgA deficient, and in very young children. There are more controversial saliva based tests and stool tests available, and some newer panels which include tests on a wider array of potentially immune-activating components of wheat and other gluten-containing grains, but these recently-developed tests may not be available in your area.

Even if your celiac disease tests are negative, you may still have gluten intolerance in a form other than celiac disease. Nearly half of the patients in my local celiac support group fall into this category. Their tests, some conducted many years ago before better techniques, were negative, but the results of eating a strict gluten-free diet were very, very positive. Go back to gluten? “Never”, they say, and now the strong surge of new gluten-free products into the marketplace makes it much easier to follow this perfectly healthy, nutritionally sound diet. For someone with celiac disease, gluten-free foods are not a fad, or a weight-loss strategy. They’re a way of life, a way of avoiding intense discomfort and serious illness, and simply a way to stay healthy.

I’ll conclude with a caveat: celiac disease is not the only cause of floating stools. A change in dietary habits such as increasing fiber, eating a lot of gas-producing foods, or contracting gastroenteritis may temporarily result in floating stools. Other conditions associated with floating stools include Cystic Fibrosis, Short Bowel Syndrome, and a deficiency of sugar-digesting or pancreatic enzymes. Floating stools may be nothing to worry about, but if they persist for longer than two weeks, and you suffer from some of the symptoms associated with celiac disease, such as fatigue, fogginess, non-traumatic bone fractures, anemia, or gastrointestinal issues, they may be a clue that something in your digestive system may be “out of order”, and it is a good time to have an open discussion with your family physician. 

Copyright Wendy L.Cohan, RN 11/23/2011; This article may not be copied or reproduced in any form without the written permissoin of the author.