| Celiac disease and non-Celiac Gluten Sensitivity | | | | diet that works? |
| (NCGS) | | | | Within the medical community, there seems to be an |
| Gluten intolerance resulting in symptoms and illness | | | | irrational resistance to a more widespread |
| similar to celiac disease (CD) without meeting | | | | recommendation for gluten avoidance. Physicians who |
| diagnostic criteria for CD is a new concept. This | | | | maintain that those who fail to meet strict criteria for |
| concept of non-celiac gluten sensitivity (NCGS) or | | | | diagnosis of CD should not be told they have to |
| gluten related disease (GRD) may be a new paradigm | | | | follow a gluten-free diet will often acknowledge that |
| that is hard for some people to swallow, especially | | | | many of these patients respond favorably to a GFD. |
| when I suggest that it affects as much as 10% to | | | | Some, however, continue to insist that a GFD trial is |
| 30% of the population. | | | | unnecessary, unduly burdensome, or not scientifically |
| Wheat gluten as a cause of illness | | | | proven to benefit those who do not have CD. This |
| Gluten ingestion is an avoidable, treatable, and | | | | position is taken despite the absence of evidence |
| reversible cause of illness in many people. It is | | | | that a GFD is unhealthy or dangerous and much |
| contributing to the rising epidemic of autoimmune | | | | evidence supporting it as a healthy diet. |
| diseases. Many resist these concepts finding them | | | | Gluten-free diet is safe, healthy and works! |
| either unbelievable, unacceptable or both. I believe | | | | Those of us who have observed dramatic |
| that their rejection is neither rational nor helpful. It | | | | improvements, both personally and professionally, find |
| may be reasonable to reject them for cultural or | | | | such resistance to recommending a GFD to a broader |
| financial reasons though I don't believe they can | | | | group of people difficult to understand. Considering |
| legitimately be rejected based on scientific grounds or | | | | the potential dangers and limited benefits of the |
| experience. | | | | medications that we, as doctors, prescribe to |
| Celiac disease not rare and is often missed as a | | | | patients for various symptoms, it really seems absurd |
| diagnosis | | | | to reject dietary treatments. Yet, it does not seem |
| Celiac disease is not rare. CD affects 1 in 100 people | | | | to cross most doctor's minds to suggest something |
| in the world. Yet the diagnosis of CD is still frequently | | | | as safe and healthy as a GFD, let alone to, at least, |
| missed and/or delayed. It is a common disease that is | | | | test for CD. |
| often undiagnosed or misdiagnosed. It may even be | | | | Gluten-free diet changes doctor's life, health and |
| the most common autoimmune disorder. Though the | | | | medical practice |
| risk is largely genetic, it is preventable by simply | | | | |
| avoiding gluten. Autoimmune diseases associated with | | | | My personal journey into gluten related illness began |
| CD may also be preventable by avoiding gluten. | | | | when my physician wife was diagnosed with CD. I |
| What doctors remember from medical school about | | | | had mentioned to her numerous times over several |
| Celiac disease | | | | years that I thought she should be tested for CD. |
| When I was in medical school over twenty-five years | | | | After her second pregnancy she became |
| ago, I was taught that CD was rare. In residency we | | | | progressively more ill experiencing, for the first time |
| were shown photos of short, emaciated children with | | | | in her life, diarrhea, fatigue, and chronic neuropathy. |
| skinny limbs and pot-bellies. We were told that their | | | | An upper endoscopy revealed classic endoscopic |
| medical history included symptoms of profuse, | | | | findings. CD blood tests were elevated, and genetic |
| watery, floating, foul-smelling diarrhea, and iron | | | | testing confirmed she was DQ2 positive. This forever |
| deficiency anemia. The picture and story was burned | | | | changed our lives and my practice. But the story |
| into the hard drive of our brains, not necessarily | | | | does not end there. |
| because anyone believed we would see someone | | | | Irritable bowel syndrome misdiagnosed by doctor |
| with CD in our practice, but because CD was | | | | |
| considered rare and odd enough that it was a | | | | Having diagnosed myself with irritable bowel |
| favorite board examination question. That image and | | | | syndrome (IBS) and lactose intolerance in medical |
| story remains in the mind of most physicians, | | | | school, I had not considered gluten as a possible |
| preventing them from seeing CD in a much broader | | | | cause of my symptoms until my wife turned the |
| light. | | | | table on me and said I should also be tested for CD. |
| Blood tests for Celiac disease become available | | | | My blood tests were not elevated but I was |
| When I entered subspecialty training in | | | | confirmed to also be DQ2 positive. |
| gastroenterology, 13 years ago, specific blood tests | | | | |
| for CD were available but still new. We were | | | | Enterolab stool testing for gluten sensitivity helpful |
| beginning to order the blood test when classic | | | | though not accepted or understood by some doctors |
| symptoms of CD were seen without an identifiable | | | | |
| cause, or if we happened to sample the small | | | | Having observed a good response to GFD in a few |
| intestine during endoscopy and classic Sprue changes | | | | of my patients who had elevated stool gliadin |
| were seen in the intestinal biopsy. CD was still | | | | antibody levels, I looked critically at the research |
| considered somewhat rare. We did not routinely | | | | behind this testing and spoke with Dr. Ken Fine |
| biopsy the small intestine to screen for CD, and | | | | before paying to have my entire family tested |
| genetic tests were not yet available. | | | | through Enterolab. Both my gliadin and tTG antibodies |
| Celiac disease is common but gluten sensitivity more | | | | were elevated and I responded well to a GFD. I |
| common | | | | began recommending stool antibody and DQ genetics |
| It wasn't until Dr. Fasano, a pediatric | | | | to patients who did not meet strict criteria for CD |
| gastroenterologist from Italy, published a landmark | | | | but appeared to have symptoms suggestive of |
| article reporting Celiac disease affected 1/133 people | | | | gluten sensitivity. Contrary to some critics' claims |
| in the U.S that American doctors began thinking more | | | | about the stool antibody tests, there are many |
| about it. Only recently has it been accepted that | | | | people who do not have elevated levels. Almost |
| family members of people with CD, those with | | | | everyone I have seen with elevated levels has noted |
| digestive symptoms, osteoporosis, anemia, and | | | | improvement with GFD, including myself. |
| certain neurological, skin or autoimmune disorders | | | | IBS and lactose intolerance improves with gluten free |
| constitute high risk groups for celiac disease. They | | | | diet |
| have an even higher risk of between 2% to 5%, | | | | |
| though most physicians are unaware of these | | | | Not only did my "IBS" symptoms resolve and lactose |
| statistics. Every week, using the strict diagnostic | | | | tolerance dramatically improve, but my eyes were |
| criteria, I confirm 2-3 new of CD. I also see 5-10 | | | | further opened to the spectrum of gluten related |
| established CD patients. However, for every | | | | illness or symptoms. I was already aggressively |
| identified CD patient there are 3-10 who have clinical | | | | looking for CD in my patients but I began considering |
| histories consistent with CD, but who fail to meet | | | | non-celiac gluten sensitivity (NCGS) or gluten related |
| the diagnostic criteria. Yet they respond to a GFD. | | | | diseases (GRD) in all my patients. What I have found |
| Many have suggestive blood test results, biopsies and | | | | is that gluten is an extremely common but frequently |
| or gene patterns but some do not. | | | | missed cause of intestinal and non-intestinal |
| Genetic link to Celiac disease and gluten sensitivity | | | | symptoms. Dramatic improvements in symptoms and |
| More than 90% of people proven to have CD carry | | | | health can be observed in patients who try a |
| one or both of two white blood cell protein patterns | | | | gluten-free diet. |
| or human leukocyte antigen (HLA) patterns HLA DQ2 | | | | Eating gluten probably not safe if you are genetically |
| and/or DQ8. However, so do 35-45% of the general | | | | at risk for Celiac disease |
| U.S. population, especially those of Northern European | | | | |
| ancestry. Yet CD is present in only 1% of the same | | | | Since only a fraction of DQ2 or DQ8 positive |
| population. DQ2 or DQ8 are considered by some | | | | individuals have or will eventually get CD, does that |
| experts to be necessary though not sufficient to | | | | mean gluten is safe to eat if you have those gene |
| develop CD. However, CD without those two genes | | | | patterns? Even if you do not get CD, does continuing |
| has been reported. | | | | to eat gluten put you at risk for other autoimmune |
| Neurological problems and other gluten related | | | | diseases, especially ones linked to the high risk gene |
| illnesses | | | | patterns? Why do some people with these patterns |
| Other gluten related diseases including dermatitis | | | | get CD but most do not? Do some who do not have |
| herpetiformis, the neurological conditions of ataxia | | | | CD experience symptoms from gluten that would |
| and peripheral neuropathy, and microscopic colitis | | | | improve with GFD? These questions need to be |
| have been described in DQ2 and DQ8 negative | | | | answered so that people can decide whether they |
| individuals. The DQ genetic patterns found in other | | | | want to risk that gluten is causing them to be ill, or is |
| gluten related diseases and associated with elevated | | | | increasing their risk of CD or other autoimmune |
| stool antibody tests indicate that many more people | | | | diseases. |
| are genetically at risk for gluten sensitivity. | | | | A new paradigm for gluten sensitivity and Celiac |
| Furthermore, the response of numerous symptoms | | | | disease |
| to gluten-free diet is not limited to people who are | | | | |
| DQ2 or DQ8 positive. | | | | Added to my gluten-free diet, a daily diet of scientific |
| Gluten free diet is the only treatment for Celiac | | | | articles on celiac and gluten related disease has |
| disease and gluten sensitivity | | | | revealed that there are many clues in the literature |
| Most celiac experts agree upon and feel comfortable | | | | and research indicating the existence of non-celiac |
| advising people who meet the strict criteria for the | | | | gluten sensitivity or a need to broaden our definition |
| diagnosis of CD: they need to follow a life-long | | | | of CD. Dr. Hadjivassiliou has called for a new |
| gluten-free diet. Controversy and confusion arises | | | | paradigm. He advocates that we start thinking of |
| when the strict criteria are not met, yet either | | | | gluten sensitivity not as an intestinal disease but a |
| patient and/or doctor believe that gluten is the cause | | | | spectrum of multiple organ, gluten related diseases. |
| of their symptoms and illness. | | | | Mary Schluckebier, director of CSA, asks that |
| Wheat-free , yeast-free and low carbohydrate diets | | | | physicians interested in this area work on forming and |
| are popular but not adequate | | | | agreeing on new definitions for gluten related illness |
| Many alternative practitioners advise wheat-free, | | | | while pushing for more research and cooperation |
| yeast-free diets, which are frequently met with | | | | between medical researcher, food and agricultural |
| favorable response to what is really a form of GFD. | | | | scientists, dieticians, and food manufacturers. |
| Similarly, the popularity and successes of low | | | | The larger hidden epidemic of gluten sensitivity is real |
| carbohydrate diets require adherence to a diet that | | | | |
| has been credited with improvement of headaches, | | | | Only those who look for NCGS and advise a GFD to |
| fatigue, bloating, musculoskeletal aches, and an | | | | those not meeting criteria for CD, are going to see |
| increased general sense of well-being that is | | | | the larger group of people who have a favorable |
| self-reported by many dieters. I believe this is | | | | response to a broader application of the gluten-free |
| because of the low gluten content. Gluten avoidance | | | | diet without further research. Those of us who are |
| is clearly associated with improvement of many | | | | personally affected by gluten sensitivity or |
| intestinal and extra-intestinal symptoms such as those | | | | professionally involved in treating individuals with |
| listed above. | | | | adverse reactions to gluten (or both) should support |
| Many improve after discovering on their own that a | | | | the research into the broader problem of gluten |
| gluten-free, wheat-free diet helps | | | | related illness. I believe that non-celiac gluten |
| Many also stumble onto this association after initiating | | | | sensitivity is real and will be validated in further |
| a gluten-free diet or wheat-free diet on the advice | | | | studies. I am presenting two years of my data at |
| of friends or family members; dieticians, nutritionists, | | | | one of our national meetings in October 2007. If you |
| alternative or complementary practitioners; or after | | | | have further questions or interest in this area visit |
| reading an article on the Internet. | | | | my website and blog. |
| Why is there an irrational resistance to gluten-free | | | | |