FIBROMYALGIA AND IBS: CELIAC DISEASE IN DISGUISE?

Could some people diagnosed with fibromyalgia actually be suffering from celiac disease? The National Fybromyalgia Association seems to think so. The May-August issue of its magazine Fibromyalgia Aware includes an overview of celiac disease written by Elaine Monarch of the Celiac Disease Foundation.

Available on PDF, the article--"Are You the One?"--cites nationally recognized research to establish how nearly 3 million Americans are estimated to have undiagnosed celiac disease, then states

A study by one nationwide celiac disease support group* indicated that among adults ultimately diagnosed with celiac disease, 9 percent were orginally diagnosed with fibromyalgia and 30 percent with IBS. Since many patients with CD have muscle aches, joint pains, GI symptoms, and fatigue, it is understandable that those people might get a label of fibromyalgia.

In addition to the tender points exam, the diagnosis of fibromyalgia is based on a number of symptoms that can be due to other conditions--celiac disease among them. This is further evidence that different so-called "silent" symptoms need to be taken seriously by physicians and thoroughly evaluated before a diagnosis of fibromyalgia (or IBS) is given.

People diagnosed with celiac disease typically experience greatly improved health when excluding wheat, barley, and rye from their diets. Diagnostic testing for celiac disease should, however, take place while one is still eating those foods.

* Cited in Dr. Peter Green's book Celiac Disease: A Hidden Epidemic.

DR. ALESSIO FASANO ON CELIAC DISEASE

In the aftermath of Digestive Disease Week (DDW), here are some highlights of Dr. Alessio Fasano's Medscape report, "Celiac Disease in the Clinical Spotlight -- What's New and What's the Path Forward?"

The general perception that celiac disease is rare in some countries, such as the United States, was unsubstantiated by any large epidemiologic study.... This controversy has been put to rest by a series of recent reports suggesting that this disorder is as frequent in the United States (prevalence in the general population of 1:133) as in Europe. This observation has been expanded to other regional areas, including North Africa, Asia, Oceania, and South America, where celiac disease is now recognized as a frequent condition affecting approximately 0.5% to 1% of the general population. Furthermore, the total prevalence of celiac disease seems to also be on the rise, as suggested by a study from Finland in which the prevalence of the disease doubled during the last 2 decades, a trend similar to that observed for other autoimmune diseases...

Given the low level of suspicion among healthcare professionals, particularly when the disease presents in an atypical manner, many cases of celiac disease remain undiagnosed and carry the risk for long-term complications, including osteoporosis, infertility, psychiatric and behavioral disorders, or cancer. One controversial topic addressed by 2 studies during this year's DDW meeting concerned the association between celiac disease and irritable bowel syndrome (IBS). A prospective multicenter study conducted in the United States suggested that more than 7% of IBS subjects enrolled tested positive for celiac disease antibodies. Whether all of these patients were indeed affected by celiac disease remains to be established, as only a small number had the diagnosis confirmed by upper endoscopy. Conversely, a prospective observational study performed in The Netherlands established that screening patients with IBS for celiac disease is not cost-effective....

Currently, total and lifelong abstinence from gluten ingestion remains the cornerstone of treatment for the disease. This diet requires an ongoing education of patients and their families, by both physicians and dieticians....

The article goes on to identify the usual assortment of serological tests as playing a "definitive role in the diagnostic process" and calls the upper endoscopy the "mainstay for establishing the diagnosis of celiac disease." It says that positive genetic testing for the DQ2 and/or DQ8 haplotypes is not diagnostic, and it doesn't mention any stool tests. This is consistent with the conventional wisdom that diagnosis involves two basic types of testing: a panel of blood tests (during a period when the patient is still ingesting gluten) and an endoscopic biopsy of the upper intestine.

Fasano wraps up by noting research into the possibility that a gene involving intestinal permeability may be directly linked to celiac disease. I believe that both Fasano and the doctor behind this new genetic research will offer presentations at November's International Celiac Symposium in New York City.

NEWS FROM ACROSS THE POND

I've noticed some interesting news from the United Kingdom, where the Queen's subjects waste much time spelling celiac as coeliac.

I know. I know. I shouldn't let this spelling issue distract me from sharing the news that the National Institute for Health and Clinical Excellence (NICE) now advises that patients suspected of having Irritable Bowel Syndrome (IBS) should be tested for celiac disease (or something called "coeliac disease") as part of the diagnostic process. This blog has repeatedly noted that celiac disease can be mistaken for IBS.

This item mentions the NICE guideline and also draws attention to a home screening test for celiac disease, available in the UK, that has been measured to be 96% accurate. It advises users to consult with physicians to confirm the diagnosis.

In another development, Coeliac UK is working with the Hospital Caterers Association "to improve its provision of gluten-free meals." Coeliac UK, which kicked off its Awareness Week "Food Without Fear" campaign today, produced a Coeliac UK Toolkit to provide guidance to food providers in venues such as schools, hotels, airlines, and restaurants as well as hospitals. It has also launched a competition throughout the UK "to create an innovative gluten-free dish," as this item this item puts it. Here's more on the subject.

Jolly good news, don't you agree?

Meanwhile, in Mississippi

Here's a television appearance from Elizabeth Smith, founder and president of the Gulf Coast Celiac Foundation. Elizabeth, also the owner of Celiac Health Management, talks with the WLOX anchors about how celiac disease is often misdiagnosed. She advises that people diagnosed with conditions such as IBS, but who do not improve with medical treatment, should inquire as to whether they might also have celiac disease.

And there's an NYC connection, too: Even though the Gulf Coast Celiac Foundation is far from the Big Apple, its website includes a number of papers by Dr. Peter Green of the Celiac Disease Center of Columbia University (CDCCU).



Source (3:35)

On Sale Now: The G Free Diet

Curious about Going Gluten-Free? Get Tested First!

Elisabeth Hasselbeck appeared on Good Morning America today to promote her new book The G Free Diet. At the GMA website you can see the segment, read an excerpt from her book, and find a link to the book's website, www.gfreediet.com.

I'm glad that Elisabeth is raising awareness of celiac disease, which is still grossly underdiagnosed, and it's good to see that her story might alert people diagnosed with IBS that they might actually have celiac disease—but I hope that people do not go on a gluten-free diet before getting tested for the condition. I try to avoid shouting on this blog, but here goes: GET TESTED FIRST!

As I'm sure Dr. Peter Green (Elisabeth's doctor and mine) would be glad to tell you, getting screened for celiac disease is a simple and relatively inexpensive process that should be done in coordination with an informed physician. The first step is to get a series of blood tests while gluten is still in your diet. You can find the list of the blood tests at the website of the Celiac Disease Center of Columbia University (CDCCU), where Dr. Green is the director as well as the founder. Based on the results of the tests, the physician may suggest proceeding with an endoscopic biopsy to look for gluten-related intestinal damage, which is the gold standard for a diagnosis.

Speaking of gold, I want to emphasize that the time when you're considering trying out a gluten-free diet is the golden moment for being screened and tested for celiac disease (which is, strictly speaking, not an allergy). Instead of going on the diet right away, make that appointment with your physician and discuss taking the blood tests. After the results come in, you can talk about the next move. (The biopsy also yields the best results while you're still consuming gluten.) After you get the test results, you can still choose to eliminate gluten from your diet, but at least you'll have a baseline that doctors can refer to. If your tests turn out to be positive, they can be useful in monitoring the success of your diet, getting family members tested as well, and even getting federal tax breaks for your expensive gluten-free food!

Want more info? Try the National Foundation for Celiac Awareness (NFCA), the Celiac Disease Foundation (CDF), the William K. Warren Medical Research Center for Celiac Disease (WCCD), the Celiac Disease Center at Beth Israel Deaconess Medical Center (CDCBI), the University of Maryland Center for Celiac Research (UMCCR), and Mayo Clinic.

Also, be aware that Dr. Green has co-written his own book, Celiac Disease: A Hidden Epidemic. Don't expect to read about Elisabeth in that book, but do expect to spend some time in the company of one of the world's experts on the subject.

Here you can see Elisabeth and Dr. Green on The View, back in March 2007.



Source (7:12)

Thanks to Erin at the New York City Celiac Disease Meetup Group (NYCCDMG) for the lead.

Thought Leaders Program 2009: Dr. Peter Green

The Celiac Disease Center at Columbia University (CDCCU) recently hosted a day-long Thought Leaders program where members of the center spoke about various aspects of celiac disease and invited feedback from dozens of attendees. The guests, who came from as far away as California and Minneapolis, included Merle Cachia and Mary Ferry of New York City's CSA Chapter, Sue Goldstein of the Westchester Celiac Sprue Support Group (WCSSG), Sloane "Allergic Girl" Miller, Michael Thorn of Suffolk County Celiacs (SCC), and representatives of the Celiac Disease Foundation (CDF) and The Kogan Celiac Center of New Jersey (KCC).

Official video cameras were present, so it's possible that most or all of the presentations will go online.

For instance CDCCU founder/director Dr. Peter Green's comments are already on YouTube (and in this blog post) in three parts.

PART I (8:55)
Dr. Green's opening remarks cover the origin of the CDCCU, including the part played by Sue Goldstein, Rory Jones, and Ann Whelan. Dr. Green stresses the importance of fundraising, mentions the influence of a $300,000 donation earmarked for patient care and education, and discusses the number of doctors at Columbia who have now been diagnosed with celiac disease themselves. In discussing his staff, Dr. Green emphasizes the importance of the nutritionist and expresses his concern about the quality and credibility of professionals trying to deal with celiac disease.




PART II (8:22)
Dr. Green discusses the new understanding of celiac disease as a multi-system disorder than can affect any organ. He emphasizes the importance of conventional testing and notes that while Finland appears to have diagnosed about 70% of its people who have celiac disease—and Italy, Ireland, and Australia might have diagnosed about 20% of them—the United States still seems to have diagnosed less than 1%. Dr. Green notes that countries with national health plans seem more motivated to seek and find cases of celiac disease to delay and lower health care costs, with some countries subsidizing gluten-free food. In accord with recent studies including the one from the Mayo Clinic, Dr. Green notes that the number of cases of celiac disease seems to be increasing. In Finland the number of cases seems to be increasing along with other autoimmune conditions and allergic conditions, and 2.5% of the elderly test positive even though 1% of the general population has it.




PART III (10:41)
Dr. Green continues by discussing the recommendation for introducing small amounts of gluten along with breastfeeding between the first 4-6 months of infancy, but says that the recommendation may be subject to change. Around 2:33, he mentions intestinal permeability varying with different stimuli including alcohol, exercise and GI infection—this is something that sparked my curiosity, so I'm trying to learn more about intestinal permeability, its causes and its symptoms. Dr. Green returns to the importance of nutritional counseling that helps people with celiac diseae know what to avoid and what to eat. He goes on to talk aobut how he's come to believe in gluten sensitivity: "symptomatic response to gluten withdrawal in the absence of celiac disease." It exists. He cites a number of examples, including DH (20% of people with DH have normal intestinal biopsies) and people who neurological symptoms in response to gluten. He has also noted IBS patients who have negative bloodwork for celiac disease but villi damage nonetheless. He touches on some sticky related issues such as getting other family members tested and labeling asymptomatic patients as having the disease. He notes that at the recent Digestive Diseases Week (DDW) in Chicago, there was a substantial increase in the number of celiac papers, but research as well as diagnosis still seem to be lagging.