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Front Page Of Wall Street Journal
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There's a great article on Celiac Disease on the front page of the Wall Street Journal today. Unfortunately I can't post it here, but if you can get your hands on a copy it's worth a read.

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You can get a bit more of the article on topix.net I hate the wsj and their "sign up for news" policy. <_< Great to know that the story is front page! If you ever want to find Celiac disease in the news...just google that thought... Topix has everything printed for Celiac disease as it pops up.

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ooo, i'm going to try and get a copy. i might be able to scan it in, make a pdf on monday and send it to those interested. i'll let ya'll know.

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There's a great article on Celiac Disease on the front page of the Wall Street Journal today. Unfortunately I can't post it here, but if you can get your hands on a copy it's worth a read.

This is indeed one of the best new articles I've ever read regarding celiac disease! I am a web subscriber to the WSJ and my subscription agreement allows me to email the article to a "limited" number of people. If you are intested, PM me with your email address and I will send you the article.

BTW, just maybe I had something to do with the article. I've been emailing various Health editors at the WSJ regularly over the past few months about gluten sensitivity/celiac disease trying to get an article, but front page - wow!

George

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Oh--I'd love to be able to read it, too. :)

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Gut Check

Belatedly, an Illness

Of the Intestines

Gets Notice in U.S.

Long Well-Known in Europe,

Celiac Disease May Affect

Up to 3 Million Americans

Mr. Martin's Misdiagnoses

By DAVID P. HAMILTON

Staff Reporter of THE WALL STREET JOURNAL

December 9, 2005; Page A1

Growing up in the Midwest during the Depression, John Dryden was a sickly child with constant gastrointestinal complaints. Over the years, doctors ascribed Mr. Dryden's problems to appendicitis, irritable-bowel syndrome, kidney stones and bone cancer.

Mr. Dryden bore the discomfort into his mid-60s. Then his symptoms worsened, causing him to lose considerable weight amid recurrent fatigue. In 1998, the retired engineering designer visited the Mayo Clinic in Rochester, Minn. After an intestinal biopsy, a gastroenterologist named Joseph Murray identified Mr. Dryden's problem as a seemingly rare condition known as celiac disease.

Dr. Murray's origins were fortuitous: He is from Ireland. Celiac disease, a condition in which so-called gluten proteins in grains such as wheat and barley trigger an immune-system attack on the small-intestine lining, has a long history in Europe. Doctors there are trained to look routinely for the condition. In the U.S., by contrast, doctors have long assumed the disease was a rare childhood disorder.

Only in the past few years has it become evident that celiac disease may be more widespread. A report last year by experts convened by the National Institutes of Health declared that the disease affects 0.5% to 1% of the U.S. population, or roughly 1.5 million to 3 million Americans. They may have varied symptoms or none at all. The NIH estimate emerged after expatriate European and Australian researchers pushed to study the disease more aggressively in the U.S.

The story of celiac disease shows how blind spots can develop in the U.S. medical system. In Europe, a self-reinforcing cycle got under way in which patient groups spurred government-funded research, and the research led to publicity, more diagnoses and more funding. In the U.S., that process worked in reverse, as the perceived rarity of the condition depressed interest among researchers.

Lack of incentives also played a role. Treating celiac disease usually requires little more than a strict dietary regimen: Patients must avoid foods containing gluten, which rules out bread, pasta, beer and most packaged foods. As a result, it attracted little attention from drug companies. Academic researchers who saw few opportunities to develop new surgical or drug treatments for celiac disease preferred to study diseases for which innovative treatment options were needed.

"Looking back historically, the really great things done in celiac disease were all European," says Cyrus Rubin, a retired professor at the University of Washington and a U.S. pioneer in celiac disease. "Why did it take so long for gastroenterologists to treat it here? Mainly, we didn't discover it first, so it couldn't be right."

Celiac disease isn't the only medical condition to fall into an American blind spot. It took a decade or more for U.S. doctors to accept a 1982 Australian discovery that most stomach ulcers are caused by the bacterium Helicobacter pylori. The discovery made it possible to replace expensive drug and surgical treatments with a cheap course of antibiotics. It won the Nobel Prize for two scientists this year.

While celiac disease is rarely fatal, it can debilitate patients with diarrhea, fatigue, nausea and weight loss as their intestines lose the ability to absorb nutrients. Many specialists think untreated celiac disease -- even without obvious symptoms -- can also lead to osteoporosis, anemia, infertility and cancer. The condition is linked to other autoimmune disorders such as Type 1 diabetes.

Much remains unknown about celiac disease. Diagnosis can be difficult, because the disease can produce a variety of gastrointestinal symptoms, seemingly unrelated complaints, or no symptoms at all. Blood tests for celiac-related antibodies have improved, but still produce both false positives and false negatives. An intestinal biopsy is generally required for a firm diagnosis, but even that test can confuse damage from other diseases with the symptoms of celiac disease.

Many celiacs bounce from doctor to doctor for help with symptoms that stubbornly defy treatment. "I thought I had three weeks to live" at the time of diagnosis, says Mr. Dryden, now 74. After four weeks on the gluten-free diet, he says, "I felt like I was a young man again." Last year, he bought a houseboat and sailed 870 miles along rivers from Minneapolis to Kentucky. He still takes supplements for his bones, made brittle by years of celiac-related osteoporosis.

A 2001 survey by Peter Green and colleagues at Columbia University found that U.S. celiacs experience symptoms for 11 years on average before diagnosis.

Descriptions of an ailment resembling celiac disease date back to the ancient Romans. An English pediatrician formally described the condition in British children in 1888. An effective treatment emerged in 1950, when Willem Dicke, a Dutch doctoral student, noticed that celiac children had improved after World War II disrupted flour supplies. Dr. Dicke eventually fingered gluten, a generic term for certain proteins in wheat, rye and barley, as the culprit.

During a brief flowering of U.S. celiac-disease research in the 1960s, scientists such as Dr. Rubin devised new ways of testing small-intestine-tissue samples. Under the microscope, such tissue could reveal the destruction of the tiny hair-like extrusions, or villi, that line the intestines and absorb nutrients from food digested in the stomach. Such biopsies rapidly became a standard part of celiac-disease diagnosis.

Once the scientific puzzle of what was happening in the gut was solved, interest among U.S. researchers in celiac disease faded. Its seeming rarity made it an unpromising subject for ambitious scientists. Younger academics were drawn to poorly understood gastrointestinal disorders such as Crohn's disease and ulcerative colitis, where new findings might more readily translate into innovative treatments.

Dr. Murray of the Mayo Clinic recalls that when he was a medical student in Galway, Ireland, in the late 1970s and early 1980s, diagnoses of celiac disease were so common they were "part of the medical wallpaper." After he moved to a job at the University of Iowa in 1988, Dr. Murray once diagnosed a celiac alongside a senior professor. "This will be the last such case you see, since we never see this in America," Dr. Murray remembers the professor saying.

According to the Institute for Scientific Information, a unit of Thomson Corp. of Toronto, U.S. scientists contributed to only 10% of research papers on celiac disease published from 1985 to 1990. Scientists in the United Kingdom and Italy contributed to 38% of the papers.

As U.S. celiac research dwindled, so did medical awareness. The assumption that celiac disease rarely occurred in the U.S. became a self-fulfilling prophecy, as fewer doctors considered it as an explanation for illnesses.

Mike Martin and his wife, Debbie, in July 2004.

Mike Martin, a Navy veteran in New Jersey, began to suffer in 1977 from stomach problems and diarrhea that forced him to quit his job as a delivery worker. He lost 40 pounds and began visiting doctors, who either found nothing wrong or ascribed his problems to irritable-bowel syndrome, a catch-all diagnosis for gastrointestinal distress. Even after Mr. Martin developed dermatitis herpetiformis, a rare skin condition linked to celiac disease, no doctor considered a celiac diagnosis until two years ago, when by chance he visited a gastrointestinal specialist trained in India.

Mr. Martin, now 51, never returned to work and is supported by his wife, Debbie. He has regained some weight on a gluten-free diet but still can't properly digest many foods.

Meanwhile, European researchers advanced celiac studies. Alessio Fasano, an Italian researcher formerly at the University of Naples, says celiac patients groups "helped create a political and health-care agenda" to promote research into the disease. He also says European countries that have national health-care systems pay more attention than the U.S. to preventing diseases through early diagnosis.

In the 1970s and 1980s, new blood tests for celiac-related antibodies let researchers screen larger groups of schoolchildren and blood donors. Those tests showed that celiac disease was more common than thought in many European countries. By the 1990s, researchers concluded that celiac disease might affect as much as 1% of many countries' populations.

European scientists, with help from a U.S. group, eventually pinpointed a genetic variant common to celiacs and began to unravel the biochemical events that lead the body to mobilize against gluten and attack intestinal tissue. Health authorities stepped up efforts to make family doctors aware of the condition.

The new thinking made little headway in the U.S. at first. A 1994 Mayo Clinic study reinforced U.S. complacency by suggesting that celiac disease affected only one American in 5,000. However, the researchers hadn't done any blood testing. The figure reflected only cases in one Minnesota county diagnosed through classical gastrointestinal symptoms.

A handful of foreign scientists who moved to the U.S. to take advantage of greater academic freedom and better career opportunities began to press their contention that celiac disease was more common in the U.S. Dr. Fasano, who moved to the University of Maryland in 1993, published a 1996 paper in a Norwegian journal titled, "Where Have All the American Celiacs Gone?" In the mid-to-late 1990s, the NIH awarded a few grants to study prevalence of the disease.

Susan Goldstein, a 61-year-old graphic designer in White Plains, N.Y., was unexpectedly rejected as a blood donor in 1991 when tests showed her to be severely anemic. A visit to a Columbia University hematologist led her to Dr. Green, an Australian doctor who had schooled his fellow specialists to look for celiac disease.

Ms. Goldstein turned out to be a celiac. So did two of her three adult children, neither of whom exhibited classical gastrointestinal symptoms. All three have been on gluten-free diets since. Ms. Goldstein helped found a local celiac-support group and raised funds for a celiac research center at Columbia, which Dr. Green now directs.

In 2003, researchers led by Dr. Fasano reported that one American in 133 has celiac disease, after screening more than 13,000 people. The following year, the NIH held its "consensus conference" to lay out the state of the art in the disease and help settle controversy. It produced the estimate that as many as one in 100 Americans has the condition.

Nonetheless, celiac disease remains today "kind of an orphan, even though it's a very common disease," says Charles Elson, a gastroenterologist at the University of Alabama in Birmingham who chaired the NIH conference. "There are no pharmaceutical or biotech companies pushing a product and calling on doctors."

Write to David P. Hamilton at david.hamilton@wsj.com

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Gut Check

Belatedly, an Illness

Of the Intestines

Gets Notice in U.S.

Long Well-Known in Europe,

Celiac Disease May Affect

Up to 3 Million Americans

Mr. Martin's Misdiagnoses

By DAVID P. HAMILTON

Staff Reporter of THE WALL STREET JOURNAL

December 9, 2005; Page A1

Growing up in the Midwest during the Depression, John Dryden was a sickly child with constant gastrointestinal complaints. Over the years, doctors ascribed Mr. Dryden's problems to appendicitis, irritable-bowel syndrome, kidney stones and bone cancer.

Mr. Dryden bore the discomfort into his mid-60s. Then his symptoms worsened, causing him to lose considerable weight amid recurrent fatigue. In 1998, the retired engineering designer visited the Mayo Clinic in Rochester, Minn. After an intestinal biopsy, a gastroenterologist named Joseph Murray identified Mr. Dryden's problem as a seemingly rare condition known as celiac disease.

Dr. Murray's origins were fortuitous: He is from Ireland. Celiac disease, a condition in which so-called gluten proteins in grains such as wheat and barley trigger an immune-system attack on the small-intestine lining, has a long history in Europe. Doctors there are trained to look routinely for the condition. In the U.S., by contrast, doctors have long assumed the disease was a rare childhood disorder.

Only in the past few years has it become evident that celiac disease may be more widespread. A report last year by experts convened by the National Institutes of Health declared that the disease affects 0.5% to 1% of the U.S. population, or roughly 1.5 million to 3 million Americans. They may have varied symptoms or none at all. The NIH estimate emerged after expatriate European and Australian researchers pushed to study the disease more aggressively in the U.S.

The story of celiac disease shows how blind spots can develop in the U.S. medical system. In Europe, a self-reinforcing cycle got under way in which patient groups spurred government-funded research, and the research led to publicity, more diagnoses and more funding. In the U.S., that process worked in reverse, as the perceived rarity of the condition depressed interest among researchers.

Lack of incentives also played a role. Treating celiac disease usually requires little more than a strict dietary regimen: Patients must avoid foods containing gluten, which rules out bread, pasta, beer and most packaged foods. As a result, it attracted little attention from drug companies. Academic researchers who saw few opportunities to develop new surgical or drug treatments for celiac disease preferred to study diseases for which innovative treatment options were needed.

"Looking back historically, the really great things done in celiac disease were all European," says Cyrus Rubin, a retired professor at the University of Washington and a U.S. pioneer in celiac disease. "Why did it take so long for gastroenterologists to treat it here? Mainly, we didn't discover it first, so it couldn't be right."

Celiac disease isn't the only medical condition to fall into an American blind spot. It took a decade or more for U.S. doctors to accept a 1982 Australian discovery that most stomach ulcers are caused by the bacterium Helicobacter pylori. The discovery made it possible to replace expensive drug and surgical treatments with a cheap course of antibiotics. It won the Nobel Prize for two scientists this year.

While celiac disease is rarely fatal, it can debilitate patients with diarrhea, fatigue, nausea and weight loss as their intestines lose the ability to absorb nutrients. Many specialists think untreated celiac disease -- even without obvious symptoms -- can also lead to osteoporosis, anemia, infertility and cancer. The condition is linked to other autoimmune disorders such as Type 1 diabetes.

Much remains unknown about celiac disease. Diagnosis can be difficult, because the disease can produce a variety of gastrointestinal symptoms, seemingly unrelated complaints, or no symptoms at all. Blood tests for celiac-related antibodies have improved, but still produce both false positives and false negatives. An intestinal biopsy is generally required for a firm diagnosis, but even that test can confuse damage from other diseases with the symptoms of celiac disease.

Many celiacs bounce from doctor to doctor for help with symptoms that stubbornly defy treatment. "I thought I had three weeks to live" at the time of diagnosis, says Mr. Dryden, now 74. After four weeks on the gluten-free diet, he says, "I felt like I was a young man again." Last year, he bought a houseboat and sailed 870 miles along rivers from Minneapolis to Kentucky. He still takes supplements for his bones, made brittle by years of celiac-related osteoporosis.

A 2001 survey by Peter Green and colleagues at Columbia University found that U.S. celiacs experience symptoms for 11 years on average before diagnosis.

Descriptions of an ailment resembling celiac disease date back to the ancient Romans. An English pediatrician formally described the condition in British children in 1888. An effective treatment emerged in 1950, when Willem Dicke, a Dutch doctoral student, noticed that celiac children had improved after World War II disrupted flour supplies. Dr. Dicke eventually fingered gluten, a generic term for certain proteins in wheat, rye and barley, as the culprit.

During a brief flowering of U.S. celiac-disease research in the 1960s, scientists such as Dr. Rubin devised new ways of testing small-intestine-tissue samples. Under the microscope, such tissue could reveal the destruction of the tiny hair-like extrusions, or villi, that line the intestines and absorb nutrients from food digested in the stomach. Such biopsies rapidly became a standard part of celiac-disease diagnosis.

Once the scientific puzzle of what was happening in the gut was solved, interest among U.S. researchers in celiac disease faded. Its seeming rarity made it an unpromising subject for ambitious scientists. Younger academics were drawn to poorly understood gastrointestinal disorders such as Crohn's disease and ulcerative colitis, where new findings might more readily translate into innovative treatments.

Dr. Murray of the Mayo Clinic recalls that when he was a medical student in Galway, Ireland, in the late 1970s and early 1980s, diagnoses of celiac disease were so common they were "part of the medical wallpaper." After he moved to a job at the University of Iowa in 1988, Dr. Murray once diagnosed a celiac alongside a senior professor. "This will be the last such case you see, since we never see this in America," Dr. Murray remembers the professor saying.

According to the Institute for Scientific Information, a unit of Thomson Corp. of Toronto, U.S. scientists contributed to only 10% of research papers on celiac disease published from 1985 to 1990. Scientists in the United Kingdom and Italy contributed to 38% of the papers.

As U.S. celiac research dwindled, so did medical awareness. The assumption that celiac disease rarely occurred in the U.S. became a self-fulfilling prophecy, as fewer doctors considered it as an explanation for illnesses.

Mike Martin and his wife, Debbie, in July 2004.

Mike Martin, a Navy veteran in New Jersey, began to suffer in 1977 from stomach problems and diarrhea that forced him to quit his job as a delivery worker. He lost 40 pounds and began visiting doctors, who either found nothing wrong or ascribed his problems to irritable-bowel syndrome, a catch-all diagnosis for gastrointestinal distress. Even after Mr. Martin developed dermatitis herpetiformis, a rare skin condition linked to celiac disease, no doctor considered a celiac diagnosis until two years ago, when by chance he visited a gastrointestinal specialist trained in India.

Mr. Martin, now 51, never returned to work and is supported by his wife, Debbie. He has regained some weight on a gluten-free diet but still can't properly digest many foods.

Meanwhile, European researchers advanced celiac studies. Alessio Fasano, an Italian researcher formerly at the University of Naples, says celiac patients groups "helped create a political and health-care agenda" to promote research into the disease. He also says European countries that have national health-care systems pay more attention than the U.S. to preventing diseases through early diagnosis.

In the 1970s and 1980s, new blood tests for celiac-related antibodies let researchers screen larger groups of schoolchildren and blood donors. Those tests showed that celiac disease was more common than thought in many European countries. By the 1990s, researchers concluded that celiac disease might affect as much as 1% of many countries' populations.

European scientists, with help from a U.S. group, eventually pinpointed a genetic variant common to celiacs and began to unravel the biochemical events that lead the body to mobilize against gluten and attack intestinal tissue. Health authorities stepped up efforts to make family doctors aware of the condition.

The new thinking made little headway in the U.S. at first. A 1994 Mayo Clinic study reinforced U.S. complacency by suggesting that celiac disease affected only one American in 5,000. However, the researchers hadn't done any blood testing. The figure reflected only cases in one Minnesota county diagnosed through classical gastrointestinal symptoms.

A handful of foreign scientists who moved to the U.S. to take advantage of greater academic freedom and better career opportunities began to press their contention that celiac disease was more common in the U.S. Dr. Fasano, who moved to the University of Maryland in 1993, published a 1996 paper in a Norwegian journal titled, "Where Have All the American Celiacs Gone?" In the mid-to-late 1990s, the NIH awarded a few grants to study prevalence of the disease.

Susan Goldstein, a 61-year-old graphic designer in White Plains, N.Y., was unexpectedly rejected as a blood donor in 1991 when tests showed her to be severely anemic. A visit to a Columbia University hematologist led her to Dr. Green, an Australian doctor who had schooled his fellow specialists to look for celiac disease.

Ms. Goldstein turned out to be a celiac. So did two of her three adult children, neither of whom exhibited classical gastrointestinal symptoms. All three have been on gluten-free diets since. Ms. Goldstein helped found a local celiac-support group and raised funds for a celiac research center at Columbia, which Dr. Green now directs.

In 2003, researchers led by Dr. Fasano reported that one American in 133 has celiac disease, after screening more than 13,000 people. The following year, the NIH held its "consensus conference" to lay out the state of the art in the disease and help settle controversy. It produced the estimate that as many as one in 100 Americans has the condition.

Nonetheless, celiac disease remains today "kind of an orphan, even though it's a very common disease," says Charles Elson, a gastroenterologist at the University of Alabama in Birmingham who chaired the NIH conference. "There are no pharmaceutical or biotech companies pushing a product and calling on doctors."

Write to David P. Hamilton at david.hamilton@wsj.com

THANKS SO MUCH for the post.

Judy in Philly

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Thank you for posting that ! :) :)

- Michelle :wub:

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What a fascinating article...interesting info on how diseases get researched and getting funding and a reminder of how drug companies do help influence that. This article being in the WSJ is really encouraging to me--we are definitely at the forefront in a break of awareness...it should only grow from here!

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This is great. Still wished that they had mentioned the obesity link to celiac disease, and so many Americans are overweight. It is thought that only a few celiacs go through the extreme weight loss and being an overweight celiac is more common. Then again, no article would be perfect, so a big kudos to those that pushed WSJ for the article as well as the pretty-well-informed author.

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I just wrote the author, thanking him over and over as well as giving a couple suggestions on other issues to cover related to celiac disease if he were to publish a follow up article (ex. gene testing, overweight celiacs, other linked diseases/symptoms that seem relatively common). Again though, much kudos to him for even touching the complicated topic!

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Awesome!

And George, thank you for pushing and pushing for us - you probably are the force behind that article and you deserve kudos!!!!

Karen

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Yeah, George, as I mentioned, I think its a big deal--great job influencing! I also wrote the writer and gave him props :)

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What a great article--many thanks for posting it :)

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For those interested, as of 1:00p PST this article is the "Most Viewed" and "Most Emailed" article in today's WSJ!!

I'm glad to read that a lot of you are emailing the reporter who wrote the article - there's nothing better than postive feedback.

WOW! :)

George

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For those interested, as of 1:00p PST this article is the "Most Viewed" and "Most Emailed" article in today's WSJ!!

I'm glad to read that a lot of you are emailing the reporter who wrote the article - there's nothing better than postive feedback.

WOW! :)

George

Yep, George, you are the personification of the old adage that one person can make a difference. Again, kudos to your efforts.

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YAY!! :D

I was hoping by the time I got off work someone would have posted the article. Thanks!!

That was a great article. Also thanks to George for your efforts. :)

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There are actually two articles. Both are available online:

I hope you are doing well. Two articles about celiac disease appeared in the Wall Street Journal Friday, December 9, 2005! One of the articles was featured on the FRONT PAGE!!! Both articles will be available to non-subscribers of the Online Journal for up to seven days after it is e-mailed. You will want to review the articles ASAP to ensure viewing capability.

The links are below for your convenience (CTRL + Click to follow link)…

WSJ.com - Belatedly, an Illness Of the Intestines Gets Notice in U.S.*

This article is on the front page!

WSJ.com - Not So Special

This article is on page W8.

All the best,

Cynthia

Cynthia Beckman

Director of Development

Celiac Disease Center at Columbia University

161 Fort Washington Avenue

Suite 645

New York, NY 10032

Tel (212) 342-4529

Cell (646) 812-1212

Fax (212) 305-6443

www.celiacdiseasecenter.org

Sorry, the links didn't come out in the copy and paste. Here are the links in order:

http://online.wsj.com/article_email/SB1134...OTAwODk3Wj.html

http://online.wsj.com/article_email/SB1134...OTAwODkwWj.html

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I think that's a fabulous way to get the public to actually read the article - attracts the "theory conspiracy"-type curiosity in many people, not to mention nudging into the area of patriotism in the comparison of the US versus Europe. (Given the recent news stories, I won't even go there! ;-) )

Good to see it's getting out there!

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Great article, just wrote my thanks to the author too. Barbara

Great article, just wrote my thanks to the author too. Barbara

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Did you all see the figures for how common celiac is in a few countries, on the actual article on the website? Celiac is more common both in Finland and in Italy than in Ireland... I bet it's fairly common elsewhere in the Mediterranean as well. Just to say, that only irish people get celiac is really a myth...

Thank you so much for posting the article, and for pushing for it in the first place!

Pauliina

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For what it's worth, as of 10:00p PST Sunday Dec 11 according to the WSJOnline statistics, this celiac article from Friday is the number 3 "Most emailed" article of all articles within the last week and number 7 for all articles within the last month. The reporter seems to have attracted lots of interest in celiac - hopes it helps raise the awareness.

George

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Thanx for posting and all the links!

I printed it and I'm taking w/me to my gastro doc apt today...

We made it front page WSJ lets celebrate!

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Hi All :)

My husband is "Mr. Martin" and I am sure the WSJ editors in NYC cut some addtional info about him out as his interview with the author was about 40 minutes long. As many of you know, Mike has been plagued with other health problems over the years that stem from his misdiagnosed celiac.

We were very excited to be included in this story and we were caught off guard that it was finally published on 12/9 (the interview happened over a month ago). The photo is from our 2004 25th Wedding Anniversary.

Deb :D

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    • Hi not diagnosed celiac, Welcome to the forum! Your doctor should be sent to remedial celiac disease training.  Since that probably won't happen, I suggest you find a new doctor.  He doesn't know what he's doing when it comes to diagnosing celiac disease. You should not have gone gluten-free before completing all celiac disease testing.  The testing for celiac disease depends on the immune reaction being active.  Removing gluten before testing removes the antigen that causes the immune system to react, and lowers the chances of getting a correct test result dramatically.  The University of Chicago celiac disease center recommends: ******************************************** http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ Prior to blood testing we recommend 12 weeks of eating gluten. Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten. In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013 ******************************************** So you will need to go back to eating gluten before your endoscopy.  That may cause worse symptoms than before when you were eating gluten.  So it would have been better to do all testing before going gluten-free. Can you search for a celiac disease support group in your area?  They exist in many parts of the USA and world.  They can be a good place to get a knowledgeable doctor recommendation.  There is also a doctors subsection of this forum where you can search to see if any doctors in your area were recommended.
    • I get these crazy cravings for some things I can not eat anymore. Not only am I diagnosed with celiac but I also have a allergy to corn, olives, sesame, peanuts, and intolerance to yeast, soy, dairy, and a very low tolerance for carbs/sugars, Top it off with I can not digest meats or egg yolks, they just give me the burps and come up later.
        To deal with these I find myself turning to Republic of Teas (They have a great desert tea line up all certified gluten-free) and sweetening them with monk fruit extract, or stevia. And I find myself making Puddings bases that I use for shakes, dips, and ice-cream for meals. The puddings are normally a blend of cashew, or almond milk with a thickening agent like agar agar, pectin, or knoxx gelatin, blended with a sweetener like xylitol, swerve, stevia, monk fruit or a combination. And flavored with Lor Ann Oils (all gluten-free certified and you can find the kosher ones listed as such) super strength flavors or fountain syrups to match something I can not eat normally a combination of two flavors (Strawberry Cheesecake, Banana and Carmel, Cookies & Cream, etc) Then I add a fat that matches best, like almond butter, cashew butter, hemp butter, ground flax seed, coconut flour, chocolate, Pumpkin seed butter or a combination) These bases are normally blended up and consumed with 1-2 scoops of protein powder and eaten with steamed vegges as a side dip or loaded into a ice cream maker for a desert after my meals.      Also found myself making desert soups....like a pumpkin soup that taste like pumpkin pie. I am sure we all have our little quirks but this is one of mine for getting that sweet craving taken care of. Most premade items are off my list due to the allergies and it seems most companies use the oils, starches I am allergic to as non stick or thickening agents, Even the semi safe ones tend to put way to much sugars in them and I find myself only being able to nibble . There is also my little binge issues with almonds, pumpkin seeds, and, cocoa but that was explained to me as normal And on my most craving for peanuts I have found sancha inchi powder to work great, The Powder itself taste like the girl scout peanut butter cookie sandwich from my childhood, And is great mixed with a bit of almond milk into a butter or used in baking and smoothies. Before this I have been making Artisan blends of almond butter for years and even made a market selling them to pay  for my own consumption. Baked goods wise I have a bunch of recipes I make for others and sell at markets and this allows me to nibble on a sample to check it, as most contain a bean or gluten-free Harvest Oats/Flour in them and the carbs from that and the coconut sugars bother me. Still helps with cravings there, I only have 2 recipes that sell good and are safe for me to eat full servings of but are so expensive as they use almond and coconut flours, low sugars/xylitol and are paleo that I only can afford to make them once a month. Posting to hear about some odd and out there ways others deal with substitutions and cravings. Please do not bash mine as odd as they might be as they keep me from going crazy. (Yes I know DROP THE OATS, fact is I only get them when tasting stuff and they are gluten-free Harvest, the only ones I have never gotten glutend with)  
    • After suffering pretty much all year with one illness after another I've finally managed to get a diagnosis and it turns out to be celiac. After my doctors consistently failing to even consider the possibility it might be that (as opposed to "IBS" or "stress") I kept pushing for the Iga TTg test and it was off the charts with a score of >128... may as well fail it in style I guess. So here I am at the start of what feels like the end of my life as I know it. Been doing nothing but reading for the past week and frankly it's terrifying. Here's a few things that are going round in my head and I'd really appreciate your thoughts with. Apologies if it's a bit of an essay  Diagnosis I'm still furious at my doctors for not even entertaining the thought that celiac could be the root cause of all my ills. Given the blood test is so simple it feels almost negligent that they don't run this right at the start to rule it out. Instead I got subjected to poisons like Omeprazole which made me even more ill, whilst being told the physical symptoms were all in my head. Just as well I knew better and kept hitting up Google until my self-diagnosis was proved correct... to think these people get paid highly to be so incompetent makes my blood boil. Does feel good having outwitted the so-called professionals though. Seems 9 months is comparatively quick from symptoms to diagnosis compared to some others that have gone years with the problems so could be worse I guess. Food and diet I'm male vegetarian (non-negotiable) which makes this even harder as so many of my protein sources are now ruled out. Seems many with celiac were having trouble losing weight whereas I'm in the opposite situation. Already lost best part of a stone in the past few weeks and it's becoming noticeable now. The MyFitnessPal app reckons I need 2600 calories a day to maintain \ gain weight - no idea where that's going to come from. On top of that I read sites like Gluten Dude where even the Gluten Free foods are seen as poisons and going on extreme diets like Paleo \ SCD are the only real way forward. Again being veggie makes that practically impossible and if I'm unlucky enough to end up with the dairy issues as well I'm well and truly stuffed. Right now I'm trying the gluten-free Quorn products to see how I go, as well as more eggs etc. Porridge has been my go-to breakfast in the mornings for a while after I cut out bread whilst self-diagnosing but depending on where you read even that's a potential problem (currently using gluten-free porridge oats and seeing how it goes) Seems many gluten-free people have to go right back to basics and cook everything from scratch. That's a problem for me as I'm utterly hopeless on that front and time doesn't permit waiting hours just to prepare one meal. Seems nigh-on impossible to do day-in, day-out. Health Rightly or wrongly right now I see this diagnosis as a death sentence long-term. Looks like it brings other associated illnesses with it and this particular article really scares me: http://scdlifestyle.com/2012/03/the-gluten-free-lie-why-most-celiacs-are-slowly-dying/ I've only really had noticeable symptoms for the past year or so but wonder how long this has been going on for and what damage has already been done. All seems to have started from when I turned 30 (knew I was dreading that age for a reason) and right now I wonder how long I'm going to last before the really bad stuff starts. One of the other illnesses I'd considered as a possibility before getting diagnosed was Hashimoto's Thyroiditis; now it seems that's closely linked with Celiac so may not be out of the woods with that yet either. Just seems to be one big list of illness all triggered from the same point One positive change I've noticed thus far since cutting out gluten is that bloating seems to have gone down and bowel movements are better. Still getting headaches and muscle twitching, which could be as much a withdrawal symptom from gluten as anything else.  Some sites were suggesting stopping exercise whilst withdrawing but I can't face that as it's the only thing keeping me going at present. Again will keep going as-was and see what happens. Then to top it off it sounds like the next step is the biopsy - I'm scared of being put out for the procedure as a member of family went into hospital a few years back for something supposedly routine and never came back out. From what I've been told it's important to have done though as it shows just how broken the villi are so another thing to worry about in the meantime. I've just read on another thread that you have to be on gluten to have the test, that's another kicker after having started to cut it out the diet. With such a high blood test Iga-TTg score isn't it almost certain that celiac is the cause and the endoscopy in this case is just confirming levels of damage? OK means I can have a final blow-out eating all the "bad" foods but no doubt with all the side effects that come with it... Social life Seems like despite there being some gluten free options in certain restaurants (granted better now than years ago) I'm going to be hugely limited in food options. Either sitting on the side looking on or just plain not able to go out much anymore. Already had the first hitting-home moment watching colleagues eating pastries that were brought in while I just have to look on... then it dawns that this is never going to get better... urghhh Family life I'm really struggling to accept this lifelong illness and loss of health and it's taking a toll on the people around me at the moment. They won't be going gluten-free so will have to take my chances with the mixed kitchen environment; already gone with split toasters etc. so can't do much more than that. Dating Basically seems game over on that front, unlike many who are diagnosed with understanding partners \ spouses I'm still in the dating game, which is judgemental enough as it is without all the complications that the gluten issues bring. I'm reading even kissing someone with lipstick \ make-up is apparently a big no-no... once any date hears that they won't be coming back... forever alone status confirmed is how it looks right now. Overall feelings I still can't quite figure out if this illness was in me all along and just hasn't flared up enough to notice until now or whether the extreme stress I've been under for the past year or so has triggered it. If the second scenario is correct I can't stop thinking about the events that all led up to this almost year-long bout of ill health and life-changing diagnosis. Can celiac be brought on by stress alone or realistically was I always a ticking timebomb just waiting to be set off? For every person I see that's had a positive change after cutting out gluten (and getting by with reasonably achievable adjustments) there seems to be 10 others with horrible side-effects and long-term complications. Right now the future feels rather bleak - like all hope just been taken away. Help???
    • It sounds like you're doing great. That's amazing that your anxiety has decreased like that. You're obviously doing something really good for your health. With the other things I'm sure they will get better in time. After I gave up gluten I had a bad year but overall it got better. Things like anxiety and insomnia massively improved over time with being gluten free. However, going Paleo (which you are on your way to with the no dairy too) really helped my anxiety, as did running and self-taught acupressure. In particular I found processed gluten free foods were awful for my mood. I know you have to find your own way but I really want to encourage you to see how you feel without that if you haven't already. I also can't afford therapy but when I did have it, that helped too but just being well, gives you the chance to sort your own thoughts and feelings out even without a therapist. Good luck
    • Thank you so much guys. Reading that last response and those from forum members who seemed to be mind-bogglingly sensitive to gluten at times helps me feel like less of a freak  Perhaps worse than the symptoms themselves was my fear that I'm the only person on earth who has gone through this and that if it continues, I will end up with all of my friends and family washing their hands of me because it would look to them like I'm the only one with this and so I must be crazy. It's really good to hear that the sensitivity can go down too. I've been holding onto this idea through the tough times, reminding myself that I also had really bad hayfever for a few years, and asthma at a different time and they both got better.  It has been a whole month since I had a bad reaction to gluten. It has also been two weeks since I even had a small reaction and I'm feeling SO much better. I'm still going to take every precaution I can but this feels worlds away from how it was. At my most risk averse, I had a day on holiday where I only ate bananas and avocados because I could eat them without them having been touched by human hands, even my own! (This was straight after getting sicker and sicker and hunting down what it was that made me ill. I found the refill bottles of soap in the house where I was staying and read that they had wheat in them - not an airborne reaction I imagine but when I washed my hands to prepare food it was probably contaminating my food. Plus because I didn't speak the language, I couldn't be sure the new soap I bought was gluten free.) Now, I am still avoiding environments with lots of gluten and staying clear of grains, but I have reintroduced rice using the food challenge method as directed by my dietician (since I understand that rice is, according to Dr Fasano, the lowest risk of gluten contamination of all the grains) and I am building my weight back up. My Paleo+Fasano diet has been assessed by a registered dietician to include every nutrient and micronutrient that I need so I guess having a really good diet is helping too. My husband has been able to see also that the last time he cooked gluten in the house was the last time I got ill. So it is reassuring for him to see that the sacrifice he is making is making such a difference to me. I also took the advice about new cooking utensils - thanks! I have my fingers crossed for me. I want this better health to continue but right now I'm happy to know that there is a break in the clouds and to know that I can feel like me again. A lot of the steps I have taken to avoid gluten would be seen by some as over the top but I can say that for me, when I introduced these steps, that's when I stopped getting reactions and it's all worth it. Good luck to everyone, sensitive or not, who gets into a bad place with managing their reactions. Hang on in there!        
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