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So many people have written me and contributed in some way to the Time magazine article. Some who not only disagree with probing the issue, have expressed their way of handling people "who don't understand" by stating the very same language..."I have allergies to wheat".  This has gotten me so discouraged, and saddened.  So I emailed to these people what I say in very simple terms.  Everyone not only understands, but they ask for more information, and a conversation always leads to an education:

"Diabetes is an auto immune disorder, so is Celiac. Diabetes is the inability to process sugar in the body, Celiac is the inability to process gluten.  Neither are allergies.  Neither respond with hives.  Neither can be cured with Benadryl.  Both are life threatening without proper intervention.  Both are a disease."

Accuracy in education is the key to solving the problem.  You wouldn't call alcoholism an allergy, now would you??

Six people emailed me with their thanks, stating they were going to write Time for a correction.  Others were as discouraged with the word "allergy" and stated the following:

"Perhaps suggesting they contact the NIH for a definitive definition would do."

"This is unbelievable! What do you think about forwarding his email to Dr.Peter Green at the Celiac Research Center at Columbia University?"

Those who wrote Time and sent me copy said:

"I was polite but left out the compliments. I did let Time know that they were contributing to the misinformation about celiac disease and that it needs to be corrected.  I am a health professional and a celiac patient.  It really bothered me that a major magazine would be spreading misinformation. I looked up the Dr. Elliott--actually found him on a Google search. The Univ of Iowa site was not user friendly.  He does not seem to be into celiac disease and it does not mention cd or a Celiac Clinic in his online bio.
http://www.int-med.uiowa.edu/Divisions/GI/Directory/DavidElliot.html

"... the Allergy and Immunology medical community, which  does  recognise that Celiac doesn't involve an IgE immune response, which is the allergic pattern.  In their they seem to have now added a category of a  'type 4 allergic?' response, which is where they categorize Celiac disease. Most of the descriptions in this category and the diagnosis etc are often based on obsolete material. I do not think that they always urge the allergy specialist to refer the person to a gastroenterologist."

"By definition if you have an allergy a histamine blocker like the over the counter pill Benydrol should help. An allergy refers to the body's protection mechanisms against a foreign body entering your body. Gluten intolerance is a disease; Celiac Disease has no cure. It is controlled by diet and diet alone will save you. But it is a strict diet. If you are allergic to wheat then you do not have a disease and you can take a Benydril.
Instead, this is an autoimmune disease,there is no pill that will allow your body the instant ability to break down gluten. Celiac Disease is an intolerance to gluten. The body can not tolerate wheat, rye, barley and oats.
I have been educating the public and newly diagnosed Celiacs for over 10 years. Your magazine reaches hundreds of thousands of people.  As the rise of information increases exponentially about Celiac Disease and studies show 1 out of 133 Americans  have the disease, I want to make sure no one hands me a slice of bread and a Benydril at a dinner party."

Two others believe as this person stated:
"I think it is semantics. An IgA response IS an immune system response ...
it is a different immunoglobulin. If you restrict the term "allergy" to mean only IgE, then you are correct. If you use the term allergy for any of the 5 immune responses, then they are correct. I think there are people on both sides right now, but the trend seems to be toward categorizing all immune responses as "allergies", and "intolerance" is used for things like lactose intolerance (not having the right enzymes to digest something). Both
"allergy" and "intolerance" are not very exact terms though. "

Two others believe as this list member: "Five years ago we'd be begging for an article about CD, no matter how perfectly accurate it was.  Let's stop attacking people who are trying to help spread the awareness of CD.
I'm all for having someone represent this List and politely point out errors in an article.  But to encourage the entire List to reprimand someone for their choice of words, is not very productive."

And finally, some real homework was done and sent to Time by this member:
"Here is a clinical description of celiac disease from the foremost authority on the disease, Dr. Alessio Fasano, taken from his landmark study in Feb, 2002:

Prevalence of Celiac Disease in At-Risk and Not-At-Risk Groups in the United States A Large Multicenter Study

Alessio Fasano, MD; Irene Berti, MD; Tania Gerarduzzi, MD; Tarcisio Not, MD; Richard B. Colletti, MD; Sandro Drago, MS; Yoram Elitsur, MD; Peter H. R. Green, MD; Stefano Guandalini, MD; Ivor D. Hill, MD; Michelle Pietzak, MD; Alessandro Ventura, MD; Mary Thorpe, MS; Debbie Kryszak, BS; Fabiola Fornaroli, MD; Steven S. Wasserman, PhD; Joseph A. Murray, MD; Karoly Horvath, MD, PhD

Arch Intern Med. 2003;163:286-292.

Background:  Celiac disease (CD) is an immune-mediated enteropathic condition triggered in genetically susceptible individuals by the ingestion of gluten. Although common in Europe, CD is thought to be rare in the United States, where there are no large epidemiologic studies of its prevalence. The aim of this study was to determine the prevalence of CD in at-risk and not-at-risk groups in the United States.

Methods:  Serum antigliadin antibodies and anti*endomysial antibodies (EMA) were measured. In EMA-positive subjects, human tissue transglutaminase IgA antibodies and CD-associated human leukocyte antigen DQ2/DQ8 haplotypes were determined. Intestinal biopsy was recommended and performed whenever possible for all EMA-positive subjects. A total of 13 145 subjects were screened: 4508 first-degree and 1275 second-degree relatives of patients with biopsy-proven CD, 3236 symptomatic patients (with
either gastrointestinal symptoms or a disorder associated with CD), and 4126 not-at-risk individuals.

Results:  In at-risk groups, the prevalence of CD was 1:22 in first-degree relatives, 1:39 in second-degree relatives, and 1:56 in symptomatic patients. The overall prevalence of CD in not-at-risk groups was 1:133. All the EMA-positive subjects who underwent intestinal biopsy had lesions consistent with CD.

Conclusions:  Our results suggest that CD occurs frequently not only in patients with gastrointestinal symptoms, but also in first- and second-degree relatives and patients with numerous common disorders even in the absence of gastrointestinal symptoms. The prevalence of CD in symptomatic patients and not-at-risk subjects was similar to that reported in Europe. Celiac disease appears to be a more common but neglected
disorder than has generally been recognized in the United States.

From the Center for Celiac Research (Drs Fasano, Fornaroli, and Horvath, Mr Drago, and Mss Thorpe and Kryszak), Division of Pediatric Gastroenterology and Nutrition (Drs Fasano and Horvath, Mr Drago, and Mss Thorpe and Kryszak), and Center for Vaccine Development (Dr Wasserman), University of Maryland School of Medicine, Baltimore; Istituto per l'Infanzia Burlo Garofalo, Trieste, Italy (Drs Berti, Gerarduzzi, Not, and
Ventura); Division of Pediatric Gastroenterology and Nutrition, University of Vermont, Burlington (Dr Colletti); Division of Pediatric Gastroenterology and Nutrition, Marshall University, Huntington, WV (Dr Elitsur); Division of Gastroenterology, Department of Medicine, Columbia University College of Physicians and Surgeons, New York, NY (Dr Green); Section of Pediatric Gastroenterology, Hepatology, and Nutrition, and University of Chicago Celiac Disease Program, University of Chicago, Chicago, Ill (Dr Guandalini); Division of Pediatric Gastroenterology and Nutrition, Wake Forest University School of Medicine, Winston-Salem, NC (Dr Hill); Division of Pediatric Gastroenterology and Nutrition, Children's Hospital Los Angeles, University of Southern California, Keck School of Medicine, Los Angeles (Dr Pietzak); and Mayo Clinic, Rochester, Minn (Dr Murray).

*******
Here is another description used to describe what celiac disease is that we use on our support group website:

Celiac disease is a genetically inherited autoimmune disorder triggered by gluten, a protein in certain grains.  Celiac disease goes by many names, such as celiac sprue, non-tropical sprue, malabsorption syndrome, gluten intolerance, gluten sensitivity, or gluten-sensitive enteropathy. In celiac disease, when gluten-containing grains are eaten, the absorptive surface (villi) of the small intestine is damaged.  The villi, small hair-like projections that greatly expand the capacity of the intestinal surface to absorb nutrients, are flattened or broken off.  Because of this destruction of the villi, the body is unable to absorb the nutrients-protein, fat, carbohydrates, vitamins, and minerals-which are
necessary for good health.

*****

Nowhere, in any celiac publication, is the word "ALLERGY" used to describe celiac disease."


And from me, CC in CT...No where in the above documents, is there the name Dr Elliott from University of Iowa, or his title "Director of U of I's Celiac Center.  I am not suggesting he doesn't exist, only wondering how he was found, and why were others not asked to back up or give a second opinion.  Should we always believe everything we read?  Absolutely not.  There are, in fact, other studies, other opinions.  Without looking for them, we never become fully educated, accurately educated.  So to those of you who feel we should leave well enough alone, I am sorry to say you will never see advancement in Celiac.  If we challenge the system for more information, we will get it!  And a cure will be found!

*Support summarization of posts, reply to the SENDER not the CELIAC List*