By Nancy Lapid, About.com Guide to Celiac Disease

Celiac disease has been a topic on not one but two TV shows in the past few days. I hardly watch television, so I’m fortunate to have learned about these episodes from a fellow blogger, the Gluten-Free Optimist.
First, the cable network BBC America’s reality show Last Restaurant Standing had an episode (#13) in which competing restauranteurs were required to come up with food for celiac guests (and other “tricky customers”) without advance warning. This episode will be replayed; the schedule is posted on the BBC America site. Read More »

This potato salad recipe is a breeze to make, does not require cooking and tastes fantastic. You can find the recipe on the back of the 29 oz Del Monte Whole New Potatoes can or Del Monte’s website. Enjoy! Read More »

The University of Chicago Celiac Disease Center has chosen Recognizing Celiac Disease as the supplemental reading material for medical professionals who complete its Preceptorship Program.

Dr. Stefano Guandalini, medical director of the center, recommends the book for both patients and healthcare providers. “The book is useful for prospective patients to determine whether their complaints are consistent with celiac disease. It is also an excellent patient resource for self management, especially in identifying ongoing and future health problems related to celiac disease and bringing them to the attention of their physician for proper treatment. “Recognizing Celiac Disease” is a useful reference that will serve as a helpful tool for health care providers and anyone diagnosed with the disease.”

The University of Chicago Celiac Disease Center’s Preceptorship Program is an on-site intensive 2-day training course for medical professionals. Candidates study under the direction of the Center’s celiac disease experts. The course includes formal instruction, as well as hands-on training. This is the nation’s only such program. More information about the University of Chicago Celiac Disease Center and the Preceptorship Program can be found at www.celiacdisease.net.

“Recognizing Celiac Disease” is the definitive guide to understanding, diagnosing and managing celiac disease. It is a reader-friendly, celiac disease reference manual written for both medical professionals and the general public.

For more information visit, www.recognizingceliacdisease.com.

by John Libonati

Here are six important facts about celiac disease in the United States:

1. Doctors do not understand celiac disease. 97% of celiacs are not diagnosed. Diagnosis takes over 10 years on average and follow up treatment is poor.

2. Doctors do not understand nutrition. Medical schools do not teach it, so doctors generally do not look for nutrient deficiencies unless you are emaciated.

3. Most of the 300 health problems stemming from celiac disease are due to nutrient deficiencies.

4. Comparing symptoms with one another does not work in celiac disease because symptoms change over time and everyone absorbs or malabsorbs nutrients differently. You may absorb everything but vitamin B12. Another person will not absorb calcium or vitamin D. Even siblings sometimes have totally different symptoms.

5. Symptoms from nutrient deficiencies show up before intestinal damage occurs, but also after starting the gluten-free diet depending on the degree of damage and quality of diet.

6. Most celiacs do not realize how sick they really are. They think, “This is me. I’ve always been this way.” They end up spending thousands of dollars on lotions, salves, medications and surgeries when the root of their problem has been a missing nutrient or nutrients all along.

You need to understand gluten and how celiac disease affects your body if you want to be healthy.

You must be able to identify health problems and the nutritional deficiencies that cause them so you can add the missing nutrients to your diet and inform your doctor to help him treat you.

You need the book, Recognizing Celiac Disease.

Recognizing Celiac Disease teaches you everything about gluten, celiac disease, the health problems it causes and what you need to fix them.

Thousands of celiacs around the world are using Recognizing Celiac Disease…because it works.

“Having been dx with CD for one year, I reached saturation – almost overload point a few months ago. Then I read the summary of “Recognizing Celiac Disease” and felt it might encompass everything I had referenced across numerous articles and books – and more. I love being able to look in the index and go to detailed information in my struggle to ensure my nutritional requirements and deficiencies are being met and addressed.” – Reta McCallum, TX

Read how this one of a kind book is helping others at www.recognizingceliacdisease.com.

Order your copy of Recognizing Celiac Disease today. Review it and bring it with you to your next doctor visit. This way you can work with your doctor to make sure you get the best treatment possible.

Visit www.recognizingceliacdisease.com for more information and to see what others are saying.

Alba Therapeutics Corporation announced today that for the first time, a European patient with active celiac disease has been enrolled in its clinical trial to investigate a treatment for the disease. Alba has enrolled and randomized the newly diagnosed patient from Spain in an eight-week Phase IIb trial with oral larazotide acetate, a tight junction regulator, for the treatment of patients with active celiac disease (CD). The global multi-center, randomized, double-blind, placebo-controlled study will evaluate the clinical and histological efficacy, safety and tolerability of larazotide acetate in 106 active CD subjects adhering to a gluten-free diet, while assessing improvement in the clinical signs and symptoms of celiac disease.

(1) Green, P, and Cellier, C, Review Article,
 Medical Progress, Celiac Disease, N ENGL J MED
 2007;357:1731-43

For more information about Alba’s clinical trials, please visit the www.clinicaltrials.gov web site and search for Alba Therapeutics.

    Media: Mariesa Kemble
    Sam Brown Communications
    608-850-4745
    kemblem@aol.com 

    Corporate: Wendy Perrow, MBA
    Alba Therapeutics Corporation
    410-878-9850
    info@albatherapeutics.com
    http://www.albatherapeutics.com

----------------------
Author Information: John Libonati, Philadelphia, PA
Publisher, Glutenfreeworks.com.
Editor & Publisher, Recognizing Celiac Disease.
John can be reached by e-mail here.

By John Libonati

Commonly asked questions on nutrition and Celiac Disease, answered by Melinda Dennis, MS, RD, of the Celiac Disease Center at Beth Israel Deaconess Medical Center. Ms. Dennis has herself had Celiac Disease for more than 17 years.

Q. What is it like for a person you see who is newly diagnosed with Celiac Disease?
A. The gluten-free diet requires more preparation, taking food with you when you travel, making sure that you are safe in dining-out situations or when you are visiting with family or friends. So for some, it is very simple and straight forward and they are already experimenting with new grains like amaranth, buckwheat, millet, sorghum, and teff. But some people are completely unfamiliar with these grains and it is a bit more of a stretch for them. Many people just eat on the run these days and this really makes it challenging.
Others are in complete denial. Perhaps they were having no symptoms but this was discovered through a blood test and they think – do I really need to change my life? Those are the people who, understandably, ask “how much can I get away with?” So there are all different types of people. But more and more people are coming into the clinic well educated about this because of the good information on the web. That’s a big change from about seven or so years ago when there were very few resources.
 

Q. There are many gluten-free foods on the market now. Does this make it easier for those diagnosed with Celiac Disease?
A. Yes. But it’s important to stress that the gluten-free diet isn’t just about what we need to take out of our meals, it’s about making sure the foods you do choose have lots of nutrients. Rice, corn and potatoes have a really high glycemic index, and they don’t have a lot of fiber. They can create food cravings. They can lead to weight gain and they are not nutritionally dense. So when we think of Celiac Disease, we think – how can we make up for the fact that we don’t have a very high protein wheat product any longer? What can we substitute and what would be superior? That’s when we work on educating about other grains that are healthier and have plenty of vitamins and minerals. Several of the gluten-free foods are now fortified with B vitamins, iron and trace minerals, and you can check the labels to make sure.
 

Q. It’s great there are more gluten-free options, but even reading the labels don’t always help. What items have hidden gluten?
A. Lots of things you wouldn’t expect contain gluten. Toothpaste can have gluten; you have to be careful to wash your hands carefully after feeding your dog because chow usually contains gluten. Dental pumice that is used to polish your teeth may contain gluten. Soy sauce, gravies and marinades are suspect. Even communion wafers. Patients need to be educated on all of this, because consistent exposure to gluten will lead to increased damage to the small intestine.
 

Q. Do most patients eventually adopt a healthy, gluten-free diet?
A. Most patients, even those who have a hard time with the diagnosis, do learn how to eat well. From my own experience, I feel it was actually a blessing to be diagnosed. It changed my life for the better. It empowered me to make the right decisions, to eat well—actually better than I had ever eaten before. I travel more now and experiment with tasty foods, more ethnic food, as well. So it’s a good thing to have a diagnosis—and learn the best ways to take care of your body and be healthy.

Above content provided by Beth Israel Deaconess Medical Center.
For advice about your medical care, consult your doctor. Source: http://www.thebostonchannel.com:80/bethisrael-old/17014446/detail.html

————————
“””Author Information: John Libonati, Philadelphia, PA
Publisher, Glutenfreeworks.com.
Editor & Publisher, Recognizing Celiac Disease.
John can be reached by e-mail here.”””

The Celiac Disease Center at Columbia University is sending a free copy of their newly revised Ultimate Guide to Gluten-Free Living to everyone on their contact list as of July 30, 2008.  To receive a copy, please email your complete contact information (name, address, phone, fax, email) to cb2280@columbia.edu.  The guide will be mailed after July 30, 2008.

The Celiac Disease Center at Columbia University was established within the Department of Medicine at Columbia University in 2001.  Its mission: to redefine the future of celiac disease and treatment on an ongoing basis, through continuing advances in research, patient care, and physician and public education.

Under the guidance of Peter Green, MD, one of a few recognized experts on celiac disease in the United States, the Center has become world-renowned for its services and programs and is one of the first medical school based centers in the United States dedicated to the treatment and study of celiac disease. The Center is diagnosing and treating more than 2600 patients annually from around the world.  Additional information is available online at www.celiacdiseasecenter.org.

Tell Cynthia Gluten Free Works sent you!  :)

-John

John Libonati, Editor
john.libonati@glutenfreeworks.com

The news release below is timely because anti-gliadin antibody blood tests are losing ground while the reality of gluten sensitivity looms far larger than is now appreciated by many doctors!  These blood tests are absolutely necessary to investigate health problems caused by gluten itself, yet they are being dismissed by doctors who look only to diagnosing celiac disease.

Positive anti-gliadin antibody tests show undigested gluten peptides in the bloodstream.  This abnormal finding tells the story that gluten has passed through the tight barrier defenses of the small intestinal lining into the body where it can wreak havoc, with or without celiac disease.  Gluten is a food protein in wheat, barley, rye and oats.

In screening for celiac disease, an inherited immune response to gluten entering the small intestinal lining, doctors rely on the celiac specific antibody tests, anti-endomysium and anti-tissue transglutaminase.  However, the investigation to find these auto-antibodies must not exclude the anti-gliadin antibodies. 

“Doctors Slow To Recognise Gluten Harm.” Dr. Rodney Ford, Leading New Zealand Paediatrician And Allergist Challenges Medical Stalwarts With Revolutionary Gluten Thinking

There is more to gluten problems than just coeliac disease. Gluten sensitivity is ten times more prevalent than celiac disease in New Zealand and mostly undiagnosed. This is the message that Christchurch-based paediatrician, allergist and author, Doctor Rodney Ford wants to get across to the public and the ever conservative medical fraternity.

The practice of medicine is restricted to the knowledge, experience, attitudes and politics of the society it functions in. Medicine is an inexact but evolving science, thus current standard medical practices are often disproved. The validity of medical opinion, long held to be the gold standard of diagnosis and treatment, are constantly challenged. This is a healthy dynamic, one that enables the pursuit of excellence and the evolution of better forms of practice, resulting in better outcomes for patients. Why, then asks Dr Ford, is there such resistance to his new Gluten Syndrome hypothesis recently published in a book and supported by years of clinical experience and research.

In the absence of coeliac disease, his latest research shows that the simple gluten test (IgG-gliadin antibody) is a sensitive indicator to detect those people who get sick eating gluten but who have tested negative to Celiac Disease. However, this test is rarely ordered by general practitioners or specialists. He says “This is because of an illogical rejection of gluten sensitivity as a valid diagnosis. Ignoring gluten flies in the face of all of the evidence and is also alienating doctors from their patients.”

Picture this, if you will: a six year old girl, Elizabeth, small for her age, a distended stomach, gas and suffering from gastric reflux. Her teachers reported a lack of attention at school and early learning problems. Elizabeth had been thoroughly investigated by the medical profession: blood tests, bowel biopsies, colonoscopy, endoscopy. Celiac Disease had been ruled out, various medications had been tried and doctors had started to question her mother’s parenting skills. Elizabeth’s parents had gone beyond frustration and fear for their child, they were at the point of desperation.

This is a common story in Dr Ford’s practice. It is also one of the many success stories he has to share. After seeing Dr Ford, a positive IgG-gliadin antibody test and being put on a gluten free diet, Elizabeth improved within a few days. Within weeks she made a remarkable recovery and was in essence cured. Gluten was no longer a choice for her and accidental intake still causes her a reoccurrence of symptoms. Adhering to a gluten free diet has enabled Elizabeth to grow into the healthy, happy and successful young woman that she is today.

Common stories such as this, along with the increasing research and evidence of gluten based harm, should be enough to spur the medical profession into action in an effort to save the current generation of children from the long term health, social and financial consequences of what is an easily diagnosed and treatable condition.

The shocking truth is that this terrible scourge of gluten is being ignored by most medical practitioners. Even worse, the blood tests that can diagnose it are being abandoned by many medical laboratories. For instance, Medlab Diagnostics in Auckland no longer offers gliadin antibody tests.

The medical professions reluctance to act on the gluten problem is costing New Zealand billions of dollars each year with long term and far reaching consequences. From a dollars and cents point of view it makes no economic sense. From a patient care point of view it is bordering on negligence.

Source: Scoop Independent News, New Zealand, Thursday, 19 June 2008, 9:49 am
You can find this news release at http://www.scoop.co.nz/stories/GE0806/S00059.htm

The below article by Nadine Grzeskowiak is a good explanation of why the gluten-free diet can work for anyone and everyone and pitfalls of the celiac tests.  Medical experts speak of the gluten-free diet as if it is something strange, yet most unprocessed foods you cook yourself are naturally gluten free.  All meats, seafood, fruits, vegetables, nuts, legumes, dairy (unless gluten was added to them), corn, rice and other grains,(besides wheat, barley, rye or oats), naturally do not contain harmful gluten.  Wheat, barley, rye and oats don’t contain any nutrients you cannot get in other foods, so what is the big deal with not eating them?Nadine’s article is excellent.  The only thing I would add is if you do eliminate the gluten grains of wheat, barley, rye and oats and feel better within two weeks, get yourself tested for celiac disease.  A positive diagnosis makes dealing with healthcare providers much easier.  That said, if it comes back negative but you feel better being gluten-free then eliminate gluten from your diet and be healthy. You can find Nadine’s blog article at Gluten Free RN -John Libonati, Editor Glutenfreeworks.com
john.libonati@glutenfreeworks.com

Discussion | | Nadine Grzeskowiak | May 13, 2008

I have thought for a long time about this very question.  Who would suggest such a thing?  I would.  The main reason I would dare to make such a statement is because we have been so negligent in recognizing and treating people with celiac disease.  Not a day goes by that I don’t hear about or speak to someone directly who has suffered needlessly for years.  The other main point I want to make is that NONE of the currently available testing is 100%.  The blood tests and endoscopic biopsies are great tools if they are positive.  If they are negative, I have heard of too many people tell me ‘I don’t have celiac disease, my blood test/biopsy was negative’.  This is a major cause for concern to me.  Both of these tests do not confirm you don’t have, or will never develop celiac disease.  First, neither test is 100% reliable.  Second, both tests are simply a snapshot of right now.  I have also seen test results that are clearly positive for celiac disease, but read as negative by a medical provider that does not understand what the results mean.  The genetic testing is great and it is my first choice when testing people.  The test is a cheek swab, I get results in one week and it is covered by most insurances.  I utilize Kimball Genetics in Denver, Colorado,  www.kimballgenetics.com.  I have run into this scenario in the past week: a 12 year old on a gluten free diet for several months, a remarkable recovery from many symptoms while on the gluten free diet, and yet, she tests negative for DQ2 and DQ8.  Is she at risk for celiac disease if she eats gluten?  Are there other genes that could be looked at?  I am gathering more data on this because nothing is black and white with gluten intolerance, there are many grey areas.  Other than, of course, the need to be on a strict gluten free diet for the rest of your life if you have celiac disease.  Not much grey there.

So, this leads me back to the original question: everyone on a gluten free diet?  In my perfect world, the answer would be a resounding YES!  If people would simply try the gluten free diet for a month, most, if not all of those people will feel better.  It remains simply a diet change.  Change your diet and feel better, doesn’t that sound appealing.  To some yes, and to others, not really. Not without the proof that they need to change their long held diet and lifestyle habits.  It also sounds quite un-American to say ‘I can’t eat wheat, barley, rye and oats’, by extension, bread, pies, cakes, beer and pizza.  My most recent convert to a gluten free diet, said to me, “You know I don’t even miss the bread anymore, it doesn’t even appeal to me, I feel so much better on the gluten free food”.  This is a woman who has had symptoms for most of her 76 years and I had a hard time convincing her to try the gluten free diet for a month.  She is convinced now.  I can tell many stories with the same happy ending.  I can also tell you that most men have a harder time changing anything, let alone their diet, than women.  Trust me, I am a nurse and I have no reason to lie to you.  Try it.  Go gluten free for a month and contact me with your results.  GO!

We have some very important information to share with you today.

While we were at Columbia University’s Topics in Gastroenterology, Dr. Steven Lobritto talked about cirrhosis of the liver and how he has actually seen people who were on the liver transplant list heal enough to be taken off once they started a gluten-free diet.

According to our new book, “Recognizing Celiac Disease”, 3.4% of people with non-alcoholic fatty liver disease have SILENT Celiac Disease. Most patients DO NOT have gastrointestinal symptoms.

Non-alcoholic fatty liver is a non-inflammatory hepatic (liver) disorder characterized by degenerative changes in the liver secondary to excessive accumulation of lipid in hepatocytes.

The good news is that studies showed liver enzymes normalize after 6 months on a gluten-free diet.

If you have patients or family members with non-alcoholic fatty liver (cirrhosis), who are not diagnosed with celiac disease, give them this information so they can get tested.

Related medical studies are referenced in “Recognizing Celiac Disease.” www.recognizingceliacdisease.com.

Celiac disease is a multi-system, hereditary, chronic, auto-immune disease estimated to affect 1% of the human population (3 million in the US) that is caused by the ingestion of wheat, barley, rye and oats. It is treated by removing these items from the diet. Signs, symptoms, associated disorders and complications can affect any part of the body and removal of the offending foods can result in complete recovery.