Celiac Princess

Celiac Disease, Gluten Sensitivity Increase Risk of Death

A new study published in this week's Journal of the American Medical Association (JAMA) finds that people with mild intestinal inflammation and a sensitivity to gluten have a greater risk of death even amongst patients who do not have severe symptoms.This means you could have only mild issues and perhaps not even test positive for celiac disease, yet still have a greater risk of death.

For the study, Swedish researchers examined tissue biopsies collected from 46,121 patients in Sweden between 1969 and 2008. Amongst the samples, they found 29,096 patients with celiac disease, 13,306 with inflammation of the small intestines and an additional 3,719 with latent celiac disease. For those of you who don't know, latent celiac refers to patients who have celiac disease antibodies present in their blood, but do not show signs of damage to their intestines.

After a median of 7.2 years follow-up, the researchers determined that the risk of death increased by 75% for patients with mild intestinal inflammation, 35% for patients with latent celiac or gluten sensitivity and 30% for patients with diagnosed celiac disease. Amongst the patients with celiac disease, the most common causes of death were cancer and cardiovascular disease. 

In an editorial accompanying the article, Dr. Peter Green of the Celiac Center at Columbia University Medical Center said the most interesting finding was that about patients with latent celiac disease or gluten sensitivity, largely because the issue has received little attention in the United States.

He adds that there is "increasing evidence for [gluten sensitivity] presence in patients with various neurological disorders and psychiatric problems. The study....reinforces the importance of celiac disease as a diagnosis that should be sought by physicians. It also suggests that more attention should be given to the lesser degrees of intestinal inflammation and gluten sensitivity." 

Mayo Clinic Study Finds Celiac More Common Today Than 50 Years Ago

A new study by celiac experts at the Mayo Clinic and published in the journal Gastroenterology finds that celiac disease is more than four times more common today than it was 50 years ago. 

For the study, researchers from the Rochester, Minn-based Mayo Clinic tested blood samples collected at the Warren Air Force Base between 1948 and 1954 for celiac disease and compared the results with those from blood samples collected recently. The researchers found that young people today are more than 4 times more likely to have celiac disease than the same age group in the 1950s. 

Additionally, the study determined that patients who did not know they had celiac disease were almost 4 times as likely than healthy patients to have died during the 45 years of follow-up. 

Celiac Expert and Gastroenterologist Dr. Joseph Murray of the Mayo Clinic says that "Celiac disease has become much more common in the last 50 years, and we don't know why." 

To learn more about the study, check out this awesome video with Dr. Murray: 

Home Celiac Test Video on YouTube

Check out this awesome video on YouTube about the Biocard Celiac Test! It shows you exactly how to use the home celiac test and helps you understand how it works. The test that measures (anti-tTG) IgA antibodies from a fingertip blood sample. The U.S. FDA is currently evaluating the test and is expected to grant approval in the United States sometime in 2009.

Honestly, I can't wait for the approval to come. Once this test is in the the hands of doctors in America and easily available in stores for purchase (just like in Canada), celiac diagnosis could become as easy as diagnosing strep throat!

Here's a link to a longer article I wrote about the test kit a few months back: All About the Biocard Celiac Test.  

Australian Researchers to Launch Celiac Vaccine Trial

New research from Australia could eventually lead to the end of the gluten-free diet for millions of people with celiac disease.

Researchers from Melbourne, Australia-based Walter & Eliza Hall Institute recently discovered the exact part of the gluten protein that causes a reaction in patients with celiac disease. According to Dr. Jason Tye-Din, the vaccine works by "switching off the abnormal response to gluten" that occurs in patients with celiac disease. The vaccine will essentially de-sensitize a patient's body and "restore the ability of the small intestine to absorb nutrients in the normal way."

The first trial will involve 40 patients with celiac disease and will determine whether or not the treatment is safe and if there are any side effects.

While this is incredibly exciting news, the vaccine is still several years and trials away from being available to all patients. So, for the meantime, stock up on your favorite gluten-free goodies and embrace the gluten-free lifestyle with a smile!

Celiac Disease Risk Significantly Higher for Type 1 Diabetics

Type 1 diabetics have a significantly increased risk of developing celiac disease, according to a media release from 2G Pharma. In fact, the frequency of celiac disease doubles in adults with type 1 diabetes to 2% and jumps to 10% incidence among children with type 1 diabetes.

We all know that celiac is exceptionally hard to diagnose because of the broad range of symptoms associated with the disease. Diagnosis becomes even more difficult for patients with type 1 diabetes because most of the children with both conditions experience mild or no symptoms at all of celiac.

So what is type 1 diabetes? According to the Juvenile Diabetes Research Foundation (JDRF), a person with type 1 diabetes doesn't produce any insulin.  Without insulin, the glucose builds up in the blood, causing high blood sugar, or hyperglycemia.  Blood sugar levels that are too high and untreated for long periods of time can lead to ketoacidosis, a very serious condition. Very high blood sugars for an extended period of time can eventually lead to coma and death. It's a serious condition that requires lifelong maintenance However, it's important to note that with proper care, people with type 1 diabetes can live happy, healthy and active lives. 

To learn more about Type 1 Diabetes, please visit the Juvenile Diabetes Research Foundation.

The good news for people with both type 1 diabetes and celiac disease is that diagnosis of celiac is getting easier and more accessible. In fact, Health Canada recently approved an at-home test that allows you to test for celiac disease from the comfort of your own home. The Biocard Celiac Test uses a fingertip blood sample to measure antibodies in your blood. In just 10 short minutes, the test will identify if you have celiac disease. The makers of the test are confident that the test is accurate, however they still strongly recommend follow-up with your doctor to confirm the diagnosis with a small intestine biopsy.

The test kit can be purchased online and is available in Canada at London Drugs, Rexall Pharma Plus, Price Smart, Save on Foods and other Canadian retail chains. In the United States, the FDA is currently reviewing the test and approval is expected later this year. U.S. residents can order the test for personal use by calling the company directly.

For more information about the test, please visit http://celiachometest.com/

NIH Releases Digestive Health Research Plan

In hopes of helping the nearly 70 million Americans who suffer from digestive health problems annually, the National Commission on Digestive Diseases of the National Institutes of Health (NIH) this month released a research plan that will take a closer look at digestive diseases including diagnostic tools, genetic predisposition, treatment strategies, psychological factors, disparities in health care, prevention and cures.

To put digestive diseases into perspective, symptoms including diarrhea, nausea, abdominal pain and vomiting account for about 105 million doctors' visits and roughly $100 billion in health care spending annually in the United States.

Dr. Griffin Rodgers, director of the NIH's National Institute of Diabetes and Digestive and Kidney Diseases says that "NIH-research has led to tremendous discoveries" and hopes to "build on recent advances and break new ground." Rodgers notes that the NIH hopes to bring in new researchers and utilize a peer review system to identify "projects with high scientific merit" to pursue.

Celiac disease is on the list of diseases to examine, however it appears only under one objective. "Improve Therapeutic Regimens for the Wide Range of Diseases Affecting the Stomach and Small Intestine." The plan lays out in more detail that they hope to conduct further research on treatments for celiac disease, autoimmune and allergic diseases that affect the digestive track.

This is good news, but lets hope that the NIH takes a greater interest in celiac in the near future. We desperately need to understand the genetics of the disease, how it is triggered and if it can be prevented.

Study links Celiac to Increased Risk for Lymphoma

A study published in the January 2009 issue of the journal Gastroenterology finds that patients with celiac disease and their family members have an increased risk of developing lymphomas. 

Researchers from the Bethesda-based National Cancer Institute and the Karolinska Institute in Sweden evaluated 60,000 patients with lymphomas and found that patients with celiac disease were five times more likely to develop a lymphoma, compared with patients who did not have the autoimmune disease. Family members of people with celiac disease were two times as likely to develop a lymphoma.

Before we get into more study results though, let's back up to make sure you actually understand what lymphoma is. According to the National Library of Medicine, lymphoma is a cancer of the immune system. There are several different types, but the type most closely linked to celiac disease is called non-Hodgkin's lymphoma.

Typical symptoms of Non-Hodgkins lymphoma include:

• Swollen, painless lymph nodes in the neck, armpits or groin
• Unexplained weight loss
• Fever
• Soaking night sweats
• Coughing, trouble breathing or chest pain
• Weakness and tiredness that don't go away
• Pain, swelling or a feeling of fullness in the abdomen

Laboratory tests will help your doctor determine if you have non-hodgkin's lymphoma. The most common treatments include chemotherapy, radiation therapy and bone marrow transplant.

Although it remains unclear what the actual link between celiac and lymphoma is, the researchers speculate that celiac disease leads to inflammation and that inflammation drives the development of lymphomas. 

The researchers suggest two key messages from the findings. First, that early detection of celiac disease can help decrease the risk of developing lymphoma. This was evident when researchers examined the link between celiac and lymphoma in the 1970s and compared it to rates today. Finally, people with a family history of celiac disease have a higher risk of developing lymphoma, which may suggest an "underlying mechanism that leads to both celiac disease and lymphoma.

So what's the bottom line? Get tested for celiac disease and if you're positive, routinely test your family members. An early diagnosis and treatment with a gluten-free diet could help prevent developing cancer later in life.

More about Gluten in Medications

I've gotten so many comments and emails about my post last week about the rising cost of prescription drugs and gluten in medications that I decided to do another post about it to help answer many of your questions. We can all agree that most people around the world consider wheat to be something that we find in baked goods. However, the really scare reality is that the medication you take to cure aches, pains and serious diseases could contain wheat too. 

According to the American Society of Health System Pharmacists (ASHP), many prescription and over-the-counter medications contain binders to hold them together. The binders are called excipients and are generally made from wheat, corn, potato, or tapioca starch as well as other unspecified types of starch. If you have celiac disease and you get a pill that is bound with wheat, you may experience a typical celiac reaction.

Excipients are considered inactive ingredients and to date, there are no federal requirements in the United States mandating labeling of inactive substances in medicine; only active ingredients are labeled.

Common excipients include:

• Corn
• Modified starch
• Potato
• Pregelatinized starch
• Wheat
• Tapioca
• Pregelatinized modified starch

Because there is no requirement for labeling inactive ingredients, finding out if medication has gluten in it can be quite a difficult process. To find out if a medication contains gluten, patients typically have to call a drug manufacturer directly to obtain the information.

The process is no easier for pharmacists or physicians in a hospital. Even the drug inserts that come with medication do not contain this information, so pharmacists are left calling the same consumer help numbers at the drug companies to obtain the information.

To highlight the importance of education on the issue, on December 3, 2007, CNN Newsroom Anchor Heidi Collins addressed an audience of 12,000 in-hospital pharmacists at the American Society of Health System Pharmacists Mid-Year Clinical Meeting. Heidi spoke about spending Christmas Eve in a hospital emergency room. Her six-year-old son, who has celiac disease, had a horrible infection and desperately needed a course of antibiotics. At 11:00pm on Christmas Eve, no one at the pharmaceutical companies was available to tell the doctors if there was gluten in the pills.

Consumer question departments are generally available Monday through Friday during business hours, making it almost impossible to find out the contents of a pill over the weekend or on holidays.

After calling the NFCA to help her locate the information, Heidi’s son received a strong dose of intravenous antibiotics and recovered quickly from his illness and was able to enjoy his Christmas gifts!

Heidi challenged each pharmacist in the room to become educated about the presence of gluten in medication to prevent other families from encountering the same frightening situation that she did.

To help educate the pharmacists, the  American Society of Health System Pharmacists created two informational brochures: one for pharmacists and one for consumers. To download a copy, visit www.ashp.org.

Heidi was joined at the conference by world-renowned poet Maya Angelou.

To help patients and pharmacists determine gluten content, several organizations have developed guides. Below is information about my favorite resource:

GlutenFreeDrugs.com is a website maintained by Nationwide Children’s Hospital, Columbus Ohio. It provides information for medications including: analgesics, antibiotics, antidiarrheals, antihistamines, cough and cold, antifungals, asthma, enzymes, eye and ear, nasal sprays, oral contraceptives, oral hypglycemics and vitamins.

Brittle Bones: Study finds kids with celiac have low bone mineral levels

My mom and I both have celiac disease. And like many of you reading this blog post, we've both experienced a number of celiac-related complications. The most debilitating for my mom has been her struggle with osteoporosis.

My mom eats calcium constantly. She is always drinking milk, eating yogurt and cheese and doing everything she can to up her calcium levels, including taking Boniva. But 45 years of having undiagnosed celiac disease has left her with bones like a 90 year old...and believe me...she is nowhere near 90 years old. Lets just say she's at least 30 years away from that and even with her brittle bones,  she is still energetic, gorgeous and the coolest mom ever!!

Nonetheless, every time my mom goes to her doctor, she leaves saying how much she wishes she had found out about celiac earlier in life so she could prevent the ever aching bones and fear of what will happen to her body as she ages.

Hopefully as we learn more about celiac disease, doctors will be able to diagnose children earlier and conduct routine screening for bone density problems to prevent kids from growing up with brittle bones. And, the good news today is that thanks to new research, we may have evidence to suggest why doctors should in fact be screening their patients for low bone mineral content.

A new study published in the Journal of Pediatric Gastroenterology and Nutrition finds that children diagnosed with celiac disease should be screened for low bone mineral content, largely because these kids are at risk of developing early osteopenia.

Researchers from Children's Hospital of Philadelphia evaluated 44 children with celiac disease and 338 healthy kids. The compared the results of bone mineral tests and found that kids with celiac disease had significantly lower levels of bone mineral content than their healthy counterparts.

So what's the moral of the story? The researchers suggest that newly diagnosed children with celiac disease could benefit from screening for low bone mineral content, especially if they have a low body mass index. Parents...if your kids have celiac, get them screened!

Rising Drug Costs & Gluten in Medications

A new report from the Washington, DC-based Center for Studying Health System Change finds that one in seven Americans under the age of 65 went without a necessary prescription medication in 2007, largely because of skyrocketing drug costs.

Now, you're probably thinking that the report applies to people who are uninsured...at least that's what I thought when I first looked at the report. But the study actually found that even people with private health insurance provided by their employers went without much needed medications. In fact, one in 10 working Americans with employer-sponsored health insurance chose not to take a prescription drug in 2007, up from only 8.7 percent in 2003. Why? According to study researchers, the most common reasons were rising drug prices, the introduction of new and more expensive specialty medications to the market, and "skimpier drug coverage that shifts a greater share of costs onto patients."

How does this affect people with celiac disease and those on a gluten-free diet? It's simple and it actually hit me right in the pocketbook just a couple of months ago.

I had what I thought was really good health insurance provided by my employer. But one case of pneumonia later and I found out it wasn't all that fabulous. My doctor prescribed an antibiotic to me that she described as a "bull-dog" to knock out the infection. She had also recently prescribed the same drug to another celiac patient and had already verified with the company that the medication was in fact gluten-free. Yay! What a sense of relief!

I took the prescription to the pharmacy, provided them with my insurance card and waited 20 minutes for it to be filled. When they called my name, I was thrilled and couldn't wait to swallow the first pill and get on the road to feeling better. But as the pharmacist rang me up, my jaw dropped and I almost started crying. The total for one prescription was $187.36. I couldn't believe it. I politely asked the pharmacist if she had run it through my insurance since I always paid $15 for every prescription. She kindly said yes and informed me that the medication was a tier 2 drug (or something like that) and that my insurance would only cover a small percent unless my doctor could prove that I had to take this particular drug over a less expensive alternative like a generic.

So thus began a chase to track down my doctor, explain the situation and try to get the insurance company to cover the antibiotic. The first problem we ran into was finding a medication that we could verify was gluten-free. I'm allergic to penicillin and all of its relatives and my doctor was unsure about the inactive ingredients in a lower-cost generic antibiotic. She waited about 12 hours to hear back from the drug company before telling me that I had to start taking the medication. The pneumonia was a worse predicament than possibly having a reaction to the gluten. So, this lower-cost alternative still cost me $56, but well, that's better than the original price.

Roughly 24 hours after I started taking the medication, my good friends at the Drug Information Center at St. Johns University College of Pharmacy were able to verify that the drug was gluten-free and safe for me to continue taking.

So, what's the moral of the story? First of all, we desperately need health care reform in the United States so that everyone has access to quality, affordable coverage. We need regulation of the insurance industry so everyone with celiac and other chronic diseases can have easy access to safe, gluten-free medication at the same prices as other drugs. Until that happens, here are a few great resources that will help you quickly determine the gluten content of medications:

Gluten-Free Drugs:
a site maintained by Columbus Children's Hospital
www.glutenfreedrugs.com

American Society of Health System Pharmacists
An organization of 35,000 pharmacists working in hospitals, Download the Gluten in Medications Flyer for information about how you can help your pharmacist and doctor find safe drugs.
www.ashp.org