Celiac Disease

Official Website of Celiac-Disease.com

You are here: Home / Archives for Celiac Disease

Celiac Disease

Celiac Support Group 101: Helpful Hints

Last Updated on by the Celiac-Disease.com Staff 3 Comments

Most celiac or gluten-free support groups are run by a dedicated few who pour their heart and soul into making the group everything they think it can be. These dedicated leaders often spend their own money trying to provide newsletters, drinks at meetings, and countless hours emailing members. Here are a few tips to help your support group run a little smoother, even if you can’t get 15 dedicated volunteers to help.

1. Keep it simple. Don’t try to do too much at one time or one meeting. If you know that you can book a speaker and bring drinks, then leave it at that. You don’t have to do 10 things at the meeting. If you have a theme planned, then stick with that theme. If you want to have a meeting in October for Halloween, discuss safe Halloween candy and gluten-free versions of traditional Halloween treats. Leave cookbook announcements for another event. This makes it easier for you, your volunteers, and your members.

2. Keep it short. A 2-hour meeting can benefit a new member who has a ton of questions but may lose the 10-year veteran who has heard all of this information before. A teacher once said “The mind will only hear as much as the butt will endure” so keep the lectures and talks to a tolerable length. Even the most interesting information isn’t interesting when you are thinking “man, I really have to pee…” Break it up with a snack or change in focus, such as Q and A time.

3. Keep it cheap. Don’t spend a ton of your own money trying to offer snacks and drinks. If you have seasoned, dedicated members, ask if someone will volunteer to make cookies or brownies. If that isn’t an option see if you can get the snacks donated by a local trusted restaurant. Better yet, contact gluten-free companies like Pamela’s, Kinnikinnick, Bob’s Red Mill, and countless others, and ask for donations for group picnics or big events. Many times they will send cookies, hamburger buns, or mixes. These are free to the group, so you don’t have to spend your own money. This is also great advertising for the company. If your local grocery stores don’t carry Pamela’s cookies (for example) then your support group members don’t know how great the mini simple bite cookies are! Asking the company to donate a couple of bags for your meeting opens the group to new gluten-free product options.

4. Keep it easy. To avoid burnout, find easy ways to do things. If you have a support group with a lot of members, then emailing is both cheaper and easier than snail mail (and much easier than calling). To make an announcement via blast email you will need a program or non-spam way of emailing a large group of people. Services like Constant Contact and Vertical Response offer mass email with a few clicks. There will be some learning up-front, but when you know the ropes, you will be able to pass along a note about a meeting in less than 5 minutes. Constant Contact offers non-profit pricing, and Vertical Response offers per-email pricing (cheaper for fewer email contacts). There are other services available, just beware of scams and companies that seem too good to be true.

5. Keep it realistic. Think about how you find information, and what you want to have available when you want to look up something. Most of us look to the internet to research a restaurant before we go, check the menu online, and maybe get directions. Consider having a website for your group so the members can do the same thing. When it is easy to look up a meeting time or location the members are more likely to attend. They won’t remember the announcement from the last meeting, but they will remember the website, and check it for updates and news. Yahoo groups, WordPress blogs, Facebook pages, and professional web pages are all options. Spend as much or as little as you like (WordPress blogs are free, as are Facebook pages, and many others). The point is to have your information on the web, where most people look for information these days.

These are just a few helpful hints to get you thinking about how to keep your volunteer work easy and hopefully less stressful. Look for more support group tips and tricks coming soon.

Lesser Forms of Celiac Disease May Increase Risk of Death

Last Updated on by the Celiac-Disease.com Staff 4 Comments

If you’ve ever attended a large celiac support group meeting before or attended any type of event which has a large collection of people who suffer from celiac disease, you may have compared notes and noticed that there seem to be a number of varying types of the disease out there which result in a variety of symptoms. Though they are all forms of celiac disease, some are definitely more severe than others.

Historically, most testing has focused on the most severe forms of celiac, but recently WebMD covered a study that showed patients with less severe forms of celiac disease may be at a higher risk of death.

The researchers compared all patients with a comparison group from the general population and followed them for a median of about seven to nine years (half were followed longer, half less). Among those with celiac disease, there were 3,049 deaths; among those with inflammation, 2,967 died and among the latent group, 183 died.

The increased risk of death, the researchers found, differed by group:

  • Those with inflammation had a 72% increased risk of death.
  • Those with celiac disease had a 39% increased risk of death.
  • Those with latent disease had a 35% increased risk of death.

But Ludvigsson puts the finding in perspective. The most important finding, he says, is the relatively low overall risk of death, even though it is increased. It translates, he says, “into very few actual deaths.”

It is important to note that the researchers also found that people who are diagnosed before age 20 had nearly twice the risk of death.  However, Ludvigsson put that into perspective by stating that kids are at increased risk of mortality.  It is also believed that the higher risk in those with less severe disease may be because of untreated inflammation, as those patients may not be told to follow a gluten-free diet.

Why Some People Don’t Want an Official Celiac Diagnosis

Last Updated on by the Celiac-Disease.com Staff 4 Comments

With all the controversy swirling around the health care reform bill, here is something else to be considered in the mix. Shortly after my celiac diagnosis, our health insurance provider at the time (Blue Cross/Blue Shield) sent us a letter asking if we had supplemental health insurance. We called the insurance company as this was a strange request they’d never sent us before. The insurance giant stated that we probably forgot that they periodically sent us the same letter. We had not forgotten anything and had never gotten such a letter from them in the past, peroid.

After speaking with some people that worked in the insurance industry, and some who used to, everyone agreed this letter might be the insurers attempt to drop my coverage because I had recently been diagnosed with celiac disease. We told the insurance company we didn’t have supplemental coverage and that was the end of it. Maybe we assumed wrong about the meaning of the letter but we’ll never know one way or another.

One of the main issues here is that most insurance companies do not think most people with celiac disease are following the gluten-free diet faithfully. Studies show that up to 60% of patients who are told to go gluten-free continue to eat gluten, so the insurance companies assumptions are understandable. Many of them even mark the charts of celiac patients “pre-cancerous condition”. This is because untreated celiac can lead to several types of cancer, including but not limited to, non-Hodgkins lymphoma.

Certianly I don’t know what the answer is regarding health care reform. Health insurance is not the same as health care anyway, but that point seems to be get lost in the discussion at times. It also seems that in this country, you might be better off not having a bonafide celiac diagnosis on your health record. Here is some evidence that this assumption might be correct.

Excerpt from the Chicago Tribune:

When 17-year-old Brianna Rice was diagnosed with celiac disease in February, she had health insurance.

She doesn’t now.

In the months that followed her diagnosis, her insurance company, American Community Mutual Insurance, combed through her medical records and ruled that her parents lied on her application last year.

In May, American Community not only canceled her policy, but also rescinded coverage all the way back to the day it started — Nov.

Please take time to read the entire article. At the very least, what is happening to this family is sad and unfortunate. Share your thoughts about the issue in the commments below.

Special thanks to Celiac Listserv member Michael Thorn for passing along this article to the list!

Should all Autistic Children be Screened for Celiac Disease?

Last Updated on by the Celiac-Disease.com Staff

Several years ago some naturopath doctors began speaking out about how some children with supposed Autism might, in fact, have celiac disease instead. As reported in an earlier article on this site, there is presently no scientific evidence linking Autism to celiac disease. But now it is painfully clear that some children thought to have Autism actually have celiac disease, and never had  Autism in the first place.

Actress Jenny McCarthy, the founder of Generation Rescue, is probably the best-known mother of an Autistic child who was “cured” by following a gluten-free/casein-free diet and nutritional therapies. Jenny’s latest book “Healing and Preventing Autism: A Complete Guide“, written with Dr. Jerry Kartzinel, helps parents of Autistic children think outside the box in terms of healing this baffling learning disorder.

When Jenny McCarthy went on Oprah and spoke out about the healing journey with her son Evan, the Autism medical community was in an uproar. Certainly, people should not totally ignore their doctors and listen to a celebrity with no medical training. But they are not going to harm their children by trying a gluten-free/casein-free diet. Maybe it could help some of their children too. Surely it will help kids who actually have celiac and not Autism at all.

Treating Autism is big business with 1 and 150 children being affected by the disorder in the U.S. Those numbers indicate the problem is bordering on being an epidemic. Why not test every child with Autism for celiac disease? Is the Autistic medical community concerned with helping patients or worried about how losing some of them to nutritional therapies would affect their bottom line?

Here is an interesting story about Eamon, a child who was thought to have Autism but really had celiac. Be sure to watch both the videos posted, one of which includes comments by Dr. Peter Green of the Celiac Disease Center at Columbia University. How many more kids just like Eamon are out there?

Celiac Disease Statistics

Last Updated on by the Celiac-Disease.com Staff

With things like Celiac Disease, I am always skeptical when it comes to statistics. Statistics are supposed to be factual, but medical statistics are usually projections or guesses in my experience. As a result, I always take these types of statistics with a grain of salt, but at the same time, I feel they can offer some value.

There are a number of Celiac Disease statistics scattered all over the internet, but Mike of Switch 2 gluten-free did a great job of collecting these statistics in one convenient location.  Here are my two favorite statistics:

1 in 4,700 people is ever diagnosed with Celiac Disease.

  • 97% of Americans estimated to have Celiac Disease are not diagnosed.
  • The average length of time it takes for a symptomatic person to be diagnosed with Celiac Disease in the US is 4 years (11 years 6); this type of delay dramatically increases an individual’s risk of developing autoimmune disorders, neurological problems, osteoporosis, and even cancer.
  • The average cost of misdiagnosis is $5,000 – $12,000 per person per year.
  • Improving the time to diagnose Celiac Disease could save the healthcare system millions of dollars annually in unnecessary medical care.
  • 60% of children and 41% of adults diagnosed during the study were asymptomatic (without any symptoms).

There are no signs or symptoms typical for all people with Celiac Disease. Signs and symptoms can vary greatly from person to person.

  • Celiac Disease has over 300 known symptoms although some people experience none.
  • Only 35% of newly diagnosed patients had chronic diarrhea, dispelling the myth that diarrhea must be present to diagnose Celiac Disease.
  • 30% of the US population is estimated to have the genes necessary for Celiac Disease.

You can check out the complete list of Celiac Disease statistics here, as well as the sources of where they come from.