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Celiac Disease – Annual Screening?

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Once you have been diagnosed with Celiac Disease, the treatment is a life-long adherence to the gluten-free diet. There are currently no other treatments. No medications. Nothing. Some doctors believe in yearly screenings to see if the patient is complying with the diet, while others feel that such screening isn’t necessary. There are a couple of different reasons for yearly blood tests that I will discuss below.

First, a child who has been diagnosed with Celiac Disease may feel like he/she does not need to adhere to the diet.  They may cheat when at school or when out with friends. This is more likely in older children/teens who are on their own more than kids under 12. Routine yearly (or even quarterly) testing can alert the parents and doctor to any potential problems. We are having quarterly testing done with my son (who will be 16 in April). While my son follows the diet for the most part, he has admitted to eating a regular Pop-Tart on a dare and he isn’t necessarily as cautious as he could be when eating out.

Secondly, an annual screening may be performed to ensure that no hidden gluten is being consumed.  Some people have a problem following the diet for whatever reason.  There may be cross-contamination issues at home, the individual may travel a lot for work and have to depend on restaurants to safely feed him/her, or they may be new to the diet and learning what is safe & what isn’t.  This is especially important for those who are asymptomatic.  There are many people out there who don’t get sick when they consume gluten or they may not get sick when they consume trace amounts.  For this reason, annual screening can help the patient & the doctor gets a clearer picture of what is going on.

To those who have been diagnosed with Celiac Disease: Do you get your blood tested yearly?  Weigh in below in our poll and feel free to discuss in the comments section.

May is Celiac Disease Awareness Month – What Can You Do?

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

May is Celiac Disease Awareness Month. This is probably not the first time you have heard that and it certainly won’t be the last, not if I can help it. Some quick facts about Celiac Disease:

  • 1 in 133 people in the US actually has Celiac Disease
  • 97% of those people are undiagnosed
  • Celiac Disease is not an allergy – it is an auto-immune disease

I bet you may be wondering what you can do to help with awareness. Well, I am going to talk about several things right now.   Do you have Facebook, Twitter, or email account? If so, utilize them. You don’t have to have a blog to spread the news.   First and foremost, educate your family & friends. If they don’t understand what Celiac Disease is or what the ramifications of eating gluten are, when you need to be on a gluten-free diet, tell them. Are words not working?  Send emails, mail, and flyers.  Since Celiac Disease is genetic, your condition came from someone, right? Make sure that your family members get tested.  Arm them with the knowledge that they will need to speak with their doctor, who may or may not be well-versed in Celiac Disease. Share the consequences of not being diagnosed/treated or not following the gluten-free diet.  Some of those consequences may include:

  • malnourishment
  • cancer
  • vitamin deficiencies
  • short stature
  • miscarriage and/or infertility
  • lactose intolerance
  • cancer
  • neurological issues

Is it really worth having someone you love sticking their head in the sand? That being said, you can’t make someone do something they don’t want to do.  However, that doesn’t mean you have to drop the subject completely.

Part of what makes Celiac Disease hard to diagnose is not everyone experiences the same symptoms. Some peoples’ symptoms may be intestinal, some neurological and some may even be asymptomatic, only being diagnosed after a family member has been diagnosed.  As you know, the initial screening is a simple blood test. If you know someone who has health issues that have gone undiagnosed or are continuing to get worse, it may be worth looking into Celiac Disease.  The NFCA  has a symptom checklist right on its website.  Simply go through it and print it to bring along to the doctor for help in explaining the need to be tested.

There are several different companies that have launched special campaigns for Celiac Disease Awareness month.  Check them out below:

  • 1in133 – The gluten-free Food Labeling Summit that will be taking place on May 4, 2011, in Washington, DC
  • Mambo Sprouts – Many of the brands they support & offer coupons for are running contests for great prizes!
  • Celiac Central is spotlighting a different gluten-free blogger daily during the month of May.
  • NFCA – National Foundation for Celiac Awareness – Many different events will be going on during the month of May.
  • Rudi’s gluten-free – Hosting a recipe contest that runs through May 20, 2011

For more information on Celiac Disease, symptoms, testing, etc, please visit the NFCA (National Foundation for Celiac Awareness).  What are you doing to help spread the word?

Celiac-Disease.com is now on Facebook

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Are you one of the millions of people who use Facebook daily?  If so, we are pleased to announce that Celiac-Disease.com, the featured website of gluten-free Media, now has its very own Facebook page in addition to our already popular Twitter page!  This is exciting news and means getting updates from us is now even easier than ever before.

No longer do you need to worry about missing an update or following us via a separate feed reader? Now you can simply click here and “Like” us to get our updates placed directly into your Facebook News Feed with the rest of your Facebook updates.

With one or more new articles being shared almost every day, it can be hard to keep up with all the news.  I know I certainly don’t want to miss out on anything!  As an added bonus, the Facebook page also offers the ability for users to comment on our posts on the corresponding Facebook page or click through to the website directly to leave a comment.

So, what are you waiting for?  Come on over to our brand new Facebook page and “Like” us! Make sure to use the “Share” button on the left side of the page to let all of your friends and family know about our new page as well! See you there!

Donate to your Favorite Celiac Organization

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This has been a tough year for many folks and when people are struggling to pay their own bills, they usually can’t give much to charities. Many people can give up their time but are not always able to write a check to support their favorite organizations. Several of the groups listed below receive much of their annual donations at the end of the year. Since the money given is usually tax-deductible, it’s a win-win situation for all parties.

There are many celiac and gluten-free organizations that accept tax-deductible donations. For those out there that are in a position to give, please consider supporting the group or celiac center of your choice from the list below. Each organization in its own way is helping to help us all live healthier and happier lives. No matter which group you support, your money will be put to good use to help improve things for all of us.

The people at each center and organization listed above work hard to drive change in the gluten-free/celiac communities. Whether doing research on new therapies for celiac or improving our safe gluten-free dining options, each group plays an important role in raising awareness and promoting positive advances for those living gluten-free in the U.S. and Canada.

When thinking about the end of your giving plan, consider making a donation to one of the organizations above. Every little bit helps and you’ll be doing something for yourself, everyone you know that lives gluten-free, and many that will come after you. Helping others brings a joy that’s almost indescribable and when you can help yourself at the same time, that’s truly something to be thankful for. Happy holidays everyone and a special thanks to all the wonderful folks that go to work every day to try and improve all of our lives!

Mainstream Media Spreads Inaccurate Information about Celiac Disease

Last Updated on by the Celiac-Disease.com Staff Leave a Comment

Five years ago, it was almost unheard of to find information about celiac disease or the gluten-free diet in the mainstream media. Today, there is so much of it that it’s hard to keep up with it all. There was a time when many in our community agreed that all publicity was good for our plight. After seeing so much information plastered in magazines and online lately, I’m starting to rethink my position on the matter. Several recent things caught my attention that I think are worth mentioning.

First up is an article on page 61 in the August issue of Good Housekeeping titled “What’s Making You Sneeze?” The piece even made teaser status on the cover with “I’m allergic to what? Surprising triggers docs often overlook – and how to get relief”. The good news is that the article touches on food allergies and mentions food intolerances. The bad news is that the author goes on to mention that true food allergies involve the immune system as if to infer that food intolerances do not. Guess what Good Housekeeping? Celiac disease is related to food intolerance and is in fact, an auto-immune condition.

Next is this article from the NY Daily Times website. While much of the article is well done and factual, the author mentions the new Duncan Hines gluten-free mixes. Don’t get excited – according to Duncan Hines, only some of their frostings are considered gluten-free. Also, the article notes that the gluten-free diet excludes MSG, even though that is not part of the gluten-free diet protocol. MSG might not be healthy in large doses, but it is a gluten-free ingredient. Incorrect data like this just adds to the confusion over what is and isn’t gluten-free.

Last, but far from least, is the recent segment on the Today Show where ‘tummy troubles’ were discussed by the staff doctor, Nancy Snyderman, MD. I briefly spoke to Snyderman at a GMA taping years ago and she’s very personable and polite. However, she is apparently confused about the proper treatment for celiac disease. As I watched the show video online, I was seriously taken aback when the good doctor gave a fairly bad answer to an important question about the gluten-free diet as it relates to people with celiac disease.

The Today Show is produced at NBC Studios at Rockefeller Center in New York City. Renowned celiac expert, Peter Green, MD practices at Columbia University in NYC. What a shame that the Today Show producers didn’t think to get Green involved in the segment. If you missed it, you can watch the video here. Green would have given an accurate answer to the very important question a viewer asked Snyderman. Contrary to what Snyderman stated in the piece, it doesn’t depend on anything in regards to people with celiac being able to eat gluten eventually. Treatment for the condition is currently strict adherence to the gluten-free diet, period. Celiac disease is not the ‘disease du jour’ and though it’s true that the condition is wildly under-diagnosed – there is no evidence that it’s being over-diagnosed.