Gluten Free Resources for a New Diagnosis

Many of us have been doing gluten free for a long time…so long sometimes it is easy to forget how to look at a gluten free diagnosis through the lens of someone who was newly diagnosed.  This week I received a great question from a new reader:  

Jennifer wrote:

“What’s the best guide/place to look for a list of the most common gluten free foods – a safe and unsafe list? I’m newly diagnosed and seeking the best information I can find.”

Gluten Free Resources

Thanks for asking Jennifer.  Of course one of the answers I will give you regarding lifestyle information and celiac/gluten free news is right here at TheSavvyCeliac.com.  I comb through stories, do interviews and cite resources to get out good reliable information.  I also have a quick read-free e-book called The First 30 Days Gluten Free which is downloadable right here.

Aside from this site, here are great resources plus their Twitter handle so you can easily find them via social media:

Online Gluten Free Resources

There are a lot of FANTASTIC online resources compared to 14 years ago when I was researching this for my own daughter with celiac disease.  Specifically you mentioned a list of safe and unsafe ingredients.  I always send people to the Safe List and Unsafe List at Celiac.com.  It is the most comprehensive in my opinion.  You can find them on Twitter at @Celiac_Disease

Research organizations:  These centers are at the cutting edge of research regarding celiac disease and non-celiac gluten senstivity.  Some are better than others at talking about lifestyle versus just facts and figures.

Center for Celiac Research: Alessio Fasano, MD heads up this research which is based at Mass General in Boston.  This organization spearheads the “Celiac Walk”, which is in its 13th year fundraising for research.  There are several events across the country. Twitter: @CeliacResearch

U of Chicago’s Celiac Disease Center: Stefano Guandalini, MD oversees this research facility.  It has great facts and figures on celiac plus it does a Gluten-Free Care Package Program for folks who are newly diagnosed with celiac disease Twitter: @CureCeliac

Celiac Disease Center at Columbia University Medical Center:  Peter Green, MD is the brain behind much of the research at Columbia.  He is an international expert and a first go-to when any of the national news organizations do stories on gluten free.  Columbia is incredibly involved in much of the research that has already happened or is going on at this time.  There is not a specific Twitter account for the celiac center but here is the handle for the school:  @Columbia

Support Groups/Organizations:  

Gluten Intolerance Group:   Also known as GIG, it does conferences, has support group chapters across the US, has a gluten free certification program, supports kids’ camps and much more. Twitter: @GlutenDotNet

Celiac Sprue Association: CSA has a group membership, a recognition seal program, an annual conference and support group chapters. Twitter: @CSACeliacs

Celiac Disease Foundation: CDF also has support group chapters and an annual conference, but this last year it also debuted a physician referral program as well as a survey to see if you have celiac symptoms. Twitter:@CeliacDotOrg

National Foundation for Celiac Awareness: The NFCA does a good job of covering many different areas: from young kids to college and into adulthood.  It has a GREAT Kitchens program for restaurants and schools, camps and colleges.  One thing I really like about this group is that it has free educational opportunities when it hosts the occasional free webinar. The topics are always timely and they have great experts. Twitter: @CeliacAwareness

Blogs:

About.com has a great celiac disease/gluten sensitivity writer in Jane Anderson.  She does very good research on subjects that affect us every day.  Twitter: @AboutCeliac

GlutenFreeEasily.com is more recipe and cooking oriented.  Shirley Braden is very active on social media and if you ever had a question, I am certain she would reply! Twitter: @ShirleyGFE

Triumph Dining’s blog is pretty good as well.  They often have early notification on new gluten free products.  Twitter: @TriumphDining

There are a TON more of GREAT bloggers out there that cater to whatever angle of celiac or gluten free living you are looking for. Most are also found on Twitter.  

Other:

Gluten Free Watchdog:  This is a subscription site.  Gluten Free Dietitian Tricia Thompson tests gluten free (both labeled and not labeled) foods and reports on what the gluten factor may be in any particular product.  She does very good informative writing and is someone to follow on Twitter @TriciaThompson

American Celiac Disease Alliance: An advocacy group for celiac disease in Washington.  It has a lot of information particularly where the law (or potential law) meets gluten free; examples:  FDA Gluten Free Labeling Rule, 504 plans and getting food accommodations in schools and college. Twitter: @CeliacAlliance

Books and Magazines Gluten Free Resources

Celiac Disease a Hidden Epidemic by Peter Green, MD is a GREAT book for people with celiac. It spells out how to test for, the definition of and how to treat celiac disease.

Gluten Freedom by Alessio Fasano, MD is not even out until next month, but this book says it will discuss gluten-related disorders, including celiac.  But this may be better suited for folks with gluten sensitivity.  I am getting a copy to review.  You can watch for that here in the coming weeks.

Gluten-Free Living magazine:  This is a great magazine for people looking for both lifestyle and news about living gluten free.  Full disclosure I write the Family Matters column for the magazine. It is the best gluten free magazine resource for you in my opinion. Twitter: @GFLiving

Using Phone or Tablet Apps as a Gluten Free Resource

Is That Gluten Free?  Is one I have on my phone.  After doing the gluten free thing for 14 years, I don’t use it a ton.  But I do recommend it especially for new folks.  It costs $7.99, but you can look up brands and foods on the app to see if they are gluten free. 

Find Me Gluten Free has both a website and a Find Me Gluten Free app.  Both are free to use and are great for finding gluten-free friendly restaurants and stores.  You always still want to have a conversation with the restaurants to ensure your safe gluten free dining experience, but this will lead you in the right direction.  Twitter: @FindMeGF

Gluten Free Registry also has a website and app for finding restaurants, but I found the app not working as well as I would have liked (technically speaking).  But you can check it out and see if you like it. Twitter: @GFRegistry

Other app options can be found at this link.

There are so many resources out there these days, it is easy to find the information you need.  But you want to seek out those who are reliable as well.  I hope these suggestions will help you make smart choices in the gluten free world.  If you have suggestions, feel free to comment below on the resources you like and why!  

Tags: celiac, Center for Celiac Research, Columbia, dining, food, gluten-free, lifestyle, living, reliable, resources, restaurant, University of Chicago