Celiac information


March 1st, 2020

This is a list in progress.  

I was  recently diagnosed as a Celiac at the age of 62.   I do a lot of reading about this auto-immune disease and wanted to share resources I have found for those just starting out. I thought it would be easiest to just make a list for my reference  and to also share with others that may  find this helpful.   

There are many informational sites that offer great info as well as blogs and Facebook. 

  My advice is to read as much as you can from these information sites and read Celiac resource books.  This is where you will find your most accurate information. Honestly, there is so much mis-information and fear-mongering spread (mostly on Facebook sites) it makes me sad for newly diagnosed people. Some people spread fear and mis-information -mainly by repeating information that someone told them. Sometimes you may find a nugget in the conversations-but I always double check this info. You should always double check to be sure.

I personally would not recommend a newly diagnosed Celiac meet with a regular dietician. Certainly was a waste of $ for me.  Believe me I was no expert, but I read everything I could get my hands on and by the time of my appointment, I knew way more than the dietician about a Celiac diet. Not so much the clinical end of the diagnosis, but the day to day  diet and living with the disease.  It's real easy to tell someone not to eat wheat, but to understand the dynamics of diet and the disease is essential.  In my town there is little knowledge of Celiac's.  My doctor had never treated a patient with celiac and  had to do research! I did take a trip to the big city to meet with a Celiac Dietician and was diagnosed by a Gastroentologist in "the big city". Both the Dr and the dietician were also a Celiac and that was helpful.  The dietician was especially knowledgeable about cross contamination. 

 Quite honestly, I have found my best resources online.  

 I find great recipes on blogs and just casually monitor Facebook groups. More than anything, I feel there is a lot of 'fear mongering' and flat out mis-information on some Facebook groups (with just a few exceptions).  I think that will be the case on any site that lots of people have input and are free to comment. And...some people get way off track with their comments. LOL  

I will link sites I joined when first diagnosed.  You can make up your own mind what you find valuable and what you don't. 

I can tell you that by far-my favorite resource is blogs(great recipes and advice), and  My Celiac Space Inner Circle on Facebook. .  Erin Heidenreich shares lots of great information  and tips on her Instagram account. (the_celiac_space) and Facebook page.  She is a celiac and also a celiac dietician. She is down to earth and can easily dispel rumors flying around. She gives valuable advice through posts and weekly informal videos.  She also has a web page and you can contact her about becoming a client through this site.  If you are struggling-she may be a great resource for you. I am sure there are other coaches out there that you can find. 

Also, try out Gluten-free RN. She teaches medical professionals about celiac disease, but is always willing to help. I am unsure if she counsels or not. She has Facebook, Instagram and a website. She also has a wonderful list of podcasts that you might find helpful.

I would love it if you would share your favorite information resources!  I am fairly new at this celiac 'thing' and  am always open to new information. 

And Pinterest in a great resource for GF recipes!
Here is a link to my Pinterest Gluten free page.

All sites are listed alphabetically. 

One last thing, Celiac Disease is  a lifestyle change and can be inconvenient at times, but it is certainly not the end of your life. Get on with it-you can do this...I promise!


Celiac information sites

Allergic Living

Beyond Celiac-information on celiac and latest research.

Celiac Disease Foundation-studies and research

Everyday Health-general celiac info

GCC-Gastroentoloy Center of Connecticut (new to me but looks like some good info)

GIG(Gluten Intolerance Group)-lots of resources

GI Kids-for kids

Gluten-Free Living-one of my favorite sites

Mayo Clinic-Celiac Disease-clinical and resarch information

National Celiac Association-information (has a kids section)

The Celiac Space-Erin Heinderich Registered Dietician covered by Blue Cross

University of Chicago Medicine-clinical information


Verywell Fit-great advice on kitchen safety etc. Easy to understand information. 



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Books I recommend-

Celiac Disease for Dummies-recommended by my Celiac Doctor.  I think this may be out of print but I bought mine used through a large bookstore. It took a while to get but worth the wait. 

Gluten-Free Baking for Dummies

Gluten Free -The Definitive Resource Guide by Shelly Case

Dear Gluten, it's not me, it's you  by Jenny Levine Finke ***new November 2020.  I bought mine on Amazon. A great resource.  Her blog is listed below. Fortunate for me, her blog was one of the first I found and I love it! It is linked below.  Good for you Gluten Free. 


****Cookbooks

I haven't tried this list yet but intend to!

Clean Desserts by Karielyn Tillman (new gift to me so untested)

Complete Gluten-Free Cookbook by Donna Washburn & Heather Butt

Sweet Cravings_Kyra Bussanich (first gluten free winner of Cupcake Wars) Her cupcakes are to die for. She has a bakery in Portland, Oregon and boy golly I try to visit every time I go to the big city!

The Everything Gluten-Free & Dairy-Free Cookbook by Audrey Roberts. 

The Gluten-Free Gourmet Bakes Bread by Bette Hagman



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Gluten Free Blogs 
(most of these have FB pages and some have web sites as well)
I would recommend subscribing to these blogs to receive notices of new posts. I follow lots of great blogs. It will take me a while to get them linked. They can easily be managed by either Bloglovin' or Feedly.


Allergy Awesomeness

Allergy Free Alaska

A Little Insanity

A Saucy Kitchen

A Stray Kitchen-recipes

Celiac Family

Faithfully Gluten Free

Fat Celiac-lots of posts on studies etc-very informative

Flavor Walk

Flippin' Delicious

gluten-free baking

Gluten-Free Homemaker-meal plans (yummy)

Gluten Free on a Shoestring

 Good For You Gluten Free-Info and recipes

Iowa Girl Eats-great recipes

Kumquat

Let Them Eat gluten free Cake

Mamagourmand-great recipes

Meaningful Eats

MsModifiy-Gluten Free Living

The Gluten Free Gathering

The Loopy Whisk-choose Gluten Free from drop down menu

What the Fork

Wheat by the Wayside

Wheat Free Mom-recipes





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Facebook Groups

*** My Celiac Space Inner Circle(my favorite)



Gig of Portland (Oregon)

Gluten Free RN-education for Nurses and Health Care Providers (Oregon)

Mama Knows Gluten Free-great recipes and cookbook

MI Gluten Free Gal-info and recipes (MI=Michigan)


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Good info to know

Bread Maker with Gluten Free option

Gluten Free Candy List

Gluten Free Nut Info  

Nuts.com-I have ordered from here! Great products and selection.

12 things to replace in your kitchen


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