Ep 91 Celiac News for September with Ellen

Let’s start the blog with the show notes for this Episode –
It’s now the beginning of September, and I’m thrilled to be chatting again with Ellen Baynes of The Celiac Scene. Ellen searches the internet (and everywhere else) to find informative articles and studies about celiac disease and the gluten free diet. She summarizes them and passes them on to us on her website, on facebook and also in her newsletter.

This week we chatted about –
– The launch of a new app called My Healthy Gut
– A new study that re-looks at the incidence of celiac disease in first degree relatives
– A special requirement for volunteers at a Calgary Food Bank
– A new blood test to look at the immediate effects of gluten on the bloodstream
– Gluten Free meals for emergency or wilderness situations
– How celiacs manage eating at fast food outlets
– Suggestions for offerings at a new gluten free bakery
– How to tell your new boyfriend that kissing after gluten has it’s hazards
– Coffee shops offering gluten free snacks

You can find out more at www.theceliacscene.com where you can also subscribe to the newsletter. The facebook page can be found at www.facebook.com/TheCeliacScene

Sue’s Websites and Social Media –
Podcast https://acanadianceliacpodcast.libsyn.com
Podcast Blog – https://www.acanadianceliacblog.com
Facebook – @acanadianceliacpodcast
Twitter – CeliacPodcastCA
Email – acdnceliacpodcast@gmail.com
Baking Website – https://www.suesglutenfreebaking.com
Instagram – @suesgfbaking
YouTube – https://www.youtube.com/playlist?list=PLUVGfpD4eJwwSc_YjkGagza06yYe3ApzL
(search Sues Gluten Free Baking)
Email – sue@suesglutenfreebaking.com
Other Podcast – Gluten Free Weigh In – https://glutenfreeweighin.libsyn.com

My Thoughts –
First Degree Relatives – That’s a mouthful and something most people never really think about. I remember when I was diagnosed. My gastroenterologist had just finished a biopsy, not particularly looking for celiac, but looking for something. He thought he found damage to the villi, which would need to be confirmed in the lab, but in the meantime, his advice to a very groggy patient was to continue to eat as I was, get a blood test and he would contact me in a couple of weeks. I remember, as it was early December and I was hoping to hear whatever he had to say before Christmas.

I did get the diagnosis just before Christmas. I had celiac disease, although I didn’t know what that meant at the time. He told me I would have cut gluten from my diet and I’d see a dietician to help me with that in January. When I met with the dietician, she advised me to have my first degree relatives go for the blood test as sometimes this condition runs in families.
I remember thinking this was odd – did it run in families or not? Seemed like a simple question. I made an appointment for my daughters at their doctor to get the order for the testing, and I spoke with my parents and my brother. Job done.

The blood tests for the girls were done in March. It was mid-April when I received the results that Deanna, my oldest was positive and Trish, my youngest was negative. Hmm, wasn’t really expecting that. And I didn’t know what it meant. I had just started on this difficult diet and now I had to subject my daughter to it.

Deanna was almost five years old. I met with her doctor. We discussed all the reasons she had been brought to the doctor’s office in these short years. She clearly had the symptoms and now she had the diagnosis. He decided she should start on the diet, and we would monitor her response. If she started to feel better, and her bloodwork indicated that, there would be no need to put her through the biopsy. He was quite confident. I had mixed feelings.

I decided that her fifth birthday at the beginning of June would be her official “no more gluten from then on day”. I planned her birthday around a gluten free menu and even made my first gluten free cake for the occasion. I remember those first few days very well. Most parents I’ve spoken with have had a similar experience. Within 24 hours of starting a gluten free diet, a child shows a dramatic change – no more whining, lethargy is gone (I didn’t even know she was lethargic), everything changes.

And everything did change for us. I started baking everything for her, so that she wouldn’t miss out on anything. We both regained our health and have never looked back. I had worried that I had passed a huge burden on to her, but I soon realized the gift of diagnosis is so much more important. The gluten free diet has freed both of us from pain and discomfort, to say the least. A path to diagnosis is the best gift I can give a first degree relative.