A Conversation with Lisa Rigney

Let’s start the blog with the show notes for this Episode –

We’ve spoken before about some of the differences in the diagnosis of a child as opposed to an adult.  On this episode I speak with Lisa Rigney about how her daughter was diagnosed and some of the immediate changes it made to the family dynamic.  It’s easy in hindsight to look back and see some symptoms in a child that were clearly missed as the family went about their daily lives.  Lisa has recently begun working with the Edmonton Chapter of the CCA and hopes her family’s story will help others on the difficult journey of having a child diagnosed with celiac disease, when neither parent has been diagnosed.

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

Email – sue@suesglutenfreebaking.com

Other Podcast – Gluten Free Weigh In – https://glutenfreeweighin.libsyn.com

My Thoughts –

As adults we are very conscious of what is normal and when we need to seek medical assistance.  If we’re having more and more urgent bathroom breaks than those around us; if we experience pain from eating that doesn’t seem to effect others; if we get sick more often and don’t get over things like our friends and relatives do – it’s time to seek medical help.

The story is different with children.  Many children suffering with the symptoms of celiac disease don’t know any different.  They don’t know what it’s like to go through a day without tummy upset.  Why would they, they’ve never experienced it. 

I remember back to before my diagnosis, and before I knew to have my daughters tested.  My oldest was always a whiny child, not fussy, just whiny.  She was pleasant in the morning, energetic and enthusiastic.  As the day worn on, she became “difficult”, she didn’t want to do anything with the rest of the family, she complained, not about anything in particular, but everything in general.  Then, the next morning, she was pleasant and lively again.

I remember she often got ear infections, which required an antibiotic.  A couple of the medications didn’t agree with her and caused her to be spending most of her time in the bathroom.

She was also small.  Our family is not tall in stature, but she was smaller than any of us.

These are the things I can look back on now, knowing she was diagnosed with celiac disease before her 5^th birthday.  She was an early talker, and always had lots of words, but she couldn’t tell us that something was wrong, because to her it was normal to feel this way.  I, as her parent only thought she was a difficult child, not in the mornings, but as the day went on. I was able to explain away subtle symptoms, that I know now should have raised a bigger red flag. 

It wasn’t until I was diagnosed and then had both the girls tested that my oldest came back positive.  I didn’t know enough about celiac at the time to put all the pieces together, but now the pieces fit like a puzzle.  The celiac diagnosis of a child is rarely straight forward, but it’s a gift.  If I hadn’t been diagnosed, I can’t imagine how long she would have gone without having the puzzle pieces connected.  I am thankful for my diagnosis, not in small part, because it led to her diagnosis and as time went on, we were both able to get healthy together.

A Conversation with Dr. Jenny Jagers

Let’s start the blog with the show notes for this Episode –

Diagnosis stories are always interesting.  Some are very short, some take longer, and some standout because of their complexity.  On this episode I speak with Dr. Jenny Jagers, who has a doctorate in medicine, but is not a medical doctor.  She was able to recount her time before diagnosis, as well as the varied symptoms that led to confusion and a negative test for celiac disease.  The real story though occurs after she receives her diagnosis.  Jenny is from a very large family and what she did next had a profound effect on so many others.  Jenny is now a volunteer with the Calgary Chapter of the CCA and it’s very clear, she is going to continue to make an impact on the lives of so many going forward.

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

Email – sue@suesglutenfreebaking.com

Other Podcast – Gluten Free Weigh In – https://glutenfreeweighin.libsyn.com

My Thoughts –

Families come in all shapes, sizes, and temperaments.  When one of us gets a diagnosis of celiac disease, we turn to our families to share our “discovery” in hopes that our experience might help them learn more about their genetics and possibly unlock a solution to ongoing health issues.

I’ve always found it curious that many people “don’t want to know” about our diagnosis.  They don’t want to think it might be a “family issue” and effect them as well.  It can often be an uphill battle to get other family members on board with the possibility that celiac may be the cause of other family health problems.

When I think about this dis-connect, I’m drawn back to the vilification of the gluten free diet.  We’ve all heard the “jokes” about gluten free food, and how it’s just an inconvenient choice that makes any meal difficult for everyone.  We sometimes want to blame those who do not have celiac disease and choose the diet for other health reasons, for fuelling the idea of self-importance and communal inconvenience.  I try never to go down this path.

It does seem the public “bad rap” that has identified the gluten free diet has become a stumbling block for other family members.  They can’t get past the inconvenience to see the diet for what it really is – our medicine.

When I think back before my diagnosis to the times I ended up flat out on the floor in my room, after a meal, writhing in pain, ready to do anything that would stop this from happening, gluten free seems so easy.

If only others could embrace the restrictions of the diet to understand that we don’t require expensive, invasive medical procedures, or require life-long medications that mess with our immune system and could have profound side-effects.  Embracing the gluten free diet is not easy for those who stand by us and watch us struggle, especially in the early days of a diagnosis, but the big picture is so much more important.  Gluten is our enemy.  Removing gluten is our medicine.  Simple, but not easy. 

A Conversation with Producer Hayley Repton

Let’s start the blog with the show notes for this Episode –

This week I’m thrilled to be speaking with Hayley Repton, producer of the short film – “Glutened”. The film is a fast-paced look at a young woman’s rollercoaster journey after diagnosis; how her life changes and how she comes to terms with the many aspects of her new lifestyle.  Hayley let us in on some behind the scenes information, along with some of the rational for the many threads she pulls together to weave the story.  I admit to Hayley that I cried at the end of the film, and when I’ve re-watched it, my emotions are still so close to the surface.  This is an important film to watch, both for the diagnosed and those around them.  Hayley has crafted a story that pulls the viewer in and imparts an incredible amount of true-life information in 8 minutes.  Thank you, Hayley for this valuable contribution to our community.

You can watch the film “Glutened” on Vimeo at https://vimeo.com/486284734

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

Email – sue@suesglutenfreebaking.com

Other Podcast – Gluten Free Weigh In – https://glutenfreeweighin.libsyn.com

My Thoughts –

We forget.  Maybe we try to forget the first few months of our diagnosis that required a gluten free diet.  Maybe it became a blur for us as we progressed through our knowledge of the diet and lifestyle.  Maybe we had other family members that required the diet as well and our focus shifted to them.  Whatever the reason, the short film “Glutened” brings everything flooding back. 

I often assist people when they are first diagnosed.  This started with my involvement in the Canadian Celiac Association and became more pronounced when I opened my gluten free bakery.  I was the go-to place for information and support when someone first received their diagnosis.  It became a matter of course for me to ask the right questions and direct individuals in label reading, how to handle social situations and towards helpful resources.

How soon we forget.  This past year, any guidance I’ve given has been online, omitting the personal touch.  Most of us have cocooned in some form or another for almost twelve months now.  This is a great strategy to eat gluten free, few restaurant visits, curated food delivery, and minimal if any social events.  We could cook and bake for ourselves as most of us had more time on our hands.  We felt relatively safe in our small gluten free bubbles.

Watching the film brought back that tentative sense of control.  Being home gives us control, but remembering when we were all expected to interact constantly with the rest of the world can make us anxious all over again.  Maybe, had I not been in such control for a year now, I wouldn’t have taken the film so personally.  On the other hand, I think I needed a jolt, a jolt to my memory of how the diet effects all aspects of our lives, not just our trips to the grocery and then the refrigerator.  This film is different from the many (many) videos we consume daily about shopping, preparing and eating gluten free.  This film is a journey; one most of us have taken and one many of us are happy to file deep in our brains and not reference often.  That’s what makes this film important.  The ability of a film maker to stir emotion is powerful and rare.  Likely, your friends or family will not feel the same way about watching the film, but it’s still valuable for you to share it. 

Hayley has done her job, she’s stirred the emotions of many people and she should be very proud of her work.  She told me she’d like to produce more content about the celiac/gluten free journey and I, for one am excited and in total support.  Hayley, show me more, I’m open to another good cry.

A Conversation with Ellen Bayens of The Celiac Scene

Let’s start the blog with the show notes for this Episode –

It’s early February and time again to welcome Ellen Bayens of theceliacscene.com back to the podcast to discuss some of the news and happenings she has brought us from the celiac and gluten free world.  Ellen and I talk about a couple of studies, one to do with universal testing of children for celiac disease and the other is a very small study looking at managing the gluten free diet.  We also chat about food blogs, and in particular one from Teresa of Gluten Free KOB, as a compliment to her online baking courses.  Gluten Free Oreos have hit the market in Canada which prompts a lively discussion following much controversy over social media regarding package labelling.  Recently, I received an email from a woman in England who produced a short film called “Glutened”.  It is a must-see for everyone with celiac disease, and for those around them.  I will be interviewing the producer for this podcast in the near future.  Listen for the interview and you can watch the film at https://vimeo.com/486284734

Study Urges Universal Screening for Celiac Disease in Children

Managing a Gluten-Free Diet Affects All Levels of Society

Introducing KOB Gluten-Free Baking Resource – FREE Printer-Friendly Recipes & Instructional Videos

‘Glutened – The Film’! The everyday life of a newly diagnosed celiac who finds her gluten-free groove!

Direct link to the short film “Glutened” – https://vimeo.com/486284734

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

Email – sue@suesglutenfreebaking.com

Other Podcast – Gluten Free Weigh In – https://glutenfreeweighin.libsyn.com

My Thoughts –

Gluten Free Oreos – not sure I ever thought I’d be typing that phrase.  There are many things I missed when I was first diagnosed.  One was oreos, mostly because I enjoyed them with my daughters.  Once my oldest was diagnosed at age five, we began searching for her favourite foods in a gluten free version. 

I have over the years, been able to make almost anything I missed.  I even made a version of gluten free oreos – yumm!  Most of the time however, I was quite contented with the KinniTOOS cookies from Kinnikinnick.  This does make me think of the many gluten free versions of things that we now have widely available.  Who would have imagined gluten free Kraft Dinner (mac & cheese)?  We have so many flavours of ice cream, for instance – Chapman’s Cookies & Cream, along with a multitude of cake mixes to rival any gluten selection of the grocery store.  Snack foods abound including different flavours and shapes of pretzels, corn chips, a large assortment of puffed food snacks (rice, corn, lentil etc.), many from the big label brands. 

We can’t forget about pasta.  When I was first diagnosed we had rice pasta, white or brown.  I was fine with that as it filled the need.  Over time, we have been treated to some amazing pastas made from a variety of ingredients I would never have thought would have worked for the humble pasta dishes I was making.  Even the big names like Catelli and Barilla have developed excellent products.  Corn, quinoa, chickpea, lentil and multigrain to name a few of the huge variety we find to tempt us.

I’m excited to try the new gluten free Oreos.  But I’m more excited when I realize how the gluten free diet has been accommodated and even catered to by some very large food companies with some excellent products.  Gone are the days when our food was just edible.  These new foods give more hope for the newly diagnosed.  The diet is hard, but these innovative products bring it within reach of many more.  Good for Us!