A Celiac Story: 17 Years After a Diagnosis
Posted: March 25, 2024 Filed under: Celiac, Gluten free, Health | Tags: Celiac, celiac diagnosis, Celiac disease, gluten, gluten free, gluten free life, Gluten-free, health 2 Comments
As a preschooler, my daughter suffered from stomach aches, bloating and fatigue among many other symptoms.
The month of March always makes me take a deep breath because it’s the 17th anniversary of my daughter’s celiac diagnosis. She was 5 years old at the time, and before her diagnosis I was constantly concerned over her small stature and low body weight (despite her ravenous hunger), her inability to sleep through the night, her constant stomach aches and bloating, the dark circles under her eyes, chronic constipation and other symptoms.
Doctors ignored my concerns. I was lucky that a good friend happened to mention an endocrinologist in our area someone she knew had seen. This doctor finally listened and understood what might be going on in my daughter’s body. He scheduled an endoscopy, which revealed severe scarring in her small intestine due to celiac disease.
A diagnosis was the first step. But the second step was learning how to transition to a gluten-free diet in order to keep my daughter safe. It was an enormous challenge for me, especially because I was a noncook.
When my daughter was in middle school, I began writing the book, Celiac Mom. As a long-time journalist, I felt it was my responsibility to share our experience to support others who might be facing a possible celiac diagnosis or gluten intolerance.
I’m so honored that Celiac Mom has become a go-to resource for those looking for help. I share the unvarnished ups and downs of our journey along with resources such as easy gluten-free recipes, shopping lists and restaurant meals that have been safe for us.
I’m happy to say that 17 years later my daughter is getting ready to graduate from college, and she’s doing great! A celiac diagnosis is tough to navigate. But it is not the end of the world. In fact, it might just be a new beginning.
Now, 17 years after her celiac diagnosis, my daughter is on a gluten-free diet, and she is healthy and happy.
A New Celiac Diagnosis: 6 Tips to Help You Adjust
Posted: May 1, 2023 Filed under: Celiac, Gluten free, Health | Tags: celiac diagnosis, Celiac disease, gluten free, gluten-free tips, health tips Leave a comment
1. Give yourself time to grieve.
Depending on how old you are, you’ve probably been eating gluten for a long time. It’s a huge change to give up gluten, an ingredient that is ubiquitous in our society and found in most meals. It’s important to recognize the enormity of this transition. You can allow yourself to be sad without wallowing in grief.
2. Find support.
Reach out and surround yourself with knowledgeable people and others who have celiac. These days there are Facebook Groups, Instagram Accounts, Online Support Groups and wonderful celiac organizations. Just Google celiac support and you’ll find that you’re not alone.
3. Recreate your favorite meals.
Most people have one or two meals they can’t bear to live without. It might take a little bit of work, but it’s worth it. Do some research and find gluten-free ingredients you can substitute for that special meal. You can find GF pasta, cake mixes, cookies and so much more.
4. Focus on your healing.
It’s easy to focus on the negative – all the things you can no longer have. But take a moment each day to focus on how you’re helping your body. By eliminating gluten, you’re giving your body the chance to heal. It may take a few weeks (and sometimes more) of eating gluten free, but you will notice the benefits.
5. Be cautious.
Friends and family who don’t understand celiac, may try to get you to eat “just a little gluten” or food that has been cross contaminated. Don’t let their lack of awareness cause you to falter. It’s not easy to stand up to peer pressure when it comes to food, but it’s so worth it.
6. Forgive yourself.
Mistakes happen. Even the most conscientious and diligent people will accidentally ingest gluten. Be gentle with yourself and know that each gluten exposure is a lesson learned. It takes time to understand and adapt to a completely gluten-free lifestyle. You will get there!
*Save this blog post as a reminder or pass on to a new celiac.
If you’d like to read our family’s celiac story, check out Celiac Mom.
Learn More About Inspiring Alzheimer’s and Dementia Memoirs
Posted: July 4, 2022 Filed under: Alzheimer's, Books, caregiving | Tags: Alzheimers books, best alzheimers books, book recommendations, dementia books, dementia memoirs, dementia resources 2 CommentsAs a manager and director of AlzAuthors, I’ve had the privilege of reading so many inspiring memoirs about Alzheimer’s and dementia. Each book tells a unique story and offers understanding and inspiration. They are books I would have loved to read when I was going through my own caregiving journey with my mother over twenty years ago.
Every week, I discover more! Just a few weeks ago, I finished an amazing story about a woman who cared for her husband who developed Alzheimer’s that was connected with Lyme disease. It was a beautifully written, scientifically based book. Check out What Lurks in the Woods by Nicole Bell.
This week, I’m reading the literary memoir, Everything Left to Remember by Steph Jagger. As her mother descends into Alzheimer’s, they journey on a road trip through national parks and the author spirals back in time to discover parts of herself and how she and her mother are linked. It’s a beautiful read!
A couple of months ago, I was asked to review and recommend some of my favorite books. I chose to write about inspiring Alzheimer’s and dementia memoirs. Follow this link to read about these books. Each one touched me deeply!
If you are looking for books to support your dementia journey, you’ll want to peruse the AlzAuthors Bookstore. You’ll find memoirs, novels, caregiving guides, books for young people, poetry and more. Don’t forget to sign up for our weekly newsletter which offers information about new Alzheimer’s and dementia resources. If you subscribe, you’ll also get a free copy of our first anthology, Alzheimer’s & Dementia Caregiving Stories.
Celiac Series: A Book, a Podcast and an Instagram Account, Week 5
Posted: May 30, 2022 Filed under: Celiac, Gluten free | Tags: Celiac Awareness Month, Celiac disease, gluten free life, gluten free tips Leave a commentWelcome to the last Monday of Celiac Awareness Month! It’s my pleasure to share three more resources that will support your celiac or gluten-free journey. You know the drill, so I’ll get right to it!
Book:
The Celiac Disease Diet Plan by Jamie Feit, MS, RD @jamiefeit_nutrition
Jamie is a nutritionist who helps busy moms learn how to prepare healthy food their families will enjoy, without spending hours in the kitchen. I don’t know about you, but this speaks to me. Her book shares her family’s story, guidelines for setting up a GF kitchen, all the names gluten hides under, a 2-week GF meal plan and 65 GF recipes.
Podcast:
Celiac Straight Talk from Beyond Celiac
Celiac Straight Talk shares “the ups, the downs, the temptations and the successes” of living with celiac. This podcast covers a variety of topics including diagnosis, gluten-free diets, dating with celiac disease, interviews with experts and more.
Instagram Account:
@gfreeabilenetx
If you want to be inspired by some downright gorgeous photos of gluten-free food, you’ll want to check out Michele’s account. Diagnosed with celiac in 2001, she has some experience with GF cooking. She also happens to be an animal lover and a sunset chaser (two things I identify with), and she clearly knows what she’s doing behind the camera!
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Now, because it’s the next-to-last day of Celiac Awareness Month, and you’ve been so faithful, I’m sharing a few bonus resources for you!
Bonus Resources:
Last year, I created “A List of “Great Gluten-free Blogs.” The Celiac Series: A List of Great Gluten-free Blogs | Fields of Grace (wordpress.com)
Be sure to check them out, and if you see any I should add to the list, feel free to DM me on my Instagram account @glutenfreeforgood.
Also, if you like reading articles about celiac disease from different perspectives, you’ll enjoy these writers, who have both written extensively about life with celiac. Follow them both and check out their bios to find some fantastic, beautifully written stories.
Cherie Gough @cgoughwrites
Eleni S. @eleni_celiac_journey
I also have to share a bonus podcast, an episode of Time-Love-Coffee-Peace by Lisa Marie Chirico. She interviewed me right after Celiac Mom came out. Lisa had been curious about a gluten-free lifestyle for a long time, and she is the kind of friend who you can share anything with. She pulled so much good information and so many great stories out of me, and we laughed a lot!
Thanks for following along this month. Wishing you all a healthy, happy year!
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If you’ve just started your celiac journey, you’ll want to pick up a copy of Celiac Mom, which tells the story of my daughter’s celiac diagnosis at the age of five. As a noncook, I share the ups and downs of protecting my daughter from gluten and the steps we took to make our home gluten-free. It wasn’t easy, but the transition was so worth it. My husband, daughter and I are all so grateful for the improvements we’ve seen in our health!
Celiac Mom includes:
- Two weeks of easy gluten-free recipes
- Favorite family recipes from well-loved chefs
- Helpful people, websites and products
- Gluten-free shopping lists
- Ideas for eating out safely
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Don’t forget to visit last year’s series which includes the following articles:
A Personal Introduction to Celiac Disease
7 Tips for Celiac College Students
A List of Great Gluten-free Blogs
A Daughter’s Symptoms of Celiac and Why They Were Ignored
5 Reasons I’m Grateful for Celiac Disease
3 Tips for Adjusting to a Gluten-free Lifestyle
Did you know? 3 Things That Have to do with Celiac Disease
Celiac Series: A Book, a Podcast and an Instagram Account, Week 4
Posted: May 23, 2022 Filed under: Celiac, Health | Tags: Celiac Awareness Month, Celiac disease, gluten free resources Leave a comment
Welcome to Week 4 of Celiac Awareness Month! It’s my pleasure to share three more resources that will support your celiac or gluten-free journey.
This time of year always reminds me of the challenges I faced as a mom who had just received a celiac diagnosis for my young daughter. Fifteen years ago, there were few resources and hardly anyone had heard of the word “celiac.” Needless to say, it was an uphill battle to figure out how to nourish my daughter, who was severely underweight and undersized at the age of five. That’s why I wrote my memoir, Celiac Mom — which shares her story from pre-diagnosis through high school — to help provide support for those in need. Follow the link in my bio, if you’d like to get a copy.
That’s also why I’m so pleased to introduce you to this week’s book, podcast and Instagram account to help you on your celiac journey.
Book:
Against All Grain: Meals Made Simple by Danielle Walker @daniellewalker
I eat low carb because diabetes runs in my family, so this book, which my sister gave me several years ago, was a lifesaver. I so appreciated having a place where I could find gluten-free, dairy-free and grain-free recipes that were not terribly difficult to make.
Podcast:
Gluten Free News by Andrea Tucker @baltimoreglutenfree
Health Educator Andrea Tucker offers vetted information including news, product reviews, events and research to support healthy gluten-free living. Her short news briefs will help keep you up to date on everything gluten-free and celiac related.
Instagram Account:
If you haven’t seen Casey Cromwell, a self-described “Gluten Free Celiac Foodie,” on Instagram, you’ve been living under a rock. Casey shares wonderful glutenfree videos, recipes and weekly giveaways. She also shares her personal story and her health struggles, which is what drew me in. Check out her account and sign up for some giveaways! You never know what you might win.
Don’t forget to join me next week. Since next Monday will be the last Monday of Celiac Awareness Month, I might just throw in some surprises. Thank you to all my celiac and gluten-free friends who share their meaningful stories. You are changing lives!
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To learn more about celiac disease, check out last year’s series:
A Personal Introduction to Celiac Disease
7 Tips for Celiac College Students
A List of Great Gluten-free Blogs
A Daughter’s Symptoms of Celiac and Why They Were Ignored
5 Reasons I’m Grateful for Celiac Disease
3 Tips for Adjusting to a Gluten-free Lifestyle
Did you know? 3 Things That Have to do with Celiac Disease
Celiac Series: A Book, a Podcast and an Instagram Account, Week 3
Posted: May 16, 2022 Filed under: Health, support, The farm | Tags: Celiac Awareness Month, Celiac disease, gluten free, gluten free lifestyle Leave a comment
Welcome to Week 3 of Celiac Awareness Month! This is a great time of year to expand your knowledge and add to your health toolbox. I’m excited to share three more wonderful resources that are sure to support you on your celiac journey.
Fifteen years ago, when my daughter was first diagnosed, I was facing not only the challenge of how to feed and nourish her, but also how to navigate school, holidays, family trips, summer camps and more. I shared our story in Celiac Mom to help others know they are not alone.
I’m so pleased to introduce this week’s book, podcast and Instagram account to help you on your celiac journey.
Book:
Haley’s Gluten Free Surprise or Adam’s Gluten Free Surprise by Debbie Simpson @glutenfreerespect
If your child has celiac disease, Hailey’s Gluten Free Surprise is the perfect gift for an elementary school teacher, the parent of your child’s friend or even a grandparent. This story, told in simple language with sweet illustrations, shares the dilemma most kids face who have food restrictions or allergies.
Podcast:
Be Made Whole by Pooja Chilukuri @chilukuripooja
The Be Made Whole podcast with Pooja Chilukuri connects wellness seekers with those who have knowledge. A Nutritional Therapy Practitioner, Health Coach, Wellness Educator and author, Pooja has lived her own health journey and has an abundance of wisdom delivered in a compassionate way. She has also become a dear friend and is someone I would recommend to anyone who is looking for ways to improve his or her health.
Instagram Account:
Jayde MacLean is a certified Holistic Nutritionist with formal training from the Institute of Holistic Nutrition. She healed her own gut with nutritious food and holistic living. I started following her account over a year ago, and I always appreciate the solid wellness wisdom she shares.
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Join me next week for more resources, and take a look at the following stories in last year’s series:
A Personal Introduction to Celiac Disease
7 Tips for Celiac College Students
A List of Great Gluten-free Blogs
A Daughter’s Symptoms of Celiac and Why They Were Ignored
5 Reasons I’m Grateful for Celiac Disease
3 Tips for Adjusting to a Gluten-free Lifestyle
Did you know? 3 Things That Have to do with Celiac Disease
Celiac Series: A Book, A Podcast and an Instagram Account, Week 2
Posted: May 9, 2022 Filed under: Celiac, Gluten free | Tags: Celiac Awareness Month, Celiac disease, gluten free, gluten free lifestyle Leave a commentWelcome to Week 2 of Celiac Awareness Month! I’m excited to share three more wonderful resources that will keep on giving way past the month of May.
Part of the reason why I’m so passionate about sharing celiac resources is that when my daughter was diagnosed 15 years ago at the age of 5, there was very little support. I remember being scared that I wouldn’t be able to keep her well fed and nourished. I had to learn to navigate a gluten-free lifestyle for her (and ultimately for my husband and me) through trial and error. That’s why I wrote the memoir, Celiac Mom. I didn’t want anyone else to experience the same sense of overwhelm that I did.
I’m so pleased to introduce this week’s book, podcast and Instagram account to help you on your celiac journey.
Book:
Eat Your Rice Cakes by Margaret Weiss
Margaret Weiss melds her personal journey with her background in science to create the perfect handbook to guide someone through a diagnosis that requires a major dietary lifestyle change. With insight, warmth and humor, the author embraces patients where they are, allowing room for individuality, grief, affirmation and the vision to reframe and transform their future.
Podcast:
Belinda Whelan, from Australia, has created a podcast where women with celiac disease can learn to live their best life. Belinda, a health coach, is upbeat and knowledgeable. She shares a new episode each week and covers so many important topics in short, easy-to-digest (pun intended) programs.
Instagram Account:
Carissa has celiac and is a certified Keto and Intermittent Fasting Coach. What first caught my attention about her account is that she shares a low-carb, low-sugar and whole foods lifestyle, which is important to me. But what kept me interested is that she is such a wholesome, truly kind person. Her passion for helping others shines through every post.
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Be sure to come back next week. Or visit last year’s series which includes the following articles:
A Personal Introduction to Celiac Disease
7 Tips for Celiac College Students
A List of Great Gluten-free Blogs
A Daughter’s Symptoms of Celiac and Why They Were Ignored
5 Reasons I’m Grateful for Celiac Disease
3 Tips for Adjusting to a Gluten-free Lifestyle
Did you know? 3 Things That Have to do with Celiac Disease
Celiac Series: A Book, A Podcast and an Instagram Account, Week 1
Posted: May 2, 2022 Filed under: Books, Celiac, Gluten free, The farm | Tags: Celiac Awareness Month, Celiac disease, gluten free resources, health memoir Leave a comment
May is Celiac Awareness Month, and this year is our family’s 15th year of being gluten-free! My daughter was diagnosed at the age of five, after many years of concerns and symptoms we didn’t understand. When we finally got the answer – celiac disease – it was just the beginning of a long journey towards understanding how to eat to support her health – and ultimately our family’s health. This journey led me to become an advocate for celiac awareness and to write the book, Celiac Mom.
As a former magazine and newspaper journalist, I wanted to share what I had learned as a mom, help others avoid some of the pitfalls I experienced and provide inspiration to those who are just beginning or in the midst of their own lifestyle changes. My daughter, who once had terrible stomach aches, constant fatigue, insomnia and delayed growth is now 20 years old and thriving. In honor of her and all those who have celiac disease, every Monday in May, I’ll be sharing some of my favorite resources.
Over the next month, I’d like to introduce you to some of my favorite celiac resources. Each week, I’ll share a book, a podcast and an Instagram account that you’ll definitely want to check out. There are so many wonderful advocates for celiac disease, and if we want to be heard it’s important for us to raise our voices together.
Book:
Everyone’s Got Something by Hallie Rose Katzman, Rayna Mae Katzman and Lori Akawie Katzman
This is the perfect companion for the young teen who has been diagnosed with celiac. Written by twin daughters and their mom, this slim, easy-to-read book makes the topic of celiac approachable and understandable.
Podcast:
Michael Frolichstein and Cam Weiner talk celiac disease and navigating a gluten free lifestyle on the podcast. They’re not just nice guys, they know their stuff and they’ve been “around the block” with celiac. They’ve recorded over 300 episodes!
Here is the show where Mike and Cam interview me about Celiac Mom.
Instagram Account:
@the_celiac_space
Run by Registered Dietitian Erin Heidenreich who specializes is helping people with celiac disease. The Celiac Space is “Your go-to spot for all things gut health, gluten-free and wellness!” As someone who has celiac herself, Erin’s posts are packed with relevant information, and she makes it fun and easily digestible (pun intended).
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Be sure to come back next week. Or visit last year’s series which includes the following articles:
A Personal Introduction to Celiac Disease
7 Tips for Celiac College Students
A List of Great Gluten-free Blogs
A Daughter’s Symptoms of Celiac and Why They Were Ignored
5 Reasons I’m Grateful for Celiac Disease
3 Tips for Adjusting to a Gluten-free Lifestyle
Did you know? 3 Things That Have to do with Celiac Disease
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If you, your child or someone you know has recently been diagnosed with celiac disease, you’ll want to read Celiac Mom, the story of my daughter’s diagnosis at the age of five and our family’s subsequent transition to a gluten-free lifestyle.
The book also includes:
- Two weeks of easy gluten-free recipes
- Favorite family recipes from well-loved chefs
- Helpful people, websites and products
- Gluten-free shopping lists
- Ideas for eating out safely
Order a copy here.
Hope to see you next week!
The Celiac Project Podcast: A Great Way to Learn About Celiac
Posted: June 16, 2021 Filed under: Celiac, Gluten free, Health | Tags: Celiac, Celiac disease, celiac mom, Celiac Project Podcast, gluten free Leave a commentIf you or a family member or friend have celiac disease or gluten intolerance, you’ll want to check out the Celiac Project Podcast. As Micheal Frolichstein and Cam Weiner say before each episode, they are “two guys talking gluten free.” I’ve been listening to their shows — which are about 30 minutes long — for several months now when I take my morning walk. Even though I’ve been gluten free for 14 years, I’ve learned so much about the broader celiac community through their podcast.
I was honored to be interviewed by Mike and Cam recently. Two to three times more women than men are diagnosed with celiac disease, according to Beyond Celiac, so it’s unusual to find men discussing this condition. However, Mike and Cam don’t just talk gluten free, they both have celiac and are very knowledgeable about what it takes to navigate life with this disease
Recent episodes have included interviews with Maureen Basye, the founder of the Celiac Cruise, with Dr. Dale Lee, Director of the Celiac Disease Program at Seattle Children’s Hospital, with Claire Baker, Senior Communications Director of Beyond Celiac and with the volunteers of Mend Hunger, an organization that ships gluten-free boxes to those who receive goods from food pantries. Mike and Cam also share fun shows where they compare notes on beer tasting, prognosticate about the winner of Erin Smith’s March Madness brackets about the best/worst terms to describe gluten free and describe Cam’s gluten-free Colorado snowboarding vacation.
Mike is also the director of The Celiac Project, a documentary about his own journey with celiac and his search to find answers. He does a fantastic job shining a light on the issues surrounding celiac, and he talks with a number of experts and real folks who are working to raise awareness about the disease. The documentary can be seen on Amazon Prime, and I highly recommend it!
On this week’s podcast, we talk about my memoir, Celiac Mom. We discuss how my daughter’s celiac symptoms weren’t typical, what’s important to know BEFORE you have an endoscopy and the challenges of being a noncook and sending a child with celiac to school. I also share how my daughter’s list about what was important to her in a college was very different from my list.
As a creative person who has worked in the news business and written a memoir about our family’s experience with celiac disease, it’s gratifying to connect with two people who take the job of elevating the conversation around this condition seriously. Many thanks to Mike and Cam for their hard work and their generosity of spirit! I’m honored to link arms and voices with them as we help educate the world, page by page, conversation by conversation.
Listen to the Celiac Project Podcast here.
The Celiac Series: Author Interview About Celiac Disease
Posted: May 27, 2021 Filed under: Celiac, Gluten free, Health, Writing | Tags: author interview, Books, Celiac, Celiac disease, gluten Leave a commentIn honor of Celiac Awareness Month, I’m sharing a number of posts about celiac disease. Read these to learn more about celiac and a gluten-free lifestyle.
A Personal Introduction to Celiac Disease
7 Tips for Celiac College Students
A List of Great Gluten-free Blogs
A Daughter’s Symptoms of Celiac and Why They Were Ignored
5 Reasons I’m Grateful for Celiac Disease
3 Tips for Adjusting to a Gluten-free Lifestyle
Did you know? 3 Things That Have to do with Celiac Disease
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Celiac Awareness Month is winding down, and before it ends, I want to share my Author Interview and Q&A from earlier this month. I was honored to be featured by Main Street Books on May 6th.
One of the things I hope people will realize is that I was no expert when the experience of raising a daughter with celiac was thrust upon me. It was NOT like I was thrown into the deep end of a pool and was unable to swim. But it was like having my daughter thrown into that pool on a daily basis, and I couldn’t swim. However, thankfully, there were books and websites and people who could help me. It just took time for me to discover the resources I needed and to learn how to use them.
My hope in sharing this story is to provide comfort and encouragement to others who are on this path or who are just discovering their own issues with gluten. May your journey be easier than mine and many others who went before us.
Thank you to everyone who made this event special. It was an honor and a joy to talk about my daughter’s celiac diagnosis and our family’s transition to a gluten-free lifestyle with such an engaged audience. Thank you to Dede Mitchell, who moderated the event, and to Beth Helfrich and Adah Fitzgerald of Main Street Books of Davidson. I so appreciate Main Street Books and Charlotte Writers’ Club North partnering in the sponsorship of this event.
Please visit the YouTube link here to view the hour-long program. I share three brief readings from Celiac Mom, and there are questions about celiac disease and the writing process throughout the event. I hope you enjoy it!
Fields of Grace 