All in the Celiac Family

On this last day of Celiac Awareness Month, I want to share my family story. I was asked by the NFCA to share this story as a part of their Fuel the Family campaign. Since my sister and I both have Celiac, I was thrilled with the opportunity to write our stories! This was originally posted on the NFCA website a few weeks ago, but I wanted to share our story with my dear readers in honor of an exciting month of spreading Celiac awareness.

Family Story: Erin Smith, Gluten-Free Fun

Interview with a Silly Yak

Hi. I am Erin Smith, author of Gluten-Free Fun and Gluten-Free Globetrotter. I am also the lead organizer of the NYC Celiac Meetup group. I was diagnosed with celiac disease in 1981. I’ve been eating gluten-free almost my entire life so I can’t really remember life with gluten. Throughout my life, and in my gluten-free world, my sister Jessica Smith White has always been one of my biggest and best supporters. I was thrilled when the National Foundation for Celiac Awareness (NFCA) asked me to share my story for the “Fuel the Family” blogger campaign because my sister also has celiac disease. Jessica was diagnosed as an adult so we both have really different experiences of growing up and living with celiac. I thought it would be fun to interview my sister for this series to see what it was like living with a ”silly yak," yak for short, for all of those years. Yes, this is what she always called me. We have a silly sense of humor in my family and if you don’t get a nickname, you aren’t one of us!

ES: Do you have any early recollection of me being gluten-free growing up?

JW: I do have some memories of you eating your “special bread,” though I can’t recall at what age these memories began for me. I remember your big brown boxes of Ener-G Foods bread arriving every so often and mom cutting open the box.  

ES: Back in the 1980s, Ener-G Food was the only gluten-free bread for sale. I still eat it today! It’s an acquired taste.

JW: I remember we partnered up and shared parts of meals that you were unable to eat and I didn’t like.  I became a vegetarian when I was 11 ½, so I remember eating the buns of your hotdogs at the beach.  In retrospect, you weren’t a good celiac and I wasn’t a good vegetarian. By this I mean, you shouldn’t have eaten anything that touched gluten and I shouldn’t have eaten something that had an animal by-product served in it.  We were young and naïve, huh? 

ES: True story! I didn’t know the words “cross-contamination” back then and made a lot of mistakes. I even ate cheese off pizza. GASP!  Neither of us would EVER do that now!

ES: Do you remember what it was like to grow up with a sister who ate differently? 

JW: I believe I was only a few months old when you were officially diagnosed with celiac, so your gluten-free foods never seemed “different” to me.  They were, simply, your food items.  I don’t remember giving it much thought as a kid.  

ES: Yes, you were only about 10 months old when I was diagnosed so you don’t know me any other way but gluten-free.

JW: It is similar to my kids.  Anna and Emma (my twins) were switched to a gluten-free diet before they were 2 years old and Joseph has never eaten gluten.  I think if a child grows up with specific dietary restrictions, it just becomes normal to him/her.  It is only when others point out that what they are eating is “different” that potential problems can arise or stigmas can be unnecessarily created.   

ES: Do any specific events or eating habits stick out in your mind?

JW: I don’t have any specific memories that really stick out.  Since our birthdays are so close together, I remember that we often shared a cake and it was something that both you and I could eat, which I think is the fairest route to go.  What I do, remember, however, is that Mom had to be sure to plan ahead when we were traveling, or that you had to bring gluten-free food when we went to summer camp.  There were very few choices of gluten-free foods when we were children.  It was very different than it is today.  You can walk into many supermarkets and you can find some sort of pre-packaged food, clearly labeled “gluten-free.”  That was certainly not the case 20-30 years ago.  

ES: You are so right. Mom continued to mail order for most of my food as I grew up and I ate a lot of rice cakes and puffed rice in the 1980s. 

JW: Planning ahead was a must.  This still is the case today, but not to the same extent, in my opinion, when an individual has to avoid gluten.  Knowledge and know-how are the most important things when dealing with any food allergies, intolerances or sensitivities.  

ES: What lead to your celiac diagnosis?  

JW: I have had stomach problems for many years.  I always credited it to being lactose intolerant, but still choosing to eat dairy products.  When I removed dairy, I felt better, when I reintroduced it, I felt worse.  Within a year of the births of the girls, I began having chronic stomach problems, even when I was not eating dairy. I spoke with one of my doctors about my symptoms and he suggested I see a gastroenterologist (GI) regarding the symptoms I was experiencing.  At my initial appointment with the GI doctor, I told him about the chronic pain I was experiencing, as well as my family history, specifically about you living with celiac for close to 30 years at that point.  He immediately wanted me to get blood work done, as well as schedule an endoscopy and a colonoscopy.  Although my blood work came back positive, he wanted me to have the other procedures done to make sure there wasn’t anything going on inside my body. I knew they were necessary in order to get answers to why I had been feeling so sick.  I think if you did not have celiac, I would not have been so quick to get these tests done. I probably would have put them off and continued to feel crappy, especially because I had twin 15-month-old babies that I needed to care for.  But, since I was well aware that celiac can run in families, I knew I had to be tested.  

ES: Looking back, I wonder if you always had celiac. There were no blood tests in the 1980s and our parents never had you tested through endoscopy. I know you went vegetarian in middle school for ethical reasons but I do remember you declaring lactose intolerance at an early age too. You also craved those Long Island bagels more than anyone I know. Maybe you were craving what you really couldn’t have in preparation for a gluten-free adulthood?!

ES: How was it transitioning to a gluten-free diet as an adult?

JW: I found it to be quite easy, but I credit so much of this to you.  I was very familiar with gluten-free lifestyles when I was diagnosed at 28.  I was surrounded by it my entire life, so it wasn’t foreign to me, as it may be to others who are diagnosed with celiac or a food intolerance.  Additionally, because gluten-free foods are so much more readily available now, it made shopping much easier.  I knew I was going to miss my bagels, gluten-rich baked goods, and pasta but I also knew I wanted to feel better.  I was so tired of feeling so awful and knew that I had to make the necessary changes in my diet in order to get onto the path of healthier living. 

ES: I am glad I could help you through your transition. Although it was a major life change for you, you handled it like a champ and knew that eating gluten-free would make you feel better. Although I was sad about your diagnosis, I felt even closer to you as a sister who now shared my disease. I wasn’t alone in this celiac life anymore.

ES: What was the hardest thing after your diagnosis? 

TW: Honestly, it wasn’t the removal of gluten that I found to be hardest, it was the other food intolerances and sensitivities that I became aware of after my official diagnosis. I was aware of my dairy intolerance before I was diagnosed with celiac, but I, too often, continued to consume dairy and paid for it after the fact.  Due to other sensitivities, my family has learned to cope without foods like corn and rice in our diets. We have become accustomed to baking with flours that are more nutrient dense and healthier than rice and corn flours.  Again, I credit the relative easiness of the removal of gluten from my life to you as well as the wide range or gluten-free products that are now available on the food market.  

ES:  I like that you have gotten more adventurous in the kitchen as you have become more comfortable living with celiac disease and eating gluten-free. You have introduced me to some new recipes and cooking styles, like using a slow cooker.

ES: How is it to have gluten-free expert and community leader for your sister?

JW: I am so proud of all the work and research you do.  You give people confidence that they can be successful on gluten-free diets. They can still go out to eat, travel, etc. Some people think the diagnosis is a death sentence and it is so not.  For me, it was a huge awakening that I now had to clean up my diet.  I had to break the habit of eating processed and packaged foods in order to live a healthier life. Believe me, I don’t want to have to prepare so many of our meals from scratch, but when there are so many other food intolerances and sensitivities involved, it really is a must in order to achieve healthier living.  

ES: Although a diagnosis of celiac disease is never easy, I am so happy I could be there to help you on your journey. I hope through my blogs, Meetup group, and even through education of our family I can help lead to other diagnoses in the future. I also love that I am no longer the sole gluten-free person at the family table. There’s strength in numbers and you are a wonderful person to have on my gluten-free side! I love you my little Silly Yak! 

About Erin Smith

Erin Smith has been writing her gluten-free lifestyle blog  Gluten-Free Fun  since 2007. In 2011, she launched  Gluten-Free Globetrotter, a website that encourages those with celiac disease to travel the world and not be scared about eating gluten-free domestically and abroad. Erin is the lead organizer of the NYC Celiac Disease Meetup group, a social community that has grown to over 1,650 members in the eight years she has been organizing the group. 

About Jessica Smith White

Jessica Smith White is a former high school social studies teacher turned stay-at-home mom. Jessica has been living with celiac disease for almost five years now. Her twin 5-year-old girls are gluten-free as is her 2 ½ year old son. Jessica keeps busy by caring for Erin’s favorite nieces and nephew, cooking gluten-free meals for five, gardening in her backyard, and taking care of a menagerie of animals at her Connecticut home.