​The man, the myth, the legend 

You may not know Paige”s father, he is methodical, reserved, a man of few words and some say scary.  But behind the iron wall he is funny, sensitive and protective. Listen, he has 3 daughters  need I say more? 


When Paige was diagnosed with Celiac he had no idea what to do because he eats whatever he wants whenever he wants and has never had to worry about what is in the food or how it is prepared.  He dedicated time to come to every appointment, read every article and ask a million questions to understand how to keep Paige healthy.  You couldn’t come in our house without being handed a wipe to clean your hands. At family events he made sure no one touched her food. And when guests left our house he wiped down every door handle and counter. At restaurants he wasn’t shy to ask to speak with the manager when we were not confident in the waitress or waiters knowledge of Celiac. It didn’t matter who it was - he always made it clear our focus is on keeping Paige safe from cross-contamination. 
These are just a few of the things he has done for the past 19 years and continues to do to protect her.  

Dear princess P,
When we first met I truly had no idea how much you would change my life. What started off as a silly excuse to skip school soon became a story of how I met my best friend. While we were young at 18 and 16 I knew we would create a bond that would last forever. Paige and I spent many days together in lacrosse, getting food (specifically chipotle), and spent endless hours creating crazy memories that we will remember forever.

One memory I’ll never forget is the day I thought I lost Paige forever. We had been best-friends for over 5 years now but a couple years into our friendship I’ll never forget when her disease scared me. Paige and I spent many late nights and weekends together and one night we chose to treat ourselves to hibachi dinner for the experience and atmosphere. Later that night I would learn the severe effects of Celiac and just what it does to a person you care about.

Paige was extra careful to make sure her food and drinks were prepared safe and she double checked when the food was served but, as I’m sure many of you know, Celiac is never taken as seriously as it should be. One way or another, she was served gluten and our night would take a different route. Paige spent all night over the toilet and ended up in the ER that morning. I truly have never been more horrified. While I must admit I have had my share of teasing Paige… “What's for breakfast P cardboard?” However, When you see something like this first hand it puts so much into perspective.. 

While I have seen paige hit many obstacles over the last 5 years of our friendship, I have also seen her take every single challenge head on. The perseverance and determination paige has is something that I admire and love the most about her. While I may never fully understand celiac or the affects it truly has on your life paige has shown me although it is a disease there is still so much happiness to be made out of it. Whether it’s spending days with friends creating new recipes or starting a blog to help people like her. paige is determined to life a long happy life and celiac has nothing on her ❤️

​I still have so much to learn from you and I’m so excited to see where this journey takes you! 

​P,
You have changed my life in ways I could never describe. For the past six years, you have been my best friend, and I know our bond will last a lifetime. Paige's resilience amazes me daily; she is one of the strongest people I know. She is adored by every person that crosses her path. From the moment I met her, we instantly clicked, and I knew she would become like a sister to me. Celiac is not a preference or an allergy; it is a disease. Paige has educated me & my family about celiac; at every family dinner, birthday, cookout, or just making lunch at the house, there is always a gluten-free option for Paige. We are so cautious about the pans we use, the silverware, and the plates. Ensuring there's no cross-contamination is a crucial part of making meals every day. Most people don't know you can only cook gluten-free meals on a regular grill if wrapped in tin foil, and it is never guaranteed safe to consume. Cross-contamination is so dangerous for those with Celiac disease. If the tiniest bit of gluten is consumed, the sickness that comes after is unbearable. Paige made this blog to educate & help others with celiac and talk about eating disorders and unhealthy relationships with food. Shortly after I met Paige, I was diagnosed with anorexia nervosa, and at the lowest point of my life, Paige not only helped me out of the hole that I was in, but she crawled down with me and stayed until I was myself again. All while struggling with an unhealthy relationship with food herself. We would send each other recipes and daily affirmation texts that no matter how bad things may seem, we will always have each other. And I am eternally grateful for that. Tough times don't last; tough people do. 
Paige, you are the most beautiful, kind, selfless, and brilliant women I have ever met. You deserve all the love in the world. There is no doubt in my mind that you have saved my life. I love you & I am so, SO proud of you. 
To hell n back, 
 KoKo 

Oh by the way, Paige is not an only child…

Yes the journey has been challenging for Paige and will always be but she is not alone.  She has 2 very important people in her life that need to be mentioned, her sisters. 

Brooke was 2 1/2 when Paige was born- her built in best friend, her baby doll, and at times her worst nightmare but Brooke adored her and did everything for her, even talked for her 🤣.  Imagine having this little human completely change your life and all the foods  you loved to eat whenever you wanted to! She didn’t understand why and we were too stressed to be able to patiently explain it. All she heard was no, because Paige can’t eat it. In her little mind it was all Paige’s fault. 

We did our best to try and allow for her favorite foods to be available but that came with washing hands,  not touching Paige and not making Paige   jealous for not being able to eat it. Yes at times she would tease her with foods or threaten to make her eat them but that was few and far. She has grown to be knowledgeable and a force to be reckoned with if you mess with Paige or her GF lifestyle. She is always just a quick call or text away to help. Todd and I greatly appreciate her for this. 

And then came Avery, 6 years later, after things settled and we were able to manage the GF lifestyle easier. Avery has not known anything but Gluten Free. She has grown up with it and learned from a very young age what to do to keep Paige safe. But she knew it was different and wanted to know why she had to eat what Paige eats. Why it was always “Paige has Celiac “ so we can’t have it. 

Over time she saw how Paige would get sick from cross contamination and it angered her. She has grown up as her little protector (even though she’s taller than Paige). She makes sure when friends come over they do not “gluten” the house. She tells me when she sees knew Gf foods in the stores and always says let’s get it for Paige!

So thank you to you both for your patience and understanding. I know it wasn’t easy but you both are amazing sisters- dad and I are very appreciative and proud of you. 

​Part One: When your child is sick and you don’t know why…

My pregnancy with Paige was pretty easy, no real issues other than the normal morning sickness. I had a craving for green apples, which she always loved! It was at around 8 weeks that things changed. I tried to transition her to formula since I was going back to work. She has a very difficult time and refused to eat - she was reverse feeding and we were both exhausted . She cried all the time. The only thing that would soothe her was when we bounced on a stability ball with her in our arms for hours. She was considered colicky by her pediatrician. Over the next year she got worse. Her belly was distended and she had severe gastrointestinal issues- so her pediatrician put her on a whole wheat diet, she plummeted physically and emotionally, her doctor had no idea what to do.  

At the suggestion of our daycare provider (thank you Gerry) we took her to Childrens Hospital in Boston. It took them less than an hour to diagnose her with Celiac Disease. Of course they did all the necessary tests to confirm but they knew right away by her appearance and symptoms. She was 2 years old and she told us she felt sick“belly hurt” over and over. Her nose ran constantly “nose runnin” and she was hot “soakin hot”. ( our favorite Paigisms). 
The Specialist said it’s good news ! We know what she has and how to treat it - she follows a STRICT Gluten Free diet! No medications,  no surgeries, easy right? 

Not back in 2004 it wasn’t. The food options were sparse and those they had were not good,  I would describe it as eating cardboard. And if that wasn’t enough, the cost of GF foods were outrageous- a $6 loaf of bread, really it costs that much more to make? Or are companies just taking advantage of the GF population. 

Dear Paige,


You were the cutest baby.  Blonde curls, fair skin, and you were very small with a "Big Buddha Belly".  So when your nose and eyes were always running and you were crying a lot we would feed you because that is usually what babies want when they are so upset.  We would feed you everything!!  Little did any of our family know at the time that what we were giving you to eat was hurting you. 


Once your parents got your Celiac diagnosis everyone had to become educated on not only what you could and could not eat but also how your food needed to be cooked in separate pots and pans, and how our homes had to be sanitized when you came to visit because even having tiny crumbs around could make you sick.


Through your journey, I have been informed and educated about Celiac. I had no idea that there were so many foods you could not eat.  I remember always reading the labels and checking with your mom before I gave you anything.  Then as you got older I was able to ask you.  Once I found out all of the restaurants you could eat at, especially Dairy Queen, I was amazed and so happy you could enjoy your life.
I am so proud of you. Now you are taking your life and educating others and continuing to inspire and educate me. You are such an inspiration and have so much more to share.  


I love you,
Dana

Dear All,

My Paigie is one of the closest people to me in my life. Growing up without sisters, the closest thing I had were my cousins, Paige being one of them. Being only a few years older than her, I don’t remember much from when she was a baby before getting diagnosed with Celiac Disease. For our whole lives, dealing with this auto-immune deficiency has become the normal but to say it was an adjustment would be an understatement. I grew up in a home where, thankfully, none of us had Celiac. We also lived a few hours from Paige, so when we were able to spend time with them it was definitely special, but the way we would go about most of our daily, normal routines would change. From wiping down purses, bags, handles, car doors, etc with Clorox wipes every time we showed up to her house (or vice versa), to washing my hands and mouth before even greeting her, just to be safe that I wasn’t carrying any gluten on me before hugging/kissing her hello. We couldn’t share bags of chips, drinks, or any snacks for that matter. And trust me- she always had good snacks that I wanted. So it was hard to be able to hang out with her and do normal things without constantly being cautious that I wouldn’t get her sick. Holidays she would have her own meals cooked for her in her own pots and pans, and was unable to enjoy the homemade meals we all could. I’d feel so bad for her. I also know how much effort my family would put into making her feel as normal as possible. Paige was the first person I knew or heard of with Celiac, getting diagnosed almost 20 years ago. In ways, having a “gluten free diet” becoming “popular” has been good, as well as detrimental. The food variety has expanded tremendously since the beginning when all I can remember is how bad her special bread tasted. But I also think people choosing this as a lifestyle and glamorizing gluten free diets is a bit tone deaf to those who suffer as badly as Paige has her whole life. I hope one day Paige will be able to live a life where she won’t have to worry if a spoon she uses that previously touched gluten is going to send her to the hospital. I think what she has done with this blog and spreading awareness throughout her college community has been so incredible, and I know she will continue to accomplish so much and help so many people. My hope as her cousin, best friend, and supporter, is that I can help advocate so she is able to reach her goals and get the message across. I love you my P, you are so awesome, strong, and the coolest person I know and I’m always here for you! I am so proud of you and I know you’re going to do amazing things!

Love, 
​Morgie 

Dear Paige,

I think i have benefited from you being diagnosed in many ways. I have learned so many things just from you. At work, when someone has an allergy, I make sure to take extra precautions. I do this because I know how much pain you go through when you ingest the thing you are most allergic to. I also learned how to clean very very well. It has affected me in many ways because the pain that you go through is unbearable. At home we have separate sides of the freezer for wheat, separate part in our cabinet, separate sides to the toaster and so much more. I think people who don’t have siblings or relatives with Celiac does not understand how much precaution they have to take. I am so grateful for this for many ways. I also believe that when people say gluten free food tastes different it really doesn’t they just want to be rude for no reason.

Love,
​- Avery