Daughter Diagnosed with Celiac

 

celiac word abstract in wood type

My daughter Andi was diagnosed with Celiac Disease, an autoimmune disease, just before her 18th birthday. This diagnosis was a long-time coming. Andi had suffered from migraines since she was 9-years-old. They were so bad that she was hospitalized several times. She broke her elbow the first of three times when she was 10. She broke several other bones over the years doing things that would only cause a bruise on someone else. She suffered from joint pain since she was about 9, something we attributed to playing soccer. She was the only 14-year-old I knew who got croup several times a year. Sinus infections were a normal part of life since she was about 6-years-old. Andi’s iron and vitamin D levels were extremely low her entire life requiring her to take supplements, which didn’t seem to increase her counts. She just got used to being tired and anxious all the time. We saw neurologists, ear nose and throat doctors, allergists, orthopedics, etc… Every healthcare provider treated each symptom individually.

A little more than two years ago, the stomach issues started. She was vomiting a lot. I would take her to the doctor, she would say it’s a viral infection and Andi would barely eat because her stomach hurt. She would start to feel better so she would start eating normal again which would result in puking again. We would go back to the doctor to be told the same thing (I don’t blame them, none of us knew what to think at first). The doctor ordered x-rays and a multitude of blood tests. Other than confirming that she had low iron and vitamin D we still didn’t have answers. This vicious cycle went on for nearly six months causing Andi to miss at least 25 days of school her senior year.

 

Finally the doctor decided to test for Celiac. I was skeptical but desperate so I gave the go ahead. I thought she would have suffered stomach issues her whole life if it was Celiac. I also didn’t realize that all of the health issues she had dealt with her over the years were symptoms of this autoimmune disease. Another blood test was ordered to specifically test for Celiac, known as tTg-IgA and sure enough it was positive. In fact, her numbers were one of the highest her doctor had ever seen. Next they scheduled an endoscopy with Gastroenterology so they could confirm the Celiac diagnosis and see how much damage had been done. The diagnosis was confirmed and we were told that every time she ingests gluten her chances for stomach cancer increase.

From that day forward we started her gluten-free journey. It required a LOT of education. Gluten is a protein found in barley, rye, oats, and wheat (BROW). You would think these four ingredients would be easy to avoid but as we learned, they are in EVERYTHING. We have to read the label on every single thing we bring into our home. Gluten often acts as a glue to hold food together. Luckily we were able to meet with a nutritionist who specializes in Celiac Disease. She gave us a lot of literature and went over everything we needed to know to get started. It’s not easy but we managed (I will write about going gluten-free in the near future).

Celiac disease word cloud

After nearly two years of being gluten-free, Andi’s health has improved greatly. No more migraines, joint pain, broken bones, croup or just feeling blah all the time. And for the first time in her life, her iron and vitamin D levels are normal.

Follow the blog for future posts about having a daughter with Celiac and her gluten-free journey.

 

 

 

We’re Not Famous

I’m not famous. My children aren’t famous. Neither is my husband. In fact, there isn’t a single famous person in my family or circle of friends. But I still see all of my family members and friends as super stars. Especially my almost 13-year-old son Joey, AKA Super Joey. Joey is known for his strength and knocking Langerhans out.

Super Joey

Super Joey

Joey isn’t muscular or a big guy. In fact, he’s only 5’1 and under 75 pounds. Yet he still knocked out Langerhans, which was pretty amazing since Langerhans is vicious. I’ve gotten to know him over the last few years and he devours people, mostly kids. Nothing is off limits – he’ll go for the bones, organs and even skin, whatever he can do to take to out his victim. Sometimes even death. It takes a lot to be able to stand up to Langerhans and fight back and even more to beat him down. No, Langerhans isn’t some new trendy boys name or a nickname for a terrible bully.

Langerhans – Langerhans Cell Histiocytois – is a horrible rare cancer that my son beat. This disease, often argued by doctors is to whether it is cancer or an autoimmune disease, is ferocious. It ate Joey’s hip bone causing him to need a bone graft, spend months in a wheelchair, go through lots of physical therapy and much more. Two years later, he still deals with chronic bone pain that puts him on crutches or in a wheelchair for weeks at a time. But the good news is, the LCH is gone. The doctors told him he’s whooped it’s butt and they can’t imagine it will ever attack again. Woohoo!

Super Joey

Super Joey

You’d think we’d be celebrating everyday! And we have celebrated. We are truly ecstatic for Joey but not all of our friends have been so lucky. Our 19-year-old friend Ian Anderson, who also isn’t famous, has LCH in his pituitary gland. He’s been through chemo, surgeries and so much more. He’s probably looking at some sort of life-long treatment and/or follow up.

Princess Sophia

Princess Sophia

Our sweet 5-year-old friend Sophia Lopez, who is not famous either, has another form of Histio – Hemophagocytic Lymphohistiocytosis. This beautiful 5-year-old has spent most of her life in hospitals. She and her mom have traveled to Cincinnati Children’s Hospital from New York City to get the best care possible. They have been living at the Ronald McDonald House for a year while Sophia’s dad and brothers are back in New York. The men her life travel to Cincinnati as often as they can to see their Princess Warrior who has been through chemo, a bone marrow transplant, multiple surgeries and much much more. But that gets expensive and vacation time runs out.

We also think of our friends the Culley/Marshall family. They aren’t famous either. But their daughter Ellisyn is a hero in my eyes. Langerhans didn’t hold back at all when it attacked Ellisyn. By the time she was diagnosed with LCH, it was too late. Ellisyn lost her battle at 15 months old.

So although we are thrilled for Joey, there isn’t a day that goes by that we don’t think about this horrible disease – Histio, Langerhans Cell Histiocytosis, Hemophagocytic Lymphohistiocytosis – that has attacked Super Joey as well as some of our friends (we all met as a result of diagnosis – Histio attacks five in a million).

Most people have never heard of Histio. It doesn’t receive government funding for research, there is no sure cure and there is no known cause. We just know it sucks and can kill. I know some people might think I’m horrible for what I’m about to say but… there are MANY days I wish that a famous person or a famous person’s child would get Histio. Yes, I feel horrible for even saying it but hear me out.

Bengal Player Devon Still’s beautiful daughter Leah was diagnosed with Nueroblastoma and over $1 million was raised in an extremely short period of time. This is awesome! The money went to Cincinnati Children’s Hospital cancer research, which is fantastic. I hate that Leah has this horrible disease but it has brought tons of awareness to Nueroblastoma and childhood cancer.

Lauren Hill, the Mount Saint Joseph Basketball player with an inoperable brain turmor, became famous with the help of the media and has now raised more than $324,000 for the Cure Starts Now. It is horrible that Lauren has been stricken with this disease and she has deserved every bit of media attention she has gotten. She is truly an inspiration to all and I believe her strength and courage will help find a cure for this some day. I have followed her story from day one, cried through the ENTIRE basketball game and will be devastated when she passes. I will always remember that brave angel.

joey rareBut again, I often find myself wishing someone famous or their child would get Histio. I don’t want them to go through all the pain and anguish my friends and family have gone through. I just want that famous person to have a voice for all of us. Believe me, the Anderson, Lopez, Culley/Marshall and Holt/Stegner families have a loud voice. We have been on local media, held fundraisers and educated people but none of us our famous. We don’t have the outlet or the reach that someone famous has. We need a famous person to raise awareness for Histio, to raise funds for research, to help the families fighting this horrible disease and to encourage others to remember the angels we have lost.

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Note: Please contact me at gina5620@gmail.com to learn more about Histio or find out how you can help… You don’t have to be famous. 🙂