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My Gluten Free Story ~ Hattie’s story, A moms story to helping her celiac daughter get healthy

MY GLUTEN FREE STORY ~ Gluten Free Mama shares stories about our gluten free friends and their journeys to becoming gluten free. A Monthly Edition to our Blog.
 
 
Hattie’s Story ~ A gluten free mom, Elyse, shares her daughters story on their journey to finding out their daughter had Celiac disease and road to recovery. If you are a mom with a gluten free kiddo, you will surely relate to her story. I know for me, it reminded me of my struggles with Lexie, the Gluten Free Baby. It is so hard being a mom, and being a mom with a baby that you know doesn’t feel good and they can’t communicate why, is even harder. Elyse new something wasn’t right, despite what the doctors were telling her. Many of us, me included, have experienced similar interactions with doctors and it can be very frustrating. Luckily, doctors have become more and more educated about gluten intolerance and Celiac Disease over the last ten years.
HATTIE’S STORY
“My Daughter Hattie, was born November of 2012. My Husband and I were so over the moon to have a little girl. We already had a little boy who was 5, so to add a girl to our family was fantastic.
She was such the sweetest little darling, but I always felt deep down inside something wasn’t quite right. I had to try and put these feelings aside and try not to compare her to our son when he was a newborn. I remember saying to myself a lot, “Elyse, every child is different.” So, I just carried on, trying to make her happy.
After struggling for months with her and lack of sleep as she just was so unsettled all the time, it was time to start her on solids. I felt a “yes” moment, a “yes” this is the answer, solids will settle her down. Well, was I wrong, things got worse. She would never sleep, she refused food, wouldn’t drink her bottles and was so grumpy all the time. I decided to take her to the doctor. I needed answers, because nothing I was doing was working.
What I got from the doctor was, “She’s fine, only teething.” Teething, what, really?? I was sent home to give her Panadol and put her down for a nap. After taking her back to the doctor several times over the next few months, I was very unhappy with what these doctors were telling me or rather not telling me. I even had one doctor tell me I was an overreacting mother.
After having to move interstate for my husband’s work we noticed Hattie getting even worse. By this stage she wasn’t eating much at all, wasn’t drinking any of her bottles, she had lost a lot of weight and her belly and feet were so swollen. We couldn’t understand why.
It was Christmas 2013, when we had enough, she was limp and so lethargic. I remember just holding her in my arms the entire Christmas, like holding a rag doll. We went home early and took her to the emergency room, hoping they could give us an answer and help our baby girl.
We were told she had malnutrition. They looked at my husband and I like we didn’t feed her, like we were unfit parents and mostly me, because I was the mother. Devastation took over me. “Oh my goodness, they think it’s my fault!” After hours and hours sitting in the emergency room, Hattie getting poked and prodded by so many doctors and them all thinking it is my fault, they finally admitted Hattie onto the ward.
Hattie spent 3 days in the Canberra Hospital. Many doctors came in to poke and prod her, and still none of them had a clue what was wrong. They tried so many times to take her blood, but struggled so much, because her blood was clotting due to the malnutrition.
We were then sent to the Sydney Children’s Hospital. We were hoping they could give us answers and fix Hattie. During the three weeks we were in the Sydney Children’s Hospital, Hattie had so much blood taken, well attempts at least. Everyday they would have at least 10 failed attempts to take her blood, due to her blood clotting. Now due to not being able to get the amount of blood they needed for tests, they had to put in a central line in her jugular to try to get blood sample. She had to go under to get it done, unfortunately as she was waking up after the procedure, the tube popped out. It was a complete waste of time. My husband and I were reduced to tears. She had already gone through so much and now this was a complete fail. It was extremely hard for me as I had to hold her down when they gassed her. I cried so hard! She cried out, “Mum!”, as they were gassing her. Due to her becoming so sick, she actually stopped saying mum and dad. She stopped doing anything. Hearing her cry “Mum” was the first time I had heard her say mum for such a long time. I was a blubbering mess.
The next day they attempted to put the line in on the other side of her neck, but it was unsuccessful, so they had to put it in her groin. During the procedure, they took a biopsy of her bowel, stomach and small intestine. She also had an X-Ray done. Finally, we were making progress! This is it! We were going to get the blood drawn and then they can fix her malnutrition and work out why she was suffering.
While waiting impatiently, the Gastroenterologist came out and showed us pictures he took of her small intestines. She had said her intestines looked like she had Celiac Disease, but to be sure decided to wait for the biopsy results and the Celiac Screening test results.
So through the next few days of waiting for the results, Hattie’s central line in her groin was becoming very hard to get blood out and her leg began to swell. It had caused a blood clot in her leg, one more thing that stood in the way of helping her feel better. I wasn’t coping very well at all. Now we had to inject blood thinning needles in her leg twice a day for the next 3 months. I felt so overwhelmed and helpless. I couldn’t believe what was happening to my little girl.
Finally, the results came back!!! She had Celiac disease. For a moment, a wave of relief passed through me, but the stress of what she has gone through and still is going through, was still a very big cloud hovering over me.
 

 

Hattie was immediately put on a gluten free diet. In addition, they took her off all dairy due to her bowels and stomach being so damaged. She had to have gluten free formula fed through a feeding tube. It was a slow healing process before we could start her on solid food again.

 

As a few days went by, we were finally able to get solid food into her.  Yay!  It was a small step, but I was over the moon. She was starting to look better, she started playing with toys, something she never did before and she started laughing.  Things were looking up. We finally got to take her home, well back to the Canberra Hospital near home, where we stayed a few more days and finally we could take her HOME!!!!  What a wonderful feeling to bring her home.  Every five days we had to take a trip back to the hospital to get her little cannula she had in her leg changed, for her blood thinning needles, and for a check up.  We did this for the next three months, then finally we could stop the needles, the blot clot was gone and she was recovering from everything so well.

Hattie now is 18 months old and its been six months since she has been in the hospital.  She is better then ever.  She’s been putting on weight, growing, walking, and saying words.  She loves food again, she laughs, she is happy and healthy. Our family is so much happier and we feel blessed to have our little Hattie back.  It’s amazing.

At first, the thought of a Gluten Free diet scared me.  I felt very unsure how I was going to cook and find gluten free foods she would enjoy.  The first time I went shopping I was anxious and cried in the supermarket aisle while trying to read the labels.  I felt like a useless mum.  How was I going to do this?  Each day I got better at reading the labels and now my grocery shopping doesn’t take an extra hour.  I know what to look for.  Knowledge is awesome.  Once you have the knowledge you can make anything gluten free taste good.

I’m thankful for the amount of gluten free products that are available now.  It makes being gluten free a lot easier.  My daughter and I love going to gluten free cafés together.  Deeks Cafe in Canberra ACT is our favorite place where I don’t have to worry what she’s eating.  We can just eat and laugh together.

Aldi Supermarkets are selling a lot of gluten free foods now, and affordable too, which is great, because we are a one income family.  Gluten free foods are not always affordable, but Aldi’s stocks delicious snacks that Hattie can eat, and we can afford. Yay!

I would like to say to any mums and dads out there who are going through what we did, it’s ok, it’s NOT your FAULT! I had no idea she had Celiac disease. I did everything I thought was right, but I personally felt I failed her as a parent. I now know that I didn’t fail her and her recovery shows how hard I have worked to help her get healthy. If you feel your child is unsettled or anything like what Hattie symptoms were, consider getting tested for Celiac disease. Knowledge is awesome, and we couldn’t be happier now and healthy!”

Elyse certainly struggled trying to figure out what was wrong with her daughter, but she was determined to find answers. She didn’t give up. She persevered through a trying time, but her hard work, knowledge, and love for her daughter helped Hattie on the road to recovery.

Elyse, I commend you for not giving up, for insisting on answers, persevering through the difficult times, and doing everything it took to get your daughter healthy. Your story reminds me of this Bible verse:

James 1:12

“Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.”

May the Lord bless you and Hattie and your family! Thank you for sharing your story with us. Praise the Lord that she is happy, healthy, and thriving!

Tips and Information from Elyse.

Elyse is from Canberra, Australia. She says that although Australia doesn’t have as many choice for gluten free as the US, their selection and choices are growing and getting better everyday.

Elyse’s Favorite Restaurant for Gluten Free Meals: Deeks Cafe and Black Pepper Cafe, both in Canberra, Australia

Elyse’s Three Favorite Tips for Going Gluten Free: Research, knowledge and create! When you research, you have knowledge of what you need to look for to cook with, once you have that knowledge, the sky’s the limit. Don’t be afraid of Gluten Free, have fun with it, you are the creator.

The hardest part of being gluten free for Elyse: Not always being able to find food when out shopping with my daughter and there isnt any Gluten Free food stores around, for this reason i always have her bag loaded up with GF snacks.

The Best Part of Being Gluten Free For Elyse and Hattie: I know that my daughter is healthy and happy being Gluten Free and I cant ask for anything better then that.

Elyse’s Favorite GF Blogger in Australia: Two Silly Sisters.


Do you have a story to share? Email us at GFMrecipes@gmail.com. Include pictures, your story, your favorite gluten free tips, and your favorite gluten free restaurants or places you shop. Your story may be shared here!

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2 Comments

  1. September 1, 2014    

    This is great! I love hearing peoples stories as bad as they might be but finally knowing what is wrong with your child is such a relief! I'm sending in my little ones story next week to help educate! And hopefully help others!

  2. Anonymous
    August 31, 2014    

    I a very good friend of Elyse's and i couldn't imagine what she went through and she was so far away from her family and her friends that she didn't have a lot of people to lean on. We are so proud of you and Miss Hattie for everything you've managed to overcome and we are so lucky to have such beautiful people in our lives. Even if the GF pasta I made Hattie was a disaster – she

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