THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Diabetes * Celiac Stories

Lord, thank you for these little fingers. The battle scars are hard to spot, but without them I wouldn’t have these precious hands to hold.

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Lord, thank you for this little smile. Life hurts sometimes. This little smile is a quick reminder that life is good...even when it’s hard.
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Lord, thank you for this strong courage. When it feels like I can’t face another day, her courage motivates me to keep fighting.
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It was a Monday. She wore a little purple dress with a little purple bow in her hair. She was barely 2 years old and I knew something was wrong.

On the way home from work the day before, I stopped into the local ER and asked for a U-bag. Sugar was still in diapers and I knew they would need to collect a urine sample when I brought her to the office the following day.

Her appointment wasn’t until noon, but I decided to take her in early. We just showed up…I didn’t care if the office was upset about it.  I walked in carrying her in my arms. She was so weak. Breathing fast. Pale. Mostly asleep, but waking periodically and moaning that her tummy hurt.

In my heart, I knew what was wrong, but I didn’t want to accept it. I wanted to put off hearing the truth – I didn’t know how to face reality.

There was about 250cc of urine in that bag. But I hadn’t given her anything to drink recently. My heart sunk as I struggled to accept what was happening to my baby.

I’ll never forget the look on her doctor’s face. This pediatrician was our neighbor – and I worked with her professionally as a RN in the hospital setting.

“I have something very difficult to tell you.”
“She has diabetes doesn’t she.”
“Yes and she’s very sick. She’s in DKA and I need to call 911.”

The rest is a whirlwind. I felt suspended in time – all of the sudden the paramedics were there poking her finger for the first time.

HI – I knew what that meant. Her blood sugar was over 500.

Spice had been with us for her summer visit....she was 8 at the time.  She rode in the front of the ambulance.  In the back, I held Sugar's arm while the paramedic stuck her 3 times for an IV. She barely winced.

This is bad…why had I ignored these symptoms for so long? Why didn’t I just take her to the office (AGAIN!!!) when she kept saturating through her diapers? Why did I care if they thought I was an over reactive 1st time mother? They blew me off twice, but why didn't I make them listen?

At the ER, the beds were all full. The ER doctor began shouting at the staff and demanding they put us in “ROOM 4”. I had been an ER nurse for several years. I know a panicked ER doctor when I see one.  But, on that day, I was a mom first.  A very scared mom who knew too much....yet nothing at the same time. 

I told him I didn’t care – that I would just stand there and hold her in the hallway. While they were getting the room cleared, they came and drew an arterial blood sample right there …they put her on oxygen right there…a portable monitor right there…called for a stat insulin IV drip right there – while I held her, standing in the hallway.

And then ROOM 4 was ready.

Wait. What is that? The Broselow Cart?

It was the pediatric resuscitation room. Monitors. More IV’s. More lab draws.  She was barely conscious.

Is this really happening? Oh, Wendy. This is bad. I struggled to catch my breath as I stared at the reality of panic that surrounded us.

My mother arrived. I called her from the back of the ambulance on our way to the hospital.  She was at a funeral. She really couldn’t hear me because of the sirens, but she heard enough to know which hospital to go to.

Mr. Rose arrived. He had been out of town fixing a helicopter several hours from home. They flew him back as fast as they could and dropped him off at the door of his hangar.

No PICU beds were available at the facility this ER was contracted with.

We waited.

And waited.

Mr. Rose needed to take Spice home to get things situated for her return trip the following morning.  With tears in his eyes, he kissed Sugar good-bye.

She remained lethargic. Her eyes swollen shut. Cerebral edema. It would take until the following morning before we knew if she would survive with her eyesight.

Eventually I called a different facility and asked if there were any PICU beds available.  Thirty minutes later she was being loaded into a helicopter. They let me go with her to the heli-pad and then I had to say good-bye.

My mother and I headed to her truck.

And then I stopped.

The helicopter began winding. It got louder and louder.

My baby is in there. But I can still get to her if something happens. She’s just up that little grassy hill and I can be there if she needs me.

The helicopter began to lift off.

I can still get to her.

Higher.

If I had to jump, I could reach the helicopter. She’s still within my reach.

Higher.

Higher.

My knees buckled, and I felt myself fall.

She’s gone. The helicopter is too high – it’s leaving too fast. I can’t get to her now. Is she calling for me? What if I never see her alive again…

My mother and I departed into rush hour traffic to make the drive over the Woodrow Wilson Bridge (during the construction project) into Virginia. Along the way, my cell phone rang.

Mrs. Rose, I’m the doctor taking care of your daughter. I wanted to let you know that she arrived safely and we’re taking very good care of her. She’s very sick and we have alot to talk about when you get here. Please drive safely and we will call you if anything changes. By the way, she has the most beautiful head of curls. We love her purple bow.”

At that moment, I knew he was talking to me about the right child. Later that night, the doctor told me that she couldn’t have waited another minute for help.

You would have put her to bed tonight, and she would have been gone by morning.”

On 7/25/05, we set off on this journey.

This journey called Type 1 Diabetes.

Sugar - Type 1 Diabetes 7/05, Celiac Disease 12/08
This picture was taken 1 week prior to Sugar's diabetes diagnosis. We were on vacation in Williamsburg, VA. This is the same little purple dress -- and the little purple bow -- she wore that fateful day.

{Sidenote:  Following her dx, we had to move across country in order to maintain health insurance.}





OUR CELIAC DIAGNOSES



She had symptoms from the time she was 7 months old and started picking up Cheerios from her high chair tray.



Random diarrhea.  Tummy aches.  Little to no weight gain between 18 months and 2 years of age. (Though I should add that this is the same time frame her diabetes symptoms began.)



I talked to the doctor about her symptoms repeatedly.



“She’s still breastfeeding.”  That seemed to be the only response I could get.  She was an avid nurser until she was 2...during that 6 month period when she was hardly putting on any weight, she was nursing much more frequently.  It was like having a newborn all over.  (She weaned 3 weeks prior to her T1 dx.)



I was several weeks pregnant with Baby #2 when I decided to force her to wean, hoping it would alleviate the bothersome GI symptoms that seemed relentless.  Afterall, breastfeeding seemed to be the only factor anyone could attribute her symptoms to.



A few weeks later, she was diagnosed with Type 1 Diabetes.  (Even though I know it has nothing to do with it, I felt really guilty for forcing her to wean.)   During her hospitalization following her diabetes diagnosis, I voiced my concerns about her GI symptoms.  The endocrinologist decided to draw a celiac screening.



NEGATIVE.



Off we went.  Into the winding, unpredictable streets of raising a child with diabetes.  It was all consuming, to say the least.  Among the many variables, we were dealing with the imminent possibility that we could lose our health insurance when my maternity leave began.



On December 14, Jason was offered a position that would provide secure medical benefits for our family.  Later that day, I went into labor.  After being discharged from the hospital with our newest addition, I came home and worked on packing the house to get ready for a move across country.



The move.



Diabetes.



The news that a surprise baby would be joining our family.



Suffice to say that I just assumed this is how Sugar’s life would be.  She would always have bothersome GI symptoms and no one would ever listen to me when I tried to find answers.



Soon the headaches started.  Leg pains.  Worsening abdominal pain.



We had 3 ER visits for those symptoms in one year because we just didn’t know what else to do.



Stomach virus.  Sinus infection.  Growing.  It could all be explained, but I knew something else was wrong.


I took her to a GI doctor.  More of the same.  Excuses.  Diabetes.  Whatever.



She had a Celiac panel drawn 4 times in the first 5 years of her life.  All of them were negative.



Then she started kindergarten in the Fall of 2008.  Her symptoms went from bad to worse.  By the time her annual diabetes labs were due in November, she was having at least one episode of horrible diarrhea every day.  Her color looked poor.  She had dark circles under her eyes.  Her skin was dry.  Her hair was dry.  She would lay on the floor, curled into a ball screaming with abdominal pain.



November 2008….positive celiac panel.


December 2008…confirmed via endoscopic biopsy



She stopped gluten cold turkey and her symptoms improved within 2 days.  They were GONE within a week.  Symptoms that had plagued her for her entire little life….GONE!



Six months later she had a repeat endoscopy that revealed NO sign of celiac.  Her labs have been normal ever since.



Along the way, we decided to have the other members of our family tested, because there’s a 20% chance of a second 1st degree family member being affected.  Everyone was negative.



Except me.



I didn’t have any symptoms.  NOTHING.  NO CLASSIC SYMPTOMS AT ALL.  That being said, both my mother and my grandmother suffered from debilitating symptoms for as long as I had known them.  They both had a longstanding history of vague, undiagnosed GI issues.  (After my diagnosis, they both began a gluten free diet and report an incredible response.)



Anyway, my labs were glaringly positive.  An endoscopic biopsy showed “near 100% villous atrophy”.  I was also found to have anemia, which can be a complication of long term untreated Celiac Disease.



I stopped gluten as prescribed.



And nothing has changed, except I’ve had quite a battle with my weight.  I guess I’m absorbing food now? 



Sugar continues to do fantastic and we’ve managed to make gluten free eating a normal part of our lives.



I’ve cheated a time or two – mainly out of curiosity to see if I will develop symptoms….and I really can’t say that I’ve noticed much, if anything, happen at all.  


My celiac labs are back to normal now.  The gluten free diet appears to be healing the internal damage that years of gluten laden food had inconspicuously caused.


They keep telling me that I’m going to wake up one day feeling like a new woman….just so you know….I’m still waiting for that day!

 

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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.