I am an advocate for those with Celiac Disease. I am a fighter. And part of fighting is bringing awareness and writing about Celiac Disease.
****
This is my story. Actually, this is Samuel's story.
My sweet sweet Samuel has Celiac Disease.
He was diagnosed when he was 16 months old.
He is gluten-free.
Not by choice. But, by absolute necessity. Gluten, a protein found in various grains -- such as wheat, barley, rye, and possibly oats -- destroys the lining of the intestine in an individual with Celiac Disease.
During biopsy the gastroenterologist checked various enzyme levels in Samuel's gut. A healthy level of lactase would be around 25 uM/min/gram protein. Anything under 15 is low.
Samuel was at 1.2 -- that is dangerously low.
Every single number --sucrase, maltase, palatinase -- mirrored the low numbers of lactase.
It was frightening.
He was absorbing almost nothing.
He was days away from having a port installed and being fed nutrients via an iv.
{again, this picture of Samuel 30 hours before going to the ER the first time.
It makes me cry when I see it.}
Yet, for months prior to diagnosis I was dismissed by the medical community. He was having rectal bleeding, rashes, lethargy, and at the end point was even unable to walk without stumbling. I was told he was constipated. Or that he was simply sick because he was part of a large family. Or to keep a journal longer because he just might be in a phase and not to worry. "Babies can be finicky," they'd tell me.
Samuel lost 3 pounds in 3 weeks.
Samuel was then only 21 pounds.
He lost a 1/2 pound in 2 days.
****
In an individual with Celiac Disease the villi -- which are the hairs lining your duodonem and small intestine -- became flattened. In a healthy individual they are thick, like a shag carpet, and absorb nutrients. In a Celiac patient they are like a tile floor. Nutrients slip by. Vitamins. Minerals. Protein.
The body is starving. Even though they are eating.
****
Samuel was low on vitamin d, zinc, protein, iron, potassium, and more.
Gluten was destroying his body.
In the ER the doctor was confrontational with me. Even though I walked in with a baby whose core temperature was 96.2 degrees. His body was slowing down. He was sleepy. He didn't fight when they put an iv in him. He just rested on the cot. Staring. I was told he was such a good boy -- he wasn't being good -- he was sick. He should have fought, put up a fuss when they jabbed him. He had no energy to even do that. They were going to discharge him, let him go home, with the orders for me to stop breastfeeding him as "that was giving him inadequate nutrition" and that instead I should go feed him whole grains and dairy.
That would have put him in a coma.
I found out less than 24 hours later that breastfeeding was one of the only sources of nutrition that Samuel had during those weeks prior. Any food besides breastmilk caused him tremendous pain. Yet, that couldn't sustain a 16 month old -- it helped him, saved him, but he needed more nutrition.
That was why he couldn't sleep. That was why he was hungry all the time.
Yet, the doctor was reluctant to even test for Celiac Disease. They told me he was too young. That babies get diaper rashes. That they get sleepy. The nurses pushed.
I could hear the nurses and doctors arguing. The nurses kept saying that he needs to be here.
In fact, one of the nurses came in {when the doctor was out}and grabbed my hands and told me not to leave this hospital. To stay and fight for Samuel.
And from that moment on I wouldn't leave.
They admitted him.
I met with the GI doctor. He too, was initially skeptical. They ran more tests, and an ultrasound. Samuel just slept and slept. The nurses on the floor couldn't believe how quiet he was. He was sick. Not quiet.
They all looked at me like I was just a bit paranoid.
{remember this pic? that's me determined. fighting.}
Until the lab results came back. Elevated.
Serum gliadin IgG, gliadin IgA, and more. All indicative and pointing to Celiac Disease.
Still they discharged me.
Then the next morning, at 7:20 am I get a frantic call from the GI Doctor asking if Samuel had eaten. He had. The doctor wanted to do a biopsy immediately, and was wishing we hadn't been discharged. So did I. All of a sudden Samuel's case became urgent. And I quickly lost the title of paranoid mom only to be replaced by the "mom who knew." They should listen. It shouldn't be such a fight.
We had one last day of home. One last meal of gluten for Samuel. His last supper, in a way.
He had to eat gluten that day. It was so hard for me to feed it to him when I knew it was hurting him. They needed gluten in his system for the biopsy. So he tried to eat his favorite -- spaghetti and sauce. He only managed a couple of bites before his belly started to bother him again.
Biopsy was in the morning. The doctor, who once was skeptical, was now an advocate.
Caring. Kind. Thorough.
We were going to figure this out.
As I walked into the Operating Room with my scrubs on I felt so afraid. And yet at peace. The room was full of people. I sat in this chair and just prayed, holding my Samuel, while they put him to sleep. I kissed him goodbye, smiled bravely at the surgeon, and walked out.
With tears in my eyes.
Tears of hope.
They were fighting for him now.
{after his biopsy}
****
Celiac Disease is different than an allergy to gluten. It is critical to determine if an individual actually has true Celiac Disease because even a trace amount of gluten causes tremendous damage to the intestine. The only treatment for someone with Celiac Disease is to remain completely gluten-free. This is extremely challenging as gluten is in many common foods -- salad dressings, processed foods, luncheon meats, sauces, marinades, candy, broth, cereal, medicines, make-up, playdough and more.
I cannot leave Samuel in the nursery in our church because I cannot risk him eating one goldfish cracker dropped by another child. That is how serious this is.
****
I'm going to write more of Samuel's story in the days and weeks to come. Getting the diagnosis was only the beginning as he ended up back in the hospital in Celiac Crisis, and then dealt with 6 weeks of being semi-isolated due to his compromised immune system.
Please share my story with those around you -- so that others can be aware and can fight for little ones who might have Celiac Disease. And please email me if you have any questions regarding Celiac Disease or living gluten-free. I am more than willing to respond. In fact, I want to help. To listen.
I am so grateful for all the prayers that have covered Samuel in the past two months.
