When my youngest child was born, we marveled at how healthy and happy she was. She was an extremely happy baby, and even started sleeping at six hours stretches at night by six weeks old. We completely appreciated how blessed we were.
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| Perfect baby girl |
Like my two older children, she suffered with constipation from the start. It was expected and we had glycerin suppositories already stocked when we brought her home. She didn't have terrible reflux, she didn't spit up excessively and she seemed ok.
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| Smile! |
Later, as an older baby, I noticed her belly swollen with gas quite often. I attributed this to the constipation and my pediatrician agreed. We upped her consumption of veges and fruits and started using gas medicine to help her cope.
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| Notice her bloated belly |
As a toddler, the constipation issues continued. By now, I had brought up these issues several times with the doctors. It was usually the, "blame mom on not doing enough" talk. Not enough water, wrong kind of juice, more fruits and veges, more fiber. We started fiber supplements.
When she reached grade school age, our daughter was starting to get worse. She hated fruits and most veges, because it caused more gas and pain. The doctor diagnosed her as "slow motility". I remarked on her exceptionally protruding belly, and he reassured me that it would be normal for her and she would most likely just "deal with it" as she got older. He put her on Miralax, daily.
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| If you look close, you can see her belly protruding (in the pink shirt) |
Within two years, things were getting even worse. She would cry in pain, her stools were either impacted pebbles or gassy splattery stool that she had no control over. At school, we had to bring a note asking the teachers to let her use the potty as soon as she asked. Since she had the Miralax, when she had to go...she had to go! These unexpected urgent trips were not comfortable and singled her out to the class, since everyone else had to wait until specific class times to use the restroom.
At one point, she went almost a week without defecating and we had to put her on a Miralax cleanse. That meant 12 scoops of Miralax in Gatorade over an afternoon, as we tried to liquify what was going on inside to relieve her cramping and pain. It was as pleasant as it sounds.
This past fall, she was appearing severely backed up again, so we did another cleanse. It didn't seem to help, and our daughter would frequently lie down in pain and want her tummy rubbed, only to push my hand away because the pressure caused her pain. Soon after, she also developed a bad cold that turned into pneumonia. We were fortunate it was not a severe case, but we returned for a follow-up to make sure all was well. Our regular pediatrician was not available and we had a nice doctor who agreed to see her that day. When she asked how she was doing, I replied that her cough and breathing were fine, but unfortnately all of her tummy pain was still there. The doctor perked up and asked more details about her symptoms. I held back all the gruesome details but gave a summary of her issues. I didn't really want to hear another lecture on diet and behavior modification.
To my surprise, she seemed genuinely interested. She inquired as to what testing had been done on her. I thought about that for a moment, and realized my answer was, "None".
"Well, have you ever heard of Celiac?" she asked.
I had heard of Celiac, but all the information that I thought I knew dealt with chronic diarrhea and excessive reflux or spitting up. It had never even crossed my mind. She told that it was worth running the tests andshe ordered blood work that would take a couple weeks for answers.
I came home and immediately started researching Celiac. I was shocked when I read the
symptoms from various site.
Children's symptoms can include:
- swollen belly
- pain
- constipation
- gas
The more I read about the symptoms from other sites, the angrier I became. To me, it was crystal clear that any child who had suffered as much pain and as many symptoms for as long as she had, should have been tested years before. After the anger, I felt guilty. Guilty for letting her suffer, for silently agreeing with the doctors and not demanding more and better answers for her. Regardless of what the testing said, I was going to pursue help for her. Finally, I felt relief. If it was Celiac, it was easily treatable and she could be much better very quickly. Celiac is treated by adhering to a strict gluten-free diet. That means no wheat, no buckwheat, no barely and no oats.
A few weeks later, I got a message from the office. "Blood test positive, set up appointment with GI doctor." That was the entire message. No doctor call, no counseling and no one to answer my questions. The Celiac community became my counselors and explained what to expect next. Many of them had suffered for years too and were eager to share information to help others.
The pediatric GI doctor was great. He was a relief to talk to . He suggested one more modifying diet to see if symptoms eased up, and if not he would agree to do an endoscopy to try and confirm a Celiac diagnosis. To be diagnosed, you have to have a positive blood test AND a positive biopsy showing damage to the intestines. A month later, she was worse and we scheduled the endoscopy.
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| Waking up from the endoscopy |
Trying to prepare kids for any surgical procedure is tough. Mine was nervous as any child, but she tried to be brave. We had a wonderful team work with her, and she did really good. The doctor was able to talk with me while we were still in recovery. He had to send out the samples to be examined by a pathologist for final diagnosis. He was able to see that she was suffering from chronic gastritis and damage in her esophagus caused by reflux. We also discovered that she had low iron and low vitamin D, both common with Celiac patients. He felt confident that no matter what the final biopsy said, she needed to start a gluten-free diet right away. Her response to it would be more important than any test result.
We started the gluten free diet a few days later. And yes, I mean "we". We didn't want her to feel alone and we wanted to learn the ins and outs of the diet as soon as possible, so my husband and I went gluten free as well.
The results? Within three days, she stopped needing to take Miralax! After TWO years, she was done with it after only three days. The gas pains stopped, we stopped the fiber supplements too. Within two weeks, her stomach was starting to flatten out. The protruded toddler belly that used to press against her clothes, was now flat enough to have shirts that seemed almost flowy. The best part was that now if I rubbed her belly, it didn't feel taut and it didn't hurt her anymore. Her biopsy was negative, but her response to the diet was so great, her doctor felt sure that if he couldn't offically diagnose her now, she would most certainly develop a full-blown case later.
My daughter went through years of unnecessary pain. I know now, that much of it could have been avoided if pediatricians had more knowledge of atypical Celiac symptoms in children. The diagnostic criteria is very unusual since it requires both a positive blood and biopsy test. It also requires the consumption of gluten before testing, which can be very painful for those who are either gluten sensitive or have Celiac. With rates of 1 in 133 people, many Celiac patients don't even know they have it. Celiac can also develop at any age, which surprised me since I thought it was diagnosed more often in babies and children. If your child has gastrointestinal symptoms that last over a period of time, including diarrhea, constipation, gas, fatigue, cramping or reflux, I encourage you to talk to your doctor about testing for Celiac disease. If the doctor is unconvinced, ask for a pediatric gastrointestinal doctor referral to discuss it with. Just remember to get testing first, before starting any gluten-free diet!
For finally finding some answers and more importantly, relief for my daughter, I am very thankful. If you are reading this blog entry because your child is suffering, I hope you find answers very soon.
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| Happy healthy and gluten free! |
