Babies Can Have Celiac
For Spencer, celiac symptoms began in the form of upper respiratory issues and pneumonia. He was a very sick baby before his family learned that he needed to be gluten free.
When sharing stories about the trials of getting a proper diagnosis, the stories I find the hardest to share are those about kids. When it comes to babies, toddlers, and all children with celiac, my mama heart strings are tugged. But I also find these stories so very important to share. I want everyone to recognize the many signs and symptoms that could be celiac disease in disguise.
Originally shared in May, 2013.
Happy And Healthy -- Until Solid Foods Were Introduced
Pneumonia, Asthma, Respiratory Infections
As written by Spencer’s mom, Chrystal:
“This is Spencer, 6 years old. He was the chubbiest, happiest baby until he started to eat solid foods, around 9 months old. He would eat his baby foods and scream all night. We went to doctors and ERs and everyone told me he was fine. I was a new mom. He would break out in hives from head to toe and was admitted to the hospital numerous times because his eyes and mouth would swell up so bad.
“The more food he ate, the sicker he got. He was coming down with pneumonia and upper respiratory infections all year around. He has asthma but the doctors could not explain why his lungs were so weak. He began to lose weight. By 14 months my plump little chubby baby had a distended tummy and was so skinny. He had constant diarrhea and screaming fits for no reason. I felt helpless.
“Finally, at yet another doctor appt, his weight was down to 14lb at 14 months old. He was admitted again to the hospital. He would cry when we tried to feed him food. The doctor suggested going back to baby food. It worked. As long as I stayed away from anything chunky, he would eat it and seemed fine, which was the plain veggies and meats. He would not eat the fruits.
“Well of course, by 16 months I was terrified; his weight was still too low and he looked sick. Finally, I started making phone calls and fighting with doctors to find out what was wrong with my child because it was not normal.”
And Almost A Year After Symptoms Began -- An Answer!
“After months of testing and hospital admissions, by 18 months, we had a diagnosis, Celiac Disease, which I had no clue about. I had never heard of it, even after years of working in hospitals myself. So we were thrown into a world of the unknown. I was devastated to feel like my child would never have a life he deserved. So he and I went gluten free. It was SO hard for me!
“He began to gain weight and loved food again! The screaming at night, holding his tummy, stopped. The hives stopped and he felt better and he slowly put weight on. It was a long road but I am thankful they finally found out what was causing him to be so sick.”
A Mom's Pain
(Before diagnosis) “I feared he would die and no one would listen to me that he was inconsolable in pain. He was 10-months-old and crying, bent over in pain, and they didn’t believe me. It was horrible to be so helpless and have doctors tell me over and over nothing was wrong with him, that he had viruses and “toddler diarrhea” from putting stuff in his mouth, he was teething, he was gassy, the hives were viral! I was over reacting. It was absurd.
“Spencer has Aspergers as well, so life is complicated for him at times. He’s extremely smart and high on the spectrum, so I am very thankful for that. He does often wish he were like other kids and could just eat whatever he wanted, but he knows when he eats gluten he has what he calls brain fog. He can’t think clearly and his stomach hurts for days, sometimes weeks, and his mood is awful.
“He has fits when he feels something isn’t fair or if plans change, but I am noticing, as he gets older, it’s a little better, and at times he’s flexible. But he has very rigid, concrete thinking when you make plans or when it comes to his schedules. This helps with his Celiac though. He even questions me if it’s gluten free (if its a new food), LOL. Its all he has ever known, basically. He will tell people, “You have to wash your hands, you touched gluten, you’ll contaminate me!” And, “I can’t eat that, it has gluten.” Now that he can read, he reads everything he can get his hands on in the store just to check if its gluten free.”
Mom continued. . .
“He understands he’s not the only one with celiac because he used to say he was the only one in the world. He would actually tell me at 4-years-old, “Mommy you’re just saying other people have celiac to make me feel better!”
He knows now he’s not the only one. We have met a few people with Celiac, so its been helpful. He has all the special treats he wants that match what others have, so he’s accepted it and is okay with being different as long as he’s what he calls “still the same.” Having the same kinds of foods and goodies is important to children.”
“So that’s Spencer’s story! He is now healthy and doing great. His lungs were damaged due to numerous pneumonias but he only had it 3x last year, so that’s an awesome improvement. He is a trooper and a fighter! The love of my life!”