My friend shared this eye opening post and I knew that it could potentially help many others who aren’t recognizing the symptoms of Celiac . Please take the time to read and share. 

Are you a parent with a child who is a little quirky or seems a bit different then his or her peers? Maybe they have certain sensitivities to things that other children don’t or maybe they don’t participate in all of the activities their friends or classmates do. Do they give you a hard time about little things that you think they should just do because they are a kid and it shouldn’t be a big deal? Do they show an unusual amount of anxiety for a child their age? Maybe they become overwhelmed easily or have meltdowns that seem more extreme then other children. I used to have a child like this, but then I found out he had Celiac Disease and everything changed…for the better! 

 In honor of Celiac Awareness Month, this is our story: We found out four years ago this month that our oldest son, Kieran, had Celiac Disease. He had just turned 6. The reason that we had him tested for it to begin with was because of how small he was for his age. At the same time we had also tested him for growth hormone deficiency, which it turned out, he also had. Because of the dual diagnosis and my own tendency to do things holistically, my husband Bob and I decided to forgo the growth hormones and see how Kieran did on the gluten free diet. (I’ll come back to this later in the story). Other then some of the behavioral symptoms that I had mentioned at the beginning, there were several physical factors that pointed to Celiac Disease, it just took us awhile to figure out that having gluten in his diet was actually causing them. Kieran was a big baby and really was not sick much before 18 months. He was a little fussy, but overall we didn’t deal with any major health issues. Just after Kieran had turned two, we made a move to State College PA for two years while Bob attended grad school. During those two years Kieran was sick ALL OF THE TIME. He started getting really bad upper respiratory symptoms – coughing a lot, trouble breathing. We often had to use a nebulizer to give him breathing treatments. He would get strep throat often. There was a period of time where his tonsils were so swollen, he was literally choking on his food and having trouble swallowing. At the same time he was beginning to lose weight. His hair was thin, his belly was distended and he had dark circles under his eyes. He was fatigued – he would sleep a solid 3 hours or more in the afternoons and 11-12 hours at night. His gross motor skills were a bit delayed compared to other children his age. He was a late walker and while we were in State College, we had him evaluated by a physical therapist. She diagnosed him with low muscle tone and worked with him for about a year to help him develop those muscles. It did help, but looking back on it, I realize this was also due to him having Celiac. He used to wake up regularly screaming about pain in his legs. This is something many parents attribute to “growing pains”, but in his case he wasn’t really growing much so it didn’t make sense. Turns out it was joint pain. Basically his body was overall inflamed. Due to his symptoms, we took him to a GI specialist (drove from State College to Philadelphia to a CHOP doc), who never suggested Celiac and didn’t have any suggestions other then he might have reflux. Our pediatrician at the time said his symptoms were asthmatic (but too young for him to diagnosis him with Asthma and said he’d most likely grown out of it). I had several doctors over the years tell me to feed him junk food to help him gain weight. Fast forward…after leaving State College, his health issues subsided a bit. He did gain some weight but he was still really short for his age. He wasn’t sick quite as often but deep down as Mom, I just had a feeling something was off with him. I knew there was a connection between his behaviors that we struggled with and something that was going on in his body.

 I always wondered if he was allergic to some kind of food or something in the environment. We eventually tested his iron around age 4-5 because he had such extreme mood changes that seemed like a low blood sugar reaction – like if he ate something, he’d be ok. Turned out he was anemic. That was the first true test result we had that pointed to Celiac. He wasn’t absorbing the things he needed from his food. It took a little longer for us to then test him for Celiac. I know this might sound strange to some of you reading this, but it was actually a huge relief to find out that he had Celiac Disease because that meant we could help him by changing his diet and eliminating gluten. Within 5 days of taking gluten out of his diet, Kieran was a completely different child. He was the kid that I had always known was in there, but was trapped by something making him not quite himself. Immediately his energy increased, he was happy, easy to be around, his anxiety subsided, and his sensitivity to things lessoned. Kieran is still small for his age. I’d say he’s about two years behind – he just turned 10 and is the same height as our 8 year old.

However, his growth has completely normalized since he went on the gluten free diet. He has grown 2-2.5 inches every year since going gluten free. We never put him on the growth hormones and he no longer qualifies for them. The crazy thing about Celiac Disease is that it has such a wide range of symptoms. Children and Adults who have it can experience it in very different ways. Some people may feel bloated and sluggish, children can be lethargic or hyper active. A child can be short for their age but have no other symptoms. It can be difficult to diagnose. Blood work can be an indicator, but, can also be wrong. You can have a negative result on your blood work and still have a positive scope. The only way to get a true Celiac diagnosis is by doing a scope via GI specialist. Although it’s a pain and no one likes to do this type of test, in our case I’m glad we did it. I have a healthy, happy child with tons of energy. I’ve never once regretted doing the tests. If you have a gut feeling about your own child, I would encourage you to seek answers and if you are not pointed in the right direction, keep searching and asking for help until you get what you and your child needs. I’m so glad we did.  

 

The definition of Celiac Disease according to celiac.org is “A serious genetic autoimmune disorder where the ingestion of gluten leads to damage in the small intestine. It is estimated to affect 1 in 100 people worldwide. Two and one-half million Americans are undiagnosed and are at risk for long-term health complications.” For more information on what Celiac Disease is or to find a symptoms checklist, visit:

https://www.beyondceliac.org or https://celiac.org/

 

Written by Cara Long


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