Bruised but not broken

[NataliesMom]

My sweet little 16 month old has been diagnosed with celiac disease after weeks and weeks of suffering with what my pediatrician kept assuring me was a stomach bug. My instinct was telling me something was terribly wrong but I tried to remain calm as I watched my happy, chubby, baby girl turn into a sick lifeless skeleton. She stopped walking. She stopped talking. I was carrying her every minute of the day that she wasn't sleeping. She eventually became so dehydrated that I took her to the ER against my doctors advice (as she told me to "sit tight" while we ordered blood work). At the hospital she was admitted and labeled Failure to Thrive; connected to IVs and within hours considered celiac with 99% certainty. She had her endoscopy 3 days later and sure enough- We got our answer. It is now one week later and her new diet has completely changed life.. she is smiling laughing and playing again. (amazing, isn't it?) She hasn't gained any weight yet and her stomach is still very big. Walking is going to take some time. Falling leads to excruciating pain.  I know it can take months and months to really start healing but I'm wondering if anybody has had a similar situation with a child so small? Her tailbone is completely bruised because she is so malnourished and just to be touched is very painful to her. 

I am completely new to the Celiac community. I had never even heard of it before this nightmare I've been living! But I am so grateful that I have an answer & reading the posts on this website has been giving me positivity that i need! 

[CaliforniaGranny]

My granddaughter was diagnosed celiac a year ago when she was just a bit over 3 years old. It is a challenge for her parents. She is an only child (so far) and they decided to "clean house" and nothing with gluten is in their house. Her parents might have gluten if they eat out without her but otherwise they don't eat anything she can't have too.

Depending upon where you live, you might find a lot of places to purchase gluten-free food. Be aware it is much more expensive to buy a loaf or bread or any gluten-free free food. 

My little one is doing great and has adjusted to eating gluten free. She can even go out to eat for pizza (CPK and Mellow Marshmellow) and Chic-fil-a.  Take it one day at a time and read labels carefully. 

So glad  you are seeing improvement in your little one. 

 

[pschwab]

My son was two when he was diagnosed. I know there is a huge difference between sixteen months and two developmentally and growth wise, but I'll give you our experience. He was suffering from bad bowel movements daily, sporadic vomiting and complaining of stomach aches daily. After about a month I contacted his pediatrition and was told to wait and keep an eye on him. After another month I insisted on being seen. They ran many tests and suspected celiac. We were referred to a pediatric gi specialist who confirmed the celiac diagnosis. We were lucky to have supportive doctors and discover the celiac so quickly. I think the hardest part is figuring out how long the kiddo was actually dealing with celiac before you got the diagnosis and started treatment. We look back at pictures and try to pinpoint when he started to "look" sick and it's really tough. Obviously the quicker you catch it and start treatment the less damage there will be and the quicker the intestines can start to heal. It sounds like your doctors were really not helpful so maybe your kiddo went a bit longer and will take a bit longer to heal the damage. We also were shocked and so happy with how quickly we noticed an improvement in his health. We noticed a huge vocabulary/language improvement as well once we went gluten free. I like to think that because they are so small, they might heal more quickly than an adult whose intestines are bigger and may have been undiagnosed for years. But that's just my theory. We went completely gluten free in our home as well. You know how little ones get into everything and constantly put everything into their mouths. We have found that home is the only place my husband and I feel completely comfortable; everywhere else we are constantly watching him to make sure he's not getting glutened. I would be very careful about eating out anywhere. We have found that most "gluten free" restaurants are a joke. They don't know how to avoid cross contamination. Many times we've walked right out after questioning a server and not feeling comfortable with their process. It's just not worth it to us to risk our little one's health. Gluten free food can be more expensive, but we found our food budget actually went down because we quit going out to eat. Watch art supplies as well. Playdoh has gluten but making your own is super easy. Good luck! I hope your little one continues to improve!

[Victoria1234]

7 hours ago, NataliesMom said:

My sweet little 16 month old has been diagnosed with celiac disease after weeks and weeks of suffering with what my pediatrician kept assuring me was a stomach bug. My instinct was telling me something was terribly wrong but I tried to remain calm as I watched my happy, chubby, baby girl turn into a sick lifeless skeleton. She stopped walking. She stopped talking. I was carrying her every minute of the day that she wasn't sleeping. She eventually became so dehydrated that I took her to the ER against my doctors advice (as she told me to "sit tight" while we ordered blood work). At the hospital she was admitted and labeled Failure to Thrive; connected to IVs and within hours considered celiac with 99% certainty. She had her endoscopy 3 days later and sure enough- We got our answer. It is now one week later and her new diet has completely changed life.. she is smiling laughing and playing again. (amazing, isn't it?) She hasn't gained any weight yet and her stomach is still very big. Walking is going to take some time. Falling leads to excruciating pain.  I know it can take months and months to really start healing but I'm wondering if anybody has had a similar situation with a child so small? Her tailbone is completely bruised because she is so malnourished and just to be touched is very painful to her. 

I am completely new to the Celiac community. I had never even heard of it before this nightmare I've been living! But I am so grateful that I have an answer & reading the posts on this website has been giving me positivity that i need! 

I just want to say how terrifying that must have been, and still is, I'm sure. You guys are in my prayers. This site is terrifically helpful and I'm glad you found it. The best of luck to you all.

[RMJ]

I am so glad you have an answer and that she is responding to the gluten free diet