20 month old son recently diagnosed and recovering

[GR8ness]

I’m already crying as I type this.  I found out my 20 month old son has Celiacs a day before I gave birth to his little sister 2 months ago.  The poor kid was so bad, he went down to 19 lbs, HUGE distended stomach, ribs showing and absolutely nothing on his bones. No diaper or pants held up. My poor son wouldn’t eat anything except for, weirdly, bread and fruit snacks.   

 I knew something was wrong when he just cried all the time and threw tantrums over the smallest things.  He would actually bang his head on grocery carts and run into walls, crying more by hurting himself. Nothing for the life of him soothed him.  He was dropping weight and literally wilting away before my eyes.  I didn’t know my son anymore.  

 

Since his recent diagnosis, he has been almost 2 months gluten free. Since he has been gluten-free, he has been actually saying words but of course not many so I don’t know when he is in pain or if he has been accidentally glutened.  I (Mom) and his Dad both tested negative for Celiacs so we have no idea on what the pain feels like, what signs to look out for if he is sensitive to something he is eating etc. I’m very cautious on everything.  I don’t let him play with play dough, or certain finger paints and even wear gluten free chapstick/makeup in case it gets on his lips.  We live in a gluten-free household as well; products, new toaster, etc   

My poor son was anemic, in a fog, cried and threw tantrums 2 months ago. Now he is happy, trying to talk, climbs things like a crazy boy should.  I don’t know if he is still recovering or in pain since he has been gluten-free. I don’t know if he will act as severe as he did Like in the past.What does the pain feel like when you digest gluten? What should I look out for if he accidentally comes in contact?  Will he automatically act as bad as from before? Lastly, what do I do to make him feel better once the damage has been done??  

Thanks so much guys 

[Wheatwacked]

I Know how you feel. My son was born in 1976. They tried to convince my wife that he was just colicky because she was so anxious and she should take valium. I looked at him and thought "Biafra Baby Belly" because he looked just like the news photos of the Biafra famine in the 60's.

Eventually, and without the valium, we got to the only specialist in the state. Once he diagnosed Celiac, Mike went on a diet of exclusively Nutramigen until weaned. He was gluten free until around 5 years old when he would sneak bread. It did not seem to bother him so he ate a "normal  diet".He recently went GFD because of issues cropping up. 

He grew up to be a professional ocean lifeguard and received an award for heroism.  Your son will continue to grow and improve. You have awareness now that we didn't have. Make him proud to be wheat free.

Celiac is only one of the 200 or so symptoms that show improvement with a gluten free diet so you might find hidden benefits for yourselves.  

[Jmg]

6 hours ago, GR8ness said:

I’m already crying as I type this.  I found out my 20 month old son has Celiacs a day before I gave birth to his little sister 2 months ago.  The poor kid was so bad, he went down to 19 lbs, HUGE distended stomach, ribs showing and absolutely nothing on his bones. No diaper or pants held up. My poor son wouldn’t eat anything except for, weirdly, bread and fruit snacks.   

 I knew something was wrong when he just cried all the time and threw tantrums over the smallest things.  He would actually bang his head on grocery carts and run into walls, crying more by hurting himself. Nothing for the life of him soothed him.  He was dropping weight and literally wilting away before my eyes.  I didn’t know my son anymore.  

 

Since his recent diagnosis, he has been almost 2 months gluten free. Since he has been gluten-free, he has been actually saying words but of course not many so I don’t know when he is in pain or if he has been accidentally glutened.  I (Mom) and his Dad both tested negative for Celiacs so we have no idea on what the pain feels like, what signs to look out for if he is sensitive to something he is eating etc. I’m very cautious on everything.  I don’t let him play with play dough, or certain finger paints and even wear gluten free chapstick/makeup in case it gets on his lips.  We live in a gluten-free household as well; products, new toaster, etc   

My poor son was anemic, in a fog, cried and threw tantrums 2 months ago. Now he is happy, trying to talk, climbs things like a crazy boy should.  I don’t know if he is still recovering or in pain since he has been gluten-free. I don’t know if he will act as severe as he did Like in the past.What does the pain feel like when you digest gluten? What should I look out for if he accidentally comes in contact?  Will he automatically act as bad as from before? Lastly, what do I do to make him feel better once the damage has been done??  

Thanks so much guys 

Hi and welcome

It's tough to read about a little guy going through all that so I can only imagine how tough its been for you and your partner. It's good news however that he's diagnosed and you and his doctors can take the steps required to keep him safe. 

Responses to gluten can change over time so there's no guarantee your sons response will be the same. It may be that he gets more sensitive to small amounts with time, that's quite common. However sometimes responses can become very muted or even not show at first at all, but the immune response can still be taking place, so no letups or exceptions on the diet has to be the approach!

There's some info here which may be of help: https://www.celiac.com/forums/topic/91878-newbie-info-101/

Good luck to you all!

Matt

[GR8ness]

Thank you guys!! I appreciate the replies. Glad there is something out there for my son and I to ask questions and help.   I have a long road ahead with my son but a positive one! I have to. 

[cyclinglady]

I am so glad you son has improved on the gluten free diet.  I am glad that your house is gluten free.  It is so nice to have a safe place to be.  Shared kitchens can be done (I did it for 12 years), but after my diagnosis, the whole  house went gluten free (two against one).  My daughter, who does not have celiac disease, eats gluten free at home.  She gets her gluten fix usually at a school or out with family and friends.  

You will know when your son has been glutened.  My daughter can sure tell with her Dad and me.  Grumpy is one of the first symptoms to crop up.  Pain for me is like having a stomach virus (vomiting) or food poisoning.  Later, I find that it hurts to digest anything (hours) so I go to soft foods that are easier to digest, like plain soups, stews, well-cooked veggies, applesauce, bananas, etc. until I feel better.