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Gluten Free, But Still Tiny

NZions

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NZions Rookie
NZions
Posted

Hi, this is my first post, I hope I'm posting in the correct place.

 

My son, who is currently 5, was diagnosed with celiac disease when he was 3 1/2. He's been on a gluten-free diet ever since. Blood tests and endoscopies have shown that he is free of gluten.

 

One of the reasons we originally went to a gastroenterologist was because my son would vomit every day or two. Since being gluten-free, he has ceased that level of frequency, but he still vomits perhaps once or twice a month.

 

Furthermore, even though he's been gluten-free for a year and a half now, he is still not even on the weight or height chart (30 lbs, 38 inches). We (parents and doctor) expected him to start to grow after being gluten-free for so long, but we haven't seen any difference. We plan on getting a second opinion, but I thought the combined expertise on this forum might be able to shed some light.

 

Also, the gastro made the point that my son was spitting up while he was on formula (which, I understand, is gluten-free as well.)

 

Any ideas as to what else can be affecting him?

 

Thanks.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board. Have they rechecked his antibody levels to see if they are coming down? If you haven't you should do so. Even a tiny bit of gluten will keep the antibodies active and keep him from healing. Is he the only celiac in the family? If he is are you doing all you need to prevent cross contamination?  If you haven't already you should read the Newbie 101 thread at the top of the Coping section.

NZions Rookie
NZions
Posted
  • Author

Welcome to the board. Have they rechecked his antibody levels to see if they are coming down? If you haven't you should do so. Even a tiny bit of gluten will keep the antibodies active and keep him from healing. Is he the only celiac in the family? If he is are you doing all you need to prevent cross contamination?  If you haven't already you should read the Newbie 101 thread at the top of the Coping section.

 

Thanks for the reply. They did check again to see if his antibodies had gone down, and they had. He is the only celiac, and cross contamination is a worry for us. At home we're as careful as we can be, but in camp/school there have been incidents.

 

I'll check out the newbie thread, thanks!

mommida Enthusiast
mommida
Posted

I would suggest further testing.  Going to a different doctor may not be called for, as the current doctor has the full testing reports and history with your son.

 

My daughter was diagnosed with Celiac when she was 16/ 17 months old.  She was then diagnosed with Eosinophilic Esophagitis when she was 6.  Young children present with symptoms that can be many different things from a congenital defect, infection with H. Ploryi or parasites, and even an hernia.  So talk to your doctor about which tests are going to be done and what these tests can rule out or diagnose.

 

As for Eosinophilic Esophagitis, there has been some studies that show a link between Celiac and EE (or EoE), but it is still a medical mystery.

 

My thoughts and prayers are for a quick diagnoses and recovery for your son and for your family during this time.

StephanieL Enthusiast
StephanieL
Posted

Have you considered removing dairy from his diet? Many people with Celiac disease have issues with dairy too.

 

As for weight- I can understand that everything thinks he should be gaining more BUT what were your hand his Dad's build at that age? Were you small kids?  Is there the genetics to back up him being small?  It really could be that he's just a small kid.  FWIW, 5 years after my DS was diagnosed and several different Dr's (the top Celiac guy in the US included) we put him on a nutritional supplement.  It's helped some but we aren't in the habit of giving it to him over real food.  

 

When DS's levels weren't coming down we made the transition from "mostly gluten free house" meaning we still had bread and things but were very careful about clean up and had separate prep areas for gluten/nongluten things, to fully gluten-free because we were desperate to see him improve.  We keep a few things in the home now that are prepackaged in a cabinet on the other side of the kitchen from all the other food.  All family meals are gluten-free and all the kids eat the same here at home.  It may not work for you but we found it gave us more piece of mind going that way with it.

  • 2 weeks later...
albauer94 Apprentice
albauer94
Posted

Has his doctor run any other tests?  My nephew was misdiagnosed for probably around 6 years.  We think it started about the time he turned 5 but he wasn't diagnosed until he was at least 11.  When he was 8 he was diagnosed with Hashimotos thyroidits after not growing at all since he was 5 1/2.  Then at 12 found out he was not producing any growth hormone (I think there are 2 different ones). Although he was growing somewhat after going on thyroid meds and starting a gluten free diet he was still not growing like he should have been.  He will be 14 next month and has been on growth hormone shots for the last 18 months or so and is finally catching up.  He is about 5'2" now and getting closer to the rest of the boys heights.  

 

Has he been referred to an endocrinologist?

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