Endoscopy today confirmed Celiac

[MommaRN]

Hi, I’ve posted in these forums once, in the main question area and got a lot of good advice. My 6 yr old son had very antibody positive blood work a few weeks ago after a rapid decline and “failure to thrive.” Other lab work showed malnutrition. He went gluten free for two weeks at the recommendation of our PCP and then we saw the pediatric GI specialist last week who wanted an endoscopy ASAP. He had my son go back on gluten for a few days prior and said 2 weeks of gluten feee wouldn’t be enough time for all the damage to heal so we should still see signs of celiac in the EGD. I was worried we wouldn’t.

Today was the EGD (endoscopy) and the biopsies...and without the biopsies back yet, he told us what he visualized was consistent with celiac. Lots of inflammation was found throughout the duodenum. 

My son lost another 3 lbs and we are so anxious to get these results... I guess they also run a test to see if there are any other foods he should avoid (like lactose)... and what we can do to heal his gut so he can start digesting. They also are testing for pernicious anemia right now and B12 levels. 

Anyone else’s children have abnormally low Alk Phosphatase levels? I know it’s seen with malnutrition and a few other conditions. Did anyone see improvement in those numbers after gluten free. 

Any advice or help with these beginning stages would be so so so appreciated. Thank you!

[tessa25]

It is my understanding that once children go 100% gluten-free they bounce back fairly quickly. But I am not a doctor.

[squirmingitch]

Homemade bone broth. There are numerous recipes on the internet. Extremely nourishing, very digestible & gentle on the gut. Give him easy to digest foods --in other words cook veggies to death - no raw ones. Might want to avoid dairy for a few months & then begin cautiously adding it back in. Forget oats for the first year. Stay away from processed foods for a good 6 months.