Delay or decline endoscopy for 4 year old?

[Edensmama]

Hi everyone,

I am new here, so my apologies in advance! My 4 year old daughter has had a huge slow down in her growth and has been sluggish so we got her tested for hypothyroid, anemia, and celiac. We never suspected celiac but now that her blood tests are positive we recognize the rather distended belly and occasional constipation.  Her T4 was almost below range, her TSH was high, she has anemia, and her celiac panel came back strongly positive. Her numbers for EMA are 1:320 and TTG AB, IGA was over 100. Was saw a pediatric GI today who wants to do an endoscopy in a month and wants us to continue to have her on gluten until then. We are moving out of the area in about 7 months and I think the area we are moving to has better medical care. I am just wondering if we should delay (or even decline!) the endoscopy and get her on a gluten-free diet right away. Will it be really hard for her to do a gluten challenge after a year of being gluten-free? What is the real reason to do an endoscopy when her numbers are so high and she has anemia, stunted growth, and distended belly? Why cause any more problems/take on risks and not go gluten-free right away? Any advice would be very helpful, thanks so much!

[mommida]

It's now or never for the endoscopy.  Putting your child back on gluten for testing in the future would be cruel and dangerous.  (sometimes reactions after starting a gluten free diet can be more severe, and this can lead to dehydration in young children -life threatening situation that requires an IV)

There are reasons to do an endoscopy at this point...

Get a a baseline of the damage of the gut which can be important to make sure the gluten free diet is working

Rule out any other disease or disorders contributing to symptoms that can be treated, but only if diagnosed.

Personal experience for my advice..

Daughter had symptoms as an infant starting foods.  Over 3 month wait to get into the ped gastro, so stopped giving high gluten foods to keep her from being so ill.  So at 14/15 months old she had to consume gluten for blood panel.  Hours after having the blood drawn she became so ill she had to be hospitalized for dehydration.  She was too sick to have the endoscopy done and I refused giving her any more gluten.  (Blood panel had some positives for Celiac - genetic testing results showed positive for 2 Celiac genes - DQ2 and DQ8)

She was doing well on a gluten free diet from ages 17 months old till 6 years old.  She would have some issues of any time she started vomiting (stomach bug/ accidental glutening?) she would not stop.  She was hospitalized for dehydration on average of once a year.  Then a really bad illness was going around and she caught it.  She was vomiting blood.  Off to the hospital again.  No further testing could be done at that time.  Wait 3 months to get into the ped gastro.  Finally an endoscope was done to diagnose her with Eosinophilic Esophagitis along with Celiac.

So it seems there is some connection between the EE and Celiac.  So don't take any chances of missing a concurrent illness.