New Here - My 24 Month Old Needs An Endoscopy

[erkie14]

Hello! We just had our follow-up with my 2 year old's GI doctor. We had him tested in December and again in June for celiac disease. He has very soft, yellowy stools (but not textbook diarrhea), lots of gas and what we believe may be lactose intolerance. We also have a strong family history of autoimmune disease, but no known celiac.

The results we received today included: negative celiac panel, IgA deficiency (22), slightly elevated liver enzymes (AST and ALT), hemoglobin at the low cutoff and a severe exocrine pancreatic deficiency.

Has anyone had a child diagnosed that did NOT have severe symptoms? My son is small for his age (around 15% for weight and not on the chart for height). He has had funky bowel movements and some mild intestinal distress (we believe) since around his first birthday, as well as a nasty c. diff infection that is possibly related to his IgA deficiency - nasty antibiotics. Does this cluster of symptoms possibly point to a celiac diagnosis? I am a nervous wreck right now. He seems so happy and well for the most part that it is difficult to think that something may be wrong.

Thank you so much for any input!!

[mmmomx2]

My son's celiac panel came back negative, too, but his GI specialist said that false negatives are common for children. My son actually didn't have any GI symptoms. We had issues with growth (he is so skinny he wasn't even on the charts), fatigue, pallor and for the last few months before diagnosis, attention problems in preschool. He also had enamel loss and discoloration of his front teeth. My daughter, myself and my brother are all Celiac, and I don't think you could call any of our symptoms severe, and we all presented many different symptoms. Is your GI doctor planning on doing the endoscopy? That will give you the answer you are looking for.

[balmerhon]

My son tested negative twice for celiac (he's now 3 and a bit). He just had an upper and lower endoscopy this past Tuesday. We'll have the pathology results in early August.

DS is average on height but skinny as a rail (he can wear 18 month size shorts/pants). He weighs 25lbs. He has very soft poop but is prone to diarrhea. He has a bit of reflux but no other obvious symptoms (tummy pain, etc). Though I did just notice one of his front teeth is discolored. Aside from that, he is happy, energetic, and full of beans.

So we are very interested to see if the endoscopy will turn anything up for him.

[Genna'smom]

My now 3 yr old also tested negative in blood work with absolutely no symptoms and she decided to stop eating and drinking at 22 months and no one knew why - while doing an endoscopy for her acid reflux they did biopcies and came back with celiac disease. It has been a long road with her as it took us about 7 months for her to start eating again and she just had her best dr apt in the last 1 and 4 months and is now up to 27 lbs 7 oz...... and 37 1/2 inches tall.....

Good luck to you. We also decided to do genetic testing and that came back unsure also. So for now we will stick with the gluten free diet as she is growing, playful, silly girl....

Thinking good thoughts with you.

[mommida]

The blood test to screen for celiac disease is not as reliable in patients under 24 months. An endoscopy with biopsy can diagnose or exclude a number of disorders, not just celiac disease.

Celiac can have many vague symptoms.

[elle's mom]

My 4yo daughter's main symptom was her "temperament" as the first pediatrician put it. We had been dealing with it from night 1 in the hospital. She wasn't diagnosed until she was 2 1/2! Poor thing-we had no idea. Anyway, my now 2 yo son has been screened and we found out he has IgA deficiency. My understanding is that this proves the antibody blood screen useless. We are proceeding wth genetic testing and our thoughts are that if he's positive for DQ2 &/or DQ8 he is going gluten free just to be safe. I don't want to put him through the endoscopy at this point. My daughter had it, but I was naive then and I wouldn't do it again.

DD was skinny, difficult potty training, distended pot belly also along with terrible "temperament". Behavior has gotten MUCH better since gluten-free (almost 2years now). Potty trained 100% within 1mo. of gluten-free, and went from <5%tile to 25th%tile for weight. Belly is gone. Antibody levels went from 1100 down to 44 (we're still working to get to "normal" which is below 20)

DS is not too skinny, but has outbursts similar to DD (makes me nervous). Some trouble potty training (but he IS a boy)..........we'll see