Need Feedback- 2 Yo W/ + Anti-ttg, Diarrhea

[tobi]

Hi- this is my first time posting and I am hoping some of you may be able to give me some insight on my son's situation.

He is a 24-month-old who has had 4-5 loose stools per day for about the last 10 months. Additionally he wakes several times a night with abdominal discomfort and has periods of irritability. He also is always hungry. GI dr diagnosed him with "toddlers diarrhea". But after my persistence, the dr agreed to do some further testing. My husband is a Type 1 diabetic and so we wanted to rule out celiac.

The bloodwork revealed a positive anti-tTG. GI doc did an endoscopy 10 days ago and came straight from the procedure room to tell us there was notable flattening of the circumferential folds and some mild gastritis. He instructed us to start a gluten-free diet immediately as he said he was almost 100% sure this was celiac. He took 3 biopsy samples. While we were waiting for results, we began the diet. Within just a few days, the stools decreased to 2 per day!

We received the results and the biopsies looked normal. So now the dr is saying it probably is not celiac?? Although he did admit that the damage can be patchy and therefore not always picked up on the small section selected for biopsy. He said we could stay on the diet for a few more months and see if he continues to improve.

I feel like we have been on a rollercoaster. Has anyone else been in this situation where symptoms, endoscopy and blood test indicate celiac and then have a normal biopsy? I appreciate any information anyone can offer. THANKS!!

[CarlaB]

Welcome.

Both my blood work and my endoscopy were negative for celiac. I do much better on the gluten-free diet, however, and find that I'm just as sensitive to gluten as a celiac is. Once a supplement I was taking had barley listed as the 20th ingredient ... it couldn't have been much considering it was a small pill, but it WAS enough to make me sick.

So, I'd heavily consider your son's dietary response. Sounds like you have a good GI.

[happygirl]

I had positive bloodwork, but a normal biopsy (biopsy was taken shortly into the gluten-free diet).

A biopsy can rule IN Celiac, but it cannot rule it OUT.

I think that trying the gluten free diet will be a strong dietary indicator. If he responds positively, the positive blood test, the diet change, and the inconclusive biopsy will still point to gluten being a problem.

Best of luck, and I hope that you find this site helpful in navigating the diet. Let us know what we can do to help. Welcome!

[rez]

I totally feel for you. We have had a similar experience. I would do the diet for 6 months and then re-do the bloodwork. If the tTG drops, you will know it's Celiac. Genetic testing would also help. DQ2 and DQ8 are the recognized Celiac genes.