Please Help Me Understand. Testing 2 Year Old.

[jenny-ann]

My youngest turned 2 last month. When she was strictly breastfed she broke out during feeding times in an all over body rash that came on and cleared up pretty quickly. She also had awful diaper rashes even though she wasn't on anything other than breastmilk. She was tested then for food allergies. All negative. At 2 years old she has chronic diarrhea. (I don't recall her ever having normal poop.) It isn't watery, just very soft - about the consisteny of Elmers glue. It averages once a day and the quantity is average to large. Perhaps once every week a partial stool will be normal and formed. It always surprises me when it is. I removed gluten from her diet for 11 days with good results noticed within 48 hours. I reintroduced wheat and it was mostly diarrhea within 48 hours.

She had a celiac panel drawn Thursday. The doctor said the first part came back negative and they are still waiting on the second part. I didn't get the details since we are still waiting on that parts that were sent out.

So, now what? I know the tests aren't accurate under 2. How accurate are they at 2? Do I take her off wheat and never get a diagnosis? Do I keep her on wheat and retest? When? Do I move on to a different practitioner? Do I see a nutritionist? Do I see a GI specialist? If they scope her and find problems consistent with celiac in her gut is that enough for the diagnosis regardless of the lab test results? (Just a note: We eat a very 'clean' organic diet with simple ingredients and without preservatives and additives though we don't limit fat, sugar, wheat or milk.)

I am frustrated with the lack of an answer and am curious to hear about others with experiences similar to ours and also to hear some words of wisdom from parents who know.

[gftoddler]

We are struggling with the same issue however we do not have our results back yet. We have seen such good results with going gluten-free that even with no diagnoses we are going to keep him off gluten, i just makes sense.

[OBXMom]

I am sorry your daughter is having such a hard time. If I were you, I would definitely see a GI doctor, and be a little pushy about getting answers when you are there. When my celiac son tested negative as a toddler, I went to the GI doc, and continued to go every 6 months for years with little results. It wasn't until he was 7 and I said, enough, we need answers, that my doctor pursued the additional tests which lead to his diagnosis.

And about the endoscopy - I don't know. It could tell you if there is internal damage caused by gluten or by other allergies. But sometimes a situation has not progressed enough to see the damage yet, so even with a scope the celiac could be missed. Another option you could consider is enterolab. What I also wish I had done early on is to keep a food diary, along with an elimination diet. It is really hard, but it helped us a lot when my son continued to have problems after his diagnosis. Hope you get things sorted out soon.

[jenny-ann]

gluten-free, Thanks! We will go gluten-free very soon. I just feel like having a diagnosis will make others take her diet issues more seriously. My husband is on board. There are others who I believe would sabotage... Good luck with your journey.

OBX, (Off topic, we vacation there every year and love it!) A million thanks for the Enterolab info. I am just starting the celiac possibility journey and hadn't come across it before your mention. I will wait for the rest of the results (I assume it is the gene testing) and then send off for the Enterolab. I did a food/poop journal for 2 weeks while we were making diet adjustments. I will resume it if gluten-free doesn't completely clear it up in a decent amount of time.

A MILLION THANKS to both of you for responding. It is greatly appreciated!