Pediatrician Called About Endo Results

[sashabetty]

Our pediatrician called today about the results of my 2yr old daughter's endosopy, because apparently the results were forwarded to him. No call to us from the GI Dr, but the pediatrician said that the results showed no damage at all. His response to this was, she may be Gluten Intollerant, but you don't have to worry if she gets gluten every once in a while because it won't cause phisical damage.

Interesting idea. I don't know what to think. She was symptomatic until we originally took her off of gluten, then got much better. I wish in retrospect that I had pursued testing then, because somehow I don't feel satisfied that we have the whole story now.

The frustrating part is that my daughter is low in IGA so her blood tests wouldn't even demonstrate a sensitivity to gluten. So all I have to go on are her symptoms and how they coincide with gluten intake. Unfortunately, I am going to get a lot more flack from family now that the tests have shown no problem exists. My husband still had doubts that taking our daughter off of gluten again is the right course of action.

And I still have doubts that she consumed enough gluten and that they took enough biopsy samples (the GI said, well it's spotty but not that spotty) and maybe after putting my daughter through all of that essentially for nothing except so that I could again see the physical and emotional changes that she went through, that I am left feeling like I really wasn't the best advocate for her, and now people are less willing to believe me when I say she has a problem with gluten.

Is there something else that I am missing that could coincidentally cause her symptoms (bloating, smelly mucousy stool, weight loss at one point and no weight gain at another point, undigested food coming out, lethargy, tantrums where she is clingy and not wanting to be touched at the same time, and other symptoms) only when she is consuming gluten? Does anybody have an idea of what else causes this? And what else would respond to diet changes?

[SofiEmiMom]

My now two year old had a biopsy at 14 months that was negative. My intuition told me this was wrong. I had her tested by Enterolab and it was positive for gluten intolerance. She has had some gluten accidents and it isn't pretty. It's so obvious that she is gluten intolerant - she goes from a happy, content, energetic child to a non-stop crying, clingy, exhausted, miserable little girl if she accidentally ingests gluten. As difficult as it is to remain gluten free, I know it is the answer to keep my daughter healthy. Enterolab may be an option if you really need a diganosis from a medical professional.

[Boojca]

Gluten Intolerance and celiac disease are different things, but can present in some of the same ways. Your doctor is right, this could be the case. The bottom line is that it's the same diet, so does it really matter if your daughter has celiac disease or GI? Either way, she's gotta be gluten free.

Bridget