Dandelionmom

Makinroom4baby

I know you aren't online now, but hopefully you will see this when you sign back on...

I wanted to ask if you could tell me what your DD's symptoms were prior to being diagnosed with Celiac Disease. And what tests were done to confirm. I have come to accept that out here, I have to be a STRONG advocate for Jayden b/c all of the pedis we can use with Tricare (specialists included) are awful (his pedi is okay, but he can only do so much)! None of them seem to care unless the child is showing signs of distress. Otherwise, to them it's just "something toddlers go through". I feel like I've been led to believe this and I just let Jayden's issues pile up on top of one another and that could possibly be why we are where we are now with the speech, feeding, and behavioral issues.

Anyway, I know you saw my post from earlier, but his poop has been very foul smelling, he's very very gassy and he has never really had an appetite, ever. Also, he only has a bowel movement 1-3 times a week, hardly ever 3 times a week. They say it's normal, but I know it's not.The pedi believes that it must be something GI related so he sent the stool to be tested and we will go from there. If everything comes back okay, he may suggest putting J back on rice milk, no more soy. It's making me wonder if he should be tested for Celiac Disease. Maybe he needs to be on a gluten free diet? All he eats is french toast, pb&j, nuggets and fries. That's breakfats, lunch and dinner every single day. He will not accept anything else. But I don't buy gluten free. I think the sweet potatoe fries I give him are gluten free, but other than that I don't check labels for it and I'm wondering if I've been hurting his stomach and if it has anything to do with his delays. Do you think that could be an issue that needs to be addressed? If so, what kind of testing do I need to ask the Dr to run. I plan to just tell them what I want done and they can bill our insurance b/c it's becoming more than I can handle with everything piling on top of each other.

Makinroom4baby

Oh, I forgot to add, he had a complete allergy screening done when he was 15 months old and everything came back okay. They even checked for a wheat allergy and he didn't have one. But that was almost a yr ago.

DandelionMom

Testing for kids under 6 is notoriously for false negatives. ?But if he's already pretty sick, I think that brings down the chance of a false negative. ?

DD just had a blood test called the celiac panel. ?The next step is a biopsy under general anesthesia but her doctor didn't want her to have that because she was so sick. ?The biopsy isn't always necessary for diagnosis if the numbers on the blood test are high enough and there is a positive response to the diet. ?She is not allergic to anything. ?Even wheat, oats, barley, and rye which all contain gluten came back negative on her allergy test.?

Her symptoms were: large muscle delays, extreme?behavioral?issues, poor immunity (got every cold that came around), anemia, bulky smelly?diarrhea, FTT, gassiness, and picky eating. ?

If I were you, I'd ask for the blood test to be run. ?It isn't as common in African Americans as it is in people of European descent but it isn't unheard of either. ?He needs to keep eating gluten for accurate test results. ?

Chrons is another thing to think of. ?That would suck even more but like celiac it is manageable. ?I don't know much about it though.?

I sure hope you can find answers soon. ?I'll keep J in my prayers.

Here's my email if you need it: dandelionmom...?

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