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wonkabar

Does Any Of This Sound Familiar?

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Question about Dx...Zachary's ped has been extremely supportive about the dietary changes. However, he wasn't willing to Dx him with Celiac not having bloodwork or a biopsy to substantiate it. We're honestly okay with that. He's not a ped GI so that's not his area of specialty. That being said, at some point we'd like to know if Zachary does infact have celiac disease. It's a life-long issue, and we'd like to educated/prepare him for that the best we can. Fortunately he's so little he doesn't know any better at the moment. I don't know that taking him to another ped GI would make a difference at this point in his life. Any thoughts?? Thanks!

--Kristy

PS-We started limiting dairy yesterday (no milk, pudding, cheese or yogurt---just soy stuff) and I'm telling you I think he's already a little calmer...not as bouncy, less yelling and throwing stuff. We're anxious to see how he is over the weekend.

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To get him formally diagnosed, he's going to have to be eating gluten (and a lot of it) for a number of months. Determination of celiac disease is done by identifying the extensive damage it causes after it has been active for a while, so to get a dx, you have to cause all that damage first. It may be important enough to do the dx (that's a personal decision), but it will take a good amount of time to prepare for and may be difficult for him.

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To get him formally diagnosed, he's going to have to be eating gluten (and a lot of it) for a number of months. Determination of celiac disease is done by identifying the extensive damage it causes after it has been active for a while, so to get a dx, you have to cause all that damage first. It may be important enough to do the dx (that's a personal decision), but it will take a good amount of time to prepare for and may be difficult for him.

That's my concern at the moment. We had the bloodwork done prior to going gluten-free...it came back negative. We're not willing to put him through a biopsy at this age; he's just 3. So putting him back on gluten right now would be problematic in that he just started preschool . We don't want his problems with gluten to interfere with preschool...he needs preschool right now far more than a formal Dx. We've had tremendous results to the dietary changes. At what age do you all think would be a little easier to deal with the Dx process??

--Kristy

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That's my concern at the moment. We had the bloodwork done prior to going gluten-free...it came back negative. We're not willing to put him through a biopsy at this age; he's just 3. So putting him back on gluten right now would be problematic in that he just started preschool . We don't want his problems with gluten to interfere with preschool...he needs preschool right now far more than a formal Dx. We've had tremendous results to the dietary changes. At what age do you all think would be a little easier to deal with the Dx process??

--Kristy

You've got the rest of his life for that--and maybe the standard and method of diagnosis will change in the next few years. But when development is lost because of eating gluten--that makes me really nervous. I wouldn't want to play "what-if," wondering if he would have done better had I not reintroduced something that poisoned him.

I'd at least wait until he's old/verbal/self-aware enough to give me really good feedback about what's going on inside his mind and body. However, I'm sure people will have just as good arguments for getting a Dx now! Tough choice, I guess.

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You've got the rest of his life for that--and maybe the standard and method of diagnosis will change in the next few years. But when development is lost because of eating gluten--that makes me really nervous. I wouldn't want to play "what-if," wondering if he would have done better had I not reintroduced something that poisoned him.

I'd at least wait until he's old/verbal/self-aware enough to give me really good feedback about what's going on inside his mind and body. However, I'm sure people will have just as good arguments for getting a Dx now! Tough choice, I guess.

So glad you agree...that was my point exactly!! :) There is NO WAY that we'd even consider introducing gluten right now. I was talking about the future. He's at such a crucial stage developmentally (b/t 3 and 5), and there's no piece of bread worth jeopardizing his development. My husband and I are waiting for exactly what you said...him being able to tell us what/how he's feeling. We think we really need to know that in order to convey the right message to the doctors. We absolutely do want to proceed with the Dx process--but not until the time is right. I can certainly see and understand the argument for a Dx now, but I don't think anything would change reagarding treatment for him at the moment.

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My pediatrician thinks that the results we see are Dx enough. Everyone has to make their own decisions, but for us, it's an easy one. If they decide they want to go back on gluten when old enough to decide for themselves, I will support them, but as long as we're the ones deciding for them, we're not worried about the formal Dx. My son will ask, " Does this make my tummy hurt?" with every new food that he tries right now. He's horrified of feeling bad again. If he does decide to try it later and it makes him feel that bad, I'll be surprised if he wants to put himself through getting a formal diagnosis. The Ped. GI said that he didn't want to give a formal Dx because he didn't have a positive biopsy, but he knows us very well and knows that we'll stick to the diet. He said he was afraid of some of the negative ramifications like getting insurance when he's older. In his opinion, though, it is celiac. The insurance thing is just another complication that we want to think about with him. My husband is diabetic and it's easy to be denied over almost anything.

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