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New To Celiac-- Withdrawal Crankiness?

mom2lucas

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mom2lucas Rookie
mom2lucas
Posted

Hi! My 22-month old son was diagnosed celiac last week through a positive biopsy, after negative blood tests. He immediately went on the gluten-free diet, but we are yet to see relevant results, actually his mood has gotten worst, and he hasn't slept any in the last few nights, which is not really like him. He's cranky, and just wants to eat, all the time. We did find out we gave him some yogurts with gluten on them by accident after he went on the gluten-free diet, so maybe that's why he hasn't started his recovery yet... or is it possible that although the biopsy was positive he's not really celiac, and something else was causing his simptoms? These were a very enlarged belly, stopped growing, and iron-deficiency related anemia. Or maybe it's withdrawal simptoms? We're just so very confused :( , the doctor told us we'd see immediate results, but it's been a week now and we feel, behaviour wise, he's gotten worst. He did put on some weight, 300 grams to be exact, in the past 2 weeks. Has any of you been through this on the healing process? Any input would be greatly appreciated. Thanks! :)

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RiceGuy Collaborator
RiceGuy
Posted

Though I'm no expert in the intestines, I do know that a biopsy is very often negative in children, even more so than adults. That being the case, a 22 month old child with enough intestinal damage to show via biopsy suggests to me that there's a lot of damage. It can take time to recover from that, especially if there's hidden gluten sneaking in someplace. And yes, there is often a withdrawal period.

Also, with such damage, he's likely not able to digest dairy, so I'd suggest no dairy products. Probably same for soy. Do check skin/hair care products too, as they commonly contain gluten.

Each person's recovery time is unique. For me it was six months before I noticed anything meaningful. A few years later I'm still working on it.

Welcome to the board!

mom2lucas Rookie
mom2lucas
Posted
  • Author
Though I'm no expert in the intestines, I do know that a biopsy is very often negative in children, even more so than adults. That being the case, a 22 month old child with enough intestinal damage to show via biopsy suggests to me that there's a lot of damage. It can take time to recover from that, especially if there's hidden gluten sneaking in someplace. And yes, there is often a withdrawal period.

Also, with such damage, he's likely not able to digest dairy, so I'd suggest no dairy products. Probably same for soy. Do check skin/hair care products too, as they commonly contain gluten.

Each person's recovery time is unique. For me it was six months before I noticed anything meaningful. A few years later I'm still working on it.

Welcome to the board!

Thanks for your help RiceGuy! He's off dairy and soy as well, I mean we do give him lactose-free milk and yogurts since the doctor said to keep him low on lactose for some time while the intestines heal, but he was tested and he's not lactose-intolerant. I'm not too stressed on how long will it take, because the prognostic is good, ie, if he's celiac the gluten-free diet will work for him. I'm just worried if there could be something else, but the doctor said it was a clear-cut case of celiac disease. Anyway, thanks again for your input! :rolleyes:

Pattymom Newbie
Pattymom
Posted

Usually it's the protein in the dairy products, not the lactose that causes the reaction, thus explaining the normal lactose test. We did continue eating some yogurt and hard cheese which she tolerated well. The protein in these is partiallybroken down through the culturing. Also, I couldn't bear the thought of taking away all of her favorite things.

We started seeing more results after about 3 weeks to a month. and we did have some initial crankiness I think due to having some favorite foods removed from her diet as much as anything. I'm sure all the testing and changes and concern in the household had some effects on our 3 year olds behavior as much as the dietary reactions.

Hope you see results soon,

Patty

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