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GwenO

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So, it's been just under a year since my twelve year old daughter was diagnosed.  Overall doing very well.  Eating disorder has faded to the background (meds doing their job), been completely gluten free.  She has gained 30 lbs (she was 42lbs, completely emaciated), grown three inches in height.  She is small, but looks healthy and is doing well.  Bloodwork came back today.  Low vitamin D and iron - not unexpected.  Not sure how celiac is measured other places, but here they told me that the number should be less than 20.  She came in at 153.  I'm staggered.  Completely gluten free - no chance of cross contamination in the home, and I check all products, including medications and vitamins.   She is completely on board - her OCD comes in handy in this case - she's vigilant.  I don't get it.  11 months??!!  I'm concerned and stumped - I can't figure out how it's happening.  We don't eat out - she takes her own food everywhere, has her own toaster, cutting board etc., costmetics, toothpaste etc., all gluten free.  Any ideas?

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Well firstly and most importantly big CONGRATS on the weight gain. Based on your numbers she really needed it and to gain +70% of her weight is fantastic. 

 

Quick question did you say completely gluten-free in home ? because you also said she has her own cutting boards , toaster etc...  so is the home 100% gluten-free ?

 

If not there is always a way to get CC in a mixed house, crumbs on the counter ,  utensil drawer, knife block  etc.. but that number does seem high.

 

She may be highly sensitive, is your food all labeled gluten-free or are there products made in facility that processes wheat etc.. ?

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So, it's been just under a year since my twelve year old daughter was diagnosed.  Overall doing very well.  Eating disorder has faded to the background (meds doing their job), been completely gluten free.  She has gained 30 lbs (she was 42lbs, completely emaciated), grown three inches in height.  She is small, but looks healthy and is doing well.  Bloodwork came back today.  Low vitamin D and iron - not unexpected.  Not sure how celiac is measured other places, but here they told me that the number should be less than 20.  She came in at 153.  I'm staggered.  Completely gluten free - no chance of cross contamination in the home, and I check all products, including medications and vitamins.   She is completely on board - her OCD comes in handy in this case - she's vigilant.  I don't get it.  11 months??!!  I'm concerned and stumped - I can't figure out how it's happening.  We don't eat out - she takes her own food everywhere, has her own toaster, cutting board etc., costmetics, toothpaste etc., all gluten free.  Any ideas?

what was her original result?  if it were in the 300's say, you have had a big improvement....

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Thanks.  Yes there are gluten eaters in the home, but she does have all of her own things.  I am wondering about some of the bakery things I purchase.  We're in Canada and Superstore now has gluten-free stuff - but I'm wondering if they're using the same pans etc.  I have an email in to them.

 

Her numbers were over 200.  It's frustrating because if they're over 200 then that's all they tell you, so I'm not sure how high they were.  I do know that the surgeon told me that the damage to her gut is "extensive and serious". 

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I'm pretty new to all this...but from what I've read...with some people the skin care/hygiene items can also expose you to gluten and there can be a pretty good chance of cross contamination with other foods in the house. She may be more sensitive to it and it is probably something no one is even realizing is happening.

 

Hope you can figure out where she is getting gluten from!

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We use superstore products sometimes, they are certified gluten-free. She might be very sensitive to even those products. We have noticed my eldest gets her DH back if she has too many processed gluten-free products. The only gluten-free alternatives she usually gets are bread and cereal. Even then we limit it. It might be worth avoiding gluten-free replacement products for a while and seeing if it makes a difference

The growth shows she is definitely headed in the right direction, maybe the changes happening with puberty are affecting how quickly her antibodies return to normal given that she is 12, justa thought

If her damage was extensive it could take a good while to get back to normal. I noticed when I taught kindergarden when the kids had a huge growth spurt they seemed to stop everything else, ie didn't seem to learn much in class, then they stopped growing for a while and their brains were sponges! With that huge amount of growth, maybe her body hasn't had the energy to repair her gut yet!

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Thanks.  Yes there are gluten eaters in the home, but she does have all of her own things.  I am wondering about some of the bakery things I purchase.  We're in Canada and Superstore now has gluten-free stuff - but I'm wondering if they're using the same pans etc.  I have an email in to them.

 

Her numbers were over 200.  It's frustrating because if they're over 200 then that's all they tell you, so I'm not sure how high they were.  I do know that the surgeon told me that the damage to her gut is "extensive and serious". 

that is what I was getting at....could have been 400 for all you know!  she is healing, obviously.  testing in another 6 months should be interesting.

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Thanks everyone - we do buy from Superstore - and I checked - dedicated facility.  She is growing and gaining, and I suppose if her numbers were super high, then this is progress!  Such a frustrating (and scary) journey it's been.....

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