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Member Since 16 May 2012
Offline Last Active Oct 08 2013 04:34 PM

Topics I've Started

Help With Results...

07 February 2013 - 07:41 AM

Hello, My daughter is 2.5 and her big sister has Celiac (the only person we know of in our family).

She has had a couple of weird things happen.

1./ rectal prolapse several times over the last 8 months.
2./ Constipation since birth despite being breastfed exclusively for 8 months, and she still nurses.
3./ She has had ear pain, and loss of balance (were she just falls over). Going to ENT next week.

We were referred to Toronto's Sick Kids Hospital. They tested her for celiac and cystic fibrosis. Her results have come back negative (see below). I just feel like something isn't right. She has a HUGE HUGE belly but is just normal everywhere else - not skinny in the limbs. She seems really gassy too in comparison to my other daughter. She often gets dark circles.

Anyways that is just a bit of background. Wondering if anyone might have some thoughts on her results, as I know they can me inaccurate for a 2 year old.


"The sweat chloride is negative (<10). Her vitamin D is low (68). She should take daily supplementation consisting of 600 IU daily. Her TTG is negative; IgG 1 and IgA 0.

I hope this helps. Her hemoglogin is ok, iron slightly low, 6, but her MCV is 84, so nothing to do right now about that. Her ESR is elevated at 21 (1-10), however, it does not indicate anything specific. It is an acute phase reactant, which means if she was getting over something, coming down with something, it would be reflective."

So what do we do going forward? Test her every year? I found it really hard to get her gluten into her everyday since we now have a gluten-free house. I wish they would do the gene test so we at least know if she is a carrier.


Diet When First Going gluten-free For A Very Sensitive To Cc Child

16 January 2013 - 05:20 AM

My daughter has been gluten-free after being diagnosed with Celiac in early October. Not sure if it matters but her Marsh score was 3B. Anyways after a HORRIBLE first month with really bad withdrawal symptoms we have seen big improvements. However it seems like she is really sensitive to CC. Our whole home is not gluten-free and we got rid of a lot of things (like the toaster etc). She goes to my mom's once a week for dinner and my mom is super vigilant. At daycare (2 times a week) she only has rice and her own snacks.

She keeps getting tummy aches and having gluten-tantrums. It is so obvious when she is glutened. The thing is I feel that we are SO careful yet this still happens at least once a week.

Does anyone have suggestions? Is there a super safe diet we should be following for a while?

Any input would be much appreciated.

So Frustrated... Daughter Keeps Getting Glutened.

15 January 2013 - 07:55 AM

My daughter is 5 and has been diagnosed with Celiac recently. She has been gluten-free for 2.5 months. The first month was so horrible. She was having meltdowns everyday and her behaviour was just out of control. She likes the gluten-free diet and had no problems cutting it out.

Since November she has been getting better and better and her moods have really improved. Before she was diagnosed she had a lot of weird meltdowns and behaviour that didn't make sense. Now whenever she gets agitated she will almost always complain of a stomachache, so we have to assume she has been glutened.

Our home is 100% gluten-free. She goes to a home daycare twice a week and the woman is really careful and only feeds her rice with basil, raisins etc (no "seasoning" etc). I supply snacks and her own peanut butter etc. I think she might be getting glutened at daycare.

As well my mom watches her one night a week and she seems to get glutened everytime she goes there. My mom is very careful and very well read but her home is not gluten-free.

I just feel so frustrated. We are so careful... but I am starting to wonder if my daughter is extra sensitive. She once had a smoothie from Tim Hortons and got a really bad stomachache right after. Could a crumb of gotten in and set her off? Her blood test results were very high apparently and her Marsh score was a 3B. Just sharing incase this gives some background.

Has anyone been through something similar? Any suggestions? Do I just stick with making her extremely safe foods for a month... 2 months?

On top of all this my 2 year old has been having a rectal prolapse and is on laxatives for months until her rectum can heal. She is also getting the celiac blood test in a couple weeks.

Just feeling really overwhelmed.

Thanks for the support.

Worse Tummy Aches Now Gluten Free?

13 October 2012 - 04:16 AM

My 5 year old daughter had an endoscopy just under a month ago (which confirmed celiac). That day we went gluten-free. The first week she was super cranky and we thought maybe it was withdrawal but looked forward to her feeling better... especially her moods. It feels like things have only gotten worse since going gluten-free. How is that possible?

Last night for example she woke up kicking and screaming. Turned out her tummy was hurting so badly, for a while I started worrying it was her appendix. It seems like in the last 2 weeks she has been getting "stingy" tummy aches. At first I thought it could be from milk but I am not so sure. Yesterday she had no milk. She DID have a chili from a restaurant, that was supposed to be gluten free but I suppose there is no guarantee a crump didn't get in there.

Is it possible that after being gluten-free for such a short time her reactions could get worse so quickly? I am not even convinced that she has been 100% gluten-free. We did a big clean out and have made our house gluten-free. Got a new toaster... cleaned all the cupboards etc. However I have found a few things that we missed.

I am feeling really overwhelmed. I thought it would be a lot easier and that we wouldn't be just a couple weeks in and be having these kinds of issues.

I would love and thoughts or feedback. Did anyone go through something similar?

Many Thanks.

How Long Until You Can Tell If You Have Been Glutened?

14 September 2012 - 01:41 PM

My daughter had her scope yesterday so we are one day in to being gluten-free. Right now she has had intermiten stomach aches etc. She gets very agitated too.

I am wondering how long after going gluten-free is it before you started really being able to notice if you ate something with gluten.

I have read about some people being sensitive to Chex (even though they are supposedly gluten-free), or to gluten-free oats. I guess I am wondering when we will be able to see if those are an issue for my daughter.


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