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2kids4me

Study Under Way In Calgary

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I received a package yesterday from the pediatric gastroenterolgy section at Alberta Children's hospital. They are contacting any families who have children diagnosed with celiac disease at the hospital between 1990 and now.

It is called: Clinical Presentation and Long term follow up of Celiac disease in children

from the cover letter:

..Currently there is little data on the symptoms of children with celiac disease in North America..... our aim is to describe the symptoms of celiac disease in children and learn more about the impact of celiac disease and its treatment on the child and their family...

There are a wide range of questions - including symptoms at presentation, other medical issues that have developed, psychological, and financial impact for the child and their family. They also have questions related to restaurants and travelling.

Glad to see they are looking at the whole picture and using the info to educate physicians about the variable symptoms in celiac disease.... that there is more to it than eating gluten free.

Sandy


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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I got the same package.

I wish there was a place to write notes. For example, Ty is answering the questions, but I'm filling out the answers and for things like teasing, etc. it doesn't say "do you teased about eating special food?" just "do you get teased?" Well, Ty wanted to put "sometimes" and I'm trying to tell him the question really means is he getting teased about celiac, not because he wore his shirt backwards or whatever.

Or where it asks about symptoms. Ty was asymptomatic, so if he's been getting cc we don't know about it, so how can I answer if his symptoms have improved when he never had any? I hate multiple choice on these things. I'd like these things to have essay answers. :P


Linda, Mom to Ty (11 years old)

Ty was diagnosed by blood test June 7/05

biopsy Aug 11/05, diagnosis confirmed Aug 18/05

Mom, Dad and big brother Celiac-free.

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The last page has a spot to add any additional notes and there is nothing wrong with adding a loose leaf page with notes and including it with the package when you send it back. I have done that before in similar questionares they have sent regarding diabetes or Kawasaki

They ARE interested in asymptomatic kids .... it helps them when they are working with such teens and have issues of non-compliance to the diet.

but I'm filling out the answers and for things like teasing, etc. it doesn't say "do you teased about eating special food?"

Those questions at the beginning are not specific to celiac or the diet - they are trying to determine the overall status of the child. For example - say a child answers - yes / a lot, to the question "Do you get teased"..then this child who is getting teased for whatever reason - has diffculty following the diet based on answers later in the questionare ...... then they could identify kids who are teased at being higher risk /requiring more support to keeping gluten free.

Am I making sense?

The questions on the inside of the front cover page are general ones - unrelated to celiac but the response will be used to see how those answers correlate to a child's response to celiac, diet compliance, etc.

It would hopefully then lead to doctors being more sensitive when the diagnosis is made and asking the child how life is "in general' and if teasing is a problem. Then lets say a parent asks "what has being teased got to with celiac"... to which the dr says " studies have shown that children subject to teasing are at higher risk of having difficulty adjusting to the diet"...


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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Aha! That makes perfect sense. This is our first study.

I'm bad for going page by page and then finding out on the last page I should have written my name down and that's all. That was the test.

If we can submit additional notes, I think that'll ease my mind a bit. It's like at the eye doctor...better or worse? better or worse? They're the same! (I'm so afraid of getting it wrong. :ph34r: )


Linda, Mom to Ty (11 years old)

Ty was diagnosed by blood test June 7/05

biopsy Aug 11/05, diagnosis confirmed Aug 18/05

Mom, Dad and big brother Celiac-free.

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Great to hear about this study.

I'm in Calgary and my 8-year-old tested positive in a random blood screen for celiacs. Seems one of the GI guys from the Children's was testing 1,000 vials of left-over blood for celiac disease. 15 children out of the 1000 tested positive.

I had requested a blood test for my daughter in summer 2006 as I thought she was not eating very well and might be anemic. And then in October I get a call out of the blue from my peditrician saying that she tested positive for celiac. Another blood test, also positive, biopsy scheduled for March 22.

She is pretty asymptomatic -- except for being very tiny (less than 3%ile for height and weight) and behavior at times. No classic symptoms. However when she was about 15 months she did have classic symptoms -- chronic diarrhea. I had her blood tested as we suspected celiac (my mom's one) but her bloodwork came back as borderline for malabsorption. My pedi had asked me to keep a food diary for her when she was 15 months and to also journal her stools. I had to do this for about a month, but after a few days I realized that stating her stool was greenish yellow, or yellowish green, didn't mean much. So I used paint chips to color code her poo! I have no idea if color of stools matters, but my pedi was so impressed with the process I used. Her diarrhea resolved itself after awhile, life went on and got busier with a couple more kids.

We were very surprised when we got the call this past October. The Children's seems to be quite progressive with respect to celiac disease. I haven't received a copy of the study, but perhaps she is not yet consider a celiac as we have not done the biopsy.

Mairin

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Dr. Butzner is a leading the pack for celiac in pediatrics. He has special interest. Just prior to my children being diagnosed in 2004 he had completed a study re: testing first degree relatives of any celiac patients. He also works closely with the endocrine clinic because of the increased risk of diabetes and hypothyroidism occuring with celiac. He made sure all family members were tested by bloodwork - which is how we found out Matt was celiac too ( he did not have "classic symptoms").

Sandy


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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My son is 2 and when we did the blood tests, we weren't told to put him on a gluten filled diet, so it came back negative. However, symptoms of sore tummy, runny poos, rashes and blisters and irritable behaviour tells me what I need to know. Tummy ache 24 hours after eating, rash 24 hours after that...it's a hard game to play, I reckon...

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