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Mom2twins

TracyB

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TracyB Apprentice
TracyB
Posted

Hi Mom2Twins,

I'm in Calgary - I hope to be seeing my Dr. today - can phone at 9:00 for same day appts. - I posted earlier regarding this appt. today and how to go about asking for the testing.

I've had IBS (apparently) since 3 years old - and this is probably the 3rd time I've revisited the celiac possibility. I've also poo-poo'ed it because I'm not underweight (and since having my 3rd baby 3 years ago, I'm overweight in fact!).

What sort of tests did you have - do you know much about the blood panel and does it have a reputation here in Canada for being unreliable? (mind you, that is hard for you to say I suppose, since yours was positive...).

The reason I am finally going to the doctor is because I have learned that you don't have to be underweight to have celiac - but mostly because of my son who was diagnosed with ADD/Inattentive type about a year ago and even on meds is still struggling. I want to know because I have read about the possible link between learning disabilities and poor focus and gluten intolerance. In my search for knowledge on the subject I came across articles by a man named Hoggan - Frank? He happens to teach here in Calgary, is a celiac and had an undiagnosed mother with celiac who was overweight and could never get "full" - he watched her suffer all her life and when he found out he had celiac he insisted she get tested - sure enough she has celiac.

In short, I'm sick of being sick and def. sick of D! But mostly, if I know I have a celiac or am even gluten intolerant than maybe I can change my son's life....

Thanks,

TracyB

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Mom2Twins Rookie
Mom2Twins
Posted

Hi Tracy! I'm in Calgary, too, funnily enough.

I am new to the forum, and new to celiac, but I do consider myself to be an uber-researcher :D so I'll answer your questions as best as I can. I'm sure someone else will reply as well.

As far as the weight issue goes - I've been overweight my whole life, since I was a toddler. I've yo-yo'd back and forth, and actually lost most of my excess weight before I got pregnant, but I am currently still overweight (trying to lose the pregnancy weight). Soooo.... in my case, yep, you don't have to be skinny to be a celiac. :P

I am very lucky, and I have a very good diagnostician as a doctor - I just switched to him after my babies were born. I never even suspected (or knew much about) celiac. Although looking back, I assumed I had IBS beginning about 10 years ago, and I've been anemic most of my adult life. When my post partum anemia didn't correct itself, he ran the tests for celiac. The basic panel is Canada is IGA and TTG. If the TTG is positive, they run the EMA. I believe that the Calgary Laboratory Services are quite reliable.

My understanding is that these tests are very good at picking up full blown celiac (if the villi are flattened) - but they aren't intended to detect gluten intolerance. I don't know much about the gluten intolerance question - someone else could probably better answer that one. Basically, if you're positive for the blood panel, it's very likely you have celiac, but if you're negative, you could still have issues with gluten.

One more thing - if you do test positive, they will want to do a biopsy. Be prepared for a wait! I had my blood panel done in May, and I just had my biopsy done October 2. They have a LONG waiting list to see the GI's.

Hope that helps!

Sue

.

..

Rondar2001 Apprentice
Rondar2001
Posted

Hi, I am also in Calgary. My husband finds out his blood results on Friday so I should have a better idea of the adult wait times after that (we fully expect it to come back positive).

For my daughter, she had the blood work come back positive in March, run by her pediatrician. After this we had a consult with a specialist at the Children's Hospital and had the biopsy in early May (this was positive as well).

We were able to push the appointments along by asking to be put on the cancellation list and ended up having our first consult a week after her referral went through.

Good luck with your testing and I hope it isn't too long for you.

TracyB Apprentice
TracyB
Posted
  • Author
Hi Tracy! I'm in Calgary, too, funnily enough.

I am new to the forum, and new to celiac, but I do consider myself to be an uber-researcher :D so I'll answer your questions as best as I can. I'm sure someone else will reply as well.

As far as the weight issue goes - I've been overweight my whole life, since I was a toddler. I've yo-yo'd back and forth, and actually lost most of my excess weight before I got pregnant, but I am currently still overweight (trying to lose the pregnancy weight). Soooo.... in my case, yep, you don't have to be skinny to be a celiac. :P

I am very lucky, and I have a very good diagnostician as a doctor - I just switched to him after my babies were born. I never even suspected (or knew much about) celiac. Although looking back, I assumed I had IBS beginning about 10 years ago, and I've been anemic most of my adult life. When my post partum anemia didn't correct itself, he ran the tests for celiac. The basic panel is Canada is IGA and TTG. If the TTG is positive, they run the EMA. I believe that the Calgary Laboratory Services are quite reliable.

My understanding is that these tests are very good at picking up full blown celiac (if the villi are flattened) - but they aren't intended to detect gluten intolerance. I don't know much about the gluten intolerance question - someone else could probably better answer that one. Basically, if you're positive for the blood panel, it's very likely you have celiac, but if you're negative, you could still have issues with gluten.

One more thing - if you do test positive, they will want to do a biopsy. Be prepared for a wait! I had my blood panel done in May, and I just had my biopsy done October 2. They have a LONG waiting list to see the GI's.

Hope that helps!

Sue

.

..

Hi Sue - funny you're in Calgary too!

I did see my doctor yesterday and she was great - I think she feels I may not be celiac (which is fine by me!) but was willing to have me tested all the same. From what I found out, even if the bloods come back negative, a biopsy can still be done based on clinical evidence.

I had a feeling I'd be waiting a looong time to see a GI; our medical coverage is def. great in Canada, however the waits can be ridiculous to see a specialist! (Off topic, but I had to have an MRI on my neck this year and I was in in less than 2 weeks! I thought for sure it would be months...)

I think for people that are overweight and being shooed out of their doctor's offices because the doctor doesn't feel they are a "classic" celiac example - you'll likely be able to help a lot of people be diagnosed. I just replied to a post in here about the exact subject - she seems to have all the symptoms, and relatives with celiac, but a doctor who told her that she'd be a lot sicker if she had celiac (another doctor who doesn't really understand celiac I guess).

You have twins! That must be fun...! I have 3 kids, 17, 14 and 3 - I'm a bit older than you! LOL

Thanks so much for the reply - I'll get my tests done this week, along with my son...

TracyB

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