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Positive Blood Panel And Canadian Wait Times

hawaiimama

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hawaiimama Apprentice
hawaiimama
Posted

I'm new here. I've had a postive blood panel for celiac and the doc says I have it. One of the antibody tests was suppose to be less than 20 (he said it shouldl be close to zero) and mine was 74. He's sending me to a GI guy for a biopsy. I am in canada and I KNOW its going to be MONTHS to get into the GI guy. I'd guess at least a year. I really think I should just go for it and go gluten free as per the doc but I've been getting conflicting info from fellow celiac friends. Thoughts? I've had very few symptoms, my primary one is the horrid iron issues and the inablity to consume salad (gives me D).

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aikiducky Apprentice
aikiducky
Posted

If you go gluten free now, you risk a false negative on the biopsy, so if it's very important to you to get a clear diagnosis that a doctor can put his name under, don't go gluten free yet.

What you could start with is to find out exactly how long it's going to be? And if it's possible to get a cancellation time or something? And then when you know that, have a think about how you want to proceed.

Pauliina

hawaiimama Apprentice
hawaiimama
Posted
  • Author

I know it will be MONTHS. Its a given. My friend went to see a GI guy and the wait was over a year. I'll call next week and try and prod it along.

If you go gluten free now, you risk a false negative on the biopsy, so if it's very important to you to get a clear diagnosis that a doctor can put his name under, don't go gluten free yet.

What you could start with is to find out exactly how long it's going to be? And if it's possible to get a cancellation time or something? And then when you know that, have a think about how you want to proceed.

Pauliina

elye Community Regular
elye
Posted

Where in Canada are you? I got into the GI six weeks after the positive blood panel, and I'm in Ottawa. You know, a little creative lying, I am certain, can help at times. When you call the GI's office, they will be much more apt to hurry you in if you tell them that you have horrendous symptoms - - don't be specific - - and that you absolutely NEED to get the biopsy done. You aren't exactly lying......anemia is a tough thing! :)

You know that you have the disease. The endoscope could reveal no damage, even if there is damage there...you've got 22 feet of lower intestine, and bits of flattened villi could be in small spots anywhere along it. It can be easy to miss.....

If you need this "clinical" diagnosis for insurance or job-related issues, I guess you'll have to get it done. But if it's simply to convince yourself, you've already got your answer. You may not yet have the damaged villi, but if you continue eating gluten you almost certainly will, eventually.

Good luck! :)

AndrewNYC Explorer
AndrewNYC
Posted
I'm new here. I've had a postive blood panel for celiac and the doc says I have it. One of the antibody tests was suppose to be less than 20 (he said it shouldl be close to zero) and mine was 74. He's sending me to a GI guy for a biopsy. I am in canada and I KNOW its going to be MONTHS to get into the GI guy. I'd guess at least a year. I really think I should just go for it and go gluten free as per the doc but I've been getting conflicting info from fellow celiac friends. Thoughts? I've had very few symptoms, my primary one is the horrid iron issues and the inablity to consume salad (gives me D).

Make a run for the border. Dozens of GI's in Detroit, Rochester and Seattle would love to scope you for a $1000 (USD).

hawaiimama Apprentice
hawaiimama
Posted
  • Author

I'm in toronto. I don't need the biopsy for any reason other than the doc said I needed one. He went on to say even if its negative you still have to eat gluten free and don't listen to anyone who tells you elsewise. So i pretty much feel, well what is the point. I'd prefer not to have one because I've had horrid experiences with sedation/anastesia (sp?) in the past. Yes anemia is a horrid thing, especially when you've had it for 13 years and been told its because you've had three kids and your tired because you have three kids. My SIL (a doc) said go gluten free and have biopsy but everyone here seems to think that is pointless (my doc said same thing).

Where in Canada are you? I got into the GI six weeks after the positive blood panel, and I'm in Ottawa. You know, a little creative lying, I am certain, can help at times. When you call the GI's office, they will be much more apt to hurry you in if you tell them that you have horrendous symptoms - - don't be specific - - and that you absolutely NEED to get the biopsy done. You aren't exactly lying......anemia is a tough thing! :)

You know that you have the disease. The endoscope could reveal no damage, even if there is damage there...you've got 22 feet of lower intestine, and bits of flattened villi could be in small spots anywhere along it. It can be easy to miss.....

If you need this "clinical" diagnosis for insurance or job-related issues, I guess you'll have to get it done. But if it's simply to convince yourself, you've already got your answer. You may not yet have the damaged villi, but if you continue eating gluten you almost certainly will, eventually.

Good luck! :)

betty6333 Newbie
betty6333
Posted

hi, i agree with the above posters. if you understand that you must go gluten free for life (meaning never questioning the dx) the save yourself the hassle and skip the biopsy and just get healthy. if you want the biopsy for any reason (work or you are not sure or what ever) then get the biopsy. if you go gluten free you are wasting your time and energy and money (even if only gas money) to get a biopsy and you might be falsly told you don't have damage when you do from eating gluten.

I got a biopsy for my 6 year old because i can't have him questioning his dx in 6 years and wanted the picture of the damaged villi so when he says "are you sure? " I can say here's your results and your picture. it won't stop him from rebelling if he wants, but he won't be able to say he wants a gluten challenge b/c he already had the stuff done, no ambiguity or questioning or trying to say he was mis -dx'ed..... gluten free is an enormous challenge and lifetime is a long time to do it, so you do what is best for you.

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hawaiimama Apprentice
hawaiimama
Posted
  • Author

I was just expalining that to DH that having the kids biopsied would be a good thing for later on with them if they test postive on blood work. My doc said, you have antibodies on the bloodwork, you have it regardless of what GI doc/biopsy says. My head is still reeling from my bloodwork being positive but it def ties all the wierdo things I have together in a nice little package.

  • 3 weeks later...
hawaiimama Apprentice
hawaiimama
Posted
  • Author

much to my shock and amazement, I have an appt for the biopsy next thurdsay. I somehow got bumped to the top of the list without even asking. Yee Haw

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