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Si & Ash's Mom

Member Since 14 May 2013
Offline Last Active Jun 11 2014 12:51 PM

Posts I've Made

In Topic: How Long Do You Need To Be Off Steroid Meds To Get Accurate Blood Test?

07 June 2014 - 03:13 PM

It is likely the steroids that would affect the test are going to be ones you take orally, such as prednisone or other oral corticosteroids.  Inhaled/sprayed corticosteroids like nasal sprays and breathing medicines are not going to have nearly as much effect on the body systemically.  Those can be used continually without the classic long term side effects of the orally taken drugs which are much higher dosage. I would not worry about discontinuing use of a nasal spray.


If someone has a condition where they have been on oral steroids such as prednisone, for a long time, then they would need to look into the possibility of a false negative on the blood tests.  Even in that case, because oral corticosteroids are not something you can abruptly discontinue, it is likely the test would still be done.  Then if it is borderline negative/negative, the possibility of a false negative can be looked in to.



I'm with Laura. I think they mean the kind you take orally for a long time.



This is what I was thinking too.  


Inhaled steroids are at a MUCH lower concentration for sure. Our Dr. said a 5 day course of oral steroids was about equal to a YEAR on inhaled. They are more targeted and though they would enter the blood stream it wouldn't be in very large doses at all.  


I would call your Dr. for clarification. If they don't know then perhaps they can consult with someone who would know.

Thanks folks! He's already been off the nasonex for 3 weeks anyway so we went and had his blood drawn today. I think it makes sense that they would be referring to oral steroids that had been taken for a long time. I appreciate all your knowledge and insight!

In Topic: Dr Won't Test Me For Celiac Because I Don't Have "classic" Sy...

05 June 2014 - 09:06 AM

I'm sorry you're having such a tough time getting a doctor to help you. Is it a possibility to go to a walk in clinic and ask a random Dr. there if they'll test you?

I am in Alberta - thankfully the ttg iga test is covered by Alberta Health and my doc was willing to send me for it. Unfortunately if that one test comes back negative (as mine was) then you're screwed because that's the only celiac test the labs run (unless your ttg iga is high - then they'll also run the ema iga as well). We have no antigliadin iga or igg, no ttg igg, no dgp tests - nothin'. If you're willing to drive over the border and pay for tests out of pocket, you may have more luck having the tests run in the states. They seem to run a lot more of these blood tests then they do here in Canada. At least then you'd know you had a complete celiac blood panel done. 

And if all that fails, you may have non-celiac gluten sensitivity. Symptoms are just as real as celiac symptoms but without the proof! Hang in there - I hope you are able to get some answers. :)

In Topic: How Long Do You Need To Be Off Steroid Meds To Get Accurate Blood Test?

05 June 2014 - 08:53 AM

I wasn't aware that you had to be off steroids for blood testing. Did you ask the Dr.?

No, I can almost guarantee that my doctor would have no idea that steroids can cause inaccurate results. I only knew because of these forums. The lead celiac researchers do acknowledge that steroids are a no-no though. Still, I can't seem to find any info on how long one must abstain from steroids... 



In Topic: How Long Do You Need To Be Off Steroid Meds To Get Accurate Blood Test?

05 June 2014 - 06:05 AM

I take something similar, and really feel my allergies galloping back in just a week, yet it takes a good six weeks to really take hold...you will need to call your pediatrician to find out how long your son's medication takes to get out of the body...it may have a higher half life than mine does.


Just be ready for a heavy eyed snuffly and miserable boy in the interim. 


My heart goes out to him, and you.


Good luck on the testing.

Thanks so much for responding. I'm sorry you struggle when off your meds too. Not fun at all! My son has already been off of the nasonex for 3 weeks and he's a congested tired mess! It's amazing how much better he sleeps when he takes it... I really don't like him being on meds but his quality of life is just so greatly improved.

Looking up online it says that the plasma elimination half-life of nasonex is 5.8 hours... I'm guessing that doesn't mean it's fully out of his system though. I'll ask the doctor. 

Thanks again for your advice. All the best to you :)

In Topic: Does The Aga Igg/iga Blood Test Tell You Anything?

07 April 2014 - 08:48 AM

Yeah, I went on Hormone replacement to stop my 30 day periods that dropped my hemoglobin levels so low that I could not breathe well. It worked (and I did not need a hysterectomy that my GYN. Was hoping for!) I took iron and then my ferritin level increased to just within the normal range. Hemoglobin always is just below range due to genetic anemia. A year later, I officially went through menopause and my ferrtin dropped again. That is when the GI caught the celiac disease. I was in for a routine colonoscopy. He ordered the blood tests and added an endoscopy along with my colonoscopy.

Wow - yeah, low iron after menopause is certainly a red flag! I'm sorry it took so long for you to get a diagnosis but I'm glad they figured it out :)


Maybe he could at least peek at your terminal ileum during your colonoscopy? Worth an ask? I hope you find an answer.


Yeah, I will definitely ask! It couldn't hurt. Thanks so much :)

You could try the AGA tests but the only result you can be sure is accurate is a positive; the negatives could be a false negative.... You never know.

Is it possible to get the endoscopy done at the same time as the colonoscopy? A few have had it done that way but I am not aware if they do it that way out here. I never saw a GI ( the wait time was crazy) so I don't know.

I suppose you could ask if they could run the DGP tests and send it to an out of province lab. I know someone who had tht done for a different test, so it can be done.

Hang in there. I know it is super frustrating.

Thanks - my regular doctor really didn't think an endoscopy was warranted at all so I'm not sure how much help he'll be. Since he's willing to send me for a colonoscopy though I could just take my chances and hope the GI is more willing to look for possible celiac damage. And maybe he'd look into out-of-province DGP testing, if only to shut me up! Lol! Thanks so much for the suggestions. I will certainly look into it. 

All the best to you all!