Blood test positive - long wait times for biopsy

[Bizorra]

My husband got back blood test results and the doctor says it points to celiac disease. I don't know exactly what was tested nor the numbers.  He's being referred to a GI but talking with friends the wait time can be very, very long before even getting an appointment, let alone the endoscopy. One friend waited a full year before getting the biopsy.  Others just didn't bother with the test.

 

Given this, would he be better off cutting gluten now and doing a gluten challenge before the endoscopy?  Or just continue business as usual until the procedure?  We were pretty surprised by the result as he doesn't have any of the symptoms I would have associated with celiac.

 

 

[ironictruth]

Personal choice. But it is a huge life restriction and blood tests can be inaccurate. Plus, if he continues to have whatever issues led to the testing to begin with you will never know what the official diagnosis is.

Where do you live that your friend waited a year? 

[GFinDC]

Hi Bizorra,

Welcome to the forum!

If he wants to get tested he needs to eat gluten for 2 to 4 weeks before the endoscopy.  However, it can be very unpleasant for person with celiac disease to go off gluten for months and then start back eating it for testing.  Not having symptoms now doesn't mean he won't have symptoms later.

I'd wait and talk to the gi first and find out when they can gt him in for the endoscopy.  If it is going to be a long time then it might be worth just giving up the idea of a formal diagnosis.  However if he doesn't think he can stay gluten-free without a formal diagnosis that's different.  Some people want the formal diagnosis to stiffen up their resolve to stay gluten-free.  Others don't need that.  IMHO it's easier to stay gluten-free if you have bad symptoms from eating gluten.

[Bizorra]

We live in Fort McMurray, Alberta. Its remote and there's only one GI. He should get a call this week to book the appointment and that will give us an idea of timeline... and we'll go from there.

[ironictruth]

45 minutes ago, Bizorra said:

We live in Fort McMurray, Alberta. Its remote and there's only one GI. He should get a call this week to book the appointment and that will give us an idea of timeline... and we'll go from there.

I gave up on local GIs and went for a 5 hour drive to a specialist.  mine is a long story, but you might want to trust me on the fact that if you're holding out on one local GI to give you The answers About you potentially having this disease you might be better off saving your time and money and driving to the University of Alberta. assuming they have a gastro doc there that could see you sooner.

[Jmg]

Just in regard to the symptoms heads experiencing, most people aren't aware of the different ways celiac can manifest, the more well my own gastro symptoms are actually in the minority. Check out this link Open Original Shared Link

 

if if possible he should stay on gluten till the biopsy, returning to it for a challenge can be unpleasant, far more so than staying on it in the first instance...

[Gemini]

I think if your husband failed multiple tests within the Celiac panel by high numbers, the biopsy is not needed. You should always have a copy of all testing to look at them yourself. If you want the biopsy, I would never wait a long time for one.  I would drive wherever I could and get one done sooner. Do you have access to a private doctor and would it be possible to pay out of pocket? It's amazing how quickly an appointment can be had and how reasonable the cost when cash is waved at them. I am not knocking your system, either.  It's the same in the States. We have longer wait times also, unless you are really sick and then you can go to the ER.  The wait times for gastro docs here is ridiculous and we have many of them.

Good luck with whatever you decide!

[Bizorra]

On 3/7/2017 at 11:03 AM, Gemini said:

I think if your husband failed multiple tests within the Celiac panel by high numbers, the biopsy is not needed. You should always have a copy of all testing to look at them yourself. If you want the biopsy, I would never wait a long time for one.  I would drive wherever I could and get one done sooner. Do you have access to a private doctor and would it be possible to pay out of pocket? It's amazing how quickly an appointment can be had and how reasonable the cost when cash is waved at them. I am not knocking your system, either.  It's the same in the States. We have longer wait times also, unless you are really sick and then you can go to the ER.  The wait times for gastro docs here is ridiculous and we have many of them.

Good luck with whatever you decide!

He has another appointment with his GP tomorrow... still no call from the GI.  He'll ask for a printout or whatever of the test that said he might have celiac.  Are there other blood tests he should request?  I'm assuming (based on reading) that the test he had was the transglutaminase antibodies test.  Any suggestions on what to ask at this stage is much appreciated!!  In the mean time I'm looking in to options to get the endoscopy sooner... but I think everywhere in Canada it's months long wait *sigh*

[Bizorra]

WELL.  COLOUR ME SHOCKED.  Endoscopy booked for April 7.  Looks like our little community got a second GI

[cyclinglady]

Yippee!  Glad to hear!  ?

[RMJ]

Yeah!  Make sure he eats plenty of gluten between now and then - perhaps his favorite breads, cakes etc in case he has to give them up afterwards.

[Bizorra]

He's planning the next 3 wks like it's his last meal *lol* I think I'll bake this weekend

[Jmg]

8 hours ago, Bizorra said:

He's planning the next 3 wks like it's his last meal *lol* I think I'll bake this weekend

If he ever needed an excuse for a burger, pizza, dessert or beer, now is the time! Given he doesn't experience classic celiac symptoms he could keep a food diary, just note what he eats, when and how he feels, leading up to the endoscopy, so that if he does then go gluten free that he can track any changes afterwards.

the reason for this is that if he then goes gluten free and continues the diary he can track over time what, if any changes he notes in how he feels. This is worthwhile because some of he effects can be quite subtle and difficult to spot, but once you know, they help keep you honest on the diet. 

 

 

[cyclinglady]

That was my strategy.  I ate all the gluten things I could get my hands on until my endoscopy (seven weeks, my choice due to work constraints).  Anemia was my only symptom at the time.  By the end of seven weeks, I could tell that gluten was my enemy as I slowly developed gut issues.  Maybe consuming a loaf of sourdough a day, not to mention all the other gluten foods I ate, was a bit much!  I kid you not!  I purchased every single item I loved.  For example, I did not eat an entire box of cookies, but gave away the balance.  I did eat that entire loaf of good bread!   I knew what going gluten free meant as my hubby had been gluten free for 12 years already!  

Take my advice.  Going overboard was probably not the best strategy, but his mileage may vary!