Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Blood test positive - long wait times for biopsy

Bizorra

Recommended Posts

Bizorra Newbie
Bizorra
Posted

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.

 

 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ironictruth Proficient
ironictruth
Posted

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 Veteran
GFinDC
Posted

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 Newbie
Bizorra
Posted
  • Author

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 Proficient
ironictruth
Posted
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 Mentor
Jmg
Posted

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 Experienced
Gemini
Posted

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Bizorra Newbie
Bizorra
Posted
  • Author
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 Newbie
Bizorra
Posted
  • Author

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

cyclinglady Grand Master
cyclinglady
Posted

Yippee!  Glad to hear!  ?

RMJ Mentor
RMJ
Posted

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 Newbie
Bizorra
Posted
  • Author

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

Jmg Mentor
Jmg
Posted
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 :D

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 Grand Master
cyclinglady
Posted

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!  

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Rogol72
      - Rogol72 replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying...
    2. Scott Adams
      - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin. In the early 1900s, refined white flour replaced whole grains, and people began...
    3. Scott Adams
      - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted...
    4. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      CT with contrast.

      Thank you.
    5. deanna1ynne
      - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased int...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,441
    • Most Online (within 30 mins)
      7,748
    Linda Boxdorfer
    Newest Member
    Linda Boxdorfer
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rogol72
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
    • Scott Adams
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.