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

Advice For Upcoming Gi Appointment

lalalove

Recommended Posts

lalalove Newbie
lalalove
Posted

Hello!

 

UPDATE: My original appointment has been moved from June 15th to Thursday May 7th so I am able to see the GI I was hoping to see :) Crisis averted - but I would still love to hear feedback from my questions below just in case!

 

I saw my physician back in December about fatigue and digestive issues I had been experiencing for years. I had a blood test for Celiac and received confusing results that stumped her and her colleagues, so she referred me to a GI. Unfortunately, there was a six month wait (I'm in Canada) to see the GI, and that appointment is not until Mid-June. I spoke with my physician about the wait times and she managed to find me an appointment for this upcoming Monday for a different specialist at a different clinic.

 

I googled the specialist and read some reviews on him. The reviews are mixed (kind of typical for Canadian doctors), but a lot of them say that he dismisses a lot of complaints as IBS which makes me nervous. I think I'm really going to have to urge him to allow me to get blood work redone as well as an endoscopy so that I can confirm if I have celiac or not.

 

I guess I'm just wondering if it's possible for him to overlook signs when performing the endoscopy? I absolutely will make sure I get all necessary scientific tests done but it's his conclusion (or potentially misinformed opinion) that I'm worried about...I have found that with some issues it doesn't really matter if the doctor is great or not because results are results, and I just wonder if that's the case with celiac testing? I'm the type of person who needs to be confident with results or else I worry/obsess.

 

I'm going to hold onto my June appointment until I see how this doctor handles my case because the reviews have me paranoid? The doctor I am seeing in June has no online reviews at all (but is at Women's College Hospital) so I don't even know what to expect there.

 

Anyway - any feedback would be great! 

 

Thanks :)

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

It sounds like you have been doing research. Are you still consuming gluten? That is critical for testing.

lalalove Newbie
lalalove
Posted
  • Author

It sounds like you have been doing research. Are you still consuming gluten? That is critical for testing.

 

Haha yes I am notorious for over-researching. But yes I have been consuming gluten! I posted an inquiry here after my first blood test results and I received a lot of feedback that I should continue to eat gluten up until my specialist appointment :)

cyclinglady Grand Master
cyclinglady
Posted

Just remember that during an endoscopy damage is often not seen. That's why they take about six biopsies in various areas.

I would keep that June appointment as extra insurance!

Getting a firm diagnosis was important for me. Anemia was my main symptom and I could not believe that both my husband and I would have to be gluten free. What are the odds? No matter what happens, I would recommend going gluten free after all testing is complete for at least six months. You might be surprised how much better you will feel.

lalalove Newbie
lalalove
Posted
  • Author

Just remember that during an endoscopy damage is often not seen. That's why they take about six biopsies in various areas.

I would keep that June appointment as extra insurance!

Getting a firm diagnosis was important for me. Anemia was my main symptom and I could not believe that both my husband and I would have to be gluten free. What are the odds? No matter what happens, I would recommend going gluten free after all testing is complete for at least six months. You might be surprised how much better you will feel.

 

That's a good point. :) I am also going to ask for my blood work to be redone to see if there were any false negatives/false positives in my initial sample, as my results were mixed and abnormal. It is probably a good idea to eliminate the gluten as a test once all my doctors appointments are completed.

 

Everyone has different symptoms, it's quite bizarre! 

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):


  • Who's Online (See full list)

  • 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.