Jump to content

  • 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):

Biopsy Worth The Wait?

Bigc

Recommended Posts

Bigc Newbie
Bigc
Posted

So my blood test has come back negative but I have asked for a referral to a gastroenterologist. The only thing is is that it could take as long as a year to see them. My grandmother tested positive on her blood work and it even took eights months. Is it worth feeling like s$#& for an entire year just to have something confirmed that I already know is the problem for me?

Even if it was negative I would still go gluten free and have allergies to casein and gluten peptides tested anyway. Aside from reimbursement for my food and I guess an excuse to be so attentive and strict with my diet, is there a point?

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

Celiac.com Sponsor (A8-M):


IrishHeart Veteran
IrishHeart
Posted

A year??? :blink: Why is that??

Well, you seem to have answered your own question. :) You said you already know gluten is a problem for you and you would go gluten-free anyway even if the test were negative.

Would I eat a gluten filled diet for a year, waiting for a biopsy? Um, NO! IMHO

Dietary compliance is often an issue even for DXed Celiacs, believe it or not (people foolishly cheat all the time), so really it's up to you to stay off gluten if it is a health issue for you.

Some people really want a DX for a variety of reasons, but if you want to stop "feeling like s$#&"-- as you so aptly put it ;) --then why wait?

Welcome to the forum and jump right in --the water's fine! :)

Best wishes,

IH

Bigc Newbie
Bigc
Posted
  • Author

Yup sounds like I did. That's how the Canadian health care system is lol...

IrishHeart Veteran
IrishHeart
Posted

Yup sounds like I did. That's how the Canadian health care system is lol...

Ah, see I did not know that. A whole year huh??? Tragic.

Honestly, I did not wait for biopsy either. And my doc now does not want me to do a gluten challenge under any circumstances. I was dying for 3 years while waiting for a doctor to figure it out. (I did) He just shakes his head when I tell him about all of you on here --he is appalled at how many of us cannot get a simple DX so we can move on to healing.

Well, kiddo, there any many members on here from Canada. I wish you well and if there's anything we can help you with, we're here!!

Take care!

Bubba's Mom Enthusiast
Bubba's Mom
Posted

If you realize that gluten is causing you problems, I don't think I'd keep eating it? The amount of damage that could be caused in a year's time wouldn't be worth it to me!

eatmeat4good Enthusiast
eatmeat4good
Posted

I read about Celiac after being sick for literally years. I considered testing and biopsy for say um...24 hours. To me it wasn't worth the wait to get a Dr. appt a week away for a blood test and sure as heck would not wait a year for a biopsy. If gluten is a problem...get rid of it. I never have regretted that decision. I wish I hadn't even waited 24 hours to be honest!

love2travel Mentor
love2travel
Posted

Merry Christmas from a fellow Canadian. My wait was four months for my biopsies; however, I have waited 18 months to see specialists so I understand your frustration. I asked to be put on an emergency wait list and was called to go in a few days later. It didn't work as I was away but perhaps you could request it if you do live close to your health centre.

In Canada if you have an actual celiac diagnosis you can claim medical expenses (if that is applicable). My reason for having biopsies was to prove that I definitely had celiac - I did not want to wonder in the future. As I My doctor also wanted me to have a colonoscopy to rule out any other possible issues. Plus I did not feel ill eating gluten so it was no problem for me to eat it for four months. I needed the diagnosis to take it seriously. However, if I did get as ill as many on this board, I believe I would have thought differently.

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,084
    • Most Online (within 30 mins)
      10,442
    Melvac
    Newest Member
    Melvac
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...