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

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

  • 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. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      This article does not address migraines at all. Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines...
    2. knitty kitty
      - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      Excessive dietary tyrosine can cause problems. Everything in moderation. Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese. Sulfites cause a high histamine release. High histamine levels are found in migraine. Following a low histamine diet like the low histamine Autoimmune Protocol diet,...
    3. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit.
    4. Scott Adams
      - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."
    5. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,158
    • Most Online (within 30 mins)
      7,748
    MollyK
    Newest Member
    MollyK
    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

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      KAN-101 Treatment for Coeliac Disease

      By Scott Adams · Posted

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Body dysmorphia experience

      By Scott Adams · Posted

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
×
×
  • 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.