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

Preparing for EGD and Celiac biopsy.

AhhhNold

Recommended Posts

AhhhNold Rookie
AhhhNold
Posted

I'm 3 weeks away from my EGD and Celiac biopsy. I wish it was tomorrow. I started having stomach pain a few months back, had ultrasound, Bloodwork, H-Pylori test. Ultrasound normal, blood work normal, H-Pylori test negative, diagnosed with gastritis and given Nexium. It went away completely for about 3 weeks then came back with this constant belching, when I say constant I mean like sleeping 2 maybe 3 hours at night, the stomach pain would kinda come and go but the belching was non stop. Finally got referred to a GI specialist. While waiting on my appointment I decided to see if it could be an intolerance. First went dairy, no help. Then finally gluten. Within a week I was much better. Finally relief. I saw my doctor told him the diet was helping, he ordered an EGD and Celiac biopsy. But since I saw him a week ago I feel like I'm getting worse again. So yesterday I ate gluten free waffles and had a horrible day, so much gas and belching all day. I couldn't understand, so I looked at the box and found it's got soy. I read that people who have Celiac have trouble with soy as well. So today I've been, gluten, dairy, and soy free which mean I can't eat crap. But I've felt much better today than yesterday. In the mean time I'm curious, when they go in with the scope and do the intestinal scrape for the biopsy, how long do you have to wait for results? I'm so ready to do these tests and get some answers.

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

Celiac.com Sponsor (A8-M):


GalaxyDuster Apprentice
GalaxyDuster
Posted

Hi Ahhhnold (is that like Shwartzenegger?! :D ), I am also waiting for my endoscopy. In the meantime, the people on this message board suggested that I request the celiac antibody panel to be drawn. Do you know if that was included in your blood work? If not, you can ask your primary care doctor to order it while you wait. That might shed light on just what's going on in your body. I had mine drawn yesterday and am waiting for the results, but they typically can be back within a few days. Why not give it a try?

tessa25 Rising Star
tessa25
Posted
56 minutes ago, AhhhNold said:

So today I've been, gluten, dairy, and soy free which mean I can't eat crap. But I've felt much better today than yesterday. In the mean time I'm curious, when they go in with the scope and do the intestinal scrape for the biopsy, how long do you have to wait for results? I'm so ready to do these tests and get some answers.

Unfortunately you need to keep eating gluten until all celiac testing is complete.

 

AhhhNold Rookie
AhhhNold
Posted
  • Author

If I was the big guy, there's no way I would have to wait 3 and a half weeks for a test lol. My GI doc never recommended the antibody test. He said doing it with the scope was the only sure way to know. Does anybody know if I should eat a little gluten the day before my test to see if I will get an accurate enough test? Or will it not matter, once the damage is done it's done?

tessa25 Rising Star
tessa25
Posted

You have eat gluten every single day until after testing. And the celiac blood test is supposed to be done as well.

 

cyclinglady Grand Master
cyclinglady
Posted

Learn more about testing for celiac disease here:

Open Original Shared Link

You do have to be on a gluten diet for ANY of the celiac tests (blood and biopsy) to work.  While the endoscopy (with biopsies) can reveal villi damage, many other things besides celiac disease can cause villi damage too:

Open Original Shared Link

So, both the blood test and endoscopy are usually ordered.  There are some exceptions, but those are not common.  

AhhhNold Rookie
AhhhNold
Posted
  • Author

I'm still really new to all this but is it common to have trouble with sleep? I swear since my symptoms got really bad a few months ago I can't get 1 good nights sleep, like a 5 hour stretch is doing real good. Wake up at 3am wide awake almost every night. Told my doctor and they've recommended melatonin, that doesn't work. Tried chamomile and lavender tea, no help. Tried zzquil, that will knock me out but maybe for like an extra hour then I'm really drowsy the next morning from it. I don't know what to do.

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted
10 hours ago, AhhhNold said:

If I was the big guy, there's no way I would have to wait 3 and a half weeks for a test lol. My GI doc never recommended the antibody test. He said doing it with the scope was the only sure way to know. Does anybody know if I should eat a little gluten the day before my test to see if I will get an accurate enough test? Or will it not matter, once the damage is done it's done?

Celiac disease is an autoimmune disease that happens to have a known trigger -- gluten.  Flare-ups develop  (antibodies) causing damage. Not just in the small intestine, but systemically.  One gluten exposure can cause antibodies to increase for days or months!   Antibodies are being measured during the celiac blood tests.   If there is no gluten exposure, there will be no antibodies.  These antibodies can come down in some people in as little as two weeks.  Recommendations require gluten 2 to 4 weeks daily for the biopsies taken via endoscopy in order to be sure to catch damage, but 8 to 12 weeks for the blood tests.  

The endoscopy is considered the "gold standard" in helping to diagnose celiac disease, but there are other things that can damage the small intestine.  So, the blood test helps solidify the diagnosis.  

So, if you want a good result on your endoscopy, you need to be eating gluten daily for two week prior at a minimum.  I know it is tough and you are feeling sick.  Wish there was a better way to catch active celiac disease.  

 

AhhhNold Rookie
AhhhNold
Posted
  • Author

Called my GI doctor today to make sure he is going to look at my small intestine and do biopsy for Celiac for my EGD and he is. Thanks for the tip everyone about have to start eating gluten again. The office told me to break my gluten free diet and start eating gluten everyday until my EGD. Here's to being miserable again for a few weeks ???

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. knitty kitty
      - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      25

      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,...
    2. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      25

      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.
    3. 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."
    4. 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...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      2

      Heat intolerant... Yikes

      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium. Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,151
    • Most Online (within 30 mins)
      7,748
    Travis25
    Newest Member
    Travis25
    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

    • 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.
    • Scott Adams
      Heat intolerant... Yikes

      By Scott Adams · Posted

      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
×
×
  • 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.