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

So Confused About Results/endoscopy


SuzyQ2

Recommended Posts

SuzyQ2 Rookie

Hello,

I hope someone can give me some advice as I'm very confused. I had some blood tests done about 2 weeks ago which indicated positive for anti tissue transglutaminase. I was then referred to a gastroenterologist who performed an endoscopy this morning. He indicated to me that he could see no damage and that a number of biopsies have been taken.

So now I'm not sure what is going on? Does it sound likely that I don't have celiac disease? I just wish they could hurry up and provide me with a diagnosis so I can move on with my life!

Has anyone been in the same/similar situation that provide me with some advice?

Thank you


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



Celiac.com Sponsor (A8-M):



Roda Rising Star
Hello,

I hope someone can give me some advice as I'm very confused. I had some blood tests done about 2 weeks ago which indicated positive for anti tissue transglutaminase. I was then referred to a gastroenterologist who performed an endoscopy this morning. He indicated to me that he could see no damage and that a number of biopsies have been taken.

So now I'm not sure what is going on? Does it sound likely that I don't have celiac disease? I just wish they could hurry up and provide me with a diagnosis so I can move on with my life!

Has anyone been in the same/similar situation that provide me with some advice?

Thank you

I had a similar thing. My anti tissue transglutaminase was positive. Doc came out from my egd and told me that I had distal esophogitis and slightly abnormal small bowel. He said it really did not look that bad and would be suprised if it was celiac, but to wait on the biopsy results. The biopsy was positive. So that said, my understanding is that it is NOT that common to get false positive results on the blood work, but can get alot of false negatives. The biopsy can be subjective also. To accuratly diagnose celiac they have to look at the biopsy. Damage can vary (There is a Marsh Classification to describe the damage seen Open Original Shared Link. If the biopsy is interpreted as negative then you may not have enough damage to show or the the area that was biopsied did not show damage. (damage can be patchy). Hopefully you'll get the biopsy result soon. With positive blood work I would go gluten free anyway.

ang1e0251 Contributor

It's not that easy to have positive blood results so if you're positive, I would get on the diet right away. Even if the biopsy turns out to be negative, it could just mean they didn't hit the right spot in your small intestine to sample from. Positive bloodwork is pretty conclusive.

SuzyQ2 Rookie
I had a similar thing. My anti tissue transglutaminase was positive. Doc came out from my egd and told me that I had distal esophogitis and slightly abnormal small bowel. He said it really did not look that bad and would be suprised if it was celiac, but to wait on the biopsy results. The biopsy was positive. So that said, my understanding is that it is NOT that common to get false positive results on the blood work, but can get alot of false negatives. The biopsy can be subjective also. To accuratly diagnose celiac they have to look at the biopsy. Damage can vary (There is a Marsh Classification to describe the damage seen Open Original Shared Link. If the biopsy is interpreted as negative then you may not have enough damage to show or the the area that was biopsied did not show damage. (damage can be patchy). Hopefully you'll get the biopsy result soon. With positive blood work I would go gluten free anyway.

Hi there,

Thank you for taking the time to reply to me. I just wish they would hurry up with my test results as I really feel like my life is in limbo.

I've tried that link but it doesn't seem to be working - could you please check this for me as I would be interested in reading this article. Thank you so much.

Kind regards,

Sue

SuzyQ2 Rookie
It's not that easy to have positive blood results so if you're positive, I would get on the diet right away. Even if the biopsy turns out to be negative, it could just mean they didn't hit the right spot in your small intestine to sample from. Positive bloodwork is pretty conclusive.

I agree with you but why then does the doctor recommend a biopsy?? I just feel like this diagnosis is taking so long. It's on my mind everyday and I'm struggling with the whole waiting thing!

Anyway thank you so much for taking the time to reply to me.

Kind regards,

Sue

ravenwoodglass Mentor

Since your endo is done go ahead and start the diet. You don't have to wait for the results. Your body may give you the answer berfore you get the test results. False negatives are not uncommon so even if the results are negative give the diet a month or two at least.

JillianLindsay Enthusiast

I'm in the exact same boat! Blood test was high-positive for two different markers (waiting for a copy so I know the details), endo was "abnormal" but not an obvious celiac case and so the DR took a lot of biopsies. I find out on August 25th the results of those biopsies as well as a lactose intolerance test and HLA typing.

I went on the diet immediately after my biopsy anyway and have found a great improvement :) It doesn't hurt to give it a try -- as others said, if you have a positive diet response you may have celiac disease regardless of the endo & biopsy results.

Good luck!

Jillian

Hello,

I hope someone can give me some advice as I'm very confused. I had some blood tests done about 2 weeks ago which indicated positive for anti tissue transglutaminase. I was then referred to a gastroenterologist who performed an endoscopy this morning. He indicated to me that he could see no damage and that a number of biopsies have been taken.

So now I'm not sure what is going on? Does it sound likely that I don't have celiac disease? I just wish they could hurry up and provide me with a diagnosis so I can move on with my life!

Has anyone been in the same/similar situation that provide me with some advice?

Thank you


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



Celiac.com Sponsor (A8-M):



Roda Rising Star
Hi there,

Thank you for taking the time to reply to me. I just wish they would hurry up with my test results as I really feel like my life is in limbo.

I've tried that link but it doesn't seem to be working - could you please check this for me as I would be interested in reading this article. Thank you so much.

Kind regards,

Sue

I tried the link today and can not get it to work either. I read the article last night, but can't seem to find it again. Google Marsh classification/celiac disease and you will find some more articles.

SuzyQ2 Rookie
I tried the link today and can not get it to work either. I read the article last night, but can't seem to find it again. Google Marsh classification/celiac disease and you will find some more articles.

Thank you I shall try googling and see what comes up. I was talking to my husband last night about my symptoms etc and he said even though my endoscopy visually didn't show any problems, I've only had more severe symptoms for the last 2 months really so maybe it's not long enough to see any damage? And thinking back I didn't really eat alot of gluten before the two month period as I had been of a bit of a health kick. I don't know? Anyway I figured I'll keeping eating gluten products until I get my biopsy esults and if they are negative then go for another blood test?

I really don't know. I guess I'm hoping the biopsy results come back positive as at least then I have a diagnosis and can then adjust my diet.

Hopefully the results will be back next week.

Archived

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

  • 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 commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      3

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

    2. - trents replied to Matthias's topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    3. - Matthias posted a topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

    5. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,328
    • Most Online (within 30 mins)
      7,748

    VerafromNJ
    Newest Member
    VerafromNJ
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
×
×
  • 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.