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 Results - Should I Be Nervous?


WinterSong

Recommended Posts

WinterSong Community Regular

Hi,

I've already been diagnosed with Celiac based on a "very positive" blood test. The doctor says there's no doubt about it. I got my endoscopy done last week, and he said that I show all of the internal signs of Celiac. So I basically know that I have it. I'm now gluten-free and feeling much better.

I have an appointment with my doctor to go over the results next week. My question - knowing that I have a diagnosis, is there anything else I should be nervous about when I have my meeting with him? Are there any other complications he may be able to tell me based on my biopsy results?


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



Celiac.com Sponsor (A8-M):



RyanP Newbie

Welcome to the club! (Ok, so it's not always the most FUN club...) but the good news, as you are already finding out, is that you are going to start feeling a lot better!

I wouldn't be overly concerned about finding other things wrong when you get your biopsy results. The doctor will typically take biopsies from other locations while doing the endoscopy. Usually your lower esophagus and stomach in addition to the upper part of the small intestine (which is where Celiac will show up). Things that commonly show up there are some swelling in your esophagus due to chronic heartburn (if you're prone to that), or overall swelling of the stomach. There are some other scarier things, but these aren't really related to Celiac.

In all likelihood, your doctor wants to discuss the results in person because this is a conclusive finding that requires some major life changes. He/she will hopefully fill you in on the overall findings from the endoscopy, tell you (again) about celiac, and talk about what the next steps are. (Thats how my post-test appointment went down anyway.) More than any of that though, they will want to answer any questions you have. (Which if you're like me, you will forget or not be able to think of on the spot like that.)

Good luck, and enjoy your recovery!

-Ryan

cassP Contributor

i wouldnt be nervous at all.. you're now on the path to feeling much much better and being healthy. just go over it all with your doc- ask if everything else looked okay. and if you have any other concerns- ask him if and when u should maybe also get a colonoscopy. most of the time everything is great down there, but i had a colonoscopy before i self diagnosed- because i had so much pain, i wanted to make sure there was nothing else involved besides my assuming a gluten/small intestine issue. i was relieved to have everything check out ok.

next up- you really need to start with some blood tests to check for other issues that are quite common in those with celiac. the most common seem to be: B12, D, & Iron deficiencies, and Thyroid disease. you may be completely fine- but trust me- from my experience- better to check them all out now- vitamin supplementation &/or meds can really help u recover quicker and save u any uneccessary discomfort. i for example went thru a good year of pretty bad muscle spasms before i found out i was D deficient.

good luck and welcome :)

WinterSong Community Regular

Good news! My follow-up with my doctor went well. My biopsy was positive, and he was able to show me that my villi were blunted. He tested my thyroid, as well, and luckily it's normal. I got a lot of my questions answered about my lactose intolerance, and he seemed pleased with how I've been following the diet so far. Going back in three months to get my blood tests re-checked - my levels were pretty high (tTG was greater than 300 - yikes!), so here's hoping they go down soon!

MsCurious Enthusiast

Good news! My follow-up with my doctor went well. My biopsy was positive, and he was able to show me that my villi were blunted. He tested my thyroid, as well, and luckily it's normal. I got a lot of my questions answered about my lactose intolerance, and he seemed pleased with how I've been following the diet so far. Going back in three months to get my blood tests re-checked - my levels were pretty high (tTG was greater than 300 - yikes!), so here's hoping they go down soon!

That is GREAT news JessicaNYC! Congrats on getting things going in the right direction. It sounds like you're adjusting really well, and have a great outlook on things. I think that is half the battle. Great to hear success stories like yours. :) Glad you're doing better!

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. - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Iron loss and potential celiac.

    2. - Joseph01 replied to bethmon's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      We Keep Getting Glutened With Vegetable Oil

    3. - ThomasA55 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Iron loss and potential celiac.

    4. - Aretaeus Cappadocia replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Edy's and Dreyer's ice cream

    5. - knitty kitty replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Edy's and Dreyer's ice cream

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

    • Total Members
      134,086
    • Most Online (within 30 mins)
      10,442

    Joseph01
    Newest Member
    Joseph01
    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)

  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
    • Joseph01
      This is way past due for your post.  I have Celiac and have been recovering for more than a year.  Doing well.  Used Essential oil to day to fry some chicken.  Read the label all good.  Then ate some chicken.  Here comes the gluten reaction.  I haven't had a gluten reaction since year.  I am angry.   I have been so careful with this crap and don't wan't any set backs!!!!! Good luck to you with your post.   Celiac is HELL!
    • ThomasA55
      Hey everyone. I'm a young adult who had very high iron in 2024. 64% saturation 160 ferritin. In 2025 I had far lower iron. 26% saturation and 130 ferritin. I know this is still in range but it seems to be a large drop. That combined with the fact that I developed some intermittent joint pain between the two years makes me wonder if I could be celiac. My dietary intake of iron was pretty steady (mostly in the form of red meat). I did carnivore (therby eliminating gluten) for a bit after the second test and felt improvements in my joints and digestion. I still consume gluten occasionally socially, for religious reasons, and through cross contamination/food sharing. For these reasons, I would need to know if I had it, because although my lifestyle is low gluten its not at the strict level it should be if it turned out I was celiac. I will get a gene test first and hope I don't have DQ2.5,DQ2.2, or DQ8, but if I had any combination of those do you guys think I need proper screening through a gluten challenge / blood test? Other context. From 2024-2025, my b12 stayed about the same in the mid 600s folate went up slightly, but I heard it takes longer for celiac to affect the absorption of these. ANA negative, CRP low, ESR low.  I don't know how much noise exists around the saturation and ferritin, but it caught my eye and Celiac seemed like a possibility. I'm under no illusion that it is probable that I have celiac, only that it may be worth screening given my overall profile.   
    • Aretaeus Cappadocia
      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
      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/
×
×
  • Create New...