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):

Negative Tests


missanomaly

Recommended Posts

missanomaly Newbie

I had an endoscopy today, and apparently everything looked normal. (I was still groggy or something when the doctor came, but that's what my friend told me he said...) I'm still waiting on the results from the biopsies, but I'm terrified they are going to come back negative too. I've been sick for a long time (alternating nausea/cramping/feeling like my stomach is on fire). I've also had alternating constipation and diarhea, and a nasty case of vertigo a few weeks ago. I've had a constant headache for the past week, and a lot of times I see excessive after images. I'm convinced my friends think i'm just crazy because I tell them I'm sick all the time. If I get one more negative test result I might cry :(

Do a lot of people get a normal looking endoscopy but positive biopsy results?


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



Celiac.com Sponsor (A8-M):



eatmeat4good Enthusiast

Yes, many many here have tried testing but it was negative. Tried the diet and got rid of all their symptoms.

Don't lose hope. Testing is only part of the answer. There is a high rate of false negatives and you are still in control of what you eat.

This is when you try the gluten free diet very strictly for yourself. You may be gluten intolerant or one of those who have it, but not high enough in antibodies to test positive.

All of your symptoms seem to match and you have nothing to lose but pain in trying the diet. Testing helps give an answer, but it doesn't mean it is accurate.

Elimination is 100% accurate. If you want to test/challenge by eating gluten after a couple of weeks you can.

Many get very sick from that next bite of gluten once it is out of your system. Now you start investigating and listening to your body reactions.

missanomaly Newbie

Thanks for the advice! It's very comforting to hear I'm not crazy. Just went out and bought gluten free stuff!

Thanks again!

ravenwoodglass Mentor

Welcome and do read as much here as you can. Your doctor can not tell just by looking whether you will be positive on biopsy or not. That's why they need to do the biopsy.

It is best at first to go with whole unprocessed food as much as possible. You will need a new gluten-free dedicated toaster, replace all condiments, nut butter, etc that you had used when you were eating gluten and don't share them with non gluten free folks. Also replace your pasta strainer and any wooden or scratched utensils and pans. Even a small amount of gluten will keep you reacting so you need to be very strict with the diet. It is also a good idea to avoid restaurants at first as the CC risk is high in many. If you must eat out do so at places that have a gluten-free menu. Good luck and I hope you are feeling better soon.

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
      2

      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
      2

      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

  • 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):
  • Upcoming Events

  • Posts

    • ThomasA55
    • 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.
×
×
  • Create New...