Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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):
    GliadinX

    Celiac.com Sponsor (A1-M):
    GliadinX

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Celiac testing concerns

ShelbySumner

Recommended Posts

ShelbySumner Newbie
ShelbySumner
Posted

Hello Everyone, I recently found out that I may have Celiac disease and may not have gotten the best testing possible. I'm 21 and have been experiencing symptoms since I was 14. I've seen different doctors but have never received any answers for my symptoms. About 5 months ago I met my fathers side of the family including my sister and found out that my Aunt and my sister both have Celiac disease and my symptoms are almost identical to theirs.

I saw a doctor last week and she acted as though I was crazy for thinking I had the disease but sent me to the lab to get a celiac blood panel test. I am now reading that this test can be extremely inaccurate and the disease itself is very hard to diagnose. I cut out gluten for a month and had no symptoms but went back on a gluten diet when I found out i would be having the test done. I'm afraid my results will come back negative and I wont receive any further diagnosing so I was curious if anyone else has had this dilemma  and what you did about it? Thank you! 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Little Northern Bakehouse
Daura Damm

Celiac.com Sponsor (A8-M):
Food for Life

GFinDC Veteran
GFinDC
Posted

Hi Shelby,

Welcome to the forum! :)

Your testing situation isn't unusual.  Way too often it happens that doctors will tell people to "try" the gluten-free diet, instead of doing testing.  And now with the popularity of the gluten-free diet as a cure-all for all kinds of symptoms, many people decide to try it themselves without getting tested first.

You are right to wonder if you will get good test results.  You may get a positive though, there is no way to know for sure.  The University of Chicago celiac center suggests a 2 week gluten challenge (eating gluten) before the endoscopy and 12 weeks before the blood tests.

Some people decide to do the full gluten challenge and try to get a full diagnosis.  Others decide to go gluten-free without a full diagnosis and stay that way.  It's all an individual choice situation.  Myself I had been gluten-free for 4 months before I got to see the doctor and I was working, so I decided not to do the challenge.

ShelbySumner Newbie
ShelbySumner
Posted
  • Author
4 hours ago, GFinDC said:

Hi Shelby,

Welcome to the forum! :)

Your testing situation isn't unusual.  Way too often it happens that doctors will tell people to "try" the gluten-free diet, instead of doing testing.  And now with the popularity of the gluten-free diet as a cure-all for all kinds of symptoms, many people decide to try it themselves without getting tested first.

You are right to wonder if you will get good test results.  You may get a positive though, there is no way to know for sure.  The University of Chicago celiac center suggests a 2 week gluten challenge (eating gluten) before the endoscopy and 12 weeks before the blood tests.

Some people decide to do the full gluten challenge and try to get a full diagnosis.  Others decide to go gluten-free without a full diagnosis and stay that way.  It's all an individual choice situation.  Myself I had been gluten-free for 4 months before I got to see the doctor and I was working, so I decided not to do the challenge.

Thank you for the Input! :)

NightSky Explorer
NightSky
Posted
On Tuesday, March 14, 2017 at 10:33 PM, GFinDC said:

Hi Shelby,

Welcome to the forum! :)

Your testing situation isn't unusual.  Way too often it happens that doctors will tell people to "try" the gluten-free diet, instead of doing testing.  And now with the popularity of the gluten-free diet as a cure-all for all kinds of symptoms, many people decide to try it themselves without getting tested first.

You are right to wonder if you will get good test results.  You may get a positive though, there is no way to know for sure.  The University of Chicago celiac center suggests a 2 week gluten challenge (eating gluten) before the endoscopy and 12 weeks before the blood tests.

Some people decide to do the full gluten challenge and try to get a full diagnosis.  Others decide to go gluten-free without a full diagnosis and stay that way.  It's all an individual choice situation.  Myself I had been gluten-free for 4 months before I got to see the doctor and I was working, so I decided not to do the challenge.

Hi GFinDC, can I ask how it has been for you not having a diagnosis? Have you sought follow up care such as bone scans? I am in the same boat, having given up gluten five years ago and reacting severely to trace amounts. I don't feel I need a diagnosis for myself but really just to help others around me. It can be hard for them to understand and accept. I hear the University of Oslo is developing a test for diagnosis that won't require gluten ingestion. Counting the days, weeks, possibly years for that to come out!

GFinDC Veteran
GFinDC
Posted
10 minutes ago, NightSky said:

Hi GFinDC, can I ask how it has been for you not having a diagnosis? Have you sought follow up care such as bone scans? I am in the same boat, having given up gluten five years ago and reacting severely to trace amounts. I don't feel I need a diagnosis for myself but really just to help others around me. It can be hard for them to understand and accept. I hear the University of Oslo is developing a test for diagnosis that won't require gluten ingestion. Counting the days, weeks, possibly years for that to come out!

Hi NightSky,

It's been fine for me.  My doctors accept that I have celiac.  I haven't had any specific followup testing though. so I guess its not a big deal to them either.  :)   That's ok with me.  Nope, I never had a bone scan that I know of anyway.  I broke my left elbow in 5 places years ago and maybe they did one then, but I never heard about it.

My family accepts that I have celiac also.  They are fine with it too! :)  That new test sounds really helpful.  I agree, it would be great to have that test available!

I have friends who try to get me to eat gluten sometimes, mostly because they just don't understand it.  That's not a surprise though.  Heck, I didn't understand celiac disease until quite a while after I got it.

A conclusive test that doesn't require an endoscopy would be a real step forward for people with celiac.  They might find a lot more of the missing celiacs.

 

NightSky Explorer
NightSky
Posted

That's great your doctors accept that you are celiac. They sound like keepers!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):
    Food for Life


  • Member Statistics

    • Total Members
      130,028
    • Most Online (within 30 mins)
      7,748
    Ellen Bergeron
    Newest Member
    Ellen Bergeron
    Joined
  • Celiac.com Sponsor (A20):
    GliadinX

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):
    GliadinX


  • Celiac.com Sponsor (A21):
    Food for Life


  • Upcoming Events

  • Posts

    • KimMS
      Gluten free thyroid medications

      By KimMS · Posted

      Thanks for sharing that site! Do you know if that site has any information about manufacturing/possible cross contact on it? I can't find it. When I have called manufacturers, most of them say they can't guarantee no cross contact in manufacturing (except Lannett, Mylan and possible Amneal, which aren't available near me).
    • Diana Swales
      Recently qualified Nutritionist looking for support

      By Diana Swales · Posted

      After years of living with Celiac Disease, learning through every bump and breakthrough, and guiding others through the gluten-free maze — I've officially qualified as a **Nutrition Coach** with Precision Nutrition. Now I’m ready to take this journey deeper… but I need your help. To complete my final certification hours, I’m offering **a limited number of FREE spots** (yes, completely free!) to work with me over the next few weeks. I’m looking for **5 people** who: Are newly diagnosed with Celiac Disease or gluten-intolerant Feel overwhelmed, confused, or frustrated with food Want support from someone who truly understands Are ready to build confidence and calm in their daily eating We’ll work together on what matters to *you*: Your food choices Your mindset Your kitchen habits Your ability to speak up for your needs This isn’t just about avoiding gluten — it’s about reclaiming ease, joy, and nourishment. If you're interested, comment below or DM me the word **"Ready"** and I’ll send you the info to get started. Let’s make food feel safe again. With care, **Diana**
    • Dora77
      Possible cross-contamination – concerned about symptoms

      By Dora77 · Posted

      Hi everyone, I have celiac disease and I’m asymptomatic, which makes things more stressful because I don’t know when I’ve been glutened. That’s why I try to be really careful with cross-contamination. For almost a year, I’ve been having yellow/orange floating stools consistently. I’m not sure if it’s related to gluten exposure or something else going on. I’ve been trying to identify any possible mistakes in my routine. Today, I made myself some gluten-free bread with cheese. Normally, I’m very careful: I use one hand to handle the cheese packaging (which could be contaminated, since it’s from the supermarket and was probably sitting on a checkout belt that had flour residue), and the other hand to touch my gluten-free bread and plate. But today I accidentally touched the bread with the same hand I used to grab the cheese pack from the fridge. The fridge handle might also have traces of gluten since I live in a shared household where gluten is used. I’m worried this mistake could have contaminated my bread. There were no visible crumbs or flour, but I know even trace amounts can be a problem. Has anyone had similar experiences or symptoms from this level of contact? Could this kind of exposure be enough to trigger symptoms or cause intestinal damage? Thanks for reading.
    • Mswena
      Lubriderm-gluten-free?

      By Mswena · Posted

      So eight days in a row of gluten on top of gluten on top of gluten, I just had to resort to the EpiPen. I wish I could post a picture because you wouldn’t believe how enormous my gut is! It makes my head look like a pinhead.Ahhhgggsahhhhh!!!! I have discovered that I have to read the ingredients when I use a product up that I’ve been able to use without getting a reaction, because they can change the ingredients and bam my toothpaste now has gluten!!! my doctor told me gluten free means it has 20 ppm which someone with a severe a celiac as I’ve got that thing there kills me. I try to find certified gluten-free in everything. I can’t eat any oats unless it’s Bob’s red mill certified gluten-free. Good luck everybody this autoimmune disease is wicked wicked
    • Mswena
      Lubriderm-gluten-free?

      By Mswena · Posted

      I have been using a little bit of Lubriderm when I wash my hands because it’s the lotion offered at a place I frequent once a week. Assuming it was gluten-free I bought a bottle. I couldn’t figure out why I was getting gluten EVERY night. I use a little of the lotion in the morning on my neck, with no reaction, but at night, I use it on my arms and legs and face and get gluten gut pretty bad. After eight nights of having to have diphenhydramine injections for severe gluten, I googled “is Lubriderm gluten-free” and it led me to this forum. I am going to go back to olive oil as I have been gut sick sooooooo bad with a huge gut and pain eight days in a row now. Sick of feeling sick.
×
×
  • Create New...