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

Am I Being Tested Right

Mrslmc

By Mrslmc
in Doctors

Recommended Posts

Mrslmc Newbie
Mrslmc
Posted

Hiya everyone, I'm new to the site and I'm not diagnosed yet. I'm from Ireland.

For a long time I believed I had IBS so never visited a doctor. One day while out shopping I was in a health food shop and the lady in there queried if I'd be interested in a intolerence test. She did it free saying I appeared unwell to her. She told me after doing some resistance testing that she believed me to have a severe intolerence to wheat and wheat products - not celiac - I know. But I took her concern to heart and cut out all wheat and gluten containing foods from my diet for a month and instantly felt like a new person. I was in seeing my gp on an unrelated subject and mentioned it to her. She did a blood test there and then concerned that I may be celiac. But she said it didn't matter that I had cut it out from my diet for a month. Is she wrong? How can she test for something that isn't present in my diet???

Should I restart gluten products and insist on getting re-tested??

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

Celiac.com Sponsor (A8-M):


sa1937 Community Regular
sa1937
Posted

Hiya everyone, I'm new to the site and I'm not diagnosed yet. I'm from Ireland.

For a long time I believed I had IBS so never visited a doctor. One day while out shopping I was in a health food shop and the lady in there queried if I'd be interested in a intolerence test. She did it free saying I appeared unwell to her. She told me after doing some resistance testing that she believed me to have a severe intolerence to wheat and wheat products - not celiac - I know. But I took her concern to heart and cut out all wheat and gluten containing foods from my diet for a month and instantly felt like a new person. I was in seeing my gp on an unrelated subject and mentioned it to her. She did a blood test there and then concerned that I may be celiac. But she said it didn't matter that I had cut it out from my diet for a month. Is she wrong? How can she test for something that isn't present in my diet???

Should I restart gluten products and insist on getting re-tested??

Welcome! Yes, she is wrong. To have half a chance of getting a positive result, you need to be eating the equivalent of 3 to 4 pieces of bread a day for 3 months. Even then the blood tests may be negative as false negatives are quite common. To be gluten-free for a month may entirely throw off the results. When will you find out what those results are?

That said, I think your body is telling you something.

Mrslmc Newbie
Mrslmc
Posted
  • Author

Welcome! Yes, she is wrong. To have half a chance of getting a positive result, you need to be eating the equivalent of 3 to 4 pieces of bread a day for 3 months. Even then the blood tests may be negative as false negatives are quite common. To be gluten-free for a month may entirely throw off the results. When will you find out what those results are?

That said, I think your body is telling you something.

Thank you so much for replying, just to know that someone else agrees it was done wrong is a great help. I have to wait till after christmas for the results. I will ring her today and query about getting retested, and I have started eating gluten and wheat products again, I didn't realise I'd have to eat so much of it to get a proper test. I'm currently following weight watchers as well, I've lost over 2stone and really don't want to put it back on. However my symptoms seem to have worsened since reintroducing the wheat that I have so I'll up that consumption again. Not feeling good at all now.

Thanks again for your thoughts x

auzzi Newbie
auzzi
Posted

Who is this lady, and what qualifications has she got that she can run coeliac-testing out of a health food shop ?? Is she qualified to do blood tests, in so far as she can order blood tests results from a pathology laboratory ?

Scrap all that guff and get into touch with The Coeliac Society Of Ireland. Open Original Shared Link provides lots of information as well as a very active forum.

Open Original Shared Link is the first step to you being able to take advantage of all the services that are available to Irish Coeliacs including Open Original Shared Link

  • 3 weeks later...
Booghead Contributor
Booghead
Posted

I don't know if I am misunderstanding but I don't think you have been of gluten long enough for it to affect a blood test.

And I'm pretty sure you said it was a doctor who tested you not the lady at the health food store. So I would say you are probably Celiac.

mushroom Proficient
mushroom
Posted

I don't know if I am misunderstanding but I don't think you have been of gluten long enough for it to affect a blood test.

And I'm pretty sure you said it was a doctor who tested you not the lady at the health food store. So I would say you are probably Celiac.

It is pretty generally accepted that after two weeks of not eating gluten the blood testing is likely to be invalid. The antibodies recede pretty quickly once gluten is withdrawn.

Archived

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

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


  • Member Statistics

    • Total Members
      131,590
    • Most Online (within 30 mins)
      7,748
    uhlissuh
    Newest Member
    uhlissuh
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Potential celiac need advice

      By trents · Posted

      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      Potential celiac need advice

      By Ben98 · Posted

      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      Unusual bright yellow but odourless discharge

      By Wheatwacked · Posted

      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
    • cristiana
      How long does it take to gain weight?

      By cristiana · Posted

      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
    • petitojou
      How long does it take to gain weight?

      By petitojou · Posted

      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
×
×
  • 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.