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

Getting Tested


gfpagan

Recommended Posts

gfpagan Apprentice

If I am going 100% gluten free because of gluten intolerance is getting tested for celiac necessary? Either way I'm going to be gluten free and it's not like they are going to cure me for knowing for sure. Anyone else in the same boat?


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



Celiac.com Sponsor (A8-M):



maile Newbie
If I am going 100% gluten free because of gluten intolerance is getting tested for celiac necessary? Either way I'm going to be gluten free and it's not like they are going to cure me for knowing for sure. Anyone else in the same boat?

the short answer is No, you don't need to be tested. Some feel it's easier because there is less resistance to having a gluten-free diet if you have an official diagnosis but as many have said you don't need a Dr's permission to go gluten-free.

I'm self diagnosed, my Dr is a wonderful guy but old school and has trouble with the fact that I am not losing tons of weight yet still claim to be gluten intolerant. (he keeps sending me for blood tests even tho I tell him not to bother because I haven't eaten enough gluten for it to register ;) )

there are many self diagnosed on this board and others. given how hard it is to diagnose celiac by conventional testing it's not surprising many have just decided to forgo gluten rather than go through a gluten challenge just to maybe be diagnosed.

gfpagan Apprentice

Great reply! that makes me feel more confident in my decision. I hate the idea of having to go back on gluten to get a test that may or may not tell me something that I'm going to do anyway.

Thank you!

the short answer is No, you don't need to be tested. Some feel it's easier because there is less resistance to having a gluten-free diet if you have an official diagnosis but as many have said you don't need a Dr's permission to go gluten-free.

I'm self diagnosed, my Dr is a wonderful guy but old school and has trouble with the fact that I am not losing tons of weight yet still claim to be gluten intolerant. (he keeps sending me for blood tests even tho I tell him not to bother because I haven't eaten enough gluten for it to register ;) )

there are many self diagnosed on this board and others. given how hard it is to diagnose celiac by conventional testing it's not surprising many have just decided to forgo gluten rather than go through a gluten challenge just to maybe be diagnosed.

Tallforagirl Rookie
If I am going 100% gluten free because of gluten intolerance is getting tested for celiac necessary? Either way I'm going to be gluten free and it's not like they are going to cure me for knowing for sure. Anyone else in the same boat?

You may not need to know, but if you're not going to get tested I'd err on side of caution and get a full blood count and bone density test. Vitamin deficiencies and osteoperosis are very common amongst undiagnosed celiacs, but both treatable if caught early.

rinne Apprentice

Hi. :)

I agree, blood work to look at your vitamin and mineral levels is a very good idea, many celiacs are deficient in B and D vitamins and supplementing with them can be very helpful.

I never went the route of testing because I too understood that gluten was a problem for me, in my case though a brother and sister both diagnosed through endoscopy made the decision easy.

gfpagan Apprentice

I wouldn't need to go back on gluten to get these tests done right? Maybe I'll make an appointment with a diet change and talk to them about tests that should be done.

Hi. :)

I agree, blood work to look at your vitamin and mineral levels is a very good idea, many celiacs are deficient in B and D vitamins and supplementing with them can be very helpful.

I never went the route of testing because I too understood that gluten was a problem for me, in my case though a brother and sister both diagnosed through endoscopy made the decision easy.

rinne Apprentice
I wouldn't need to go back on gluten to get these tests done right? Maybe I'll make an appointment with a diet change and talk to them about tests that should be done.

Nope, no gluten required for these tests. :)

And congratulations on having the confidence to make a choice for yourself.

I think the gluten challenge is a horrific thing to do to our bodies, somehow being sick enough to feel like you are dying and eating the foods that are making you feel this way in order to do enough damage that they can see it just doesn't work for me. :lol:


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



Celiac.com Sponsor (A8-M):



gfpagan Apprentice

Thank you (-: I feel good knowing I discovered it myself and didn't have the frustration (at least too much) of doctors trying to tell me otherwise.

Nope, no gluten required for these tests. :)

And congratulations on having the confidence to make a choice for yourself.

I think the gluten challenge is a horrific thing to do to our bodies, somehow being sick enough to feel like you are dying and eating the foods that are making you feel this way in order to do enough damage that they can see it just doesn't work for me. :lol:

Leper Messiah Apprentice

I'm in the same boat although I'm weighing up tackling the stoopid gluten challenge just to get a prescription for gluten free food (from the NHS in the UK) - it is literally costing me a fortune. Here's hoping a better way to test and confirm gluten intolerance is not too far away.

one more mile Contributor

There should be a better way to be tested. I have not been tested and can not imagine Eating what I know is poison just to find out officially that it is. In the uk will they accept the DNA test?

ang1e0251 Contributor

I think it is barbaric to make you eat gluten for weeks for a test. Come on, do you know any GI dr that would rub poison ivy all over his body every day for 3 months just so it could do a huge amount of damage to skin to dx it?

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

      Small Bowel Resection 12 inches

    2. - trents replied to Ello's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Small Bowel Resection 12 inches

    3. - Ello posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Small Bowel Resection 12 inches

    4. - Scott Adams replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      Disaccharide deficient, confusing biopsy results, no blood test

    5. - miguel54b commented on Scott Adams's article in Ataxia, Nerve Disease, Neuropathy, Brain Damage and Celiac Disease
      1

      Could Gluten and Alzheimer’s Be Linked? New Research Uncovers Surprising Protein Parallels (+Video)

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

    • Total Members
      132,827
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Ello
      I have always eaten gluten and never stopped until my recent episode. I started more wheat products as my Dr. requested for the Tissue Transglutaminase Iga Antibody. mye result Value <1.0 Value interpretation: <15.0 Antibody not detected > or =15.0 Antibody detected I do not understand any of it. After eating all that wheat product my body exploded with all sorts of symptoms. I stop gluten ASAP. I am still in the healing process. I started having issues after my surgery. 
    • trents
      Welcome to the celic.com community @Ello! You say you had a blood test for celiac disease after eating gluten for 2 weeks. Were you gluten free before that? Had you ever been officially diagnosed with celiac disease previously? You say the result of the blood test was 1.5. Can you provide the name of the test and the reference range for negative vs. positive for the test? I ask because different labs used different reference ranges so scores without a reference range aren't very helpful.
    • Ello
      Surgery was in April 2023 due adhesions wrapped around my small bowel which caused blockage and had to be removed. Adhesions were so badly entangled that Surgeon could not cut out them, so the resection was performed. July 2025 started having severe yellow diarrhea and sometimes constipation. Just had another episode and was tested for celiac. Blood test stated 1.5 after eating gluten for 2 weeks. Lipase level was 120. Having an CT scan to check the pancreas. I have never had any issues eating gluten and now I am so fearful that I might have celiac. Has anyone had a small bowel resection? I am 65 years old. UGGH! I am still feeling bloating etc. 
    • Scott Adams
      If your tTg-IgA was 28 and positive is at 3, you are nearly 10x over the positive marker, so the most likely explanation by far would be celiac disease. I also do not understand why your doctor would not want to run the blood test, which is the normal first step in the diagnosis process.
    • xxnonamexx
      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
×
×
  • 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.