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

How Many Of You Decided You Had Problems Despite Negative Tests?

munchkinette

Recommended Posts

jerseyangel Proficient
jerseyangel
Posted

They talked about it in Dangerous Grains. I believe it's called the rectal challenge.

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

Celiac.com Sponsor (A8-M):


penguin Community Regular
penguin
Posted
They talked about it in Dangerous Grains. I believe it's called the rectal challenge.

Well that sounds like fun :o

Maybe I'll start saying "I'd rather have a rectal challenge" instead of "I'd rather have a root canal"

Considering I am so terrified that I have to be heavily drugged at the dentist, I'd probably rather have the wheat up my butt :rolleyes:

Rachel--24 Collaborator
Rachel--24
Posted
Well that sounds like fun :o

Maybe I'll start saying "I'd rather have a rectal challenge" instead of "I'd rather have a root canal"

Considering I am so terrified that I have to be heavily drugged at the dentist, I'd probably rather have the wheat up my butt :rolleyes:

LMAO :lol::lol:

Yeah the test is mentioned in Dangerous Grains but I dont know of anyone whos actually had that test done.

Ummm...hello...who would pick that test? :blink: I'd rather have the biopsy again and again.

jerseyangel Proficient
jerseyangel
Posted

yea--as if the gas and the frequent bathroom visits weren't embarassing enough.......

munchkinette Collaborator
munchkinette
Posted
  • Author

I just finished Dangerous Grains yesterday. I was wondering who would get the rectal challenge instead of the enterolab. The book came out in 2002, so maybe enterolab has gotten more popular since then. (?)

I'm still waiting for my blood test results. I'm also waiting for a reply from my doctor about doing other tests, but I think she's waiting for the blood test before she responds... she normally only takes 2-3 days. (My hospital has a great deal- for $60/year you can email your doctor with questions and get real answers within a few days. Otherwise you get stuck in voicemail purgatory forever.)

CMCM Rising Star
CMCM
Posted
I just finished Dangerous Grains yesterday. I was wondering who would get the rectal challenge instead of the enterolab. The book came out in 2002, so maybe enterolab has gotten more popular since then. (?)

I'm still waiting for my blood test results. I'm also waiting for a reply from my doctor about doing other tests, but I think she's waiting for the blood test before she responds... she normally only takes 2-3 days. (My hospital has a great deal- for $60/year you can email your doctor with questions and get real answers within a few days. Otherwise you get stuck in voicemail purgatory forever.)

Why not just do the Enterolab stool test? It supposedly picks up much more than the blood tests do...with the added plus that you don't have to be currently stuffing yourself with gluten to get an accurate test. I think a lot of us make this diagnosis thing more difficult than it has to be. And let's face it....doctors with their traditional and often not very up to date knowledge of how to test for celiac are generally not "cutting edge" with the diagnosis of celiac. My mom was told for years and years that her symptoms were "all in her head" and she nearly died because of it.

penguin Community Regular
penguin
Posted

I suggested testing for celiac to my Dr. Actually, I was sneakier and said food allergies/intolerances and she said the celiac panel. She was willing to test, but kind of apprehensive. When the results came back with the IgG high, she put me on the diet. I think in the time between that test and my follow up appointment, she did some research because when I said I had the classic symptoms of celiac at my first appointment, she said the symptoms are the same as most other chronic stomach problems. When I went back for the follow up, she was convinced I had it. It's all about finding a Dr. that will work with you, I just got lucky.

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

Celiac.com Sponsor (A8-M):


CMCM Rising Star
CMCM
Posted
I suggested testing for celiac to my Dr. Actually, I was sneakier and said food allergies/intolerances and she said the celiac panel. She was willing to test, but kind of apprehensive. When the results came back with the IgG high, she put me on the diet. I think in the time between that test and my follow up appointment, she did some research because when I said I had the classic symptoms of celiac at my first appointment, she said the symptoms are the same as most other chronic stomach problems. When I went back for the follow up, she was convinced I had it. It's all about finding a Dr. that will work with you, I just got lucky.

You are very lucky to have a doctor who was open to the idea, and when realizing she didn't know a lot she actually went to find out about it. Unfortunately, a lot of doctors don't bother with it!

Archived

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

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

  • Member Statistics

    • Total Members
      133,351
    • Most Online (within 30 mins)
      7,748
    giuseppe gamerra
    Newest Member
    giuseppe gamerra
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • par18
      Is it gluten?

      By par18 · Posted

      Thanks for the reply. 
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Is it gluten?

      By Scott Adams · Posted

      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      Trip to Anaheim/Disney

      By Seaperky · Posted

      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Churley · Posted

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
×
×
  • 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.