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):

Looking For Advice About Testing/ Gluten Ingestion

twinkle-toez

Recommended Posts

twinkle-toez Apprentice
twinkle-toez
Posted

Hi,

I apologize in advance if this has been posted by others prior to this... I'm very open to people's feedback though and would be very appreciative of it as I'm very new to all of this.

My doctor ordered a celiac screen for me last Friday. I had not been eating a gluten-free diet, but it was gluten reduced (reduced from about May-present) - some crackers daily, and bread 3-4 times a week. Through the duration of January-April/May I was gluten-ated as I was refeeding from an anorexia relapse, and I assumed how awful I felt all the time was related to the eating disorder and re-feeding so I ignored it.

I was advised to eat a heavily-glutenated diet for a month prior to the serological screen - and from research on this forum and on the net in general I've ascertained that the recommendation is the equivalent of 4 slices of bread/day for a month prior to screening. I have been doing this every day since Sunday (so for 5 days, Saturday I had more gluten than usual, but not 4 slices worth) and I feel AWFUL.

I have a constant headache, mimicking a migraine in that it's very localized to being over one eye, GI problems (not D per se, but also not normal), nausea which gets worse after ingesting a gluten-containing meal. I've completely lost my appetite, and every time I think I'm hungry and try to eat something I just feel ill and nauseated. I feel insanely bloated - it hurts to have someone poke my abdomen. Additionally I'm gassy, and I have a fever. The fever is relatively low-grade systemically, but I'm absolutely burning up in the areas of my abdomen and back where my intestines would be located. And I'm so exhausted and depressed. I'm so utterly depressed it's unbelievable.

Baring all this in mind, I've decided not to go through and do the full month worth of gluten-ating.

The question on which I would really appreciate feedback, is if I do the blood test tomorrow, how likely is it that the results would be accurate? Or should I just fore-go the blood test altogether?

Sorry for the lame question...

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

OMG, you poor thing. That sounds awful. You're gluten sensitive for sure.

Get the test, because if it's positive you'll have some really good information. Yes, it may be a false negative, but it could be a false negative no matter how much gluten you eat.

Then go off the stuff and get well!

Archived

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

Go to topic listing

  • 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
      - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Iron loss and potential celiac.

      Yes, it does. And joint pain is another celiac symptom that is now well-recognized.
    2. ThomasA55
      - ThomasA55 replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Iron loss and potential celiac.

      Does my iron loss sound like celiac to you?
    3. trents
      - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Iron loss and potential celiac.

      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it...
    4. ThomasA55
      - ThomasA55 replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Iron loss and potential celiac.

    5. trents
      - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Iron loss and potential celiac.

      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...
  • 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):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Iron loss and potential celiac.

      By trents · Posted

      Yes, it does. And joint pain is another celiac symptom that is now well-recognized. 
    • ThomasA55
      Iron loss and potential celiac.

      By ThomasA55 · Posted

      Does my iron loss sound like celiac to you?
    • trents
      Iron loss and potential celiac.

      By trents · Posted

      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems. Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).
    • ThomasA55
      Iron loss and potential celiac.

      By ThomasA55 · Posted

    • trents
      Iron loss and potential celiac.

      By trents · Posted

      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?
×
×
  • Create New...