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):



    Celiac.com Sponsor (A1-M):


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

Blood Test - Advice Needed


peasoup

Recommended Posts

peasoup Rookie

Hi, I don't really know if this is the right place to come but I really need some advice. For a few months I was having real problems with bloating and constipation, my Grandfather has an intermittent wheat/gluten problem so my Mum suggested I try going without wheat for a bit, I did and my symptoms cleared up very quickly, I have been wheat free (and gluten free except oats) for around 3 months. Now if I have only the tiniest scrap of wheat (like in a sauce or gravy) then my stomach goes insane. I went to the dr for something else yesterday and mentioned it to him, he said he would like me to get a blood test done for gluten intolerance but in order for it to show anything I would need to eat wheat for at least a week first. What benefits would a diagnosis give me? I don't really fancy a week with a terrible stomach, not being able to eat much and not sleeping properly, I know that eating wheat free I feel good so why do I need a professional diagnosis? I'm going to tell him I want to delay it anyway because I'm at uni at the moment and I can't go through that while I'm supposed to be going to lectures and working, if I do it it'll be when I'm at home and have support around me (and I don't have to do anything else). Do you think it is worth it?

Thanks

Katherine


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



Celiac.com Sponsor (A8-M):



Jo.R Contributor

Hi, I'm new to this too, I just had a blood test come back positive, and now I'm waiting for a biopsy. My Dr. gave me a prescription for Bentyl (for IBS). This take cares of all my symptoms while I wait for the Biopsy. The first day I was a little light headed, but by the second day there were no side affects. Good luck.

mommida Enthusiast

Katherine,

It is not worth it! My daughter ended up being hospitalized with dehydration from trying the gluten challenge for testing. Granted she was a lot younger, but at your age - going to uni and just starting out in life; it is very risky to do the challenge. You would have to eat gluten for more than one week. (After eating gluten for two weeks, ending up hospitalized, my daughters test results were only slightly elevated.)

This is just my opinion, but I do have my views from experience.

L.

IrishKelly Contributor
Hi, I don't really know if this is the right place to come but I really need some advice. For a few months I was having real problems with bloating and constipation, my Grandfather has an intermittent wheat/gluten problem so my Mum suggested I try going without wheat for a bit, I did and my symptoms cleared up very quickly, I have been wheat free (and gluten free except oats) for around 3 months. Now if I have only the tiniest scrap of wheat (like in a sauce or gravy) then my stomach goes insane. I went to the dr for something else yesterday and mentioned it to him, he said he would like me to get a blood test done for gluten intolerance but in order for it to show anything I would need to eat wheat for at least a week first. What benefits would a diagnosis give me? I don't really fancy a week with a terrible stomach, not being able to eat much and not sleeping properly, I know that eating wheat free I feel good so why do I need a professional diagnosis? I'm going to tell him I want to delay it anyway because I'm at uni at the moment and I can't go through that while I'm supposed to be going to lectures and working, if I do it it'll be when I'm at home and have support around me (and I don't have to do anything else). Do you think it is worth it?

Thanks

Katherine

Look, the only reason anyone needs a blood test (which i among others on here ate tons of gluten and our blood tests still came back negative) would be for insurance purposes!! So, if you aren't worried about any kind of healthcare coverage expenses you are SO waisting your time, health, pain, etc...

breann6 Contributor

i agree with the others but wanted to add- that your feeling better off gluten- and thats all that counts. :)

Ursa Major Collaborator

Hi Katherine, and welcome to this board. Your doctor is wrong in saying it will only take a week on gluten to get valid bloodwork. Since you have been gluten-free for three months, it would take from six months to a year of eating at least four slices of wheat bread a day for a test to be (possibly, not necessarily) positive, even if you have celiac disease.

Don't do it! You know that you feel fine off gluten, just leave it at that.

When you say your grandfather has an intermittent problem with wheat/gluten, does that mean that every time he feels better, he eats it again, until he gets sick again?

The problem with that is, that if you have celiac disease, you need to be gluten-free for life. Of course, when you don't eat gluten, you will heal. Everything will look great, and you feel fine. That does NOT mean that the celiac disease is gone. Your grandfather should never eat gluten again, unless he wants to die of intestinal cancer earlier than he would die otherwise. I wonder why doctors are too clueless to tell patients the truth, it is very frustrating.

peasoup Rookie

Thanks, I don't feel I need the official 'label', I'm happy eating gluten-free knowing that I feel good - I get an immediate reaction (almost before I've finished eating a meal containing wheat) so that's enough incentive not to do it.

Yes, my Grandfather goes gluten-free until he feels better then goes back on it, then off, then on... He's in his 80's though and loves his bread so I think he's not going to change.

Do you find an 'official' diagnosis helps with anything like when you visit the drs?

Katherine


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



Celiac.com Sponsor (A8-M):



aikiducky Apprentice

Katherine, I hope you realize that you also have to watch out for barley and rye, and oats, besides wheat, in order to be really gluten free? Just thought I better mention it just in case.

I don't have an official diagnosis for a similar reason to yours, I was gluten free for six weeks before my bloodtests, they came back negative but I didn't feel like going back on gluten for testing anymore. I feel sooo much better.

So far not having a diagnosis hasn't been a problem, though sometimes I wonder what would happen if i ever need to stay in a hospital for instance. But at this point I just can't imagine ever eating gluten again (I've been gluten free for two years).

Pauliina

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - DebJ14 replied to NCalvo822's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      Newly Diagnosed

    2. - trents replied to NCalvo822's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      Newly Diagnosed

    3. - NCalvo822 replied to NCalvo822's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      Newly Diagnosed

    4. - Scott Adams replied to NCalvo822's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      Newly Diagnosed

    5. - NCalvo822 replied to NCalvo822's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      Newly Diagnosed


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,532
    • Most Online (within 30 mins)
      7,748

    Themogran
    Newest Member
    Themogran
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • DebJ14
      Migraines ran in my family, on my father's side.  All of my female first cousins on that side, and our grandmother suffered from Migraines.  Grandmother died in 1984 so we do not know if she ever would have been diagnosed with celiac disease. However, all 4 of us cousins were diagnosed with celiac disease between 2003 and 2007.  The dermatitis herpetiformis rash is a blistery, super itchy rash.  When they do the biopsy they take it from non-involved skin that is next to the rash.  If done wrong, the results may not be accurate.  Have you ever had one done? In that case, I agree that maybe she has you still on gluten for a biopsy.  But, if she has not ordered it nor referred you to a gastroenterologist, then I would question her advice.  
    • trents
      Scott Adams makes an excellent point about the possible pending scope with biopsy being the reason you were advised to keep eating gluten, @NCalvo822! You might want to get some clarification about that. What you don't want to happen is to go gluten free and then have to go back on gluten at some point in order to produce valid scoping/biopsy results.
    • NCalvo822
      Definitely useful info. Thank you!
    • Scott Adams
      It's possible that your doctor wants you to do an endoscopy to confirm the diagnosis, and if that is the case that could be why they don't want you to go gluten-free before that procedure is done.  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • NCalvo822
      Hi! Your history is interesting as I see parallels with my history. I too had migraines since childhood, but they run in my family so I didn’t think there could be any connection to the celiac. Also, the migraines have tapered off after menopause. I too have trouble walking in a straight line. And yet another similarity is I have been seeing both a dermatologist and an allergist for many years. The allergist has run many tests for my skin issues, but concluded I am not allergic to anything. I do occasionally get hives and am on daily medication to control the hives and other rashes or similar issues. At my last appt with allergist recently, I informed them of my new diagnosis of celiac disease. They said that it has nothing to do with my skin issues. They didn’t even put it in my chart. I know because I read the notes from the visit on the patient portal. However, your post has me second guessing my skin issues and possible connection to celiac disease.
×
×
  • Create New...