Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Tested Neg But Still Wondering
0

Started by wondering,

3 posts in this topic

Posted

...how long do you have to be eating gluten-y foods in order to have an accurate blood test? I took gluten out of my diet and my symptoms (chronic fatigue, bone and back pain, bloating, gas, diarrhea AND constipation at times, mental fuzzines) have gotten better. I fell off the wagon, so to speak, and went on a gluten binge and all my symptoms returned even worse. It's now been almost 3 weeks without gluten this time around, I'm feeling a bit better but I just got tested and it came back in the normal range. How accurate are the blood tests and could the fact that I haven't been having gluten make a difference? I'm reluctant to go back to gluten just to get another blood test, but I really think that gluten is the cause. Any expertise or input would be appreciated!

0

Share this post

Link to post
Share on other sites
Ads by Google:

Posted

Yes, I believe that could have given you a negative result. Unfortunately, both the blood test and the biopsy require you to be ingesting gluten for an appreciable time prior to the test in order for them to be accurate.

I would recommend that if you are not already seeing a gastroenterologist, that you find one experienced in Celiac Disease and explain your symptoms and the fact that you got better when going gluten free. You can then ask how he/she would like you to proceed to get accurate diagnostic tests. Presumably, you would have to go back to ingesting gluten for a certain amount of time prior to testing.

0

Share this post

Link to post
Share on other sites

Posted

THe blood test are not fool proof and for some people it takes time for the disease to register in the blood or damage the villi in the small intestines (per my doctor). So regardless if you start back on gluten again and have blood-work or a biopsy it could ALL come back negative and you could still have celiac disease.

In my opinion there are 4 ways to be disgnosed:

1. through blood-work

2. through a biopsy

3.an improvement on a gluten-free diet

4. stool panel test from Enterolab, these test are more sensitive than blood and you do not have to be on gluten for them to be accurate. It is also noninvasive and simple.

I do hope you find some answers soon! Take care :)

0

Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0
Go To Topic Listing Celiac Disease - Pre-Diagnosis, Testing & Symptoms

  • Forum Statistics

    • Total Topics
      104,681
    • Total Posts
      921,725

  • Topics

  • Posts

    • ravenwoodglass
      Taking Advil to cope with pain?

      By ravenwoodglass · Posted

      I also only really eat one meal a day and always after I get home. I never really feel hungrey. I call it 'Pavlov's dog in reverse'.  I think it comes from so many years of food making me sick. I have gotten to the point where I now at least can eat a sandwhich and some fruit during the day but it wasn't a quick process. When folks get like that it is very important to make sure that one meal has a good amount of both calories and nutrtion.  If your diet is how you describe you are starving yourself.  You need to get yourself used to eating again.  What helped me was carrying a baggie with some nuts and dry fruit with maybe even a handful of gluten free pretzels and always some chocolate baking chips. I just ate couple pieces when I thought of it throughout the day. A little bit of cheese and a couple safe crackers, a piece of fruit or a small tin or individual serving snack pack are also good. You need to get some nutrition during the day so you can feel up to cooking a simple full meal  for dinner. I hope your feeling better soon.
    • Kricket73
      So could I be right or is he just an idiot?

      By Kricket73 · Posted

      Ok, I can't seem to find my first lot of blood tests that were done for Celiac screening, they did include TTG I remember that much, and I am getting another copy of it but another test did come in today.  I don't know how different tests are done around the world and I don't get all the medical jargon but this is what it states, ******************************************************************************* HLA DR/DQ Genotyping for Coeliac Disease, Specimen type : EDTA blood Method : Detection of sequence-specific oligonucleotides (Gen-Probe). HLA-DR - 1, 13          DRB1 - 01, 13 HLA-DQ - 5,6        HLA-DQA1 - 5,6      HLA-DB1 - 05, 06 Interpretation : No genotype susceptibility for coeliac disease.  The DQ2 and DQ8 antigens associated with increased risk of coeliac disease were not identified in this patient.  In the absence of these antigens, coeliac disease is extremely unlikely.   *******************************************************************************   I have read the horror stories of blood tests and scope biopsies not be done right or flawed but here is what I do know as of now, At the moment the most non invasive test I can have done say negative.  I have double scopes (endoscopy and colonoscopy) booked for the 12th of October with results from biopsies expected a week or two after. Chances are they will show, a) signs of coeliac disease (even if the odds are low it can still happen), b) show signs of something else entirely and we will be busy dealing with the ramifications of that or c) it will show no signs of coeliac but I will still be suffering from gluten sensitivity (which is harder/impossible to measure clinically). My GP has told me that stress and anxiety can be a cause of all the symptoms I have been experiencing and suggests if the scopes show nothing that I may benefit from something to treat anxiety, i.e. antidepressants.  Not in a, "Oh we don't know what it is so have these," kind of way, he agrees with the thought that the scopes could indeed show coeliac, something else or even be negative. I did tell him that I could have a sensitivity and that even without benefit of clinical results, some people have gone on a gluten elimination diet for a period of time to see if they get any relief.  My question is this, if the scopes come up negative and I try eliminating gluten, how long would it be before I saw any results or improvements?  I have read enough here and elsewhere to know that everybody is different, some see results within days, some see results longer but are there any guidelines for how long a test like this should be undertaken for?  I have heard everything thing from two weeks to two months.  All of this is entirely moot at this point but I know that even if the results said clear, there would always be a little part of me that wonders if it could be a sensitivity that is the problem.  Any thoughts or advice greatly appreciated, and a thank you to all those who have taken the time to respond and offer advice and encouragement so far.        
    • admin
      Account help

      By admin · Posted

      We don't delete accounts but can delete any personal information and change your screen name if you would like. Just send me a personal message with three possible screen names. For the record you can edit most things in your account area with the exception of your screen name.
    • Gracey
      Taking Advil to cope with pain?

      By Gracey · Posted

      Thanks I never heard of that dye before, I guess I have to find more natural meat thanks for the suggestion. 
    • Gracey
      Taking Advil to cope with pain?

      By Gracey · Posted

      Yes, I only eat one meal a day. Sometimes salad or fries or whatever I can find. And thanks for the replies again.

  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,681
    • Most Online
      3,093
    Misalina
    Newest Member
    Misalina
    Joined