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

Dr Said Its Not Coeliac...
0

6 posts in this topic

Hello!

Just wondered if anyone knows if it is possible to have a false positive blood test?

My GP tested me positive for coeliac, but when i saw a specialist to arrange a biopsy he said he doesnt think it is coeliac.

he said it may have been a bug i caught while i was travelling in indonesia 2 years ago...he also said i am too healthy to be coeliac...

anyone else experience this kind of thing? or know about false positive blood tests?

thanks :huh:

0

Share this post


Link to post
Share on other sites


Ads by Google:

Is your doctor going to do the biopsy anyway? They should. They can't rule out Celiac on the appearance of good health. They cannot see the damage in your intestines by just looking at your outward health. Some people are completely symptom free, but their intestines are completely damaged.

If your blood test was positive, then you either have Celiac Disease (advanced stage of gluten intolerance), or you are gluten intolerant. In my opinion there are no false positive blood test results, only uninformed doctors. Please either get a new doctor or pursue it further with this one. Insist on the biopsy, and if that fails then try the diet anyhow. If you feel better off gluten then that should be the proof that gluten is your problem.

God bless,

Mariann

0

Share this post


Link to post
Share on other sites

I agree, with it not being possible to have a false negative test. Everything I have read says, it is not possible. A positive blood test may not mean you have damage to the villi (yet) but it does mean that you are reacting to gluten. It's ridiculous for a doctor to say that someone looks 'too healthy' to have a problem ! I would look on this site for a referral to find a new gastroenterologist. There are a lot of problems not normally linked to celiac disease or gluten intolerance that many drs are ignotrant of. Just because you don't appear to have the 'classic' problems does not mean you are not reacing to gluten.

http://www.celiac.com/st_prod.html?p_prodi...-35104373883.16

If you are gluten sensitive, then it is important to follow a gluten free diet, in order for you not to develop celiac disease.

It is possible to have a false negative blood test(s), like my son did. He had over 70% of his small intestines, part of his ileocecal valve and part of his colon removed at 6 days old. His symptoms from short gut were similar to celiac disease, and he had been tested for it several times and had false negative results. Since he has gone gluten free after a biopsy showed celiac disease, he has made HUGE STRIDES and is gaining weight wonderfully :D

0

Share this post


Link to post
Share on other sites

I have always been curious, too, about the possibilty of a false positive, since my blood and biopsy were very positive yet I have had little improvement on this diet. I've been gluten-free for 8 months and am still showing positive antibodies that have not dropped at all. It is so discouraging I can't even tell you. It makes me think I have something else instead that can't be resolved through diet. I am assuming, though, that a positive IgA and Ttg can't be wrong, especially since I have serious damage to my villi. I'm just still wondering if some other disease could have done that. :unsure:

0

Share this post


Link to post
Share on other sites

thanks all for the help and advice,

my doctor is being reasonable about it - he has not ruled out coeliac and will do the biopsy to check - but he is going to do lots of other tests as well because he is convinced it is something i picked up while travelling. what he is saying makes sense and i did get very sick while in Bali, but having had the positive blood test it just doesnt add up :(

i know that my body doesnt like food - its not just gluten though, my system doesnt like anything in it. i have to not eat at all to feel well :angry: the doctor said i have too many of the bacteria (that we all need a little of) in my gut and so when i eat, it over reacts and makes too much air - or something like that...

did anyone else find that before they went gluten-free all foods upset them or just foods containing gluten?

thanks for the link to recommended doctors, but i am in England ;) bit far to travel really - lol :P

0

Share this post


Link to post
Share on other sites




If your reacting to gluten, you will most likely react to any foods, unless you avoid gluten long enough that you are able to heal, then you may notice that one food is ok, and another is not. Until going gluten-free I had diarreah all the time, every day no matter what I ate. I couldn't even finish a meal without running to the bathroom. There was no way to determine at that time it was a gluten containing meal or not.

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

  • Forum Statistics

    • Total Topics
      104,655
    • Total Posts
      921,622
  • Topics

  • Posts

    • Below is copied & pasted from this thread:   My celiac doctor is Dr. Syed Jafri, in Webster, TX (just south of Houston -- basically the Clear Lake City area), saved my LIFE.  I would recommend him to the whole, entire world.  I was desperately ill, and am still struggling, and he's a wonderful, sweet man who listens and is very proactive in helping you solve whatever problems you're having.  I wish all doctors were like him.  I have to fight and struggle with too many doctors to just listen to me and what I live with, day in and day out.  He's not like that.  Good luck to you.     There are recommendations on this thread too:  
    • I never worried about cross contamination because i was originally told i was just intolerant. after going gluten free i felt so much better up until this last march. dairy and fructose have been giving me problems but both lactose and fructose test came back negative.  this is what my gi doctor emailed me today 
    • Any place you know of to find more info? Seems like I am still in so much pain/bloat, I am not even sure if I would pick the right 5 foods!
    • Don't freak out worrying about other maladies yet. You would be absolutely amazed at the things that can/will resolve on the gluten free diet. Some take longer than others -- neurological seem to take the longest for most people but really, I guarantee, there will be things you had no idea or expectation of resolving will. There were tons for me and then there were things I sort of "woke up one day" & said, "hey, that's gone and that & that & that". Other, larger things had taken my attention so I hadn't paid attention to the smaller things until...... On the other hand, not everything is related to celiac but I bet you wouldn't find a handful of celiacs who didn't say something very similar to what I said above. Yes, thyroid problems are common with celiac but I'll also tell you there are/have been people on here who were hypothyroid before dx but after being gluten-free for a while they actually went back to normal thyroid numbers. My husband is one (yes, we both are celiac - it happens). He was on synthroid for 20 years or more. Guess what? He's not on it anymore. We've had his thyroid panel done several times since about a year gluten-free & he is no longer hypothyroid. 
    • Yes please, that'd be awesome Having a fun time trying to reply on my phone due to broken screen but will be back on tomorrow after results of doctor appointment to get to the bottom of why they've given me seemingly wrong advice re: next steps. Yup I'll admit to pity, anger, frustration and outright fear, been through the mill of emotions in this first week that's for sure. One thing before I go for that; back when I was self-diagnosing I wanted a full thyroid panel (T3, T4 etc.) and also ESR & CRP checks for vasculitis and similar maladies. Now it seems from my reading they can often follow celiac so my worry level of those has gone up a notch, more blood tests ahoy it seems? Main reason for worrying about those is the nearly constant tight / tender head I have at the moment. Top and sides of scalp. Could be the stress tensing the shoulders and occipital muscles at back of head but after the celiac diagnosis being missed I'm fearful of anything else being missed. Did anyone else have this tight head feeling at the start? Feels like the skin is being pulled inwards, sometimes goes down for a few minutes here and there and gets worse when sitting I think. I see the term "brain fog" a lot but luckily don't seem to have too much of that at present, this is more a physical sensation.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,655
    • Most Online
      3,093

    Newest Member
    bentcreekmom
    Joined