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Dr Said Its Not Coeliac...

nickra

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nickra Rookie
nickra
Posted

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:

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gf4life Enthusiast
gf4life
Posted

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

wildones Apprentice
wildones
Posted

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.

https://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

Guest gillian502
Guest gillian502
Posted

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:

nickra Rookie
nickra
Posted
  • Author

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

lauradawn Explorer
lauradawn
Posted

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.

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    • knitty kitty
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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