False Negative

wayne1983 · July 23, 2011

Hi there, ive just had blood tests for celiac and other bowel dissorders, all of which have come back negative.

Now id like to know if i can ask my gp for a biopsy has i am still having bad diareah, weightloss, fatigue and other symptons. I feel my result was false has i hadnt eaten much when i had the test and it did give the false reading.

Many thanks wayne,

kareng · July 23, 2011

I would think that, because you are still haveing problems, they might want to do an endo & colonoscopy to check for other things. While they are there, could they, please, just do 6 biopsies of the small intestine. Then we would know for sure doc?

AzizaRivers · July 23, 2011

I'd say so for sure. And if they refuse, you need a new doctor. The above poster had the right idea by bringing it up as a search for other possible causes of your symptoms, since they really should want to do that if they haven't found anything from your blood tests. My blood test was negative also, and like you I hadn't eaten much of anything--in my case, I'd been eating almost nothing but applesauce for about a month before my test.

wayne1983 · July 23, 2011

Thanks people, im going monday as i want to have proper treatment, and im not getting fobbed off by any doctor. Im even considering going private has id imagine it to be quicker than nhs.

Im so fed up at the moment and want to start getting back to 'normal as soon as poss. Many thanks again.

Bubba's Mom · July 23, 2011

My blood work was negative also, but the Dr. went ahead with the endoscope anyway. It showed flattened villi..and I got a definite Celiac Sprue Dx. It's not uncommon to have the blood work be wrong. I think it's like 30% of the time that there's a failure to pick it up with blood work. Push for the endoscope.

You could also have gluten intollerance. It has many of the same symptoms. Once your testing is done, no matter what the results, try a strict gluten free diet for a couple of months and see how you feel. It should tell you if you should be gluten-free.

Good luck..and I hope you get some answers. It's awful to feel so lousy.

wayne1983 · July 23, 2011

On 7/23/2011 at 2:30 PM, Bubba said:
My blood work was negative also, but the Dr. went ahead with the endoscope anyway. It showed flattened villi..and I got a definite Celiac Sprue Dx. It's not uncommon to have the blood work be wrong. I think it's like 30% of the time that there's a failure to pick it up with blood work. Push for the endoscope.
You could also have gluten intollerance. It has many of the same symptoms. Once your testing is done, no matter what the results, try a strict gluten free diet for a couple of months and see how you feel. It should tell you if you should be gluten-free.
Good luck..and I hope you get some answers. It's awful to feel so lousy.

Thanks bubbas mom, the thing is i really dont want to be waiting months to get better waiting for appointments, thats why i am thinking of going private as i want to get checked and results quick as poss.

And yeah its wrotten feeling rubbish and going to the toilet and it just been like liquid (sorry), so yeah as anyone here gone private cheers.

wayne1983 · July 23, 2011

Does anyone wake up in the night and needs the loo?. I do and it is terible, im convinced its taking over my life

ravenwoodglass · July 23, 2011

On 7/23/2011 at 7:32 PM, wayne1983 said:

Does anyone wake up in the night and needs the loo?. I do and it is terible, im convinced its taking over my life

I did for the last 5 years before I was finally diagnosed. It was hell on earth.

Make sure you let your doctor know this is happening. Some of us are told we have IBS but that doesn't happen with IBS. At least according to my ex-GI when I told him that one of the best things about being diagnosed was getting a full nights sleep. He then told me he didn't know that was happening and I should have told him, I had he just wasn't listening so do make sure you stress it.

I do agree that a endo and colonoscopy would not be a bad idea but do keep in mind that there can be false negatives with the endo and biopsies so you will want to give the diet a good 2 or 3 month trial after you are done with testing. You don't have to wait for the results. The day they do the endo go gluten free and your body may give you the answer before you go back for results.

wayne1983 · July 23, 2011

On 7/23/2011 at 8:45 PM, ravenwoodglass said:

I did for the last 5 years before I was finally diagnosed. It was hell on earth.

Make sure you let your doctor know this is happening. Some of us are told we have IBS but that doesn't happen with IBS. At least according to my ex-GI when I told him that one of the best things about being diagnosed was getting a full nights sleep. He then told me he didn't know that was happening and I should have told him, I had he just wasn't listening so do make sure you stress it.

I do agree that a endo and colonoscopy would not be a bad idea but do keep in mind that there can be false negatives with the endo and biopsies so you will want to give the diet a good 2 or 3 month trial after you are done with testing. You don't have to wait for the results. The day they do the endo go gluten free and your body may give you the answer before you go back for results.

So im not the only one then!, i will tell the doc. Ive had a day trial on the gluten free but still been 3 times today

Suppose it would take time to get better, (even though untill after th scopy i dont want it too!) cheers

wayne1983 · July 24, 2011

Im told you cant 'request' a private endoscopy you still need a referal?. I can see me been stuck in house for weeks, not getting out and tearing my hair out!

wayne1983 · July 24, 2011

Sorry for another reply, regards poop, is it more darker and smellier than normal?. Mine is and its not nice. Can anyone say roughly how long you waited for an endoscopy, cheers.

ravenwoodglass · July 24, 2011

On 7/24/2011 at 9:30 AM, wayne1983 said:

Im told you cant 'request' a private endoscopy you still need a referal?. I can see me been stuck in house for weeks, not getting out and tearing my hair out!

Can you ask your GP for a referral to a GI? If the process is too complicated and you don't want to wait you don't need a doctors permission to be gluten free. I think you are in a country that will give some financial help with the cost of gluten-free foods but you need to weigh that benefit against the physical cost of continuing on gluten until they can get you in. And of course you still have the risk of a false negative even still on gluten. I do hope you find a way to get into the GI doctor soon and get the endo done soon. I also hope you get some relief from the diet as I wouldn't wish the nightly 'purges' on my worst enemy. Wishing you a full nights rest soon.

wayne1983 · July 24, 2011

On 7/24/2011 at 11:38 AM, ravenwoodglass said:

Can you ask your GP for a referral to a GI? If the process is too complicated and you don't want to wait you don't need a doctors permission to be gluten free. I think you are in a country that will give some financial help with the cost of gluten-free foods but you need to weigh that benefit against the physical cost of continuing on gluten until they can get you in. And of course you still have the risk of a false negative even still on gluten. I do hope you find a way to get into the GI doctor soon and get the endo done soon. I also hope you get some relief from the diet as I wouldn't wish the nightly 'purges' on my worst enemy. Wishing you a full nights rest soon.

Thanks raven, im going back to docs tomorow so hope to get a more deffinitive answer. I really hope this ends soon, as my appetite isnt great, ive lost weight, and im frightened im never going to get better .

I cant be sat in house like i am, im just laying down most of time, thanks for your kind reply raven all the best.

Another thing, i seem to have like a white greasy type thing on my lips, deffo when i wake up and some during the day?

Bubba's Mom · July 24, 2011

One thing I would recommend to you is..get a piece of paper and write down every symptom you're having. It will prevent you from forgetting to mention something and may be helpful in your diagnosis.

Best of luck to you!

wayne1983 · July 24, 2011

On 7/24/2011 at 7:34 PM, Bubba said:
One thing I would recommend to you is..get a piece of paper and write down every symptom you're having. It will prevent you from forgetting to mention something and may be helpful in your diagnosis.
Best of luck to you!

I have bubba, thanks for tip though.