Bloodtests Negative - Now What?

[dbygones]

Hi, I'm in Scotland (only posted once here a while ago so don't expect you to remember me)

 

I finally got my blood tests results, and my doctor says they were negative. He has said he will speak to the gastroenterologist to ask where we go from here; apparently he has told my doctor previously that the incidence of false negatives is down as low as 5% nowadays. I want to wait to see what he says but also be prepared in order to push if I need to/want to. (doctor didn't even know about ncgs...)

 

I am tempted to just go gluten free, but obviously don’t want to if there is any chance of getting a positive result soon. As a mini trial, on Friday and Saturday I had no gluten and felt very good on Saturday; on Sunday I then had three lots of gluten: two croissants, two small cakes (a brownie and a pastry); then a few spoonsful of barley, something I haven’t had before. I spent the rest of Sunday feeling incredibly ill – sick and shivery, and had a strong emotional reaction (couldn’t stop crying!). I have felt irritable and emotional often after eating gluten, but this was completely uncontrollable. I feel a bit better today, but not great.

 

I am aware that I may ‘just’ have Non-coeliac gluten sensitivity; do you know if this presents with as strong symptoms as coeliac? Is there any test or need for testing for this, or would I just be better keeping away from gluten? I do know that there are as yet no prescriptions available for this as there are with coeliac. This was my only reason, really, for trying to get a diagnosis as it will obviously help; however I’m not prepared to go another 3 months or longer to try to get a diagnosis that is negative in the end.

 

Thanks all, you give us all hope!

 

Dee

 

 

[nvsmom]

Welcome back. 

 

I am aware that I may ‘just’ have Non-coeliac gluten sensitivity; do you know if this presents with as strong symptoms as coeliac? Is there any test or need for testing for this, or would I just be better keeping away from gluten? I do know that there are as yet no prescriptions available for this as there are with coeliac. This was my only reason, really, for trying to get a diagnosis as it will obviously help; however I’m not prepared to go another 3 months or longer to try to get a diagnosis that is negative in the end.

 

Thanks all, you give us all hope!

 

Dee

NCGS' symptoms are pretty much identical to a celiac's symptoms except there is no villi damage. Those with NCGS will have an individual set of symptoms just like a celiac will.  Some with NCGI around here have symptoms much worse than mine were and others' symptoms were much milder, but they were all considered to be symptoms of celiac too.

 

There is no widely accepted blood test for NCGS at the moment. Some doctors feel that the AGA IgA and AGA IgG tests can indicate NCGS because those tests are about a sensitivity to gliadin rather than testing for indicators that would show damage to the gut (like the tTG, EMA and DGP tests do).  This is not a widely accepted view yet so I'm not sure how correct it is. Also, many doctors are reluctant to use the AGA tests because they are not the most reliable tests (AGA IgG especially). This report, on pages 11-12 discusses the tests: Open Original Shared Link

 

I don't believe there are any prescriptions for coeliac disease. The only treatment is to eat a gluten-free diet for life - that goes for NCGS sufferers too. You can take mega doses of vitamins, probiotics, supplements, and digestive enzymes to help your body along with the healing, but they are not a cure and not everyone requires them.

 

If you decide to see the Gastro specialist in three months, I think you should be eating gluten in the month prior to your visit, at the very least.If you are eating gluten, if wants to test you, it can be done right away. I'm guessing that they might want to try an endoscopic biopsy on you, and you'll need to be eating gluten to create damage so the test will be valid. Unfortunate but true.  The biopsy requires a shorter gluten challeng than blood tests usually do. You could go "gluten lite" in the next two months so it's not quite as bad.... Of course if it is too bad, you should go gluten-free.

 

Do you know what tests were run? If all tests were run, that lessens the chance that there was a false negative. If only one or two tests were run, there is a good chance of missing celiac disease.The report I mentioned above lists all the tests and how spcific and sensitive each test is.

 

Good luck with whatever you decide to do. 

[dbygones]

Welcome back. 

 

NCGS' symptoms are pretty much identical to a celiac's symptoms except there is no villi damage. Those with NCGS will have an individual set of symptoms just like a celiac will.  Some with NCGI around here have symptoms much worse than mine were and others' symptoms were much milder, but they were all considered to be symptoms of celiac too.

 

There is no widely accepted blood test for NCGS at the moment. Some doctors feel that the AGA IgA and AGA IgG tests can indicate NCGS because those tests are about a sensitivity to gliadin rather than testing for indicators that would show damage to the gut (like the tTG, EMA and DGP tests do).  This is not a widely accepted view yet so I'm not sure how correct it is. Also, many doctors are reluctant to use the AGA tests because they are not the most reliable tests (AGA IgG especially). This report, on pages 11-12 discusses the tests: Open Original Shared Link

 

I don't believe there are any prescriptions for coeliac disease. The only treatment is to eat a gluten-free diet for life - that goes for NCGS sufferers too. You can take mega doses of vitamins, probiotics, supplements, and digestive enzymes to help your body along with the healing, but they are not a cure and not everyone requires them.

 

If you decide to see the Gastro specialist in three months, I think you should be eating gluten in the month prior to your visit, at the very least.If you are eating gluten, if wants to test you, it can be done right away. I'm guessing that they might want to try an endoscopic biopsy on you, and you'll need to be eating gluten to create damage so the test will be valid. Unfortunate but true.  The biopsy requires a shorter gluten challeng than blood tests usually do. You could go "gluten lite" in the next two months so it's not quite as bad.... Of course if it is too bad, you should go gluten-free.

 

Do you know what tests were run? If all tests were run, that lessens the chance that there was a false negative. If only one or two tests were run, there is a good chance of missing celiac disease.The report I mentioned above lists all the tests and how spcific and sensitive each test is.

 

Good luck with whatever you decide to do. 

Hi nvsmom, thanks for your answer; I don't know what tests they ran - even my rubbish doc said he just had the 'negative' from the hospital and doesn't know what tests were done. Personally I think he should have to retake his exams!

 

I'll drop down to 'gluten-lite' for a while until I have a better idea when I might get an endo... my pharmacist agreed they're 'pretty slow' around here

 

(the prescriptions are for the special food - you can get quite alot from the nhs if you're celiac disease).

 

x

[nvsmom]

Hi nvsmom, thanks for your answer; I don't know what tests they ran - even my rubbish doc said he just had the 'negative' from the hospital and doesn't know what tests were done. Personally I think he should have to retake his exams!

 

I'll drop down to 'gluten-lite' for a while until I have a better idea when I might get an endo... my pharmacist agreed they're 'pretty slow' around here

 

(the prescriptions are for the special food - you can get quite alot from the nhs if you're celiac disease).

 

x

 

I think your doc should retake his exams too! I hope you can find out what tests were done. If a variety of tests were done, then chances are it was a reliable negative but if it was just one test, then there is a chance that it is a false negative - it could be as high as 30% chance of being negative.

 

Oh yes, I've heard about that. In Canada we can get tax cuts on our gluten-free food but it's not really worth it because I only buy a few crackers, occassional cookies and a couple of loaves of bread a week that are specifically gluten-free. Everything else is just whole foods.

 

Good luck with the Gastro (I assume you meant Gastro and not Endo). I hope he can clear up things for you.  In the meantime, feel free to ask more questions about NCGI, celiac or eating gluten-free in other threads. The people around here are quite helpful.