Should I Get Tested Or Not?

[monkeysam]

Hi.

Well for years ive had chronic fatigue sydrome and over the past year ive suffered with stomach and intestine pain which has even been so bad ive been in hospital. Along with floating stools which i cant flush away sometimes,rash, bloating, feeling sick, dizzyness, blood when going toilet and pins and needles in hands and feet. I was advised to try the fodmap diet which lead me to trying gluten free. It helped my symptoms and a few months later my gps gave me a blood test but didnt tell me that i needed to eat alot of gluten or for even 6 weeks. So i ate normal food for 2 and half weeks. When i got my blood test results it came back negative so my doctor said it was just sensitivey and said its not much point doing another blood test because its only 1/10th chance it will be celiac. But even now with gettin gluten free food im still gettin unwell but the food has been cooked with non-gluten food so may of cross contaminated. So should i get tested again propely for celiac. Im also concerned because ive heard its genenric and my partner has chroins so im wondering if to get tested again so we know, for when we have kids.

[nvsmom]

Welcome to the board.  

 

Your symptoms could very well be celiac disease, or non-celiac gluten sensitivity (NCGS).  To determine if it is celiac disease, you would need more blood tests (with a gluten challenge of 1-2 slices of bread per day for 8-12 weeks prior to testing) or an endoscopy biopsy with a month long gluten challenge.  There are genetic tests that will tell you if you are in the higher risk category for celiac disease, and other autoimmune diseases like crohn's, but they won't tell you if you have celiac disease or not.

 

Celiac tests are not perfect so it is not unusual for them to miss some celiacs (up to 25% are missed) so it is a good idea to make sure that you had as many run as possible.  These are the tests you would want:

• tTG IgA and tTG IGG
• DGP IgA and DGP IgG
• total serum IgA (control test)
• EMA IgA
• AGA IGA and AGA IgG - older and less reliable tests that have been replaced by the DGP tests.

NCGS does not have any diagnostic blood tests.  It is diagnosed with a positive response to the gluten-free diet.

 

Good luck with whatever you decide to do.