Negative tests but ....?

[JamesUK]

Hi all - I'm 38 and from the UK. Nice to meet you all!

I'm wondering if I might be Coeliac but not know it. I've had blood tests in the past and two gastroscopies (I don't know if it's the same terminology in the US - but it's where they stick a camera down into your small intestine through your stomach) and they were all negative. But is it possible that despite this that you can go on to develop Celiac?

I've been experiencing some weird and nasty symptoms in the past 2 years. I have functional dyspepsia anyhow but these are symptoms where my limbs go weak and tingly (especially my knees feel inflamed), my digestion stops, and my chest feels tight. I've also been suffering from fatigue, which has worsened since I had Covid in March 22. My doctor doesn't think it's Celiac but has done a blood test anyhow (waiting for the results), but seemed to set a lot of store by the fact that the gastroscopies (last one was about 3-4 years ago) showed negative. Is he right to do this?

 

[trents]

Hello, James and welcome to the forum!

You ask, "But is it possible that despite this that you can go on to develop Celiac?" Indeed it is.

It is also possible you have NCGS (Non Celiac Gluten Sensitivity) for which there are no tests since it does not damage the villi of the small bowel. Celiac Disease must first be ruled out. They share many of the same symptoms and NCGS is 10-12x more common than celiac disease.

[Scott Adams]

I think your doctor made a good call to do another celiac disease blood panel, let us know how it turns out. Were you eating gluten, preferably 2 slices of wheat bread's worth, daily for 6-8 weeks before your blood test? This is the normal protocol, otherwise your antibody levels may be lower, or you may even get false negative results.