Frustrated and not sure what to do!

[Loulou79]

I’m hoping that someone might be able to please help me unpick my symptoms as I’m beginning to wonder whether they could be gluten related.

Getting on for a year ago (post Covid) I started getting daily diarrhoea in the mornings which left me feeling as though I was completely empty inside. On and off over the years I’ve had a sensitive stomach so initially just thought it was post viral and would clear up. It didn’t so in September, I visited my GP and had a stool sample checked. All tests were negative so I went on my merry way and just hoped that things would improve.

There was no real change and by December I started to feel very tired and shaky all the time, still with the diarrhoea. I visited the GP again and they ran lots of bloods which all came back normal but referred me to a neurologist to see whether it was something neurological causing the shaky feeling.

Since that time, I have been struggling with nausea in the morning and still having the diarrhoea and shaky feeling, it’s almost like me body gets so cold and shakes to warm up. I quite often have wind and a bubbly stomach and am just so tired all the time. The neurologist is happy that it’s nothing neurological causing the shaky feeling and has referred me back to the GP. I’m going to try and get an appointment this week and wondered whether it would be worth suggesting a blood test for celiac and a referral to a gastroenterologist? I don’t have any family history of celiac disease but as time goes on this definitely feels like some sort of autoimmune response, possibly triggered by Covid?! Any thoughts would be gratefully received. Thank you.

[trents]

Welcome to the fourm, Loulou!

You certainly have enough symptoms that are commonly found in the celiac community that a serum antibody test is warranted. I would request this from the physician. Here is an overview of celiac antibody serum testing: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Many physicians will only order the tTG-IGA test but see if your doc is open to a full celiac panel.

To say that there is no family history of celiac disease doesn't carry much weight as historically, diagnostic rates are far behind actual disease rates. It is estimated that 1% of the population has celica disease but most of those go undiagnosed and many of those are misdiagnosed with something else such as IBS. That is changing as the awareness of celiac disease is improving in the medical community.

[Scott Adams]

I agree, definitely get screened for celiac disease, and just be sure to keep eating gluten daily until all testing has been completed, otherwise you could end up with false-negative results. Also, and this makes everything more tricky, there is a condition called non-celiac gluten sensitivity which 10x more people have than have celiac disease, yet there currently isn't a way to screen for it. So when all is said and done, and hopefully you are able to get screened for CD, but if the results are negative you may still want to try a gluten-free diet to see if it helps with you symptoms.