Understanding Symtpoms

[Niccla]

Hi Everyone!

I have a few questions for those that have lived with Celiac disease for sometime. I have been struggling with GI related issues my whole life, mainly constipation, bloating, nausea, etc. Then mouth ulcers started to occur regularly a few years ago, and then joint pain started. I've been to to GP countless times over the years being told bloods look good, so you're all good. So I go back to life and think well they said I'm fine so I must be. 

Joint and muscle pain (which is all over my body) has become so intense I now limp (I'm 38) and have started to holistically look for solutions. Recently had bloods done and they look fine but for a positive ANA test. I cut out gluten 2 months ago and found my Joint pain start to reduce significantly over a couple of weeks. Also no pain, bloating or nausea at all after eating (who knew being full wasn't suppose to be painful!) And my fatigue really started to reduce (which had gotten pretty severe over the last 4 months). Mouth ulcers gone, list goes on. When I have gluten by accident I start to get symptoms a couple of hours later - sever bloating, fatigue or brain cloud, joints start to ache, mouth ulcers, usually in that order.

Can you have coeliac with a negative result? Does eating gluten cause you pain in other areas of your body?  Did you have a positive ANA? Is there another specific blood test I should ask for as I saw online there are about 5 different blood tests?

I'm not sure if I should continue to push the issue with GP, I've been referred to rheumatology (45 wk wait on NHS). Just thinking if my Joint pain and fatigue and stomach pains are improving without gluten perhaps it's more related to that than Rhuematoid related issues?

 

Thanks for your thoughts x

[trents]

Welcome to the forum, Niccla!

 

Could you clarify what blood tests you have already had done that are specific for celiac disease. The tests you name in your post are not specific for celiac disease. Here is a primer for celiac disease diagnostic testing: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

But please be aware that you must have been consuming regular amounts of gluten for 6-8 weeks leading up to the day of the blood draw for the testing to be valid. I mention this because you state you are already eating gluten free.

"sever bloating, fatigue or brain cloud, joints start to ache, mouth ulcers". Yes, these are all things that have been connected to celiac disease but also NCGS (Non Celiac Gluten Sensitivity). NCGS is 10x more common than celiac disease but there is no test available for it. Celiac disease must first be ruled out. They share many of the same symptoms. NCGS, however, does not damage the villi that line the small bowel, however, as does celiac disease.

[Niccla]

Thanks Trents! I'm going to call GP to find out what tests I've had, that is probably the best place to start.

Thank you for your reply!