Coealiac-loud stomach

[Smithy2310]

I have just had some blood tests done for another health issue and have been told i am celiac I don’t have any symptoms. I have been gluten free for 1 week since finding out and my stomach is going crazy really loud rumbling and sloshing noises Is this normal?

[Hidden]

No idea, sorry, but curious as to why doctors tested for coeliac if you didn't have any symptoms - I'm both 1) nosey and; 2) wondering if doctors are now grasping the fact that coeliac symptoms go beyond the digestive.

[Smithy2310 in reply to Hidden]

I am getting pins and needles in my hands and occasionally feet and they tested me for pretty much everything including auto immune diseases. I am still struggling to come to terms with it to be honest never had any symptoms now I’ve been told to eat gluten free for the rest of my life. I recently had covid and only just got over it a couple of days before my blood test so I don’t know if that has any of the same antibodies it’s just so frustrating

[Hidden in reply to Smithy2310]

Peripheral neuropathy - I had that before the digestive symptoms kicked off. Sadly no one was as canny as your doctor is recognising that coeliac goes beyond gut symptoms and I had to figure that one out for myself, so in many ways great you have been diagnosed, but not great from your perspective on now getting to grips with an unexpected health condition. It takes a while to get to grips with, but you will find this forum useful. It's a learning curve, so just (without sounding trite) take it from day to day until you are in a better level of knowledge and habit change. Perhaps your gut is damage without your knowing, so it's readjusting and healing and making some protest sounds along the way.

[StillNewToThis in reply to Smithy2310]

I totally understand your frustration. I have recently been diagnosed with Coeliac and didn't have obvious symptoms either. All I can say is try to be kind to yourself and take it one day at a time. It is a big learning curve, however what helps me is to focus on the many regular things I can still eat. I've found a brand of GF bread that I like and that helps. Yes it is expensive and maybe I can get it on prescription. This may be possible for you too. Your NHS dietician should be able to help with that. I hope you'll get your (virtual) meeting soon. Mine is next week and they sent me lots of info. Good luck and stay strong

[Smithy2310]

Did the neuropathy clear up in the end? I’ve become a nervous wreck the last few weeks since finding out i keep thinking I’ve got other illnesses too. I go out quite a lot and eat out it’s just so stressful knowing what I can/can’t eat and a drink.

[Hidden in reply to Smithy2310]

Once the gluten is out and your immune system settles down it should subside. It will come back if gluten gets into your diet by accident or mistake, and then again subsides after a few days/weeks again, depending on how much you've had. I've had nerve conduction test in my hands that didn't show any lasting damage which is good, but I take it as an indication, if it does occur, that I've eaten something with gluten in it.

Eating out can be a lottery, and some sources of information say to avoid eating out after you are newly diagnoses, for while until things settle down, as the cross-contamination is a problem. There are normally good guides online for safe restaurants/or one's that are a bit more aware. I'm not sure which country you are based in, but in UK we have coeliac UK who award accreditation to restaurants who have had specific gluten/coeliac training. I'm finding issue at moment with coffee shops that used cross-contaminated oat milk, so even though you are fully aware of what you need to do and where to go, things can also change on menus and in serving conditions that present risk. This is unfortunately how it is, and there is a failure by medical professionals to recognise this as a major stressor for those with coeliac.

Do you have dietician appointments to help you on the dietary side?

[Smithy2310]

Oh Ok fair enough thanks for the info I am also in the UK currently on a caravan holiday in wales and cannot find anything I’m allowed to eat at the park 😡. No I have not yet spoken with a dietician as I have only had a blood test and not the biopsy. My GP told me not to change my diet yet so they can diagnose but I am struggling as I know gluten must be damaging me so my natural instinct is to stop eating it

[Hidden in reply to Smithy2310]

It is important to keep the gluten in to the biopsy, and appreciate that it's not nice knowing you have damage happening because of it. In the grand scheme, you don't know how long you've had it for, so a couple of more weeks won't be much of a worse situation for you, so maybe use it as a chance to enjoy the things you will be cutting out. Don't worry about the nerve pain/pins and needles as they will go away once the gluten is gone so it's not a lasting thing. Other things to have checked are bone density, and vitamin/mineral levels - B12 is a common one to be low on, and iron, also vitamin D. Beyond that, your body repairs very well once you are up and running with your diet. It's a lot to take onboard, but you will find plenty of posts on here if you search back through old ones, and there are plenty on online advice resources also.

[Smithy2310 in reply to Hidden]

Your a star Benjamin it’s been good hearing from a fellow celiac. Yes maybe I will just carry on eating gluten but just maybe not as much. Yes I’ve had all the other vitamin tests and bone density etc… all were fine my b12 was actually higher than the threshold. Folic acid was the only thing that was borderline but wasnt a concern so my gp gave my a folate supplement for that but I don’t eat enough leafy greens so that would explain that.

[Hidden in reply to Smithy2310]

Looks like the damage hasn't set in for you then to any great extent. That's a positive, as many find out very far down the line when they have a lot of impacts. You'll find a lot of help on here, and it's a friendly bunch. I think it's quiet for response this weekend owing to bank holidays, but everyone is happy to share their info.