Gluten/wheat makes me really ill - is it worth going to the GP?

[glutenglutton]

I'm 27, and over the last few years had the onset of IBS-like symptoms. I had a few episodes of bleeding so I had a colonoscopy earlier this year which came back as completely normal, and I was diagnosed with suspected gastroenteritis and discharged. I had a blood test for coeliac's which was negative. The symptoms conditioned and so I did a food diary, which showed it seemed to coincide with eating lots of gluten.

In September, I decided to try eliminating gluten for a week initially to see if it had any effect, but by day 3 I was a lot better and all my IBS-like symptoms had disappeared along with the intense stomach cramps. I couldn't bring myself to eat gluten after that so continued eating gluten-free.

I've had a few instances recently when I've accidentally eating gluten (e.g. eating a pasta sauce that contained wheat flour). It's instantly made me unwell, so it seems like my sensitivity has increased after having excluded gluten for the last couple of months.

I'm not sure whether to go to the GP about it. I don't have a family history of coeliac's disease.

For the test to be accurate you need to be eating gluten for a while beforehand unfortunately.

You're clearly at the very least gluten-intolerant. But as a PP says, you need to eat gluten for around 6 weeks before a test and I expect that would be extremely unpleasant for you.

I'd simply avoid eating/handling gluten in all things (it's more widespread than you may imagine, even in makeup) as that will be what's essential in keeping you well. I'm not sure your GP can add much to that, realistically.

As above you need to introduce gluten for around six weeks ahead of any blood test or you could get false results. Some people don't show on the bloods. Some people can have negative bloods but still have coeliac disease and with the symptoms you have would ask for a referral to a gastroenterologist for a biopsy.

Saying all that you could have an intolerance without CD. The only real benefit of a diagnosis is some areas provide gluten free basics on prescription, you will be referred for a bone scan and an appt with a dietician and yearly bloods (although that can be hit and miss).

I wasn't diagnosed until 37 with zero symptoms and pretty sure I didn't have it before 30 and have no family history.

Go to a dietitian with experience in intolerances and allergies. In Australia you don’t need a referral.

Have a good discussion and be led by their advice. Admittedly, gold standard diagnosis is a biopsy from along your intestines but now you are off the gluten, you need to decide whether or not to go back on. A dietitian will help with your decision and your nutrition.

Thank you all, I've been unwell again today but have searched the ingredient list of everything I've ate this weekend and I think it's just the lingering effects from when I accidentally ate something with wheat in on Friday night.

Do you think it's worth going to the GP for a chat about it/my options regarding further investigation or would that be a waste of an appointment? I'm worried about the implications of not having a diagnosis - for example, at the moment I still eat foods that are 'may contain' and share a toaster and butter etc. If I was coeliac I know I would need to be a lot stricter. I also wonder if I need it documented in case I need time off of work if I accidentally eat gluten.

I think you should go back to GP for further tests as your reaction is so sever. Knowing you are coeliac will help you manage your diet and you will get supports.

Yes do go to GP. Blood tests are not always reliable as in my case was only diagnosed by endoscopy. There are extra monitoring which it is advisable to have if coeliac so pursue it so you can be certain. Only down side is as others have said you do have to be eating gluten before so it can show any damage in endoscopy.

For those reasons, yes OP do speak to your GP. Shared toasters would be a no-no! You may be extremely sensitive so that even one crumb will set you off.