Possibly coeliac after negative test?

[MagicLoop]

Apologies in advance for the long tale...
I'm not sure what to do. I have self-diagnosed gluten and dairy intolerances. My symptoms (constipation, bloating, abdominal pain) started about 5 years ago. I initially gave up both gluten and dairy and after a couple of months my symptoms had gone away. I then went back on the gluten in order to be tested in case it was coeliac disease. Came back negative. Quit gluten again but have had occasional phases where I've eaten it again for a bit and been ok, then symptoms come back.

I tried eating gluten again recently after a long time gf. This time, symptoms were immediate and in addition to usual stomach ones, for several days I had full body aches, trouble regulating my temperature, and numb/tingling fingers and feet. Fingertips went really white. A friend said her coeliac daughter had exactly these symptoms. I'm now concerned that I am coeliac and had a false negative on my test, but I'm not sure I can cope with eating gluten again for 6 weeks to be retested! I'm considering just proceeding as though I were diagnosed coeliac.

Any experience very gratefully received, especially of these specific kinds of symptoms.

That's what I've done and the consultant I saw agreed.

I'm sure there are levels of intolerance below full blown coeliac.

Absolutely do what is best for you.
My mum is exactly the same, never tested as she felt 100x better when she gave up gluten as a trial. Her doctors accept this and she is now so much better

Thanks for your reply! Sorry - do you mean the consultant agreed that you should proceed as though you were coeliac, without going through further testing?

It just worries me because, as I'm sure you know, coeliac disease isn't just an extreme form of gluten intolerance, it's a completely different kind of condition altogether, as it's an immune disease, not an intolerance, and it can cause really serious long-term physical damage.

Part of what worries me is my own ability to be super strict about it if it's not confirmed by a definite diagnosis. So far, I have not worried about cross-contamination and have not avoided foods which say 'may contain traces of gluten', but coeliacs have to be really strict about it. Don't use the rest of the family's toaster, keep foods in a separate cupboard etc.

My family member tested negative by biopsy but their blood test was through the roof. If you feel better not eating gluten then that's probably the way to go. Even if you're not coeliac and are just intolerant you should feel better. My family member tolerates 'may contain' and just uses a different slot on the toaster or toaster bags

it's an immune disease, not an intolerance, and it can cause really serious long-term physical damage

I’m coeliac. Yes it can cause long term damage but mostly only if you eat the thing that causes the immune system to attack yourself. I say mostly because it’s often true that if you have one auto immune condition, you’ll have others. And if you suffered for a long time before going GF, you could have caused issues that will surface later.

Have you considered that you could have non-Coeliac gluten sensitivity or non-Coeliac wheat sensitivity? Have a read about them.

The treatment is the same, though, so if you can’t be strict enough to follow a GF diet without the formal diagnosis you’re going to keep having the pain and symptoms. None of us want to follow the diet rigidly. But that’s what we gotta do.

Have you considered that you could have non-Coeliac gluten sensitivity or non-Coeliac wheat sensitivity? Have a read about them.
Yes, I've read extensively about that - that's exactly what I've assumed I had so far, because my coeliac test was negative but I clearly had a problem with gluten. It's the new symptoms I had recently which have made me question whether it might have been a false negative (which is apparently really common with the blood test).

The treatment is the same, though, so if you can’t be strict enough to follow a GF diet without the formal diagnosis you’re going to keep having the pain and symptoms. None of us want to follow the diet rigidly. But that’s what we gotta do.

Yes, it's a pain all right! I have been following a gluten (and dairy) free diet for most of the past 5 years (apart from a couple of deliberate breaks to see if I still experienced symptoms). I'm very used to eating gluten free. What I'm not used to doing is avoiding cross-contamination, which is a whole other level of commitment. If I am just non-coeliac gluten intolerant, the occasional bout of stomach pain after accidentally ingesting some (for example in a 'may contain gluten' food) isn't a big deal, but if I were coeliac, it is much more of a big deal. I'm capable of eating a gluten-free diet, but it's not ideal to need to even avoid cross-contamination unless you really do have coeliac disease. That's partly why I'm wondering whether I should have further testing rather than just assuming I have it.

I think they'd recommend a test but I couldn't really see the point as I've given up wheat anyway and I can eat tiny bits without symptoms.

I'm sure I haven't been ignoring it for years. It seems to be something that has come on with menopause.

Mine came on 5 years ago when I was 48. I'm still not in menopause yet at nearly 54 . My symptoms started almost immediately after I first had Covid. I did read somewhere that if you have the genetic tendency to coeliac (and maybe also non-Coeliac gluten intolerance, not sure) but have never actually had it, it can be triggered by a major virus.