Positive blood test for celiac but have no symptoms!

[Louisa111]

So briefly I've had 2 blood tests.. both I have tested positive for celiac disease. All I had was slightly low folate for doc to do this extra test. With 2 months of tablets this is back up to normal levels and had stayed there .

So the next thing she wants to do is more tests.. camera down and up etc.. now I don't mind if I'm
Really really poorly..stomach cramps etc but I feel really fit and well so in 2 minds at having any investigations done.. I just need some advice on this.
This was some info on my letter which makes no sense to me
TTG levels are at 30 with normal immunoglobulin levels.

Some advice would be appreciated as so confused anda bit shocked at this result xx

It is possible to have coeliacs with no symptoms, but the damage is already being done in the bowel. I know the tests aren't nice, but I would have them done and find out if it definitely is coeliacs.

I lived most of my life thinking I had mild IBS -- a bit of a nuisance but under control. No stomach cramps, no vomiting, just some bloating and a bowel function best described as 'never the same twice'. I was diagnosed almost by accident - I have some loss of feeling in my feet so was referred to a neurologist who did a whole set of blood tests, including coeliac. Nearly 6 months after diagnosis my insides are much much calmer and it's clear that what I used to think was pretty normal wasn't.

So I would recommend having the test.

It's possible to have silent coeliac disease, if anything it puts you at more risk from future problems because you don't get symptoms when you eat gluten.

It might not stay silent, just to warn you.

It would be well worth getting the tests done.

As above, quite a few people go through life with coeliac disease and don't have any symptoms. It is an autoimmune disease though and as such, should not be ignored.

It's the long term effects you need to be aware of too . Untreated coeliac disease can result in a range of illnesses and ailments, from osteoporosis to bowel cancer. There's a whole host of other nasties that can arise if left undiagnosed/ignored.

They are working on a remedy for it (some kind of vaccine I think) but as far as I know this won't be available for a few years yet. In the meantime, a gluten free diet can be followed and really isn't that bad these days. When I first started eating gluten free the options were a bit miserable.

I would like to note something important though. DO NOT stop eating gluten before your endoscopy/colonoscopy. It will affect the results. You should be eating gluten at least 6 weeks before your appointment. Then your results will be reliable.

The tests just seen very evasive to me.. I'm finding myself looking at ingredients of lots of things and have just ordered some gluten free food just to see if I feel different .. is it possible to have a positive blood test but not be celiac.. if I am I am but really don't fancy all this probing if I feel fit and well !!!

If you go onto Coeliac UK they've got a brilliant site for questions you might have. When I had my blood test results I found looking on there very informative.

It is invasive but only for a short time. You're awake during the procedure and it really is for your health benefit. Again the website would be able to answer this better than I can, I think.

I personally had awful symptoms before the blood test. Lethargy, bloating, horrendous toilet escapades, depression... awful. I didn't get to the invasive part (various reasons) but I changed to a GF diet and I dont get the aforementioned symptoms at all now.

I promise you it's not so bad. Daunting at first bit you adapt easily. A lot of places cater for GF. Loads of supermarkets have a whole GF range. Plus there's a whole bunch of restaurants - Bella Italia do GF pizzas and pasta dishes. As do Pizza Express. Dominos do GF pizzas. Subway, Maccys and Burger King you have to either have a salad or take out the bap/bun. Smaller restaurants will usually have something on their menu that is gluten free too.

Once you get used to reading the ingredient labels, you're all set. Most of the allergens are in bold now so your eye goes straight to them. And failing that they usually have a section that says allergens: nuts/eggs/milk/gluten etc.

There are some that say made on a factory that handles gluten or something similar. It really depends on your sensitivity or whether you want to risk it. I'm not too sensitive so I can get away with those mostly.

Drinks - be aware of these too. Hot chocolate and shop brand coca cola/diet coca cola Are terrible.for adding cereal to thicken them or barley malt (for flavour/colour?)

Oh and one more thing... don't buy into all of the GF ranges. You'll find particularly with things like pasta sauces, or things other than pasta and bread, that the 'normal' stuff is fine. For instance, Dolmio sauce doesn't have any gluten in it. If you buy the sauce from the GF ranges though, you'll end up paying twice the price, sometimes more. It's a bit of a con and unfair on those who don't know quite how to navigate it yet (but I guess that's business?)

Like I say, once you know how to navigate it all, you're set

I must admit I have been looking at Tesco website for GF foods and I'm very surprised just how many there is. I've just ordered some GF bread as I do slightly bloat with 2 much bread so will see and also some gravy.
What sort of aftercare do you have with your doctors.. you say you didn't have the camera test but do they keep checking your levels with a blood test or just trust your sticking to a GF diet??
I'm wondering if I slightly reduce my wheat intake whether to have my bloods redone?
Thanks for the info though x

I'm wondering if I slightly reduce my wheat intake whether to have my bloods redone

Because... err why? I don't understand what you hope to achieve by doing this?

You do realise Coeliac is an autoimmune condition don't you? Not an intolerance, or an allergy?

My advice would be to have the tests....and you should continue eating as you have been doing until after you've had them , not switch to gluten free

As PPs have mentioned, it's a good idea to get the tests, even if you have no obvious symptoms. While you're waiting for the tests it's really important to keep eating gluten, or else the tests won't tell you anything. Good luck!