Doctor won't test for celiac?

[Elle295]

I've had stomach pains for as long as I can remember, was diagnosed with IBS 7 years ago, was tested for celiac 7 years ago and negative.Last year or so my bloating has got so much worse to the point I'm constantly bloated, very gassy, stomach aches nearly daily. Ive also had joint pain in both knees and hips daily which I've got an appointment with physio for.

Went back to doctor a few weeks ago, they ran tests and all that came up was low iron levels.

However they didn't test for celiac as they said I've already had a test done 7 years ago and it only needs testing once?

Just wondering if this is true or should I push for another test/order one privately?

None of my ibs medication works and with the joint pain and low iron it's made me wonder if I could have celiac.

Thank you for any advice!

[nomorebeer]

I was told I had IBS for about twenty years and that I would just have to live with it, but when I started reading about coeliac disease (which I had never heard of at the time), I asked the doctor could I have coeliac disease, and he said I might have so he sent me for a blood test, and when he got the result back, he said it was the highest positive for CD that he had ever had, this was about fifteen years ago and since then, I'm sure that all GP's have been instructed to test anyone with IBS like symptoms to test for CD.

Also, just because you tested negative seven years ago doesn't mean you don't have CD, the blood tests aren't conclusive and CD has to be confirmed by a biopsy.

[Researchfan]

Hi Elle295.

Sympathies. It can take time for a coeliac diagnosis if you have it. Agree with nomorebeer reply to you, The blood test are great for screening and can be suggestive of coeliac if positive but the gut biopsy is necessary to confirm in most cases still.

The research literature also shows blood test are not positive in everybody - make sure they test for igA deficiency which can give a false negative if have that, it’s rare but more coeliacs have it than the general population. It’s also been shown that when the blood tests are positive that significant gut damage has occurred. Level of gut damage correlates to level of blood test antibodies in most cases but not 100%.

You’re correct, you should get tested again. A test 7 years ago doesn’t show what’s happening today. In the UK, and US if correct recall, it’s medical guidelines to screen test people at known risk for developing coeliac disease. Usually every 2 years or as soon as obvious symptoms present. Especially with a family history.

You can buy finger prick tests to do yourself at home too these days and then go to the doctor if positive to confirm.

Personally it’s been a long journey regarding health especially IBS for myself. I had coeliac disease ruled out after following a not 100% strict gluten free diet for many years. The genetic test can all but rule it out.

There are many diseases that can affect the gut, and joints all linked, and a lot have similar symptoms to coeliac disease. Turns out that I’m allergic/sensitised. Different mechanism with the immune system. Coeliac disease is autoimmune. While other conditions can be immune in nature but different mechanisms.

If you get tested again and it’s negative again. It may be worth the genetic test to rule it in or out. That can really help with a conclusive diagnosis. If you have the genes you can yourself assume you have it if you have obvious symptoms that resolve on a gluten free diet.

The thing with coeliac disease is that it’s whether it gets triggered to develop. That’s the other thing just because your test was negative 7 years ago, doesn’t mean coeliac disease cannot or has not developed since! Research is still ongoing to figure out why some get it and others don’t with the genes. Food is a big player. Not just wheat and gluten grains. Inflammation and stress sets it off of some kind.

The other thing is have you been tested for lactose intolerance? Or cows milk allergy or intolerance? Or been put on an ‘elimination diet’ by a dietitian to help the IBS. It can help some. But if you’ve done all that and still ongoing symptoms certainly need to rule coeliacs in or out.

One last point on lactose and or cows milk protein sensitivity (soya as alternative too as similar protein), these can cause similar symptoms to reactions to gluten in those sensitive. Even lactose intolerance can cause systemic reactions (joint pain). I posted a British Medical Journal article a while back about it. All stems from gut health.

Hope this is a helpful reply.

X

[cranberryt]

I did not develop celiac until my 50s, so retesting could be beneficial. A blood test is easy enough for them to do. I can see why they would resist an endoscopy unless your blood test for celiac showed a response. But I do think it’s fair to request it.

The good news with celiac is that you can remove gluten from your diet even without a diagnosis and see what happens. If you remove gluten from your diet and it helps then at the very least you have a gluten sensitivity and should avoid it anyway. If it doesn’t help, you can try an elimination diet for the other most common food allergens.

And keep in mind if you do remove gluten from your diet, the tests will no longer be effective and they may try to put you back on gluten to test you.

[Galaxy2]

Hi Elle

How frustrating for you, like your other replies have suggested I would request for a test again.

This is my experience if it helps at all, I was told I had IBS too about 30 years ago but then I went on to develop a couple of auto immune diseases and then thought maybe I had celiac too, but my blood tests came back negative. A family member then was diagnosed with celiac, so as it can run in families, again I thought maybe I did have it but again was told no. I have been iron deficient for years to the point where I have had to have iron infusions which further convinced me of the diagnosis. I cut out gluten some years ago but I know I have accidentally eaten it at times and have been really badly affected. A few years ago I had a stomach biopsy to test for it but that came back negative too, ( if you cut out gluten from your diet you can't receive a positive blood text so this is the best route).

I was still convinced I had it and so continued with my gluten free diet. Then last year I lost a huge amount of weight, was deficient in iron, folate and B12. I was put on the cancer pathway for investigations which fortunately was all negative but the stomach biopsy I had gave a diagnosis of celiac disease.

At last I got diagnosed, it just took a long time.

Why don't you follow a gluten free diet to see if it helps your symptoms but request another test in the meantime too.

[Heman69]

At the end of the day it doesn’t matter if you have the test or not as the treatment is the same for coeliac disease or gluten intolerance gluten free diet. I’ve had IBS and gluten intolerance for 30 years now if you want to get rid of the bloating try the same over the counter medicine that I take and that is called colofac in the uk or sometimes called mebevarine in other countries.takes all bloating away and lessons the symptoms of IBS/gluten intolerance/coeliac disease.

[Fisher123]

I would most certainly ask again. I had symptoms from babyhood til age 27 when finally diagnosed, the damage to my body was horrendous. I’m 62 now, with a son who was diagnosed at age 10 thankfully.

Please demand the test from your gp you are entitled to do so. We all deserve good health💕

[CATRYNA49]

Sounds like a lazy doctor to me. Fire him and find another. Or, just take the steps to going gluten free and see if you health improves.

[Cooper27]

In your position, and if I could afford to, I'd do a home test. One that checks for IGA deficiency as well, as it could be that you can't produce the antibodies that prove coeliac disease.

[Tabbyme]

Push for another test!! I was finally diagnosed in 2018 and it is apparent now I have had Coeliac Disease for years!!!!!!! I mentioned it to my doctor earlier this year saying it's a shame I wasn't diagnosed sooner and he said the tests were not as good then and they are improving all the time!! Good luck 🙏😊