Coeliac test and anaemia

[Bringbring]

Thanks for reading. I have been tested for coeliac disease as I suffering from anaemia (heam 9.2 /ferritin 3). I have had to be pushed to be tested for coeliac. I've also been screened for thyroid and vits b and d and everything seems normal.

Result from test is 16 and dr says normal is 0-15. Combined with antibodies test which was negative he says this is conclusively not coeliac. However, when I was tested he said that if I was wheat free in my diet (which I was in a bid to lose weight and feel better) it wouldn't effect the test. What I subsequently read didn't support this and I ate gluten for approx three days before the test. Do you think I should push for a retest in six weeks?

I feel increasingly fobbed off by the dr, I've lost nearly a year of my life to feeling terrible with the anaemia. I've been on a number of tablets/syrups but iron levels have hardly changed and the side effects are crippling (bowel cramps, pain under ribs as well as the usual) I'm so knackered I can't even live a normal life (breathless climbing stairs, faint and dizzy, cold all the time).

Where do you think I should push next? Coeliac? hospital referrals? Diet? I just have to feel better!

Have you had an endoscopy and colonoscopy. If not I would think that would be required and they could do a biopsy to test for coeliac at the same time. If these are normal then a Haematology referral. You may need iron infusions. Do you have very heavy periods? Eat a normal diet? I agree that having not eaten Gluten could affect the test.

I would assume that not eating gluten would affect the test, but I'm not a doctor

that said, a lot of gps don't have much of a clue re coeliac disease, and-unless they've changed them somehow- as far as I remember a blood test doesn't really give a clear indication one way or another, you need an endoscopy for that.

Can you see a different gp at your practice? I had years of being sent from one specialist to another with dizziness- ENT, MRI scans etc. It was only after I had a long bout of stomach upsets and general misery and saw the right doc at the right time that I got referred to gastroenterology

Blood tests alone are not reliable enough for coeliac- this is well known.

But if the cut off point for non-coeliac is 15, and your result was 16, surely that is a positive result?

The next step is borderline is a biopsy of the guts. You should press for this.

You should also eat normally before a test- BUT I think that the damage to your gut would be evident long term - if you had a biopsy- and even 3 days' worth of wheat should still provoke a reaction.

Have you looked at the support group and info for coeliac in the UK?
There might also be some info on this site from a dietician

www.wisediet.co.uk

here- this part of the site- says you need to eat wheat for at least 6 weeks before a test.

www.wisediet.co.uk/www.wisediet.co.uk/Wheat_Gluten.html

Your doctor was negligent. I would actually make a formal complaint about his advice because it was utterly wrong, and made your test a waste of money and time, and has potentially affected your health by delaying your diagnosis.

How long did you stop eating gluten for? If you stopped eating gluten for several weeks before the test, it will invalidate the test. The coeliac antibodies are made in response to gluten in the gut, so once you stop eating gluten, the antibodies stop being made and aren't there to detect. Eating gluten for 3 days before the test is not enough at all. It takes time for the body to produce antibodies in significant enough amounts to register on the test. You have to eat gluten for at least six weeks, and be eating significant amounts in at least two of your daily meals for the whole of that time. Look at the Coeliac UK website for definitive advice on getting an accurate diagnosis.

It sounds to me like you might well be coeliac, but your antibody levels had dropped due to you not eating gluten. What a waste of time!

I would do one of two things:-
a) see a different GP and, armed with information from Coeliac UK, have a blood test again, after 6-8 weeks of eating significant amounts of gluten daily.
b) ask to be referred to a gastroenterologist, who will look at you blood test results, (make sure they know that you weren't eating gluten and for how long) and decide whether to biopsy. Three days of gluten is absolutely not enough, and no doctor should suggest it is.

In your circumstances I would consider seeing a gastroenterologist privately if you are having trouble getting to this stage.

FYI - the same rules apply for the endoscopy/biopsy as for the blood test. You MUST be eating significant daily amounts of gluten for AT LEAST six weeks before the test. Otherwise a false negative may result.

Good luck. I have two coeliac DC. It took nearly two years for me to get a diagnosis for my eldest, due to similar incompetence from ill-informed doctor - but when we finally got to a clued-up doctor, the tests were rushed through, and he turned out to be very severely coeliac with a lot of damage. 3 years later and he is thriving, healthy, a different child. It is so worth getting the diagnosis, and it shouldn't be so bloody hard to do it!

Well... If you want to feel better then you need to get a copy of your blood tests, stop eating gluten and start supplementing those vits and mins in which you are low/deficient. this is what I did, but 18 months on into a gluten free diet (which has been life changing for me) I have decided I really should get an official diagnosis and face the huge anxiety of having to go back to eating gluten sometime this year to hopefully get that diagnosis. By the time I get to see the nurse practitioner to discuss things on 19 March it will be just over 3 months from when my GP sent the referral, and I will have to do 6 weeks of a gluten trial before the endoscopy, whenever that may be. So it's a long process, and I'm not sure I went the right way about it in the first place, but I am now absolutely certain that I have an intolerance to gluten, and have also discovered that I am lactose intolerant as well. that has helped me to push for a gastro referral.

I think you should push for gastro referral, your results appear to be borderline at best going on what you've written. What you do in the meantime is up to you, but some iron supplementation (check out criteria for iron transfusions, I think your ferritin is low enough to qualify for one) can only be of benefit.