Celiac screening

Looking at celiac.org, they say NICE has advised that those with autoimmune thyroiditis should be offered celiac test on diagnosis ... is this happening? Didn't happen to me. Very sensible though, and I think we should even more be screened for autoimmune gastritis, with the gp asking if we Are taking supps and nonetheless going on to screen for MMA, homocysteine, serum gastrin and intrinsic factor.

OK I'm describing utopia, but research into correlation would justify it, and since AIG is closely linked with cancer of the gut, could be cost effective,

[hunny59]

Certainly my doctor and endo didn't think the fact that both sets of antibodies were way over range was at all significant and I was told that I had nothing to worry about (yeah right). So, bearing in mind that all my symptoms were all in my head, I'd say there was little chance of them being even slightly interested in testing for anything else. From reading the forums on here for the last 12+ months, I'd hazard a guess that my experience is less than unusual

[Hidden in reply to hunny59]

Yes, well my guess is it ain't happening. You weren't diagnosed though, so the guidelines would not kick in under their system. I was given levo but my tsh wasn't high enough for the gp to think I was actually fully hypo yet, despite antibodies, so I suppose I wouldn't qualify for a celiac screen either.

I wonder if anyone gets it?

[judburke]

Lets hope that Drs start to do this. I was undiagnosed Coeliac for a few years as my Dr didn't make the connection of 2 auto-immune issues especially as low iron is an indicator of CD

[Hidden in reply to judburke]

So you suffered due to a lack of a test procedure. I am sorry. And autoimmune gastritis is even more common. If drs are failing, we on this forum can at least get the message out and encourage those who can afford it to test privately, and those who can't to mercilessly bug their gps.

[judburke in reply to Hidden]

I did - it took 3 years and 2 different doctors before it was diagnosed. And I sort of diagnosed myself. The first Dr I kept telling her that something was wrong and she wanted to discuss depression which was nonsense as my symptoms were physical - low iron, cold skin etc. After help on this site I started to learn about good levels of vitamins and minerals and thankfully a new Dr was happy to test for them. Eventually I got upset with him and said why was I still feeling bad and why were levels not going up despite taking supplements. I told him that I didn't want to end up like my mum who was Hashi, Coeliac and then Parkinsons. He then had a lightbulb moment and made the genetic connection for Coeliac. Two days later he called to say he had never seen Coeliac antibodies so high

I think there are 4 things that we need to advertise on here

1 - Not everyone with Coeliac has the typical gut issues for Coeliac - I didn't have toilet problems at all. My symptoms were low iron, low D3 and low B12 and generally feeling awful - hair loss, tiredness. Also Dr couldn't get Thyroxin levels right they were gradually being increased every few months. The Drs should have asked themselves why there was a change in levels so frequently.

2 - Genetic Link - When you register with a Dr they ask about family history of heart disease, cancer, glaucoma but they do not ask about auto-immune issues. If the Drs had known that my mother was Coeliac then perhaps they would have tested earlier.

3 - Low iron is a classic "silent" Coeliac symptom. If a patient is referred to a Dietician with low iron they will send them back to the Dr for a Coeliac test.

4 - It can be typical for people to have more than one auto-immune issue so people need to be open to symptoms not being Thyroid issues

I try and mention the possibility of Coeliac in replies to people on here that if someone has low levels and they can't increase them then they need to ask why and ask for Coeliac screening. I just hope that my comment might get someone an earlier answer than I did.

Sadly due to the time it took for my diagnosis my gut was at the severe stage of damage and my bones show osteopenia. I wonder if the bone weakness could have been avoided if I had been diagnosed earlier.

[Hidden in reply to judburke]

Yes.. why do drs not take family history?

[judburke in reply to Hidden]

I think I am going to mention some of my comments to Coeliac UK

[Hidden in reply to judburke]

Good idea. Just by alerting GPs to ask these questions they could save so much suffering, as you show. And over and over here are posters with low iron and D as you describe. I think it is also very important that the advice given here so often, go on a g free diet, should always add .. but take a celiac test first.