Trouble with diagnosis? Trouble with coeliac after care?

[FionaGFG]

There's always lots of discussions on how to get a proper coeliac diagnosis and then what checks should be made to monitor coeliac disease.

The NHS has a number of guidelines on this and one of the most common that health practitioners use as a reference guide is the 'map of medicine'. Think of it as a simple flow chart of what to do when a patient presents with certain symtoms.

The Map of Medicine for Coeliac disease clearly states the path of diagnosis and also what the follow up process is i.e. yearly check ups in primary care (with your GP).

Check out these links and let us know if your diagnosis matched this and whether your aftercare did/ does as well?

Diagnosis:

healthguides.mapofmedicine....

Problems & Follow Up:

healthguides.mapofmedicine....

[ianwoowoo]

My experience doesn't seem as bad as yours Tony.

I had about 3 years of feeling really run down and not being my usual active self. I had been running and cycling at a good level and competed in a few Triathlons. But after 1 event in 2008 I just never seemed to recover and got one ailment after another and since then I was back and forward to the doc's but was dismissed every time as a virus - "take some rest" was the answer.

I did have blood tests but apparently all normal but who knows what they were checking? It wasn't until I read an Asda Magazine article about Coeliacs that I thought I'd mention it on my next regualr visit to the GP. Luckily it was a new doctor on his first day so he was very open minded. He said he'd arrange a blood test - this was done in a week - results were positive then referred for Biopsy - waited a month ( not bad eh!) then waited 6 weeks for results ( not so good eh!).

When I went to see the consultant he was very dismissive of the whole thing - just said "yes - diagnosis confirmed - off you go and stay Gluten Free" - no follow up or anything.

I have since requested to see the dietician - waste of time and also asked my GP about follow up blood tests but he sais we don't really bother if you're feeling alright.................. I'm not !!!!!

The follow up care flow chart is quite interesting so will maybe challenge them for a 6 month follow up blood test at least. General view is that you're on your own. No 2 Coeliacs seem to be the same so it's difficlut to know who to listen to.

[FionaGFG Administrator]

Ianwoowoo - thanks for your story. Have you considered emailing ASDA and telling them your story? Maybe they'll repeat an awareness raising piece this year? Great to see that supermarket comms can lead to diagnosis!

Yes after care of coeliacs is very hit and miss. Do raise the topic at your next appointment especially if you're still feeling rough. Often simple deficiencies due to CD are missed as all the focus is on the initial diagnosis. Yet low vitamin D, B12 and iron can make you feel like a 90 yr old. My very own GP has told me 'oh..I have two other coeliacs here - they seem to be fine. It's a shame you're not. But everyone is different. ' I take that as a back handed admission that yes we are indeed all different. So don't give up. You should be getting some aftercare - route blood tests don't cost the earth and may spot any problems before they become real issues or costs to you or the NHS. Remember CD is an auto-immune disease and so everyone will have varying issues.

[ianwoowoo]

Hi Fiona,

No I hadn't thought about contacting Asda but will drop them a line - it was purely down to that article that got me sorted.

Ian

[ianwoowoo]

Hi Fiona,

Thought I'd give you an update on proceedings. Following your advice I went back to the doc's today and luckily saw one of the senior partners. He was like a breath of fresh air and knew an awful lot more than the previous doctor.

My DEXA scan results landed back today and have shown me to have lower than normal bone density. As soon as he saw this he suggested it could be due to Vit D deficiency so I am having blood tests next week for that and also testosterone levels which apparently can cause lowered bone density.

He also has confrmed that they have referred me to a Gastro expert at the hospital who he knows and says is a "Coeliac Expert" so that should be much better in the long run. He suggested getting started on Vit D tablets as soon as I have had the blood tests on Tuesday regardless of the results.

There may be light at the end of the tunnel !! Watch this space.