We've had a few queries on our coeliac group with people feeling achy, tired and having joint and muscle problems for many years and having problems getting their GPs to help resolve them. So I'm keen to find out first hand what tests your GP did on you - or should do to rule out RA issues e.g. blood tests for inflammatory markers/ AI testing / CPF ? MRIs? X-rays?
Thanks
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FionaGFG
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My GP only did a blood test and when that came back positive for RA factor I was then referred to a Rheumatologist. I then had more blood tests, x rays and scans.
It's not that easy to diagnose RA hence it often takes people a long time to get a diagnosis. Here is the criteria used by rheumatologists
Criteria
In 2010 the 2010 ACR / EULAR Rheumatoid
Arthritis Classification Criteria were introduced. [21]
These new classification criteria overruled the "old" ACR criteria of 1987 and are adapted for early RA diagnosis. The "new" classification criteria, jointly published by the American College of Rheumatology (ACR) and the European League Against Rheumatism (EULAR) establish a point value between 0 and 10. Every patient with a point total of 6 or higher is unequivocally classified as an RA patient, provided he has synovitis in at least one joint and given that there is no other diagnosis better explaining the synovitis. Four areas are
covered in the diagnosis:
joint involvement, designating the metacarpophalangeal joints, proximal interphalangeal joints, the interphalangeal joint of the thumb, second through fifth ometatarsophalangeal joint and wrist as small joints, and shoulders, elbows, hip joints, knees, and ankles as large joints:
Involvement of 1 large joint gives 0 points
Involvement of 2-10 large joints gives 1 point
Involvement of 1-3 small joints (with or without involvement of large joints) gives 2 points Involvement of 4-10 small joints (with or without involvement of large joints) gives 3 points Involvement of more than 10 joints (with involvement of at least 1 small joint) gives 5 points
serological parameters – including the rheumatoid factor as well as ACPA – "ACPA" stands for "anti-citrullinated protein antibody":
Negative RF and negative ACPA gives 0 points
Low-positive RF or low-positive ACPA gives 2 points
High-positive RF or high-positive ACPA gives 3 points
acute phase reactants:
1 point for elevated erythrocyte sedimentation rate, ESR, or elevated CRP value (c-reactive protein)
duration of arthritis:
1 point for symptoms lasting six weeks or longer
The new criteria accommodate to the growing
You suspect you have RA it might be useful to watch this video mare by NRAS as it tells you what to look out for.
I would have only scored 4 points at diagnosis so this is interesting. My rheumatologist was in no doubt that is was RA though - sero-negative RA. I would score a lot higher now.
Hello, Becky has given you the classification details, but the other thing to remember is that many GPs have very little experience of RA as only a small percentage of the population has it. So in an average size practice each GP may only have 1 or 2 cases. And given all the other things they have to remember then RA is often pretty low down in their memories. Also, NICE guidelines mean that some of the tests can usually only be requested by a hospital and rarely get done by GP's, and if you do have RA then the sooner you get to a consultant the better as you need to be under a specialist to get treated.
Therefore advice I would be tempted to give to your members is that if you have the 3 "S"s - swelling particularly of hand joints, stiffness that lasts more that 30 mins in morning, and squeezing of joints across your hand causing pain then ask your GP about being referred to a rheumatologist. Many GPs will want to do an ESR blood test first to check that there is inflammation, but i would suggest that your members try to get referred rather than convincing the GP and getting them to do more tests. Many people, myself included, are sero-negative, which means I don't have the RA factor in my blood so that test doesn't necessarily help at GP level.
Don't thank me, thank NRAS for the 3 "S"s description. And they have posters about it. I've put one up in my GP's surgery some has no excuse for not remembering now!
Yes I know - the link I included at the bottom (which probably should have gone at the top!) linke to that page on the NRAS website!
I just want to add to Polly's thoughts about GPs. I was "fobbed off" for 2 years by a clueless team of GPs. Then a young trainee arrived and she diagnosed me on sight by my swollen knuckle and wrist joints.
It all depends on their training and their interests as to whether they test for anything.
The Coeliac connection interests me though. Many of us find symptomatic improvement on a gluten free diet.
I've been gluten free for about 15 months. I can't say if it's improved my RA or not because I dropped gluten shortly after my GP had phoned and told me my Rheumatoid Factor was a low positive and my ESR was very raised. It has definitely helped with my gallstones and IBS type symptoms and has helped me to lose 3 and a half stone - which was desperately needed - so I stick with it 100% although I'm aware that this is not the same as having Coeliacs.
Regarding GPs my advice would be the same as Polly's - plus I would say that it helps if they do take the Rheumatoid Factor and ESR or CRP - but do not rule out referral to a consultant if these come back negative. A GP can't rule out RA so people in your group should pester their GP for a referral to a rheumatologist if the aches and pains continue. I think mine learned the hard way with a sero-negative patient who went undiagnosed by him for a couple of years and he took the tests and then referred me pretty sharpish but even then it took 9 months to be diagnosed. I was sure I was fairly borderline but now I've read your diagnostic criteria Becky I find I presented with about 7 points so this makes me feel less fraudulent thanks! Tilda x
I'll pass this on to our group. It's mind boggling to think that GPs can't order certain tests - and I thought coeliac diagnosis was bonkers?! It's also handy to know about negative blood tests. Many of our members have had these and been referred to Physio instead - worrying if they may have RA and have their diagnosis delayed.
Thanks for the tips. If you ever want to know more about a GF diet just shout. I know a lot of AI diseases / other find going GF help reduce symptoms - it certainly makes you think.
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