As well as being coeliac,my doctor now suspects I have arthritis. Is there anyone else here having to deal with this & any advice please

[Ajm1]

[Hidden]

Before I went gluten free. I had arthritis in both my hands, my joints were so painful I would drop stuff...and I was taking anti inflam, slow release pills...

Now 15/16 months on its not giving me any pain, and the swelling has gone down. I am mega careful with my gluten free diet, I eat no processed foods.... I make everything from scratch always have done.....so far I've not had any pain back in my hands...

How long have you been gluten free?

Janie

[Ajm1 in reply to Hidden]

I was only diagnosed at 28, nearly four years ago. I'm really good with my diet and cook everything from scratch. I have always had pain in my bones from a very young age, the doctors always put it down to growing pains. Recently the pain in my back feels like its burning and I have a tendency to drop things. I only went to the doctors because its having a severe impact on my everyday life. I get the results of my blood tests on 24th April so I'm hoping it will show something so I know what I am dealing with

[FionaGFG Administrator]

A burning pain can be sciatica and related to nerve/ disc issues. Blood tests often won't show that up you'd need an MRI. To test for arthritis doctors run tests to check for inflammation in the body i.e.

Erythrocyte sedimentation rate (ESR)

C-reactive protein (CRP)

Full blood count

Rheumatoid factor

Make sure you find out from yr Doctor what tests they've run and what the actual results (numbers) were.

If you have arthritis often the bones in your hands and feet will be sore and will show up on x-rays as arthritis.

Burning in your back doesn't sound like arthritis to me. But see what the results are.

Does it feel like you've been kicked in the back by a horse? Are you stiff for 30mins + in the morning?

[Ajm1 in reply to FionaGFG]

Definatly very stiff and difficult to get up! The blood test was for everything you mentioned and she has asked for another coeliac screen. I'm also short of breath doing normal things like carrying shopping and walking up the stairs. I can't get up properly when I have been sitting down, it's just very painful. I am cold all of the time and have extreme tiredness which means I can't sit my exams next month so I will try in July.

[Jenniep85 in reply to Ajm1]

Do you know if your doctor is checking for ANA antibodies when doing your bloods and a thyroid fundtion test? I have Coeliacs Disease in combination with Lupus and underactive Thyroid and I suffer from symptoms you are describing, especially the extreme fatigue and the feeling cold. If not and they are doing more tests always worth asking if they can do these at the same time as unfortunately it can be in for a penny in for a pound with autoimmune issues.

Hope you get answers and feel better soon

[FionaGFG Administrator in reply to Ajm1]

You need to discuss this with your Dr and request a fast track to a muscular skeletal assessment by a good physio. They will assess you and work out if you have a disc issue or muscular issues which are causing these symptoms. I ended up in A&E as my Dr was very slow and didn't take me seriously - do not be polite like me. Push for a proper assessment!

Plus: your other symptoms sound like classic vitamin and mineral deficiencies. Are they checking you for

- iron (low makes you v cold, with loss of hair and shortness of breath)

- vitamin D (low makes you v tired and lack energy to walk with bone & muscle pain)

Plus

- thyroid (if this is a problem you can be v tired, cold, either under or overweight, have a foggy head, feel depressed a lot, have problems breathing)

Also ask what your DEXA bone scan result was. You should've had this at diagnosis to rule out osteoporosis from coeliac. If not - tell them you need one.

Get your Doctor to their job. If these are due to low levels due to Coeliac then once they are upped you can do your exams - don't put your life on hold due to something simple. Do push for the physio too. Although low vitamin D can make you stiff it's unlikely to do so. The Dr will tell you that everyone in the UK is generally low in Vitamin D which is true as we don't get much sunlight. However, coeliacs can't process it properly due to the villi damage so often need injection boosters at diagnosis (I am still having to have one each year!). And anyone with darker skin tone takes longer to absorb it in the sun and is at risk from vitamin D deficiency. Although often people with fair skin tones are very low as they burn so easily and are often wearing sunscreen which stops it being absorbed.

So Ajm1 - get to your GP - be pushy and update us on the next steps. Don't suffer.

[Holly10]

The pain I used to get in my hands has disappeared since I stopped eating dairy. The other thing you might consider is your Ph balance. There are plenty of books around on the subject, it isn't as daunting as it sounds, I'm interested in it because I have osteoporosis and it helps preserve your bones.

[Angelbelle]

My Doctor is aware that I have arthritis and osteoporosis, I consider myself gluten intolerant as a blood test did not confirm that I am a coeliac. I feel there is a link between gluten and the painful joints.

[Fifitricks]

Hi I have arthritis in fact I have both thumb joints injected yesterday (agony today) I have had it for a number of years and I must say that knocking wheat, gluten and the rest out of my diet has made no difference what so ever. Every body reacts in a different way go to your Doctor and get checked out xxx

[pretender]

I have Osteoporosis 2008, Osteopena 2011, Degenerative disease of the lumbar spine and both hips with lytic lesions on the right hip (not cancer). Yet two Disablility Living Allowance Tribunals tell me I have Arthritis. If in doubt keep pushing for an answer your happy with.

[Mango1]

Hi Ajm1, are you able to do any exercise to stretch your back and limbs. I have a degenerative lumber spine and had an operation two years ago with rods and cages inserted. It was also discovered that I have arthritis in my back and my hands. I was given a fantastic set of exercises to do 3 months after my op and I still do them now 4 times a week. I don't think that the op would have been as successful without me doing these exercises. Could you ask to see a physio who could take you through some exercises which would suit your specific problems. I think the less you do the more you lose the ability to do. I am gf and lactose free, but am not sure if this impacted on my joints when I was taking them. Good luck with your exams.