Gluten intolerance & RA

[notagranny]

Hi everyone, just wondered if anybody has had experience of being gluten intolerant with rheumatoid arthritis? Something in my recent blood test results made my GP test for coeliac disease and the result has come back weakly positive - he is therefore suggesting I have a biopsy taken which can be quite invasive to see if I definitely have the condition – my rheumatologist has instead recommended I cut out gluten for a few months and see if it makes any difference to my RA symptoms. I've never had any symptoms of being gluten intolerant so it is all a bit mysterious!

Has anyone had a similar experience or tried cutting out gluten to see if it has an effect on their condition?

Thanks

-notagranny

[oldtimer]

I'm afraid I don't agree at all with your rheumatologist. Gluten sensitivity is SERIOUS. You should carry on eating gluten normally (if not more so!) until you have a definite diagnosis one way or the other.

If you have a look at how to diagnose it, it can only be done if you are actually eating gluten. Probably the best procedure would be to eat lots of gluten containing foods and have the blood test repeated first. Then have an endoscopy and biopsy, STILL EATING GLUTEN if the diagnosis is in doubt.

If you cut out, or even reduce the gluten in your diet, then the tests may become doubtful or even negative, but YOU don't KNOW whether to continue to be really careful or not. The tests rely on your body's reaction to gluten.

Lots of people who are gluten sensitive, don't have much in the way of symptoms, but find that they feel a lot better when they remove it altogether from their diet. But it needs a proper diagnosis.

If the diagnosis is not confirmed, then you might want to reduce your gluten intake to see if it makes the RA any better anyway, but that is very different from having to avoid it altogether for the rest of your life.

[notagranny in reply to oldtimer]

Hello, thanks a lot for your response. That's really how I feel and certainly what my GP recommended. Without knowing for sure I imagine it could be tempting to eat gluten. The procedure itself I'm not looking forward to as it sounds quite uncomfortable but at least I will know either way.

Thanks again

– notagranny

[Scottishlad in reply to notagranny]

I have had the test and found it not too much of a problem. It involves putting a camera down your throat into your stomach to collect a sample of the gut wall. I managed fine without a sedative though you will be offered this an option. The back of your throat is given an anaesthetic spray.

If you have the sedative you have to wait longer before they can let you go home.

[medway-lady]

Yes and ask to be sedated. Your either positive or not. I think you need to talk to your GP as this is a serious condition and being Ceoliac has made no difference to my RA, but the loss of weight as not eating bread, cake, biscuits etc probably has. Avoiding gluten can be expensive and you get an allowance on the NHS so its vital to get the biopsy and it can lead on to something else. Ask for B12 to be tested as well as Vit D too.It was my RA consultant who found mine but the GP who took over that bit of care. Plus the B12 jabs.

[andyswarbs]

I know I am not coeliac because I my colonoscopy and endoscopy said so. However I do have an intolerance to gluten. This state of affairs may be true for many people with RA. For people like me, gluten causes flares and other RA symptoms - but none of the complications of someone with Coeliac disease.

It may be, as my health improves towards remission that at some stage I may be able to eat an occasional slice of wheat-based bread, or even a normal-dough pizza. But I am sure I will never eat biscuits, bread and cakes like I used to.

[Em13]

I stopped eating gluten along with other dietary changes last September - and brought to an end months of really nasty pain. When I tried to reintroduce it, I found it had been causing the heart palpitations I'd been putting down to my age/stress for a year or so. My GP says that as it didn't affect my digestive system, it wasn't a problem and I should keep eating it. However, I felt much better without it, and I can tell when I have accidentally eaten products containing wheat flour by my increased heart rate. So I check labels very carefully now.

About a year ago, I did deliberately consume a heavy portion of gluten (a deep pan pizza), but that night I developed severe tendonitis in my right shoulder - so bad it hurt to breathe and I thought I was dying. It was only after that that I discovered that there are known links between gluten and joint pain/auto-immune conditions. Maybe the GP is right and it is safe for me to eat, but who wants to provoke avoidable pain?