Anti CCP: Just wondering if anyone has actively tried... - NRAS

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Anti CCP

18 Replies

Just wondering if anyone has actively tried to reduce their CCP levels through diet etc and has it worked

18 Replies
charisma profile image
charisma

I use various strategies to keep inflammation down but nothing prevents a flare, in my experience.

But good whole foods help with overall health and ability to cope. 🙂

helixhelix profile image
helixhelix

Why would you want to check this?

Anti-CCP is an antibody that develops in response to certain peptides and proteins. And these peptides and proteins MAY be as a result of inflammation, but the mechanism isn’t really known. And the correlation between the level of anti-CCP and the severity of the disease is also a bit vague.

So personally I’m not at all interested in what my anti-CCP antibodies are doing now. It was useful at the start as being positive made diagnosis more straightforward, but these days it really doesn’t matter. And I have never been tested again. Do you have a reason to be interested?

What interests me more is how my liver and kidneys are coping, and general inflammation levels.

And diet may affect inflammation levels in some people, and it may not. it doesn’t in me....

JFlay profile image
JFlay in reply to helixhelix

Hi HH, sorry if this sounds daft but I don't know my results for this test or if I was tested? Is it the hospital or GP that does this one? I know my RF and ESR were done at the beginning and CRP is done monthly but no one has mentioned anti-CCP to me 🙄

helixhelix profile image
helixhelix in reply to JFlay

Don't worry about it. The test is rarely done by GPs, so may well have been done by hospital. But if your diagnosis was obvious then perhaps they didn’t bother. On your consultant letters does it show the diagnosis? Ie are you down as sero-negative or sero-positive? That gives a clue.

If you want to, just ask at a future appointment. I always think it’s good to be informed.

JFlay profile image
JFlay in reply to helixhelix

Thank you very much! Yes, diagnosis is seropositive RA.

wishbone profile image
wishbone in reply to helixhelix

helix, my GP did a blood test when I first complained about pain in feet and knees. I was called back for the result and told that I had RA, no mention of being seropositive, but presume that I must be. Would my GP needed to have tested both CCP and R factor for a diagnosis, or can you tell by testing either one on it's own?

in reply to helixhelix

The hospital were checking my CCP every couple of weeks.

I took a reaction test everything was fine

The reason I asked is that my level was high six months ago. Since then I have been eating by the book and only organic home grown produce and now it is fine.

It goes to show how foods can cause us problems.

helixhelix profile image
helixhelix in reply to

You had Steven-Johnson syndrome didn't you? Maybe that was why they checked it so much, as generally I’m not aware that people bother to recheck much after diagnosis.

I’m not saying that food isn’t important - changing my lifestyle has really helped me in many ways (just not with inflammation levels 😐). It’s just that there’s no way of proving whether it was eating something, or not eating something, or the drugs, or mere time, that helped you. But the important thing is that you now feel better!

alexask profile image
alexask

When I first got RA symptoms (swollen finger, stiff hands in the morning, painful ankles) I took a food reaction test ( about £100 through cerascreen) . This showed a reaction to Egg Yolks, wheat and oats. My blood test came back ok. But I found that avoiding oats particularly and on occasion taking Bicarbonate of Soda eliminated my symptoms. So avoiding foods can help.

Hezekiah profile image
Hezekiah in reply to alexask

Darn, I always thought that oats were one of the good guys

alexask profile image
alexask in reply to Hezekiah

I think it is a very individual reaction for everyone.

Fruitandnutcase profile image
Fruitandnutcase

Sorry, don’t know about CCP but I massively reduced my thyroid antibodies and my CRP has reduced by going totally gluten free about five years ago. I’ve also reduced my sugar intake as a result of that and I eat very little dairy produce, so I think working on diet can work - I don’t eat junk food, sweets and cakes etc or drink fizzy drinks.

helixhelix profile image
helixhelix in reply to Fruitandnutcase

There does seem to be more evidence that thyroid antibodies can be affected by diet. As I said to Minty...is it the not eating junk food or the adding in good food that made the difference I wonder? Cutting out processed junk helped me, but apart from that I can eat whatever I like as long as it’s pretty natural.

in reply to Fruitandnutcase

I have stopped everything bad, all processed foods and I can honestly say that I feel alive again. I am craving a mc Donald’s chicken legend meal but know it’s a no, I have even dropped ground coffee

AgedCrone profile image
AgedCrone

In your dreams Minty....just eat healthily, don’t smoke & take the medication your rheumy advises....that is a good start to getting things under control!

I am honestly convinced worrying about test results we have no control over is a futile exercise.......

in reply to AgedCrone

All my vegetables are coming from my garden, the milk is coming from a local small holding that is completely organic and I have now swapped to goats milk. I seldom eat meat, don’t smoke or drink, no chocolate biscuits or junk foods.

Although that are changing my meds again I actually feel a lot better without pain,just stupid stiffness all the time and allowing me to reduce most of my pain medication.I am in the wrong body.

The consultant told me on Tuesday that they are still monitoring every very closely and I am on two weekly blood tests.

My health care team are brilliant and actually bother to take the time and listen to me, it is nothing to do with the fact I am now dating a consultant as they have always been great.

Pawz4me profile image
Pawz4me

As HelixHelix said, I don't give a thought to my anti-CCP (or rheumatoid factor) levels. Mine were checked once when I was in the process of being diagnosed and I doubt they'll ever be checked again. My understanding is that as far as anyone knows now they're useful for diagnostics only. A high level of either (or both) is certainly an indicator of what disease a person may have, but in and of themselves they don't impact symptoms. We have plenty of people on here who are sero-negative who seem to suffer just as much or more than people with high positive anti-CCP or RF. Plus I'm guessing those levels fluctuate somewhat all the time, probably due to numerous factors. Correlation does not equal causation, so who would know what affected them? If I'm on medication (like most of us here are) and I changed my diet and the anti-CCP came down why would I assume it was diet instead of the medicine? Or reduced stress or some other lifestyle factor?

Originally I was seronegative, and was for 13 years. But my Rheumy must have tested my CCP level again because she announced I was now seropositive.

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