Category Archives: rheumatoid arthritis

Reporting back on my gluten free experiment

Reporting Back

The last time I blogged back in April, I was about to give up gluten, cautiously optimistic that it might improve the severity or duration of my flares. For about two months, I was practically pain free. I had continuous runs of days with no pain or flares or fatigue at all. I even had a full 18 day pain free run – the longest that I can remember for quite a while. I had good energy and when I did flare, it was short lived and generally mild.

I was strict with the no-gluten thing, and gleefully filled out my pain record app with 0 pain and 0 joints flaring more times than I had done since I’d started keeping records in September last year. I thought I had it cracked. Finally, after 10 years of not knowing what causes my flare ups, I thought I might have worked out a cause. And so that’s what I cautiously told people, that I may have cracked it. It felt like a major achievement. A eureka moment. A miracle. If only I’d known this years ago, I said.

And then… the flares resumed. Sometime, around mid June, my joints started complaining again. As before, there appeared to be no pattern. It felt as though my body was playing games with me. Flaring in a toe one day, my elbow the next, hopping from joint to joint, varying in its severity and length of time in each joint. I woke up every day, trying to guess where it would land today, and wondering how bad it was going to be. It felt like the arthritis was taunting me. “You thought I’d gone away” it seemed to say “but really, I was just sleeping for a while. Taking a rest. Now, where shall I hang out today? Shoulder? Maybe. Little Finger. No. Too insignificant. Wrist? Yes, why not? Not been there in a few days.” 

Still, there were pain-free days – sometimes as many as three in a row. But over the last month, there have only been four of those, and again the balance is tipped again, with pain and flares being the norm, rather than no-pain. 

Yet, I’ve continued to the no gluten diet. And it’s been a pretty healthy way to live overall. I’ve eaten way more fresh fruit and vegetables than I ever did when I did eat gluten, and avoided lots of sugary treats. I’ve got pretty inventive and imaginative in the kitchen, and have enjoyed making sugar-free, gluten free and vegan treats such as courgette and apple muffins, or brazil nut cookies from my Honestly Healthy cookbook.

So, here’s what I’ve concluded of my gluten free experiment.

  • My energy and fatigue has certainly still been better OFF the gluten than on it, even once the flares returned.
  • Eating out as a non-meat eating, dairy avoiding gluten free person is a nightmare and minefield.
  • I am using a lot of almond flour and dates in home-made treats
  • I’m eating WAY more salads, vegetables and fruit than I ever used to, and this is probably a Good Thing
  • I’m eating a much more varied diet too – eating lots of different salads for lunch instead of resorting to cheese on toast, or a cheese sandwich
  • Store-bought gluten free bread is rubbish and not really a real replacement for a decent healthy wholemeal, granary loaf.
  • Eating on the go is almost impossible. I’ve had to be prepared and bring lunches with me whenever I can, and things to snack on.
  • I’ve enjoyed being prepared – making gluten free pancakes on a Sunday to last the week, or sugar-free snacks to take to work (I have a new job).
  • I have NO idea whether my two pain free months which coincided with giving up gluten were a complete co-incidence or directly related to the giving up of gluten

So, I’ve decided to keep up the gluten free diet for a while longer. I think it’s better for me, I think it’s good for my energy, and if it isn’t the only cause of my flare ups, it could well still be a contributory factor. As long as I can eat a healthy, varied and balanced diet without gluten, I think I’ll continue.

I am going back to the rheumatologist at the end of the week. The last blood tests were clear, indicating that I’ve not yet progressed to rheumatoid arthritis. Not sure whether to try a different lot of ‘disease-modifying drugs’ (I’m still on hydroxychloraquine) in the hope that they will silence the flare ups more permanently. The trouble is, these drugs come with so many side effects (plus regular blood tests) that I am scared to try them. I spend so much time and energy not putting chemicals and horrible stuff into my body by eating healthily, do I really want to take a rather toxic drug? If it ‘cures’ the flare ups, will it be worth it? I can’t even be sure it’ll definitely work. So, I’ll probably put it off for yet another year, or until I can’t bear the flares any longer.

And the truth is, while the pain is a pain, I’m still functioning. I’m still working. I’m still pretty happy. I feel mostly good. I’ve faced the disappointment of the returning flares, and grieved for the pain-free days. I’ve had to re-realise that I can’t control my flares or my arthritis – no matter how hard I might try or how much I want to. And so if I have to live with it, I’d rather do all I can to stay well and healthy with it. 

An interesting piece of research

This morning, Arthritis Research UK tweeted a link to a report about some research, which found that “doctors and patients ‘differ on perception of rheumatoid arthritis disease activity’”. The research, done in Austria, looked at RA patients who had started to take methotrexate for their condition and assessed how differently they perceived their disease activity. Analysis found that while patients cited joint pain as the reason for their perceived change in disease activity, rheumatologists focused on joint swelling.

I find this research both interesting and reassuring. While my rheumatologist seems solely concerned with whether or not there is visible swelling and inflammation, I’m more concerned with the fact that I have some kind of joint pain for more than a third of the time. Of course, visible joint swelling is more likely to result in permanent joint damage and obviously, I don’t want that. However, as well as being concerned about my future, I’m also focused on the present and my quality of life.  While I’m glad that I don’t often get visible swelling when I’ve got a flare up, the fact is, I’m still in pain, my mobility or dexterity is still affected and often limited and my disease is still active. The fact that I do not (often) get visible swelling (though I do sometimes), was the reason cited by my consultant to postpone trying the methotrexate.

Naturally, both my rheumatologist and I are concerned with stopping the disease from progressing and from causing permanent damage. However, I often have the feeling that this emphasis has meant that the quality of life aspect of NOW is being forgotten. Even though I’ve had this condition for over eight years now, it’s only last year when I actually managed to get a referral to the pain clinic. I would have thought that someone in pain for over a third of the time should get a referral as routine within at least a year of diagnosis. If my GP and rheumatologist had giving joint pain equal weight with joint swelling, perhaps I would have done.

The article on the website quotes the research as saying that “many times there is a discrepancy between patients’ and doctors’ views of disease activity, with doctors providing a better rating than the patients”.  This somewhat also reinforces my perception that the lack of physical evidence diminishes the severity of my condition in the eyes of the professionals. Just because my flare-ups don’t come with visible swelling, does not make them any less difficult to deal with, or any less debilitating.

Most of the doctors and consultants have a thorough theoretical understanding of the diseases they deal with.  I wonder whether their attitudes and understanding would change if they were actually able to experience flare-ups for themselves. Of course, this isn’t practically possible.  In the meantime, I’m welcoming the news that Arthritis Research UK is “funding a study that aims to develop a new tool for measuring disease severity which takes into account the personal impact of the disease and factors that patients – not just those with medics – consider important.”

More about the Arthritis Research UK research can be found here: