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. 

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15 responses to “Reporting back on my gluten free experiment

  1. Eating out is a nightmare. I went to a chinese take out, and several times the person told me they had no free food when I asked for Gluten-free food. Finally someone with more knowledge came up and understood the question I was asking, and said only the rice and the sweet and sour sauce where gluten-free. I left, not being able to make a meal out of rice and sweet and sour sauce. I am doing my best to be gluten free as well.

    • Hi Richard. Yes, eating out IS a nightmare. But I think that some places are much more aware than others. Chinese is particularly tricky because soya sauce contains small amounts of gluten unless it is tamari sauce, and I guess most Chinese takeaways don’t use that. I am lucky where I live in Manchester there seem to be at least some places that can cope. I particularly like middle eastern food as there are lots of vegetarian gluten free options there. 🙂 Lunches are always harder because most lunch places do sandwiches or salads with cous cous, neither of which are appropriate for us

  2. I just wanted to suggest that all palindromic patients get a lyme and coinfections test done by Igenex labs, in California.
    I was diagnosed as palindromic for years and then finally tested very strongly positive for lyme. My doctor told me that the steroids I was being given for the rhuematism symptoms were actually causing my immune system to shut down. Now antibiotics are saving my life! A great book “Why Can’t I Get Better?” , By Dr. Richard Hirowitz, Is a great resource for any kind of autoimmune disease. Here’s hoping we all feel better soon!!

    • Thanks for your comment Jenny. I will mention this to the rheumatologist when I see him. i’ve never actually taken steroids for my symptoms. I’ve tried to avoid them as much as possible. I have previously tried antibiotics for my PR though and they didn’t seem to help. I have posted about this previously.

      • Jenny Schultz

        You are so smart not to do steroids….my breathing was being impacted and that was all the docs knew to do. I am now on a mixture of several antibiotics and anti malarial drugs and many herbal remedies as well. It has taken several tries to get one that works and a long enough time frame. NOT to say all w palindromic are lyme cases, however when I see so many people suffering with the same symptoms I have, I just can’t help thinking it could be lyme in many cases. I know it is very close to impossible to get an accurate test, or even a lyme knowledgeable doctor in the UK however maybe someone somewhere might just be lucky enough to get some relief!! Good luck Ruth!!

  3. I’ve also changed my diet and found that it has significantly reduced my flare ups. I have been concentrating on lowering my saturated fat intake and have managed to drop my overall body fat percentage by over 8%. I’m also going to the gym almost daily. The changes for me have been significant but I still feel I have a long way to go.

  4. Glad that the changes have helped, and well done for lowering your body fat. I do think that exercise helps me enormously (when I can do it), if only to improve my mood and ability to cope. Hope you can keep up your daily gym visits.

  5. After years of being treated for gout I was diagnosed with PR after the migrating pain became so mind bending that I could no longer take it.. My primary sent me to a Rheumatologist who’s only suggestion was Drugs. At 42 years old I was not ready for a life of toxic meds so I went for a second opinion and again was told that the only option was drugs. I found a functional medicine doctor in the Boston area who took the time to investigate the possible root causes of the situation not just treating the pain! We discovered that my occupation had exposed me to lead dust and she tested me for lead. The result was I had lead levels three times the normal limits. We began a plan to eliminate anything that may be irritating my immune system, no dairy, gluten, red meat etc…as well as detoxing the lead from my system. Immediately I began to see results, at first going three or four days pain free then weeks and I remember eighteen days was a mile stone!! I lost twenty pounds and did have a couple of days that it let me know it was not going to leave quietly, but the end result was after six months it was gone. NO Pain, its been two years now!!!!!!!
    Please know that there is an answer, keep looking I think you are on the right path.
    Hope this helps.

    • Wow. So glad that you have found a cause and that things are better for you – and for so long too. It’s always heartening to hear that some people go into remission. The stats show that about a third of us diagnosed with PR do. After ten years, I’ve given up thinking that I might be one of those people, but yes, I will keep trying to see if there are any answers I’ve not yet found. Thanks for the encouragement Tom and may your painfree, healthy lifestyle continue. 🙂

  6. I have been gluten free for ages and you are right – food-to-go is horrendous but I’ve narrowed it down to a few…. Pret (or Konditor & Cook when in London) for lunches, nakd bars, coconut water and lots of nuts!

    I tried a Costa gluten free wrap the other day – don’t do it!

    • I love Nakd bars, though I now make my own similar snacks so I can make them slightly less sweet. I found a good salad in Pret yesterday but OMG it wasn’t cheap! Whenever I look at the various GF processed food options, I just put them back, there seem to be so many unsavoury ingredients. Going gluten free for me is about trying to eat better, and stuffing more chemicals in my mouth doesn’t seem in keeping with that.

    • but I shall check out Konditor & Cook when I’m next in London, so thanks for that tip> 🙂

  7. Like you “I’ve faced the disappointment of the returning flares, and grieved for the pain-free days.” In my case, the lull appeared to be initiated by a two month run of steroids as my Rheumy attempted to shock my system out of a particularly bad season of flares. Though there’s no concrete evidence it wasn’t a coincidence, I like to hold on to the hope that would work again if I get desperate, But also like you, I don’t want any drugs I absolutely can’t live without. And now that I’ve been diagnosed with osteoporosis, I am doubly frightened by additional steroids.

    With a very high anti-CCP blood test, I have to consider it a blessing every day that I don’t have full blown rheumatoid arthritis. When I hurt, I thank God that it will most likely go away in a few days or weeks. But I’d like a fix, if possible. I’ll continue to follow your progress with the gluten free; maybe that will be an option in the future.

  8. This is all really interesting and I’m keen to find out if your gluten free diet starts to help with your flare ups again. I’ve been trying the Margaret Hills Cider Vinegar Diet which I found totally amazing initially. For the first two weeks my pain was horrendous (as they suggested might be the detox period!), but after that I had day after day of no pain at all, it was amazing! I had a whole month or two or no pain, it was amazing but the diet (I think) has started to upset my stomach so I’ve come off it and my pain in back worse than ever. I’m at a loss to know what to do next. Has anyone else tried this diet? It is a nightmare to know what to eat, plus I’m veggie, but I’m willing to do anything to help my pain, but not if the side effects is a permanent upset stomach!

    • Hi, thanks for your comment. I’m sorry the cider diet wasn’t what you hoped. I’ve not really heard of it to be honest. I’m going to write a longer post very soon, but briefly, what I’m doing is trying to eat as ‘clean’ as possible. Cutting out refined sugar, processed foods as much as possible, plus staying off the gluten and dairy too. I also don’t eat meat, so it’s tricky going out to eat, but at home I’m cooking and preparing a lot of my own stuff and it feels pretty healthy. I did a couple of healthy detoxes and they have helped my energy. Overall, I am having fewer flares and have better energy at the moment. It’s hard to know if it’s the diet contributing to that but I want to stick to it for as long as I can and see what the difference is over a longer period of time. I’m also doing yoga daily, pranayama (breathing exercises) and meditation. I’m living as healthy a life as I can. I still flare, but they seem to be shorter lived than before.
      Someone has suggested a more intense detox but I’m going to stick with this lifestyle for a while before I try anything else.
      I had gluten twice in the past six months. Once, I had a terrible flare the next day for three days, the other time I was terrribly fatigued and full of brain fog. Those two incidences are enough to keep me avoiding it for the time being.
      Good luck!
      When I do a post about it, I will link to some sites with good recipes of dairy, wheat and gluten free meals.

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