Feeling good- nearly at Zero! Gluten free too

Now only taking 1/2 mg on 3 days a week. Soon hope to be off the pred. Feeling really well. Had a setback 2 weeks ago- lots of meals out and entertaining at home. Digestive system really upset.....joints sore, feeling rough. Researched on Internet and decided to go Gluten free. Within 4 days back to normal and feeling so much better overall. Energy good. Now need to stick at this diet for a while. Bonus is iv'e lost 4 lb. is this steroid reduction or lack of gluten? Pleased I like pop corn and rice cakes! Gluten free foods so expensive - will now be researching gluten free recipes to see what I can make myself

Article in recent Daily Mail mentioned sore joints, immunity system, and gluten intolerance. Any one else has opinion on this?

9 Replies

  • Very interesting. There is some debate about whether the astounding increase in "gluten intolerance" is actually caused by the use of the herbicide glyphosate as a desiccant on wheat at harvest. It would be interesting to know whether you would have had the same reaction to organically grown wheat. Hope your recovery continues - you seem to be doing really well! :)

  • Suzie, great news! Whether the 4lbs weight loss is due to the steroid reduction or the lack of gluten is hard to say - it's probably a bit of both! I haven't personally tried a gluten-free diet, but I do very much stick to a diet full of anti-inflammatory foods, and I know exactly what you mean about feeling below par after periods of indulging in lots of restaurant trips and entertaining at home. Good luck with experimenting with gluten-free recipes - one of the members of our PMR support group brought in some home-baked, gluten-free cakes one day - they were sooo delicious!

  • I was gluten-free in the early days of PMR - I had developed a wheat allergy and the only way to avoid wheat in the UK was to go gluten-free. I can however eat spelt, kamut and soft Canadian wheat, the stuff they use for making French bread. The NHS site says this is quite common and for many people the allergy is to something in the structure of the highly commercially developed wheats. What I would wonder about organic wheat is whether it is a different variety and so structure - many organic foods are developed for resistance without pesticides. However - given the unpleasantness of the eczema I develop I'm a bit reluctant to experiment.

    It certainly wasn't gluten as such as I also reacted to the then gluten-free products made with washed wheat starch and the other ancient wheats and rye all have gluten. I still only eat very little bread and stuff as I depend on restricted carbs to lose weight - only thing that works for me. My big treat here is buckwheat cake - buckwheat is related to the rhubarbs - which is a local speciality with a cranberry jam filling and I love it.

  • suzieh i also am trying gluten free, i find it does help my digestive system,it is not the wonder cure for me but i stick with it for helping with bowel movements.i dont know if you are aware but there is a community on here, Gluten free guerillas ? you will get loads of info.best wishes for reduction.just to add if you do one thing try making your own Bread, super market bread is AWFULL&Exspensive .Dave.

  • Hello. I've grown so very tired of the weight gain, having put on nearly 20 lbs since the start of PMR 3 years ago. Perhaps gluten free is the answer. None of my clothes fit me anymore! Frustrating, expensive and a real bore. My moon face is just ghastly. I'll try gluten free, but happy to hear other tips which work.


  • Cutting carbs generally is probably just as good as gluten-free when trying to avoid weight gain with pred.

    If you do do gluten-free beware - the manufactured Freefrom products are often even higher in carbs of all sorts and sugar especially than normal products - they need a lot of gumpf to make it taste better!

  • morning suzieh. just a thought spotted a article on Gluten free site this morning M&S have increased the GF products they sell. i hope to take a look around today.Dave

  • Thanks for info - just started to think about it properly. Have been munching rice cakes but will probably get fed up with these soon! Need to investigate what is available in the shops.

    Have you any favourites you recommend? Or things to avoid?

  • Evening suzieh. dont know if you have been onto gluten free guerillas? if not you can click on My Communities at the top & it is full of good info.M&S have a good selection of gluten& wheat free products. i like yourself i am still learning the ins & outs of this diet, having got to zero on pred. having spent around 2 years trying to explain to folk about PMR, i am now left trying to explain why when out for a meal ; no i can not eat that; and the odd looks i get. But for now i will stick with it,Best Wishes, please do not be tempted to rush this last bit of your reduction plan, and stay strong. Dave

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