Feeling good- nearly at Zero! Gluten free too - PMRGCAuk

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Feeling good- nearly at Zero! Gluten free too

suzieh profile image
11 Replies

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?

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suzieh profile image
suzieh
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11 Replies
HeronNS profile image
HeronNS

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! :)

Celtic profile image
CelticPMRGCAuk volunteer

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!

PMRpro profile image
PMRproAmbassador

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.

daveD profile image
daveD

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.

greenheath profile image
greenheath

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.

Greenheath

PMRpro profile image
PMRproAmbassador in reply to greenheath

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!

daveD profile image
daveD

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

suzieh profile image
suzieh in reply to daveD

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?

daveD profile image
daveD

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

Kath567 profile image
Kath567

I have been gluten free since being diagnosed with another autoimmune condition a year ago. I lost 30 pounds and have easily adapted to gf. I believe autoimmune is a perfect storm of a number of factors, gluten maybe one, stress, genetics, etc. I doubt there is a single factor, but going gf has allowed me to manage my weight, question ingredients at restaurants, and focus on vegetables and fruits instead of fillers like bread.

Casia profile image
Casia

Suzieh

I have coeliac disease which as you know means I can’t eat gluten and like PMR is also an auto immune condition. It’s hard to say whether not eating gluten has had any impact on my PMR but I certainly have not had the severe pain that many on this forum have had. I also have thyroid problems so it’s quite possible all these auto immune diseases have a connection and perhaps one triggers another.

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