Polymyalgia - a multiple problem?

Hi Chris!

Welcome and I've just mentioned you on our mega-long thread that's been running a while.

I too eliminated commercial wheat from my diet a few years ago as I react with a horrid rash but there has been no evidence it is dermatitis herpetiformis which is closely related to coeliac disease (mainly because of an unhelpful dermatology consultant) and the local coeliac expert said if I could keep my symptoms under control he didn't think it was worth the unpleasantness of an endoscopy! My blood test for coeliac disease was negative but that isn't conclusive anyway.

I can eat spelt and kamut, which are both ancient wheat forms, rye, oats without problems and they are all easily available here in northern Italy but in Britain I did eat a pretty much gluten-free diet except for oats - unfortunately it didn't prevent the tiredness of PMR which had been going on for 4 or 5 years and which struck in force early last year.

Well done on making your own bread - my friend does and it's not bad. I can't bothered and just did without until I moved here :-)But let's face it - anything could be better than the stuff you can buy!!! And I wholly agree about the science of wheat development!

EileenH

What a nice short thread, so far! Anyway some weeks ago I was discussing diet etc with an alternative health practitioner. Lots of stuff about organic etc. but she mentioned bread. Her theory was that our flour (mostly Canadian) does have somethngs added but French bread, or bread made with French flour is fine. Try Maison Blanc she said. Anyone felt better in France? What about Italian bread, Eileen, or is it always pizza?

One does have to differentiate between a wheat intolerance and true coeliac disease, which my son-in-law has. He can't touch spelt or oats, let alone wheat, and lives off rice and potato flour.His initial symptoms were vast loss of weight, constant diarrhoea and stomach cramps. He was extremely ill. I think we would know about that one.

Green granny

Hi Green Granny,

You have just solved a mystery for me.

For ages now, I have not been able to eat bread, especially a sandwich lunch. I have, however been able to eat French bread without suffering digestive problems. I never knew why until now. Thank you.

Have you any idea what is added to the Canadian flour?

Tilly

Sorry Tills, don't know though I'll see if I can do some research on it. I do know that English flour doesn't have as much gluten as Canadian so you don't get a very good rise. I seem to remember from some TV programme that the bakers invented a new process which improved matters and English wheat is now used more.

Sorry to be so vague - is this ringing a bell with anyone else?

I have NOT had a good Easter and I'm just wondering whether I have had very different food??????Even today, lovely weather here, when I would expect to have more energy etc. I have just been crawling around and I can't come up with any reason.

Oh well, tomorrow is another day! Green granny

Hi Tilly and GreenGranny,

I don't think it's additives as such but that the wheat types are different. British white bread is made with hard wheat flour (same sort of flour that is usually used to make pasta) whereas French bread is not only made with flour made from soft wheat but is also made using a sourdough technique where a starter dough is made and left for some time to become sour before adding more flour to make the bread dough. This has always been regarded as more easily digestible for some reason and is also has much more flavour. The same technique is generally used to make rye breads in central Europe and a good sourdough rye bread is a thing of joy! There are some pretty mean white ones too.

GreenGranny - no, ordinary pizza and ciabatta had the same effect as the grotty British stuff! However, the pizza chef in the village makes me spelt. gluten-free or rye bases for my pizzas :-) , lovely man! If I want cake I get buckwheat cake which is a local speciality being up in the mountains. Having excluded wheat for so long I can now get away with minor itches if I get the chance to eat really super-duper hand made sourdough. And then it's worth it! But the kamut is nearly as good. And yes - I do know all about coeliac disease as I was a member of a coeliac support group in Durham as it was far and away the best way of finding out where you could get things or go out to eat safely. I did also discuss the problem with the local specialist who was a colleague of my husband.

Quite fancy a pizza now...

EileenH

Just in case anyone has to have an endoscopy( see Eileen's consultant's remarks above ) I can say that I found the whole experience fascinating. Lovely nurse and doctor who, when I said please no anaesthetic if poss. said if I was good and did exactly as I was told he'd agree. So I did as I was told for once and my throat was sprayed to relax the muscles ( tasted a bit like advocaat !) teeth guard put in and tube inserted. I was then told swallow now. I did and it felt like swallowing a biggish piece of dry bread. That was it and I could watch the whole examination and ask questions.Very satisfactory. It also meant I could drive myself home. The most unpleasant part for me was waiting the required time beford I could have a cup of tea. ( Throat muscles have to adjust )

I will just say that I have no trouble swallowing quite large pills. A difficulty there might put a different complection on the procedure.

Hello Green Granny sorry to hear you arent feeling to well

I personally cannot eat too many carbohydrates I dont have any allergy but if I have a calorie loaded (all the nice things puddings cake too much bread !! ) which all comes with any sort of celebration I just feel really sluggish and tired for a few days I dont have any particular allergy ( except onions which give me migraine and what you could call a heavy hangover !!!) I really feel best on salads fish not too much meat but unfortunately its not very exciting is it ???

Tried too give up coffee (dont drink masses ) when I read it was one of the adrenal glands triggers but got really bad headaches so decided I didnt want that as well as PMR aches

Am still OK on 10mg but just going from day to day Blood tests at the end of the month so that will be interesting as it will be 2 months and I have been having monthly ones and think I was getting addicted to them and my Dr said to only have one if I didnt feel well enough to reduce the doseage I need to relax a bit as I am obviously in for a Marathon not a sprint !!

This nice weather has really cheered me up and I have banks full of Primroses in my fields and Bluebells are on their way I just dont want any more rain !!

Best wishes to all

Hi Mrs G, Glad to hear things are still OK with you. After going up to 15 mg like you I came down easily to 12.5, but am having real problems going from 12 mg to 11mg. Doing all the usual \"Ragnar Stuff\". Sorry, Ragnar if that sounds rude - it's really useful.

Thinking about Easter, it was hot cross buns (love the spice), chocolate cake, Easter eggs, more alcohol than usual, more ready made stuff generally, so maybe that's some of the answer. I certainly do better on veggies, fruit, the ever useful yoghourt, and fish. I guess it's the amount and richness rather than anything specific that I have any sort of allergy to.

New doctor has been looking into whether I have something else going on as well as PMR to cause flare up. Blood tests all came back negative but I had a chest X ray which he think is showing some sort of chest infection so he wants to listen to my chest - he phoned me up about all this when he got the X ray back so one up to the medical profession. Well, he's away, then I am and I don't want to go back to the other Dr who wasn't much help so I've just got to wait and see for a couple of weeks. I don't have any coughs or suchlike so I didn't rush to get the X ray done.

Yes we have lots of primroses out and I have been sewing seeds in my greenhouse - much more fun thancleaning the house! Love to the horses, Green granny

Hi Green Granny, Eileen and all.

Thank you for the information so far on additives to flour. Whatever it is that causes problems seems to be in ordinary bread but not in French bread.

Mrs G, like you, I can't eat too many carbohydrates withour feeling yuk! There is a theory that as refined carbs have only been around since the Industrial Revolution, some of us haven't evolved enough to eat what is mostly rubbish in nutritional terms. I am talking about sugar and flour based foods.

Tilly

Well, Tilly, refined carbs. just about sums up my Easter! I suppose in a good state of health our bodies manage to cope but once PMR strikes we need to do everything we can to help our poor selves.

Having said that I've just enjoyed my bedtime snack of muesli mixed up with yoghourt plus an apple chopped up, definitely leaves me feeling fresher and not bloated. It's just when the dreaded chocolate urge hits us........

Sleep well,everyone, Green granny

Hi Green Granny,

When you are bored or sleepless, have a look at :

http://www.second-opinions.co.uk/

I find the site full of interesting information. Barry Groves seems to be so far ahead of current opinion.

For instance, he has always advocated an English breakfast and has always questioned the 'five a day' mantra.

Just this week, I have read newspaper articles supporting his theories on both these subjects. His website is definitly worth a look.

I have several of his books and they are worth reading as they make one question the Government's advice - I make no further comment!!!!

Tilly

Oh dear!

All I did was to recommend a website with some interesting information.

I do understand why this had to be referred to a Mod but hope that it will be allowed as it is informative only and I have no personal interest or influence in the site.

Tilly

Tills - I had to be approved the other day so you can stand in the corner with me!!! :oops: Seriously though, aren't we lucky we've got these moderators protecting our site....well done them! MrsO

Hi everyone

I have followed all the posts regarding bread with interest and thought I would just add my two pennorth.

Like Chris, we also make all our own bread.....well at least my hubbie does. He did a favour for a friend and was surprised with a lovely gift of a Panasonic breadmaker. We always stick to wholemeal and I restrict myself to just two slices a day (watching the carbs - necessary whilst on steroids!) We're happy knowing that we are not having any bread additives and another bonus is the wonderful smell wafting through the house. We always share the wonderful fresh crust (well I suppose I've got to if he's made it!). I can't recommend it enough and it is so simple to use and only takes about 5 minutes to prepare a loaf, the machine does the rest.

As for Canadian versus British flour, I bet the reason that some of you are finding less problems with the French bread is that it is made with Canadian flour. I gather that whereas we use different flours for bread, cake and pastry in this country, the Canadian flour is all-purpose and we may give it a try in the breadmaker.

Like Mrs G and Green Granny, I also suffer lethargy (not actual allergy) when I eat the wrong foods. Feeling much like that since over-indulging in all the wrong foods over the Easter weekend and, in fact, seemed to have a real flare-up of symptoms on Tuesday/Wednesday this week. I have toughed it out, got back on to my oily fish and other anti-inflammatory foods, as I really don't want to increase the Pred again after getting down as low as 2. Today is much better although did have to sit down for a few minutes during a riverside walk this morning. I'm just in awe of you, Eileen, who manages to ski in the cold temperatures every day in spite of having PMR.

Green Granny - I hope that you, too, are feeling better than over Easter, especially with the sun shining today - long may it last. You mentioned that like a lot of us you have been trying to reduce following Ragnar's successful reduction regime but without success at the moment. I noticed in his most recent post he mentioned not having suffered pain but just stiffness with PMR and that surprised me. Both my pain and stiffness have at times been horrendous and I feel I've got quite a high pain threshhold as over many years I have usually managed to have my teeth drilled without an injection. I know that MrsK has mentioned in the past that men do seem to have different PMR symptoms to women and different reactions to the steroids, so I am now left wondering if what worked for Ragnar may not be the same for some of us. Will have to just wait for that first lady to follow the same regime AND be successful.....and, most importantly, let us know.

Enjoy the sun everyone and hope it heralds a much more comfortable summer for you.

MrsO

Good morning Tilly. Mrs G Mrs O ane everybody else! Sun's shining again. Hurrah.

Looked at the website, Tilly, interesting because I had picked up on the radio yesterday that the famous \"5 a day\" don't help avoid cancer significantly. It does all make one wonder who to believe - including politicians at the moment.What I am beginning to believe in, more and more, is listening to my own body. Clearly, several of us over Easter have felt we've eaten in a way that doesn't suit us (mostly too many refined carbs) and have felt the worse for it. I had a day on Tuesday , Mrs O, when I could hardly move, not pain, but absolutely no energy. But it does seem as well that any sudden changes to a so called healthier life style have repercussions e.g.caffeine withdrawal leads to headaches. Maybe we're all allowed our \"poison\" if it makes life easier! I wouldn't want to abandon my fruit and veggies - they seem to suit me (except the more indigestible ones like cabbage which if I have it at supper gives me hearburn) but I'm pleased to be given the OK to eat butter rather than marge by Barry Whatever his name was! It tastes so much nicer apart from anything else.

Enjoy the sun, Green granny