Diet and PMR

" .....haven't been able to for years without developing a really itchy rash, not immediately but a bit later and always in the same positions."

have you considered if this might be dermatitis herpetiformis ?

I did yes rex because it did fulfill quite a few criteria. I asked for a referral to dermatology and was told to come for a skin biopsy - but noone told me I needed to eat plenty of wheat in the 2 months up to the biopsy so when I arrived and the VERY snotty dermy consultant asked where the rash was - there wasn't one. The dx of DH actually depends on the marker being found in normal skin, not in a lesion, so it never occured to me it mattered. Said dermy was very rude about wasting her time and sneered at the nurse who asked should I be given an appointment "soon" that "it wasn't cancer...". So I discussed it with the local coeliac specialist instead. At that time in the UK most of the gluten-free baked products were made with "washed wheat starch" - no gluten but still wheat and since I reacted to that and am fine eating pure rye and even spelt he felt it most likey wasn't coeliac/DH but an intolerance of something in the structure of the highly commercialised wheat grain and resulting from "leaky gut syndrome". His opinion was that if I could control it by diet that was fine - he didn't subscribe to the "not keeping to a gluten-free diet causes colon cancer" view. He believes that the genes for coeliac and colon cancer are closely associated and that is why the rate in coeliacs is high.

Occasionally there is something that I feel is worth itching for ;-) and have found that eating something just once a month is no problem. More often and I get a mild rash but nothing like it used to be when eating wheat regularly. Living in Italy makes it easy - they know what is in their food as they prepare much themselves and there is a very high rate of coeliac disease here so they don't treat you as precious when you ask. The village pizzeria makes gluten-free and other-grain pizza bases to order - no problem! The UK is a whole different kettle of fish - steak or salmon and salad is default. And often not even that because it comes ready prepared and they have no idea what is in it. At least the new EU law will help that - if anyone can manage to conform to it! 

Thanks for your answer.

I was at a Christmas fair and was made to sample sweet coloured macaroons stuffed with various sweet fillings.

OK I could have refused but for some reason I just couldn't stop eating them! Pred trigger?!

 I am sure what we eat does have an effect on how we are. I am not prepared to increase Pred dose but will now knock carbs and sugar for a detox.

DJ

Ah yes - possibly something I would have had a nibble at whatever they were made of, and macaroons should be safe for me (no wheat flour). they seem to be all the rage in the UK these days! See - you should avoid Christmas until at least December - though I gather Innsbruck has also started their Christmas markets. Bah Humbug!

No idea what I said to rex to be subject to moderation! 

These sweet things can be a problem which I need to learn to resist.

I love to bake....

I was just thinking much the same yesterday. My main hobbies were cooking and baking - had to give up baking because no one ate the things, just not a cake family really. We raised money for an exchange to Iowa by making cakes and selling them after church - could indulge my baking skills and not eat them which was fine. Only went on a few months though.

And the cooking went by the wayside when all that was left was him and me - and between us we eat less than 1 "normal" appetite! Just not worth the effort...

I have tried to cut out simple carbs and gluten, although I may have the odd biscuit. If I had a meringue or Eton Mess for example I reckon the PMR pain really turns itself on. Of course it may be all in my head. In fact cutting down on simple carbs seems to be good advice for anyone. I do try and eat anti inflammatory food too and have become quite a food bore. On the other hand a healthy diet has got to be good news I would have thought.

Eton mess - no, no good, this discussion is getting very bad for us...

Can't you think of something delish and sugar-free?

Perhaps we need a PMR cookbook! 

Interesting if your pain possibly starts with sugar also. I took 2 paracetamol which I very rarely do which really helped the pain. Am now firmly back on  trying to kick carbs and sugar and get off pred!

DJ

Sugar, like coffee, can place stress on the adrenal glands.  Those glands will already have been suppressed by the higher dose steroids, and on the lower doses will be trying to kick back in again with their pre-steroid production.  Food for thought?!!!

D J I will be interested to see if you find a difference.  

I have been told that coffee can cause steroid induced diabetes, I don't know how true that is. I still drink coffee but not that much any more.

Sugar free jelly and squirty cream! But please tell me Eileen, what can we eat which is carb free? Have tried internet but full of low carb foods but not carb free!

Brilliant idea ptolemy. Can you write it quickly please?!

Complex carbs are fine, it is the simple carbs, the cookies, the sweeties, the Christmas cake!! 

There is one!!  I ordered the book on Amazon.  It is called THE POLYMYALGIA RHEUMATICA DIET.  I don't think I am supposed to advertise, so I will not mention the author.  Quite a good read and healthy to follow.  Not too many sweets....:-)

Sorry, I should not have mentioned the title of the cook book.

All meat, poultry, fish, cheese is carb-free. It isn't a good idea to go totally carb-free - not that it will in the long term hurt you but it does have a few side effects (remember all the criticism of the Atkins diet) and will be a bit boring, it also isn't necessary. Many people still believe it is dangerous - although there are communities who never eat carb and are perfectly healthy (Inuit and Mongols amongst them but they develop diabetes very quickly when they adopt a western diet).

As ptolemy says, it is a case of restricting the junk - the bread, cakes, biscuits (cookies), sweets, soda (soft drinks). I eat loads of vegetables, preferably grown above ground, root veg like potatoes, sweet potatoes and parsnips have considerable amounts of carbs in them so should be limited (rather than excluded), together with fresh green salad, tomatoes and so on. If you must eat bread then whole grain - and not finely ground is better, milling it removes the outside of the grain and releases the sugars whether the entire grain is used or not. And honey is sugar - whether it is healthier or not is immaterial, it is sugar! Some fruit is also high in sugar - others aren't. If you buy natural yoghurt and add berries you will have a fairly low carb dessert - compared to buying a sweetened, flavoured yoghurt which is loaded with sugar. Read the labels! There is some sugar in yoghurt, left from the milk, but the vast majority is added and that is what needs to be avoided. 

Why do strawberries need sugar on top? During the war cakes were made with about a third of the sugar that is used now - they were fine. Sugar was rationed in the UK for several years - and people were healthier then than at any time since. The amount of sugar in the diet has increased exponentially and in addition HFCS (high fructose corn syrup in the US and made of beet in the UK) is used in large quantities in bought baked goods. This is particularly bad because it makes cells resistant to insulin and eventually leads to pre-diabetes and even diabetes. It is used because it is cheap and also allows the baked goods to keep for months - did your mum bake a cake that kept that long?

I like a blog called Mediterranean Diet blog, by a doctor and with a section aimed at diabetics - lots of ideas there. And Paleo diet stuff points you in the right direction.

But don't panic about "carb-free" - it is restricting the unnecessary and unhealthy carbs that is important.

Thank you Eileen. I have already cut out shop bought cakes, biscuits etc. I eat also granary bread. I find potatoes harder to limit. I must try harder. Which breakfast cereals are best, bearing in mind I can't eat nuts? I like porridge, corn flakes and weetabix but unfortunately don't like them without sugar! As I previously reported, I was diagnosed two months ago with steroid induced diabetes and the doctor gave me three months to try to control it with diet (at my request). Unfortunately last week's blood tests showed no improvement. I really do not want to take metformin on top of everything else so am getting a bit panicky!

It will have been using the name of the website that the computer caught I think! 

The cutting back on carbs will help that - it is the carbs in the diet that cause the problems with your blood sugar. I take it your doctor didn't give you the equipment to check your blood sugar to know what foods made it spike? If you are still eating cakes, biscuits and bread of any sort , even homemade, you are eating carbs that are absorbed fast and you will have spikes of high blood sugar - you can only change that by knowing what does it and not then eating that. Cornflakes for example are the perfect carb to get a blood sugar spike! And sugar on top??? And granary bread is not much "healthier" than white bread - it is made of brown flour which hasn't had quite as much of the outside of the grain removed which is why it is brown instead of white. But it is still finely ground so the carb is released fast in the mouth and stomach. All that granary bread is is dark coloured bread with a few malt flakes added to make it taste a bit different. From what you say you are still eating a fair amount of carbohydrate - you have to change that to reduce the blood sugar levels to nearer normal if your truly want to manage without metformin. I know it sounds hard - it isn't so bad but you need some help to understand what to eat to improve the situation.

The blog I mentioned has many helpful suggestions and I think Steve Parker who writes it is diabetic himself and has a diabetic version of his diet. Google the blog and his name to get a link. 

One lady who had the same problem as you went to weight watchers and her blood sugar levels improved dramatically using their diet. She too had been eating cornflakes with skimmed milk for breakfast and wondering why her blood sugar spiked to over 20! The skimmed milk made it worse - because having some fat in the milk alongside what you are eating slows the rate at which you absorb the carbs. If you choose a diet club like that then remember to explain to them you are on pred - good ones know about the problems with pred and weight gain so won't set you an impossible target. A few ladies have lost weight while on pred using one or other of the diet clubs.