today is not a good day

Bones, joints and muscles
1

sad Hi everyone...Its been a while since I posted..I've had a few ups and downs but have managed to get down to 2 mgs pred and stay here for a couple of months.My ESR has been going up and down but only causing a bit of discomfort..I can put up with that.

I had my appointment with my rheumy a couple of weeks ago, he seems to be pleased enough with my progress and I thought everything was hunky dorey. He sent me for blood tests (to check that my vitamin D level was ok) and he is arranging for me to have a repeat dexa scan to see if the Forsteo injections actually did any good.

I got a letter in the post today from my rheumy telling me that my Vitamin D levels were satisfactory but I have antibodies for coeliac disease!! I'm so upset.. I cant believe that I was somebody who was relatively healthy three years ago, I've become a person whos bones are brittle, whos muscles ache, whos life has now been turned upside down yet again. I'm 55 and I feel like I'm 80!! I've had a bit of a cry and now I've had a bit of a moan.. sorry guys that you've been the ones I've dumped it on. Maybe it will all look better in the morning.

Bye for now, Pat

:cry:

2

Hello Pat

I often think about you when we don't hear from you for a long time but then I remember the saying \"no news is good news\", so I'm really sorry to read your post today.

Coeliac disease is an auto immune disease and it is apparently fairly common to be diagnosed with another auto immune disease when you are already suffering from another - I discovered this following a severe throat infection last Christmas with severe swollen glands that refused to return to normal. After several scans, I was eventually diagnosed with Sjogren's syndrome or Mickulitz's disease - both auto immune (the jury is out on which one!).

I'm assuming that you will have had had your thyroid checked - a fault with that can lead, I believe, to coeliac disease (and even other auto immune disorders).

If you do have confirmation of coeliac disease, I believe the only treatment to control it is to follow a gluten-free diet There are people posting over on the PMRGCA dedicated forum (you'll find the link on the home page to this site) who follow gluten-free diets so they will be able to tell you more in that direction.

Great news about you being down to 2mg, Pat - at least you have a positive to hang on to.

Hugs :hug:

MrsO(Shirley)

3

Hi nannypat! Good to hear from you again. I certainly don't feel \"dumped on\" as you put it and I hope by the time you've read this you'll be feeling a lot happier!

Well - I'm sorry to hear you have had this added to your plate BUT it's an ill wind that does noone any good and this may just be a positive.

Coeliac disease is also an autoimmune disease - so not a lot of surprise really that they've found it - and there are some people who have gained a lot of benefit in other autoimmune diseases by going onto a gluten-free diet. I know of people who have rheumatoid arthritis and PMR who say their symptoms are improved by eating that sort of diet - I'm not saying it's a cure but it seems to help.

I get a horrible itchy rash (it can be one form of coelliac disease) when I eat products made with modern commercialised wheat flour. I don't get it when I eat spelt or kamut and have always been able to eat rye and barley so I just omit wheat products and use the other grains for what bread I do eat (you shouldn't as they all have gluten). I don't have the coeliac antibodies and when I asked about having a endoscopy was told by the local specialist that he wouldn't bother if I can control my symptoms just by omitting wheat. However - I do know I feel better when I cut out a lot of carbs.

It is possible that your osteoporosis has been contributed to by the coeliac problem - because of the damage it does to the gut it interferes with the absorption of calcium and iron so you could be anaemic from that too. I used to go to a support group in Durham and met quite a few people who were first diagnosed in middle age. We had great fun at our meetings and always soemthing to eat - most of them said they had never had a weight problem until they were diagnosed and were suddenly put onto a diet that didn't upset their stomachs!

It honestly isn't a case that your life will be turned upside down - you won't get any more tablets at least! Coeliac disease is controlled by diet and diet alone. It does mean reading labels carefully but there have been new regulations introduced very recently which makes the labelling much clearer and many manufacturers put the gluten-free ikon very clearly on their packs - it is a head of grain that is crossed out. If you are coeliac you get gluten-free bread and other things including pasta on prescription - I don't and have to buy everything myself to avoid wheat, but it is very easy to find the products in all the main supermarkets. Sainsburys, Tesc and Waitrose have excellent selections of cake and biscuits if that is your sort of food and a cousin bought me gluten-free chocolate covered bourbons recently - they were the wrong shape (round :roll: ) but were better than \"real\" ones. Everyone tried them and said the same! Other than that - it does mean you tend to eat a healthier diet I think, I certainly do!

My friend's husband in Germany was diagnosed at our age about 3 years ago and he makes his own bread on a regular basis - some breadmakers have a special programme for gluten-free bread and are well worth investing in they feel. His wife makes everything gluten-free so I love going to stay - I don't have to worry any more! She has learnt how to make gluten-free pastry and cakes. It is a lot more difficult and expensive in Germany than it is in the UK by the way. Nothing comes on prescription there.

There are vast numbers of foods that are naturally gluten-free - and it is a case of thinking \"I can eat this\" rather than being negative and saying \"that's not allowed...\". I have a collection of cake recipes that are made with naturally gluten-free ingredients and somehow that makes me feel \"not different\". It just means a change of habit for ordinary cooking - you use cornflour or potato flour to thicken things like gravy or casseroles. Dove's Farm have a superb gluten-free flour and one of my friends uses it rather than ordinary flo

4

hello ladies.. thank you both so much for your encouragement. I must say that today is a better day! smile When I got up this morning I decided that I am not going to beaten by this. I went online and found the Coeliac society of Ireland. I have an appointment in the morning with my doctor, to set the ball rolling (diet wise)

I took your advice, Eileen and went to my local Tesco this evening. I had a good look at all the products that are gluten free. I thought that there really isnt very much choice at all, so I looked at the \"normal\" aisles..there is even less there. Looks like I'll be baking my own bread etc from now on! I even got my husband going around the shop looking at the labels..He kindly informed me that I cant have Dairy Milk because there is wheat in that particular bar. I think I also saw a gleam in his eye when he told me that from now ALL the jaffa cakes are his!!!

I must see if I can find a recipe to make my own ones!!

Bye for now,Pat :D

5

Jaffa cakes are one of the things you should be able to get! They're quite good - well, I think so! No, there isn't a lot in the ordinary cake/biscuit aisles - wheat appears all over the place!

Tesco's I think tends to be a bit variable for the range - bigger ones tend to have a lot more and maybe it's a regional thing. They used to be a lot better. Where do you live - is there a Waitrose anywhere near? They seem to have a good range. Obviously it isn't quite what you are used to with ordinary stuff but between all the supermarkets you get quite a few things. There are several small companies that make baked things and sell by mail order. You will get a book listing what is OK to eat and that will help a lot. The dieticians are really helpful as well.

Just realised you mentioned Ireland - it should be les of a problem there than in England - coeliac disease is very common in Ireland as it gets worse the further west you go in Europe. How strange if Tesco's isn't good where you are! It is also very common in the Alpen region and Italy as a whole - I presume because they didn't have wheat for a very long time (it doesn't grow at altitude) and their diet didn't have much in, then all of a sudden they were exposed to it in large quantities. Same in Ireland - diet based on potatoes and then, wallop - wheat arrived!

Pauline on here is from Dublin and is allergic to wheat - she may have some tips for you as to where to find things.

all the best for the GP visit and glad you're feeling more positive,

Eileen

6

Hi Pat

Sorry to hear of your problems I look at Gluten free foods because friends have that problem

It will all depend on the size of the supermarket of course I have noticed quite a lot in Morrisons but I dont know what supermarkets you have there It may be that you have to travel and stock up a bit You probably have some sort of support group there that will help you find the best products Its a bit like PMR until you have a problem you dont know this site exists !

Its obviously better to try supermarkets as the health food shops are expensive normally

Good luck

Rosemary

7

Hi Pat & all,

I am really sorry that you have had another problem added to your woes :cry: , but having been there and got the T-shirt, it is not all gloom...it just takes a bit of adapting :wink:

I first started getting problems with my digestion about 3 years before I developed PMR, so 5 years ago now when I was 48. I had very severe diarrhoea on an almost daily basis no matter what I ate and had lost weight and had no energy. My tests fo coeliac were all negative, but an alternative nutritionist that I went to diagnosed wheat intolerance, and when I eliminated it from my diet I improved almost immediately.

I get a bread in superquinn from a company called Dietary specials, which is quite nice for toast, sanwiches etc. They also have lots of wheat free pastas which I use regularly...I make lasagne for the family with it and no-one notices the difference :roll:

Like Eileen, I use cornflour for thickening sauces, and again, no-one ever notices !!

Yes, there is a bit more thought and work involved in having a wheat free diet....but the benefits are well worth it. I have been spending a fair bit of time in Spain recently, and the Spanish supermarkets (as opposed to the ones geared at ex-pats) do not stock packet sauces, jars tins etc, because they make everything from scratch and do not use all the \"convenience\" foods we have become so used to at home.

When eating out, I ask for any sauce to be served on \"the side\", but most restaurants now offer a gluten free option. Be careful of roast meats and potatoes at carvaries....I learnt the hard way that they are often tossed in seasoned flour to brown them sad

Your shopping will take longer initially as it takes time to read all the labels, and there is wheat in many things where you would not automatically expect it to be....but most health food shops will steer you in the right direction, and the Coeliac society will send you a list of recommended foods.

I hope that some of this helps and that you start to feel better soon.

Love,

Pauline.

8

hello all.. thanks for your great advice..unfortunately as Pauline will know we dont have Waitrose or Morrisons here in Ireland(unfortunately) I'd have to \"cross the water\" to get to some of them. However I've just seen my doctors nurse who is arranging for me to see a dietitian asap.

I have been thanking my lucky stars that I have a medical card because I can actually get a lot of the foods on prescription. I spent about an hour this morning in the back of my chemists being shown what foods I can or cannot eat. The staff were all really nice and explained everything.I came home with 2 big bags of stuff that should last for a while. I must keep an eye out for Jaffa cakes..They are my favourites... :lol:

I've never really liked pasta but I know I'm going to have to learn to like it..I got some pasta twirls this morning and I'm going to have them for my dinner tonight.The rolls are not too bad.. I had one with homemade soup at lunchtime.. Its just a matter of getting used to gluten free. :?

thanks again ladies,

talk soon and give you an update

Love Pat

:D

9

Great you have found such nice helpful people already!

Hang on though - why do you HAVE to learn to like pasta? Pasta is just one form of carb to bulk out a meal. Potatoes don't have gluten in them unless there is a coating added to them - so most of McCains prepared chips/roasties and so on are out but any chips that are just made with oil are fine. If you look online or go to a caravan dealer with an accessories shop you should be able to get a tiny deep-fryer for a single portion if you like proper chips or other deep-fried things (in moderation of course :wink: ) so you know your fryer is safe for you. You can make batter with gluten-free flour or even cornflour (just make sure your cornflour is gluten-free) though it is a bit trickier to handle. But potatoes in all shapes and forms made at home are going to be fine - you know what has gone into them.

Rice is also perfectly OK - I did hear of a nurse who told a patient they couldn't have rice as it was \"glutinous\" :roll: That means it's sticky, not that it has gluten in it :lol: Beware ready-made risotto mixes though - they can have anything in them as I found to my cost on holiday in Australia.

The fact pasta is so easily available is due to the vast quantities made here in Italy and exported to the rest of Europe. One of the biggest gluten-free manufacturers is about 50 miles from me as the crow flies - but I can't get Jaffa cakes here :cry: Though that is maybe as well :oops: There is also a big company right down south near Bari and they have the most amazing selection because there they eat pasta twice a day! And almost all children will eat spag bol! Personally I love pasta - my husband is less enthusiastic so I don't have it as often as I would like.

If you are thinking of going away for a holiday I can recommend Italy. They are very aware of coeliac disease and it is emphasised in their cook training. Here in the village they will make a gluten-free pizza pretty well on demand (it doesn't have to rise so is quick) provided they aren't terribly busy though they do prefer you ask at lunchtime for the evening. I find if I ask him to make it without salt in the mix it is better - the mix has a flavour which seems salty anyway. Many restaurants have gluten-free pasta on the shelf - the sauces are almost all gluten-free anyway. But the main thing is they know what is in their food as they make it fresh themselves and are happy to adapt for you. Often they are even willing to make a risotto specially for you - so many places only do it for 2 people but when you play the coeliac card they take pity on you :wink: :lol:

I also discovered last week that IBIS hotels (and I assume the posher bits of their group, ACOR) have gluten-free bread available for breakfasts and the chef was pretty sure that it applied to all - ask the night before. I always carry a plain yoghurt (just in case) and a cereal I can eat in a small tub - milk and eggs and things are always available.

I know what you mean about getting used to gluten-free bread. In the UK Juvela have bread that is very good - but it is made with wheat starch which has been washed to remove the gluten. It is approved for gluten-free diets in the UK - I don't know about elsewhere. I can't use it because it is the wheat I have a problem with but I have tried it and found it really good. I say \"is\" - the regulations may have changed. The bread is much better toasted, I think. Seems to lighten it up somehow. I had some excellent bread recently but I'm afraid I can't remember the make :oops: The breads have improved out of all recognition in the last 2 or 3 years it must be said.

Many doctors allow oats in the diet - they have gluten in them but it is a different structure and apparently is OK for many patients. That improves the variety of things to eat with soup and cheese so ask your doctor if he is one who approves. If not, Nairns also do a range of gluten-free stuff now

10

Hello eileen.. sorry I didnt reply to you straight away, but I've been away for a few days to see my son and grandchildren in Killarney. I thought I would need to get used to eating pastas etc but as you pointed out I can use potatoes(I'm more of a shepherds pie girl anyway!! ) :boing:

I was a bit worried that I wouldnt be able to manage while away,I even brought some rolls with me in case the hotel wasnt able to supply gluten free bread. There was no problem at all. I was pleasantly suprised. I suppose that Killarney being a tourist town the restaurants have to cater for all tastes. I am grateful for that!! I must say that I am feeling much better , even after only a fortnight . The sick feeling, diarhoea, and cramps are not as bad as they were, thank the lord!!

I have been experimenting with making my own bread..so far so good..havnt poisoned anyone yet!!! Will keep you posted!!!

Pat

:lol:

11

Pat - don't apologise, I'm glad you had a nice reason though. Did you have fun?

It's so nice to \"hear\" you feeling so much happier and positive! I think as you explore a bit and ask around you will find things not too bad in Ireland - as I said coeliac disease is very common there. I also made it a rule to ask and explain the problem wherever I was - and the changes in supermarkets (even Sainsburys and M&S) that have occured since then have been amazing. I'm not saying it was me but if all of us who need this sort of stuff to be available talk about it, the message will get home eventually. I've had cooks/chefs thank me for the explanations I've given them. It is mentioned in their courses at college and they learn how to deal with it - but it is just part of their course. Once they meet a client it becomes more real and when you explain what it can do to you if you get the wrong food they remember it! It isn't rocket science though you should have heard the fuss my SIL made - and she is supposedly a hobby cook. Replacing wheat flour with cornflour and thinking up a dessert without pastry isn't that complicated - well I didn't think so!

Glad to hear too that you are noticing the difference. I can't remember how long it usually takes for the gut to heal - certainly months if not longer and of course it depends on how badly it was damaged before diagnosis - but it will continue to improve for some time.

Enjoy your shepherd's pie!

Eileen