Hello from a Caeliac Disease Sufferer

ninakang
ninakang Member Posts: 1,367
edited 30. Mar 2010, 12:47 in Community Chit-chat archive
:-( I know I should be posting this on the Living Forum but it's not actually advice I'm after, just a good old fashioned MOAN.

I was referred to the gastroenterologist by my rheumy consultant because he said it wasn't OK to have had a low iron count for years and years. He was quite cross no one had picked up on it before. I went for some blood tests and then saw the consultant on Wednesday morning.

He sat me down and said "The good news is that we won't have to do a biopsy on you. The bad news is that we don't have to do a biopsy because there is no doubt you have caeliac disease"!! He showed me one of my blood test results (ESR I think) which in a healthy person would show a count of between 3 and 5. Mine is 235.

I suppose the good thing is that I can manage this through diet and there are far far worse things I could be suffering from which aren't treatable. But I just want to WHINGE - WHY ME?!

I really don't want to spend the rest of my life watching what I eat. Food has always been a very social occassion in our family and now I'll be one of those people who has to ask questions all the time when going out to eat or when I go food shopping will have to look at the ingredients list of everything (something I've never actually done before). I've never been a particularly fussy eater and love to try new things. Also, now when I attend meetings at work, I'll have to request a gluten free meal rather than have something from the buffet.

Sorry to go on and bore you all, but this has got me really down this week. I'm going to a retirement party tonight and there will be a buffet... which I probably can't eat anything from!

Nina X

PS - I have seen the Caeliac UK website and it is brilliant, just in case anyone was going to suggest it.

Comments

  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    Sorry to read that Nina. I have very little knowledge about it and cant even spell it but will take a look at the website so I can at least know what I am talking about!

    Take care Nina

    Elizabeth
  • barbara12
    barbara12 Member Posts: 21,258
    edited 30. Nov -1, 00:00
    Hi Nina
    I am sorry you are having to going through this ,I don't know anything about Caeliac, is there nothing they can do apart from diet.
    Love
    Barbara xx
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    Hi Nina,
    I had a quick look. My daughter is on a gluten free diet so I will ask her for ideas.She has just started early March. She was being tested for R.A, then thyroid problems as she suffered extreme tiredness so much so she had to cut down her work.She has been much better energy wise since starting the diet.

    Also noticed they have a forum almost the same as arthritis care...same layout....celiacdiseaseforum.....
    Take care Elizabeth
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    Hi Nina.
    Sorry it was this forum. There are a few mentions of celiacs disease here on this forum. I typed in celiacs diseasearthritiscareforum and a google searched and a few posts came up! You might like to take a look.......

    Elizabeth
  • ninakang
    ninakang Member Posts: 1,367
    edited 30. Nov -1, 00:00
    Thanks everyone. I have been looking at the coeliac website (I've been spelling it wrong!) and there is an allergy and gluten free show in London in May so I'm going to ask Occy Health at work if they'll pay for my travel there and back as it's a bit far from Derby. I've got myself a free ticket, so hopefully they'll say yes. It might help me put things in perspective although I'm not relishing going on my own?

    I've downloaded some guides to gluten-free food from the website, it's really a very good website, just like this one. I'm really impressed with the information on it. It's given me lots of stuff to think about and I think I'll manage till the appointment for the coeliac clinic comes through.

    Can I just put this on as well, for people who think it's just an allergy? I've copied it from coeliac.org.uk:

    "Coeliac disease is not a food allergy or an intolerance, it is an autoimmunedisease. In coeliac disease, eating gluten causes the lining of the small intestine to become damaged. Other parts of the body may be affected."

    I'm having trouble trying to convince people that it's not just a bit of bloating after having some bread - I haven't got any bloating at all!

    Nx
  • frogmorton
    frogmorton Member Posts: 27,485
    edited 30. Nov -1, 00:00
    Hi Nina

    ya boo :x :x

    Not fair - poor you :x :x

    As you say though - it could be far worse.

    Knowing you though you'll soon have your head round it all and life will be better if you do stick to your diet. a friend was telling me (yesterday) that Sain***ry have a good range of food but it's not cheap.

    Good luck and sympathy

    Love

    Toni xx
  • ninakang
    ninakang Member Posts: 1,367
    edited 30. Nov -1, 00:00
    Sorry Barbara, I missed your question - there is nothing else to do about it except have a completely gluten-free diet. Luckily, there are now lots and lots of gluten-free products in the shops, I just have to be very careful.

    Toni,

    Thanks for your message - you're right, as always! I've also spotted that I can get gluten-free food staples (flour, bread etc) on prescription from my GP so I've made an appointment for next week - might as well!

    The main problem I'll have, i think, is convincing people that I don't have an intolerance or an allergy that will go away soon. Everyone becomes a doctor and I've already had lots of comments of "Oh I went wheat free for a few weeks and then got magically better" from a couple of friends and colleagues.

    Very similar to when I was diagnosed with arthur last year, actually! I didn't actually know what being a coeliac meant myself until Wednesday and I'm already a bit fed up of people trying to give "helpful advice". I know they mean well, but, really, when I say I have to eat completely gluten-free diet because the consultant said so, is the right response "Oh but a slice of bread every day won't hurt, will it?"

    Just like when I tell people I'm walking slow because my feet hurt because of arthur and someone responds with "Oh I'm sure if you exercised more all that would go away"!!!

    Am ranting again - sorry! I do appreciate everyone's support, though, it means a lot.

    Nx
  • frogmorton
    frogmorton Member Posts: 27,485
    edited 30. Nov -1, 00:00
    Yep Nina...

    that's what they think eh???

    just take some glucozamine - my Aunt (or someone) did and they are fine now.....

    That tongue of yours will be red raw from biting it before long :wink:

    I have every faith in you :) (oh and apparently they do a nice shortbread - which IS good news :D )

    Toni xx
  • joanlawson
    joanlawson Member Posts: 8,681
    edited 30. Nov -1, 00:00
    Hi Nina

    You have every reason to rant, so rant away :!: It must have come as shock to you to discover that you have coeliac disease on top of your RA, and I'm so sorry that you are having to cope with this. However, it is a good thing that it was diagnosed in time for you to deal with it.

    You are doing the right thing by getting all the help and advice that you can, and you will probably find that you become quite an expert on gluten-free diets in time.

    Take no notice of silly comments from some people. They just show their ignorance.

    With best wishes to you and the family

    Joan
  • ninakang
    ninakang Member Posts: 1,367
    edited 30. Nov -1, 00:00
    Thank you Toni and Joan. I think my reputation for being a foodie is quite widespread. The station manager here just rang me and here is roughly what was said:

    - Nina! I'm taking a chippie order
    - I don't want any myself, thanks, will see if anyone else wants some and call you back
    - What?
    - I don't want any, thanks
    - Why not?
    - I can't have chips from the chippie anymore, can I?
    - Potatoes are alright, they don't have gluten or whatever in
    - Yes, but they are cooked in the same fat that fish in breadcrumbs is cooked in so I can't have them
    - But you were alright after last week's chips, you didn't have a reaction to them
    - I don't need to have a reaction, I've never had a reaction... Look, I'll call you back.

    And this is just today!

    Nx
  • ninakang
    ninakang Member Posts: 1,367
    edited 30. Nov -1, 00:00
    Hey! I never thought of that, Lyn - HOW funny. Yes, will try that and let you know how I get on.

    Just off now to get my eyebrows waxed and then to Occy Health for my appointment. I've got parent-teacher meetings tonight then am off to this retirement party.

    Have a good weekend everyone.

    Nina XXXXX
  • annie_mial
    annie_mial Member Posts: 5,614
    edited 30. Nov -1, 00:00
    Nina, I had to go gluten-free for over a year while they tried to sort me out.........luckily at the end of it I was OK, I just have a wheat intolerance and a hiatus hernia (which took them a long time to diagnose).

    S****bury's do have a very good range, but wherever you look and whatever you look at do check the calorie count........a lot of the stuff is sky high in sugar and carbs.

    I've found that I now eat rye bread anyway and prefer it to the usual bread......but I can't get hubby to try it!

    Annie
  • babette
    babette Member Posts: 128
    edited 30. Nov -1, 00:00
    The main problem I'll have, i think, is convincing people that I don't have an intolerance or an allergy that will go away soon. Everyone becomes a doctor and I've already had lots of comments of "Oh I went wheat free for a few weeks and then got magically better" from a couple of friends and colleagues.

    Very similar to when I was diagnosed with arthur last year, actually! I didn't actually know what being a coeliac meant myself until Wednesday and I'm already a bit fed up of people trying to give "helpful advice". I know they mean well, but, really, when I say I have to eat completely gluten-free diet because the consultant said so, is the right response "Oh but a slice of bread every day won't hurt, will it?"


    Hi Nina
    My fellow teacher in P1 has coeliac disease and she found it very trying when diagnosed at first. She has her own toaster in the staffroom to use as she can't cross contaminate her meals with gluten . She tells me that since starting the gluten free diet; if she has anything by accident which has gluten in it then the repercussions are huge and she can be in agony for days. She has been known to travel for an 80 mile round trip just to get gluten free fish and chips. Eating out can be a nightmare as alot of places don't properly understand or cater for coeliacs.If we have goodies in the staffroom then we always try to get something gluten free for her. And yes you are correct in saying it is an auto immune disease and that you can't ever eat gluten again. We have learned an enormous amount about this very serious condition through our friend. I hope you manage to find alternative foods which you like and that you are able to cope with this on top of your Arthur.

    Best of luck! B x
  • annebr
    annebr Member Posts: 730
    edited 30. Nov -1, 00:00
    Nina,

    This is one of the things my Doc has mentioned to me. I am B12 deficient and have gastric problems, they are still looking at Chron's.

    These things all seem to be linked arthritis, b12 deficieny, pernicious anemia, coeliac disease, arthritis. Sometimes I wish that you could see one person who would look at all your symptoms rather than go from secialist to specialist. Sorry that was a rant.

    Please keep us posted on how you get on with this. And Good Luck with the new diet.

    Anne

    p.s you are better than me I couldn't have resisted the chippie chips
  • ninakang
    ninakang Member Posts: 1,367
    edited 30. Nov -1, 00:00
    It's great posting stuff on here, I always know I will get a reply from the kind friends I've made :-)

    Well, I went to our local supermarket which starts with A and ends with A. Their gluten-free range wasn't up to much and I cannot BELIEVE I just paid £2.16 for 10 small slices of gluten-free bread! But I had a look at the labels of everything and my favourite cornflakes are still OK to eat, certain chocolates (though sadly not Maltesers) and crisps are fine! I find it very helpful that the major brands list allergies separately on their labels, though not all do this so I have to read everything. I refuse to pay over £2 for two slices of garlic bread but I may have to cave into that because I love garlic bread.

    My youngest (who is 6) was very helpful in the shop, though I could tell she was bored (bless her) because it took much longer than usual. She now knows how to spell gluten :-) My girls have had lots of questions about it which I've tried to answer honestly. We've also talked about how my "special" food is very expensive so I don't want them picking at it!

    The main thing I think I'll miss (apart from Maltesers) is chapattis. I haven't been able to locate any gluten-free chapatti flour on the internet but I may look round our area where there are a lot of Asian food shops. I don't eat a lot of bread but have one chapatti with a bowl of curry most days. This lunchtime I had some lamb mince curry with a couple of gluten-free crisp breads and it wasn't all that bad, but I had to sit and watch my girls east the chapattis I'd eaten (and had a couple left over because I made some for myself, completely forgetting I couldn't eat them!). I suppose this is all going to be a steep learning curve.

    Now I've been shopping and have planned a couple of meals, it's more in perspective... I think I'll be OK.

    Nx
  • ninakang
    ninakang Member Posts: 1,367
    edited 30. Nov -1, 00:00
    I have now managed two completely gluten-free days! Yesterday I had fruit for breakfast, crispbreads and curried mince lamb for lunch and vegetable salad for tea. A Twister and bowl of cornflakes for snacks. Today, I had a fruit smoothie for breakfast, dinner at the temple (no chapattis, just the curry) and for tea I made myself a thai green prawn curry using gluten-free sauce (wasn't all that nice, won't be buying the sauce again).

    More things I can't have - the offering they give you at the temple after prayers (a sort of sweet dough) has flour in it so I can't eat it anymore! They don't serve rice at the temple, only chapattis, curries etc. Very harsh, I think, not sure what kind of response I'd get from the committee if I ask for gluten-free but it's worth a try?

    I did it again last night, cooked enough dinner for all of us, including me, before remembering I couldn't eat it - I did the same at lunchtime! I've also told my family now, my parents were surprisingly sympathietc and supportive - I'd half thought that my dad would say "Pah! These doctors, what do they know?" But I didn't get any diagnoses from them along the lines of "But one chapatti a day won't do you any harm". My brother thinks it's all hilarious and enjoyed taunting me with the stuff I can't eat anymore (I don't know why I was expecting sympathy from the same person who used to try to make me cry at least once a day). My hubby is already planning what we can all eat together as a family during this week so I don't feel left out. I think we're all learning togeher, which is the best thing.

    My mum and dad also told me to bring them some gluten-free snacks from their local supermarket. They're illiterate and so won't be able to see them for themselves. They said as soon as they know what the packaging looks like, they can always buy replacements for me after that. And mum gave my 40 year old brother a clip round the ear for laughing at me :-)

    Nx
  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
    HI Nina,

    well I am sorry that you have this to cope with but so glad that you are sounding so positive about dealing with it all.

    I have a friend who is coeliac, and it has been a real education for me learning just how widespread gluten is in things. I had no idea so many 'normal' things had gluten in.

    I would say that you are entitled to stuff on prescription and DO use this, as it is soooooooo expensive otherwise!

    My friend finds that there are often several different types of one thing (ie pizza bases / bread rolls etc) on prescription and that sometimes you need to try the different ones until you find the one that suits you.

    I have found that the BBC food website lets you search for different recipes and there are lots of gluten free ones on there.

    Also you could try doing a web search for gluten free + chappatis and see if there are any recipes that come up - I know that the people who I get my veg box from often substitute rice flour, polenta (cornmeal) and suchlike for people who cannot eat gluten.

    If I find any recipes on their site I think might be useful for you I'll PM you a link.

    best of luck!
    wonky xxx

    PS - forgot to mention that our dog is on a GF diet :lol::lol::lol: so I know how tedious reading ingredients lits is :wink:
  • ninakang
    ninakang Member Posts: 1,367
    edited 30. Nov -1, 00:00
    Hi Wonky

    Thanks for your reply - I have looked at the alternatives to chapatti flour and I'm sure I've tried most of them and they aren't the same. Real chapattis are light and fluffy and inflate with air on the pan when cooking. My mum has already suggested many other alternatives, like the websites, but I may have to test them by trial and error.

    A dog on a gluten-free diet? Now that sounds like a real pain!

    Argh! A lady on my team has just brought back some fudge flavoured biscuits from when she went to Devon last week and I can't have any! She was very sorry, but it's hardly her fault, she didn't know. There's already been plenty of jokes about how they can all have my share and will probably get to eat a lot more now then before I became a gluten-free zone.

    I've told them that I hope they all get fat.

    Nx
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Nina,

    Oh Flower its always horrible to have yet another thing heaped on you. A (((( )))) and its good you are being so positive about it all.

    I don't know too much about celiac except they thought i might have it back along but then it was said to be crohn's. I think the abscess gave it away cus its all kinda simular!

    Food is a war zone eh? You will get to know what is tolerated and what isn't I think over time and sometimes I will pay the price for something nice :roll: I don't know if its simular but for me its fiber, cellous veg, mushrooms, tomatoes, potatoes skins and well as a veggie its kinda restrictive :roll:

    You take care and well I do know how hard it is to be told here's another thing. I sky rant why me and its not fair on a daily thing now a days so would you like to come with me for a quick sky rant sometime :wink: Luv and another ((( ))) Cris x

    Hi Anne,

    Good luck for you flower and I hope thy sort you out doon ((( ))) xx
  • ninakang
    ninakang Member Posts: 1,367
    edited 30. Nov -1, 00:00
    Just been to a recuitment training day for governors in which everyone else had a delicious looking free lunch which involved all sorts of sandwiches, samosas, bhajis, mini pizzas, cakes, biscuits etc... and I had a jacket potato with salad.

    Got fed up with people asking if I was on a diet because I was eating differently to everyone else. I think I should make myself a badge saying "I have coeliac disease and yes, ONE PIECE OF BREAD WILL HURT ME!" or maybe even "Don't even think about asking me anything".

    But I got back to my desk to find everyone gone but a lady on my team had left me three Cadbury's Creme Eggs (which I can eat) along with a post-it note saying "Happy Easter x". Cheered me up instantly :-)

    Nx

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