What happens now?

I was told about 10 days ago now that I have coeliac disease, I had positive bloods and had a endoscopy and biopsy. Called to consultants secretary 4 weeks later, who said the biopsy was positive. Also got a phone call from my gp after that confirming that it was positive. I haven't heard anything directly from the consultant. I was expecting a letter or an appointment or something.

Does anyone have any idea what happens next?

I am trying to go gluten free but don't really know enough about cross-contamination really.

It's quite scary not knowing what I'm doing or if I'm still harming my body!

Any advice would be great.

Thanks x

15 Replies

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  • Hi Megan,

    Don't be alarmed!

    This is good news. The fact you are doing these tests does, I guess, mean you have problems with your gut?

    So you're a coeliac. Welcome to a huge club. You are about to go on an adventure that, hopefully, will make your life a lot more enjoyable. It doesn't come free so you will need to take a lot more care in how you manage your diet, but it is not rocket science and we've all had to to do it. The strange thing is that many end up being thankful that they lead a more natural diet, thereby healthier and could end up living a whole longer than those leading 'normal' diets.

    If you have any concerns or questions, just post them. You have joined a very special bang of dieters! welcome!

    Peter

  • Hi Megan,

    Sorry to hear that your diagnosis has now been confirmed.

    I get really annoyed by consultants who think it's okay to give out a life changing diagnosis of Coeliac Disease by telephone, via their secretary - they wouldn't do that if you had something like cancer! Sadly you're not the first person I've heard who has had to find out this way; and it's so unfair and unprofessional in my opinion.

    However that said, I'm sure you'll do fine by taking it one step at a time.

    Advice to get you started:

    Obviously you must go 100% gluten-free now, so do read all food labels!! If there's even a suspicion of gluten being in the product (i.e. it says may contain gluten), I would stay away from it.

    On the issue of cross contamination: when I was diagnosed I was told to change my toaster, colander, sieves and wooden spoons (possibly well worn baking trays as well?). On top of that, I would suggest avoiding any breadmaker that has been used for making gluten bread and any non GF pasta makers (they are impossible to clean up!).

    I also cleaned out my kitchen cupboards completely, especially where my old wheatflour had been stored.

    Avoid all chip shops - unless they are having a gluten free day (those that do it will advertise which day of the week it normally is). However, many Coeliacs can (and do) eat McDonald's fries - me included.

    Eating Chinese takeaways is usually almost impossible - due to the use of soy sauce in nearly everything (it's usually all wheat based). But eating Indian might be possible in some establishments once you've got some more GF experience under your belt and have done your homework on that venue (avoid the naan-breads though!).

    Beware of restaurant staff who don't understand what gluten free is, and your absolute need for it. Best to always check in advance that they can cater for you.

    Get used to carrying food in your handbag, especially in the first six months. As a Coeliac, you really do have to learn to be more organised where food is concerned!

    Coeliac UK have a Member2Member mentoring program for newly diagnosed Coeliacs. If you're really struggling, it may be worth contacting them for support because they will try to put you in touch with someone who is in your part of the country and may have some useful local knowledge.

    Lastly, do find out what you are entitled to on prescription. In my area I'm entitled to have flour, pasta and bread through the NHS.

    (Oh and ps. - Stay away from beer in pubs! Definitely not GF! Cider is fine though. Also be careful of unbranded cola - it can have gluten in it. Pepsi and Coke are fine; and it's often best to have the bottles when ordering soft drinks, in case the hand dispenser has a shared nozzle with something that's dodgy and Non GF).

    Take care, we're all here if you need us. Don't suffer in silence...!

  • I am quite overwhelmed so far, not only at the confusion over it, but at the community I seem to have joined!

    I am on a couple of Facebook groups and forums and so far everyone has been so helpful and supportive! I'm hoping one day I'll have everything sorted so I'll be able to offer advice like you both have.

    I am trying to look on the bright side that both my fiance and I are eating much healthier and I am cooking many meals from scratch using fresh ingredients now, although not what I always want to do after a 12+ hour shift.

    Right, I must clean my cupboards and I hadn't thought of wooden spoons and baking trays!!! I was going to order a new pan for my bread maker just for gf bread, would that be ok?

    Sorry for the rant and so many questions!!!

    X

  • Hi Megan,

    Ask as many questions as you like! It's all part of the transition to being gluten-free - and a very normal thing to do as a newly diagnosed Coeliac.

    Btw, I forgot to check if you are based in the UK? Because the advice for McDonald's is specific to the UK only (their ingredients change, depending on what part of the world you're in).

    Baking trays – Just use your common sense. If it's something that's never seen any gluten, or you can clean properly, then it'll be fine.

    Breadmaker - Ordering a new tin might be enough, depending on following factors: What about the paddle? Have you always diligently washed the ingredients from out of the fixing hole? (i.e. is there any solidified gunk anywhere on it?); and has your non-gf bread ever risen over the tin into the main breadmaker? If so did you clean it up properly? Do you think that it's worth the risk of being ill to find out? Or is it better to have two breadmakers? (In the same way that a lot of families have 2 toasters - one of which is dedicated to GF bread). More space would be required to store a second breadmaker but there would possibly be less of a risk to you in the long term, if your other half also likes to have home-made bread.

    Many coeliac's choose to have a dedicated GF cupboard in the kitchen. It allows them to store items they exclusively need away from riskier items that other members of the household use. It often includes things like separate jars of jam etc. This is to avoid any risk of double knife dipping - i.e. other people putting ordinary breadcrumbs in your jams or butter. That is a definite no no!

    It's probably appropriate to mention here that the longer you are gluten-free, the more sensitive you will become to gluten exposures - you may start react more severely in future because the gluten antibodies floating around your body right now will decrease. However don't worry too much about this, because the less antibodies you have in your system, the better your guts will start to heal!

    I also understand when you say cooking from scratch is not something you feel like doing after coming home from work. I sometimes get around this by making a double batch on days when I have more time and then freezing it - that way I have home-made GF microwave meals.

    As a newly diagnosed Coeliac, I would suggest that you double check with your GP asap that you don't have any form of anaemia, or vitamin D deficiency that has been caused by your having Coeliac Disease. Unfortunately this is quite common. In my case, I had a combination of several of the above on diagnosis. Vitamin and mineral deficiencies will make you tired and less able to cope with activities of day-to-day living such as working and cooking. Don't worry too much about being a slightly pushy patient if you need to be.

    x

  • Well Put all good advice

  • Breadmaker spares aren't cheap. £65 for a Panasonic pan, and about £16 for a paddle. I'd suggest a new machine, especially as some of them now have a gluten-free bread setting, and presumably some recipes.

    I was diagnosed with CD last November and am about to buy a new one.

  • My advice is anything that comes in a packet - wrapped or tinned you must check the contents. Never ever assume its GF - unless your 100% certain you will find most processed food items has gluten. Good luck.

  • It is quite a learning curve, but some really good advice here. I was diagnosed 13 years ago and still have to be vigilant.. It does get easier and things are improving all the time.

    If you aren't sure question, question and question again.

    If you're like me, and the longer you are off gluten the more sensitive you become to it, the least little bit of gluten will make you feel rubbish. So do all your ground work now..

    Did you get referred to a dietician?

  • Hi Megan, The first thing is to be referred to a dietician. If the consultant doesn't referrer you your GP should. Also I joined the Coeliac society which were very helpful.

    Helpline 0870 4448804. coeliac.org.uk.

    Hope this is helpful

  • After many years of GF you still need to read ingredients because makers change recipe. Look for hidden Gluten sources. I used to eat Toffee Crisp. Now contains wheat.

    Be careful of commercial cider, as yellow colouring is caramel but where is sugar derived from. Often wheat. Hence the above warning about McDs.

    You might need to change your shopping habits. UK owned supermarkets often source their products from UK factories, whereas European owned supermarkets (ALDI, LIDL) use continental recipes. Why is this noteworthy? In Europe they do not use flour as a thickener. Nearly all flour in Europe is used for bread, pastry and cake.

    If you can, try suspect food and utensils to see what affect they have. Then include or exclude once tested.

    Snacks, have fruit and carrots to hand ready to nibble on rather than ice cream or chocolate, when hungry.

  • Glad to hear you are eating in a more healthy manner. It can take a while to get used to eating gluten free, but the health benefits are worth it. Be careful if trying ready made gluten free foods as they frequently contain additives that can upset a sensitive gut. i found that taking a good quality probiotic seems to have helped my gut health.

    My husband decided to join me in eating gluten free, which means I have no worries about cross contamination. He gets his 'gluten fix' when we are out.

    I have found the book "Living gluten free for Dummies" very helpful and there are a lot of recipe sites on the Internet. Eating out has also become much easier over the past few years.

    Good luck with it all!

  • Megan, as someone else has just said, you need to see a dietician. Your GP should have referred you as a matter of course. The NICE guidelines say all coeliacs should be seen by a dietician every year. When you are first diagnosed they may see you at the beginning and then in another six months. They usually do their own 'coeliac screen' which is a blood test which tells them what your nutritional status is. If your GP won't refer you, (and I can't see why not as he/she should have done this anyway) you could try to get an appointment direct from your local hospital. The dietician can tell you about the foods you can get on prescription, and will recommend which ones and how much of each to ask your GP to prescribe for you. You will then need to take these recommendations to your GP to get a proper prescription. As far as gluten free living goes, there are some other very good replies above. It's a lifestyle that takes a bit of getting used to, but hey, there are worst things in life. Best wishes.

    Kathleen

  • I would just say Please dont worry its Ok to be Coeliac, I've not had the time to read all the replies you got...So if I'm already telling you what you already know....Whoops......Phone Coeliac Uk and tell them you are now Diagnosed,and they will send you out a New Members pack....not sure if your introduction should come from a Dietician or your Doctor these days...but dont hesitate give them a call and they will guide you in right direction..and as the rest of folks are saying Ask Questions on here as much as you want...and never accept in a restaurant or anywhere...when the response is " I thing it should be ok for you" i usually reply politely sorry but I need you to 100% sure that it is Gluten Free and when ordering, I always ask that the Chef be informed that My meal needs to be GF totally Just in case he may cross contaminate a utensil or a Grill pan etc .... Good Luck is not the correct words I wanted to use But enjoy being Gluten Free from now on....and get your family to learn to eat GF as well...I don't expect them to eat your pasta or your biscuits...as an example....but when you cook Chilli or curry or Roast dinner then that can be totally GF for you and the rest of your family can sit down and enjoy it with you..they need educating as well on GF just as outsiders do, as suggested always keep a snack in your bag, I keep a tin of beans in the Car as a little standby in case I get totally stuck and I am starving...

  • My piece of advice is that you have to take control. Other people will not understand the seriousness of coeliac disease and will say things like "there's only a little bit of flour in it" or "you'll grow out of it". Resist the urge to thump them (it's understandable but doesn't help). Set out your stall - and if you're going out with friends, you decide whether the place is OK, not them. (I'm glad to say my friends suggested that approach - and it does work.)

    Generally, eat healthier. A lot of gluten-free food is pretty rubbish (but some of it is nice) so go for healthier options (more filling and less bread etc) - that way you'll be giving yourself an advantage.

    I've sort of given up on dietitians - they've not been that well informed (well, compared with me). They are dealing with a whole range of issues so are not specialists in coeliac disease but if you happen on a good one, they are probably worth their weight in gold.

    Cooking for yourself is best. I'd recommend starting simple and then extend your repertoire. There are lots of easy things: baked spuds with fillings, omelette / fritatta / tortilla etc.

    Work at it and it becomes second nature. I now read every label every time in the supermarket -just in case anything has changed so I allow more time for shopping. Planning becomes all-important.

    Best of luck.

  • Thank you all so much for your replies, I'm beginning to feel privelidged to be a part of this club now. You all have experience and it's nice that you are willing to share with me. I hate to think what people went through before Internet/forums and of course left options to eat.

    I will be phoning the consultant tomorrow to ask if I will be referred to a dietician and if I will be having more bloods to see if I'm lacking in nutrients. He also mentioned that he would refer me for a dexa scan so will chase that too.

    I have been cooking much more from scratch and eating more fruit and veg which is never a bad thing.

    I get frustrated a lot, because i work in the medical profession (not a nurse or doctor) I am quite used to knowing what is going on with my body. I'm ised to going to the dr and discussing (telling) them what I need. So it's quite scary for me not knowing a lot about it.

    Thank you so much for all of your replies, I do really appreciate it x

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