Just what should I ask for or say to my doctor ??

Well it goes like this.... I was diagnosed with coeliac D when I was about 6 (38 years ago) I went on a GF diet which was enforced by my Mother (although I did have the occasional naughty sweet without her knowledge). When I moved in with my now husband at the age of 22 I found making 2 seperate dinners were not affordable and hard work! so I chose to eat the same as him (i was 22 remember).. anyhow FIFETEEN YEARS of eating a normal diet without any adverse reactions, I seriously thought I must have grown out of it, Wrong!! I then started haveing lots of bone pain.. I looked into symptoms of being a coeliac and this was on the very long list so I went back to my doctors and asked him am I still a coeliac ??? I had a biopsy which confirmed that I was. I Cried!!! I was gutted!!! I reminised about the rubbish food and the Party's as a child ; ( not all that again please ........ Oops slightly gone off topic about my question.... The short of it is I did go back onto a GF diet but not strictly.. I found it too hard. The thing is I dont suffer like I did as a child, infact I barely notice any difference. So why cant i just carry on not worrying too much about what a restaurant has made their sauce with ?? as long as I dont eat real bread cakes or biscuits can I not just carry on being a BIT careful ???

Im going back to my docs on wednesday and im thinking about asking to see a dietician, someone who can tell me more about this and why i dont see the damage if any it is causeing.. and how I should deal with it. Also I have read that lots of you take vitiamins.. im wondering if i need to ?? I do take calcium but thats it. ... Jeese I have so much more to write but I think for now thats enough... any helpful comments greatfully received

19 Replies

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  • Hi Tracey, hopefully somone will be along shortly to answer you in depth and factual!, All i no is that if you have Celiacs, you must stict to the diet whether you have symptons or not, as it is still doing you damage inside and can cause more/worse illnesses, I no i am new to this and you might think "shut up what do you no" lol, but im guessing when you stuck to the diet as a child there wasnt so much knowledge or substitutes around, it may be easier this time around than what you are thinking it will.

    Like i say , hopefully someone will answer you who will know alot more than me, but in the mean time please take care and stick to GF.

    Regards

    Paula x

  • Thanks for the response Paula. Im trying but I really find it too difficult, especially when Im hungry ; ( I only eat GF bread and Pasta as I know anything heavily Glutened would show a rather nasty reaction, done this once before by mistake, ate 2 slices of normal home made bread instead of MY home made gf bread and I was as sick as a dog and in absolute agony for 4 hours. I do read all ingredients on packets but half the time im none the wiser unless of course it says contains wheat or gluten. Thats the other thing that confuses me.. how do I know if i can eat the things that say contains wheat ?? or is that always a no aswell ??

  • I think asking to see the dietician could be your best bet, they would be able to give lots more information, im still waitingfor my appointment to come through, im eating potatoes, lean meats, lots of fruit, veg and salads and although it is still early days i can feel the benefits already

    Paula x

  • I do generally stick to those but what about gravy ??? I use the Bisto Jar stuff but I think recently even they took GF off their label ?

    I eat salads for lunch but have sweet chillie sauce on it.. just a bit but I really couldnt tell you if its GF by reading the ingredients ; (

    Half the time I feel guilty eating these things and yet I may well be able to eat them. x

    It would make it sooooooooo much easier if they just stuck that wheat symbol with the line through it on all stuff we could eat

  • I know what you are saying it would make it so much easier, the chilli sauce i had in the cupboard wasnt gf but i cant remember the make, sorry, for gravy i used the knorr beef stock they are gf and nice, for my salad i put some gf mayo that i got from tescos its called mayola i think? It actually tastes a bit salad creamy to me its lovely.

    X

  • Good to know thanks x

  • Have you had a look at the Coeliac UK site? It gives a lot of information on reading labels and what you can eat etc. Lots of people are OK with Bisto Best. Wheat contains gluten and is always a 'no', but codex wheat is OK for many coeliacs

    Even though you have little in the way of symptoms gluten damage to your gut will mean that your body will not be absorbing essential nutrients. This can lead to osteoporosis, infertility, anemia and other problems.

    My husband is not coeliac but eats gf food with me (apart from bread). I can make/buy everything we like, so he can still have his favourite meat pies! (using buckwheat flour). I don't need to take any vitamins.

    It takes a bit of getting used to, but there is more ready prepared gf food than there used to be. I do hope you can get some helpful advice from the dietician and that you can stick to a gf diet. It really is important for your long term health..

  • Tracey,

    You need to discuss your current diet with your GP & insist for a referral to a dietitian. Be honest with that person about your eating to date.

    From reading your post you appear to be in denial about your coeliac diagnosis. That's understandable as many people can't see the damage or feel that ill it can be hard to believe the diagnosis. It's interesting that the you seemed to avoid the diet the most when you were 22 yrs old.

    I'd recommend you write a list of all the reasons you find it hard to stick to the diet & post them up here & we can give you tips to overcome them.

    If your main problem is that you're confused about the coeliac diet here's some basic tips:

    1. gluten is in: wheat, rye, barley, oats, spelt & all derivatives of these e.g. pasta, pizza, beer, soy sauce, Worcester sauce

    2. To eat gluten free it's best to eat things that are as natural as possible i.e. those without lots of ingredients i.e. meat, fruit, fish, veg

    3. anything that is processed is generally likely to contain gluten e.g. crisps, biscuits, sweets, sauces, gravy - so it is essential to read the ingredient label of anything you would eat or drink that comes pre-packaged

    4. just because you don't always feel pain when you eat gluten doesn't mean your body is being damaged - it just means you're not aware of it i.e. you can't see infertility or bone damage that coeliac disease can cause. Nor would you see the cancer that it would likely cause if you continue to eat gluten as a diagnosed coeliac

    5. if you've been through the hassle of an endoscopy & felt the agony of being glutened ask yourself why you're not motivated to stick to the gluten free diet

    6. wheat = gluten Codex wheat starch (has to be labelled as such) is wheat that has been processed to remove the gluten that causes a reaction. However, many coeliacs feel that they react to that as well so it's often worth avoiding that at least in the first stages of going gluten free

    7. The new EU law on gluten labelling has changed the way products are labelled. Now they cannot say 'suitable for coeliacs'. So you may find the labelling more confusing.

    Instead they can say 'low gluten' (which no-one really uses i.e. 200ppm > 20ppm of gluten which many coeliacs can tolerate) or gluten free i.e. the new low level for being called gluten free. These items must be tested to confirm they are gluten free i.e. 20ppm and less of gluten. A new term 'no gluten containing ingredients' has appeared. Do note this is not legally gluten free nor do they have to test their products. So we avoid all items with this labelling as it is ambiguous and doesn't mean an item is gluten free

    8. if you are in doubt as to what is gluten free then don't eat or drink it - better to be safe than sorry

    9. You can email your normal supermarket and most will be happy to send you a full list of all their items that are gluten free so you can shop carefully

    10. the reason many items do not use the crossed grain symbol is that it is licensed by Coeliac UK and they have to pay a lot of money to use it and test that their items are gluten free. Instead many brands have begun to recreate their own symbol e.g. M&S

  • Fiona's post is exactly what you need to know! To reiterate: just because you're not getting obvious symptoms does not mean your gut is not being damaged. Some people just don't get the stomach pain, diarrhoea, bloating etc. that often goes along with being coeliac. But there's still some excellent reasons why you should be as strict as possible with your diet:

    -Osteoporosis. Malabsorption of calcium and vitamin D can weaken your bones and cause pain and fractures. This is particularly important in a woman of your age as your bones are already naturally beginning to lose their density. Taking calcium supplements won't entirely sort this out. After all, there's not very much point in chowing down on the calcium if it passes straight through you!

    -Anaemia. Malabsorption of folate and iron in particular can lead to reduced levels of haemoglobin, the molecule that transports oxygen around your body. This can make you feel tired, run down and out of breath easily.

    -Clotting disorders. Occasionally, malabsorption of vitamin K (which is required for blood clotting) can cause problems with abnormal bleeding.

    -Infertility. Probably as a result of a combination of lack of total calories and various vitamins and nutrients, women with untreated coeliac are less likely to become pregnant and more likely to suffer miscarriage.

    -Weight loss. Obviously, if you're not absorbing much fat or carbohydrate, you're going to lose weight and feel tired and lacking in energy.

    -Cancer. Untreated coeliac disease is associated with two types of cancer- adenocarcinoma of the small intestine and a particularly nasty kind of cancer of the white blood cells called enteropathy-associated T cell lymphoma. This is because wherever you get chronic inflammation you increase your risk of cancer but also because all those white blood cells are constantly being activated by gluten and they themselves can sometimes transform and become cancerous.

    -Hyposplenism. Your spleen is involved in clearing bacteria out of your body and when its not working properly, as can sometimes happen in untreated coeliac, you'll be more prone to infection.

    -Dermatitis herpetiformis. A horribly itchy skin rash that is the bane of some coeliac's lives and is associated with antibody deposition under the skin. It can develop at any time and usually improves on a gluten-free diet (although it can take months or years).

    -Neurological conditions. There may be some link with damage to the nerves and a part of the brain called the cerebellum with coeliac disease (although not much is known about this). This can lead to problems with balance and abnormal sensation in the arms and feet.

    If you're on a decent well-balanced GF diet and don't have any pre-existing medical problems, you don't need vitamins or supplements. However, I was wondering- have you had a bone scan recently? Given the fact that you've been having bone pain, it would be a good idea to see your GP regarding this.

    Finally, I'm 22 and I live with my boyfriend and I can definitely tell you that these days it's much easier to eat GF! We haven't really had to change our cooking habits at all (except for the fact that he eats normal bread and I don't) and it doesn't take much to have a brief chat to the chef or manager whenever you go out to eat. Most of the time, they know what coeliac is anyway, simply because it's so common, and will be happy to make a few alterations for you. It doesn't take much effort on their part to substitute wheat flour for cornflour in a sauce, after all.

    Snacking is my downfall too but I've avoided temptation by making such I always have something to nibble on in the house or when I'm out and about. Having a list of normal snacks that it's safe to eat is handy too as you can nip into a newsagents and buy one without having to worry. Bountys are my go-to chocolate bar at the moment!

    Anyway, best of luck and chatting to a dietician sounds like a good idea. Let us know how you're getting on.

  • Please darling be aware that not living a gluten free life when you are coeliac can give you a chance of cancer

  • Not just cancer, if you 'cheat' even once per month, you increase your risk of early death 6-fold, and the majority of the causes of death are from immune-mediated disorders.

    It takes less gluten than is visible to the naked eye, to cause the full blown inflammatory reaction in your immune system, and it takes around 4 months - up to 6 months for this to calm down from only one exposure.

    Coeliac disease doesn't kill you fast, like a peanut allergy can, the damage it does to your body accumulates over time, like a car slowly rusting, and it's all below the surface. By the time you have symptoms of the damage being done, it's often at the end stage of a serious problem.

    You are quite likely to develop a second or multiple other autoimmune disease, and the organ most affected by CD is actually the brain, not the gut.

    Also, if you haven't had children but are planning on it, aside from having trouble falling pregnant, the heart break of miscarriages, a difficult pregnancy or birth, the chances of your child having serious health consequences are significant - behavioural disorders or learning issues, another auto immune disease, allergies, asthma.

    Please take care of yourself. It's really not worth risking your health in the long term for the 15 minutes of pleasure or convenience that it takes to eat something with even a trace of gluten in it.

    Let us know how you're doing and if you need any help with anything. We've all been through it too!

    Read this blog post from Shirley Braden in the states, I think all of us can relate to it at some point!

    glutenfreeeasily.com/five-s...

  • I was diagnosed 25 yrs ago and like you for a while i tended to cheat a bit as i did,nt have any adverse reactions.It was only much later that i began to have bad days,feeling really ill etc,and now i realise its because i have probably been "glutened" I didnt realise how much damage can be done by eating just a "bit". I thought i was just having an off day,what a fool i was.Take my advice and stick to the gf diet.It does get easier.

  • Thank you so much for your comments...

    Ok I'll start with the top and work my way down..

    Penel thank you for putting me straight with wheat and gluten although I still dont understand why some say GF and some say Wheat free ??

    When you say "some" are OK with Bisto best, how do I know if I should or shouldn't as I dont have any of the painful symptoms ?

    And thanks for the heads up re buck wheat flour as I would of thought just by the name its a no no.. What about Mustard flour as I see this in things and wonder about it ??

  • Tracey- see what Coeliac UK have to say about Bisto (http://www.coeliac.org.uk/gluten-free-diet-lifestyle/choosing-safe-foods/food-and-drink-directory-2012-faqs) but to summarise, although it's made in a factory that also handles wheat, it's been tested to ensure it contains less than 20ppm which is the cut-off point for most coeliacs. However, a small group of 'super-sensitives' can't handle even this very small amount of gluten. My advice would be to try it in a meal where there's no possibility that anything else could be cross-contaminated (in a roast dinner cooked from scratch, for example) and see how you feel afterwards.

    Buckwheat is fine to eat and many GF products use it instead of normal flour. Despite the name it's actually completely unrelated to wheat!

    Mustard flour is just finely ground mustard seeds and is fine if that's listed as one ingredient. Be aware that some processed mustard products (like mustard powder or mustard sauce you buy in jars) use wheat flour to bulk it up so always check the label for these things.

    Reading labels can be confusing. Have a look at these two sites from Coeliac UK:

    coeliac.org.uk/gluten-free-...

    coeliac.org.uk/healthcare-p...

    If it's still all a bit new and confusing, printing off the latter list and having it with you when you go shopping can be useful (I've done it in the past!).

  • Fiona, thank you also for all that information, I have a doctors appointment on Wednesday and I am most definately going to ask to be referred to a dietician.

    Im sure I have had bloody test to check levels of things and they have always come back fine. I suppose this is why I find it so hard to deal with as I can see no damage its causing... not that I want it to but i think it would be more real if I felt sick like I did as a child.

    Northernsoul... Wow thats some info you've given me there and I was shocked to read you are only 22!! you seemed so much older with all your sensible chat and you make it sound so easy, which is a good thing as you have inspired me! and not forgetting the Bounty!! omg I love them and didnt know I could eat them safely!!!

  • Haha, I love them too! And believe me- if a scuzzy student like myself can get by on a GF diet, you'll have no problem once you get to grips with it all.

  • Thanks again to the rest of you, all very informative stuff.

    I had my splean removed as a child, my eyes sight is dreadful and my teeth were really bad until i had them all done so I suppose I have suffered under this awful disease but not to the feeling ill scenario.. well not since being a child anyway. My weakness mainly falls when we are out as a family and my husband loves his chinese and indian food... do any of you eat Dim sum ?? we go to these kind of restaurants quite frequently but when I ask the waiters what these things are made of they dont even understand my question so I just eat the ones that look like that have been made with rice flour.

    One other question.. how positive are the blood tests they do for this now ?? My two sons had the test and was told they are fine but they both suffer with rashy arms.

  • Dim sum can often contain wheat starch as well as rice flour so you need to be very careful. I think grabbing the manager (who will speak good English) and making him/her understand is the only way to be sure. It's irritating but once you've got over the embarrassment factor they are often very willing to help. There's no alternative, I'm afraid- it's just not sensible to guess and hope for the best. I should also mention here- are you aware that Chinese soy sauce contains wheat too? Japanese Tamari soy sauce is often OK (but it's still a good idea to check), however.

    The blood tests for coeliac are relatively accurate (their sensitivity i.e. the likelihood that they'll pick up someone with coeliac disease is about 95%) but false negatives do occasionally occur. Take your kids to see your doctor about the rash and make sure that you mention you have coeliac. Odds are it's probably something unrelated like eczema but it's worth checking.

  • I knew about soya sauce, but wasnt aware about the wheat startch in dim sum :(

    I went back to my doc's today and have set the ball rolling... am waiting for an appointment with Dietician and also had blood tests done there and then :)

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