Help for a newbie

For years I have suffered with tummy troubles and self diagnosed about 18 mths ago that it was gluten causing the problem. Got referred to the hospital and was told that I have an intolerance and not coeliac disease. So far, so good (sort of). I still get upset tummies but not as many as I used to.

I am sticking to everything as far as possible, however I have read somewhere that there can be gluten in things like cheese or fruit yoghurts. It seems to be a minefield out there and the only way I think I can overcome this is not to eat any sort of thing that has been 'prepared/processed', just stick to fresh food.

Am I being over cautious.

32 Replies

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  • Hi Silver123

    I'm glad to hear that you have sought medical advice in the past. If your sure that no gluten is creeping into your diet, have you ever considered that you may have additional intolerances? As well as gluten, I'm intolerant to dairy and soya. Hope this helps.

  • Thanks. The only other thing that I can think of is that I had my gallbladder removed a few years ago and I was reading up last night (determined to find out exactly what is wrong) and in some cases fat and dairy products can aggravate your stomach. I do like dairy products, so I will cut down on those and see if it makes a difference.

    That must be a nightmare for you having to find suitable foods.

  • Hi,

    It does make life extra interesting!

    By all means consider cutting out the dairy. I found that I often used to crave things I was intolerent to! Giving up dairy was worse than giving up gluten for me at first.

    Firstly though, it might be worth trying the lactofree range, to see if that calms things down for you.

    If you find that you react to these as well and need to cut out everything, then do be extra careful with monitoring your calcium intake. Cutting out gluten AND dairy is likely to make you deficient.

    Don't be afraid to go back to the doctors though if things persist.

  • Thanks, will have a look for the lactofree range when I go out on Monday.

  • Hello Silver123. I cannot eat cheese containing potassium nitrate. I have found some specialist cheese shops have really good cheese without potassium nitrate. They are more expensive though. I tried organic types in the supermarkets but was still ill after eating them. Also I cannot eat anything containing glucose syrup and I wonder if that might be in some fruit yoghurts? Glucose syrup is in so much stuff especially confectionery. I try to avoid anything processed or pre-prepared as I also can't eat anything containing hydroxypropylmethylcellulose either which is in lots of Free From products. But sometimes I slip up either because I or someone else has not been diligent and I get ill. Hope this helps.

  • That's interesting about the Free From range, because I use those as a standy by for when I cannot be bothered to cook from scratch. I am on my last box of that so will not buy any more for a while and see what happens.

  • I think Jerry's suggestion is a good one - to try and see a nutritionalist. I was referred by my GP to a dietician at our hospital. She helped me with FODMAPS an elimination diet, and I learnt what food to avoid. It is important to have advice on this. Although I found doing this elimination diet difficult it was well worth it. I now know exactly what food I can and can't eat so if I introduce new food into my diet and get ill I know why. I have learnt to check labels scrupulously. For example I can't eat many of the stock cubes - we have learnt to make our own stock. Also I can't use GF flour etc. but people on this site have given me alternatives and been very helpful. This time last year I could not eat cheese sauce but have now found cheese I can eat and make sauce with potato or rice flour. Nobody noticed the difference! Good luck with this. I am still learning!

  • Thanks urbangirl, will see how I get on in the next few days.

  • Hi Newbie & urbangirl, check out Commission Directive 2007/68/EC for legal low levels of permitted gluten also the European Food Safety Authority and put gluten in the search box, you will find more information. Hydroxypropylmethylcellulose (HPMC)is an alternative to gluten mainly used in bread products, Hypromellose (HPMC) is used as a coating in medications they are both also known as E464, there are concerns in the pharmaceutical industry of leachable formaldehyde. In the 50's it was noted that wheat was sprayed with formaldehyde to stop it rotting so if you are having issues with HPMC or E464, formaldehyde can be found in many natural foods.

    I cannot eat gluten of any description and also have a diagnosed formaldehyde allergy where I get anaphylaxis reaction to formaldehyde so now go out very little because of smokers in doorways and exhaust fumes.

  • Thanks for this Pretender

    I am sorry you have such difficulty going out. It must be quite isolating.

    There is a lot to absorb in just the Directive! What natural foods contain formaldehyde?

  • Just total incompetence in health & safety chemical ingredients, training and data at my last job. Seven years to get diagnosed with the allergy but only one year for my second CD diagnosis. The directive check out Annex IIIa for permitted ingredients in food. As for formaldehyde in foods check out : cfs.gov.hk/english/programm...

    A good place to get patch tested for formaldehyde if you have skin issues is The Cutaneous Allergy Clinic, St Thomas' London. Dr White. Your can also get oral tests carried out. Also worth looking at the NZ Dermatology site.

  • Hi Silver123, being self diagnosed can lead to a questioning that it is actually gluten that is making you ill unless it is self evident.

    As you can see from the replies that you have had already many coeliac cannot tolerate other foods like dairy and some people have issues with fructose ( a natural sugar in fruit) And glucose has yet again raised it's ugly head, glucose is like dextrose an artificial sugar made from grain and in the EU this is commonly wheat, it is very processed and is considered as gluten free but some coeliac have issues with wheat deriv;s and those who are wheat intolerant avoid low cal drinks like the plague. Caramel colour and citric acid can be wheat deriv's.

    So you ought to read food labels and here's a really good list of E no's that will give you an idea of their side effects etc: dflock.co.uk/colitis/foods/...

    What I think that you should consider is seeing a qualified nutritionalist and discuss your symptoms and ask about an elimination diet where you start off with simple basic's and then gradually introduce new foods one at a time, monitoring how you feel in a food diary. I think that it is very important when doing an elimination diet to do it with the guidance of a nutritionalist as it is very important that you still maintain a balanced diet.

    As for eating mainly fresh foods I think this is one of the advantages of being a coeliac and I eat mostly fresh and naturally gf foods it is a much healthier option than a diet based on processed foods regardless of dietary restrictions.

    Jerry

  • Hi Jerry, Yes, I can see what you mean about the self diagnosis which is why I ended up going to the doctor and then being referred to the hospital. I had to go back onto gluten products for a while, so that they could do the necessary blood tests, which is how he came to that conclusion.

    Thanks for that link, I will have a look at that in a minute.

    Will have to think on the nutritionalist bit as they look a bit pricey. Think I would rather stick to the fresh foods for now.

    I have got a lot to think about now from all of you.

  • Silver124 see if you can get a referral to a dietician via your GP. I was diagnosed NCGS and the GP was very sympathetic to this. It is an NHS resource and really helpful.

  • Thanks for your advice, appreciate that.

  • If having to restrict your diet, especially when you've got a diagnosis, you shouldn't have a problem getting referred to a dietitian through your GP. I have been referred more than once because of multiple reactions and further restrictions over the years, but unfortunately it is hit and miss how good an NHS dietitian is and luck if you get a good one who's helpful. I think they have improved, e.g. they now know what Quinoa is and I used to have to tell them alternatives like this! It's worth a try.

  • Thanks. I think a lot of things are hit and miss with them, don't get me started on that lol.

  • hi there I get gluten free,and lactose free yohurt, lactose free milk and hard cheeses are fine,because lactose seems a problem. hope it helps

  • Thanks. Will have a look when I go shopping tomorrow.

  • silver 123

    I completely agree with you stick to fresh and leave processed on the shelf,there are loads you can eat,all the fruit and veg and all fish and meat and rice and some pasta most cheese is safe its the cheeses that have different thing in them and watch out for grated bags of cheese they have wheat flour (gluten)in them to stop the cheese from lumping together,most tinned beans are ok hope this helps you.

  • Yes, apart from checking out things like gluten free pasta it is really only going back to the basics of how I ate when I was younger. Thanks for the tip about the grated cheese, although I must admit that I don't buy it that way but it is worth knowing about.

  • It is a requirement that grated cheese only has potato starch as an anti caking ingredient and is totally free of gluten. If you cannot tolerate Dextrose be careful with some tinned beans and some bacons.

  • Thanks. I think I would skip the tinned beans anyway. Lot of information to take in and I have only been on here a day!

  • I feel your pain. I remember when I first thought I had an intolerance to gluten. I was lucky, I had a neighbor with the disease and she helped me. I also had a obgyn doctor that suggested I go off the gluten. I went to see her after still having extreme pain thinking it was a female problem.

    I shan't eat dairy, soy and have chosen to go vegan. (Over 3 years ago)

    I do research on the internet and read labels! I don't eat out much because it is just to difficult. I don't like getting sick when I do. I have a few restaurants that serve me safe gluten free food. I have gotten to know the owners, wait staff and they know that I can not eat gluten. I always feel safer when I see them and they take care of me. So get to know the restaurants and the staff and owners. Tell them your needs, don't be afraid, after all it is your health.

    I wish I could help more. Good luck and bless you! It gets easier. Hang in there, you are not alone. I guess 1 in every 133 people have this issue.

  • Thanks for your message and good wishes. It is surprising how many people have different sorts of allergies/intolerances and, thankfully, mine is minor compared to some.

    Yes, there is a lot of research to be done by me, I will get there gradually.

  • Hi Silver123

    I have been diagnosed with Coeliac Disease since the age of 7 (15 years!), and I still come across new foods that have hidden gluten. The majority of yoghurts are gluten free (obviously not those that have bsicuit etc in them), however there are some flavoured yoghurts that are not gluten free, and the ingrediants constantly change. I usually buy natural or greek yoghurt and frozen fruit and then make my own flavours that way.

    As for cheese I stay away from pre greated and always read the label, it is worth going to a specialist cheese shop however I'm a student and dont have the funds for that!

    Hope this helps :)

    Abby

  • Thanks Abby. You are well practised in what to look for :-) I will try some natural yoghurt at the weekend (then I can eat it and know I am not going out anywhere) and will add some fresh fruit to it.

    This is the trouble when you have to stick to certain foods because of problems, they are always more expensive.

  • Yes try it it actually tastes better, just more effort! And yes, more expense.

  • I've found that I get more sensitive as time goes on, so watch out for that – initially I didn't notice wheat derivatives in, for example, vitamin pills and now I get a reaction from them. I reckon it's taken me about two years to be comfortable with knowing what foods I can and can't eat. Now I cook most things from scratch and I've virtually stopped going to the supermarket.

    One thing I rather wish I'd done at the beginning is identify a limited (but healthy!) range of good, safe meals and focus on circulating through them, rather than endlessly trying new things and having low-level reactions.

  • Thanks for the reply. I know it is early days yet but I seem to feel better this week having ditched the processed food and eating totally from scratch. Takes more time but it is worth it and tastes better. I have also started a food diary so I might be able to pinpoint anything that does upset me in the future.

  • If you join coeliac Uk you can get a copy of their directory of foods which is very useful for newbies, if you have been advised to avoid gluten you should ring them and check whether you can join. If you can't get hold of this, all is not lost because all food labels in the UK will state whether they contain wheat, barley, rye or oats. So you just need to read the label. Most cheese and yoghurt is OK.

    Some people newly diagnosed with coeliac disease cannot tolerate dairy, but this can improve with time.

  • Thanks for that tip, will investigate further with that. I think that I did join their website but didn't explore it thoroughly. The directory will be useful. Thanks again.

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