Is your dietician helpful?

I'm just wondering what your experiences with dieticians have been like. I am a bit disappointed with the advice I've had from mine.

I saw her last week, having had a +ve coeliac screen test just before xmas (I've been on the diet just over a year). She asked if I was checking labels - I said I was. She suggested I try avoiding codex wheat starch and barley malt extract - I explained I was already doing this. She said there's nothing else I can do; some people just don't feel much better on the diet.

She has also said some things that I don't think are quite correct:

"You can eat barley malt extract. As long as the word 'extract' is there it is safe" really? (I'm avoiding anyway)

"20ppm is definately safe for all coeliacs" I think even Coeliac UK admit that this is not the case!

"Refractory coeliac disease is where your gut is healing, but you still get symptoms" errr, I thought refractory meant not-responding-to-treatment (i.e. not healing)

Am I wrong to be worried? I was really expecting her to help me plan a more effective diet, not tell me this is as good as it gets. I'm feeling pretty lousy at the mo with achey joints, tummy cramps and nausea, and it's so depressing to be told that I can't expect any of that to improve!

18 Replies

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  • Hi, my advice is to take overall control of your own way of makig your condition better. Do your own research and become very knowledgeable about your condition, symptoms and possible improvements. Use the medics as another resource to ideally provide expert help or if they appear not able then at least to confirm your prognosis isn`t going to either harm your situation and may improve it.

    Medics are good bad and indifferent. If I go in armed with well researched or sound logic then usually they are fine and can help. But don`t expect anyone, including consultants to always be right. Use your own judgement and as you get more and more `informed` you`ll get better at deciding what`s good advice and what isn`t.

    They are only human and coeliac disease has only been on the radar for a relatively short medical timescale.

    Best of luck.

  • I would say, do your own research, and listen to your own body...if you react to something, eliminate it...and by the way there is a lot if informaiton on the internet...

  • mine was very helpfull but this year have had a letter from hospital that they are not doing it any more and have got to go to my own doctor for advice and blood tests wich is ok but can a doctor give that sort of advice i ask

  • I've had varying success with dieticians. I learned early on that you really can only trust yourself. It also takes quite a long time for some people to feel the real benefit of being on a coeliac diet, So don't despair that you don't feel great after one year, I'm just at the end of my second year now and starting to really feel better. It takes time to heal, especially if you we're diagnosed late.

  • Hi Racquelle, There are a few things that you can do like have a hydrogen breath test to see if you are lactose intolerant and many coeliac are temporarily lactose intolerant as the enzyme lactate that breaks down lactose is produced at the tips of our villi.

    Another thing that comes up time and time again in coeliac circles is coeliac having a reaction to artificial sweeteners derived from wheat like dextrose and maltodextrin. Caramel colour E150 and even citric acid cane be wheat deriv's.

    Now 20ppm of gluten may be considered 'safe' for coeliac but when you realise that 20ppm is 20mg per Kilogram and on a molecular level there will be millions of toxic molecules in 1mg of gluten.

    I agree with the others who say take responsibility yourself and listen to your body.

    So I would consider trying to make all your food from scratch using fresh naturally gluten free foods and with the help of a nutritionist I would look into an elimination diet and keeping a food diary so you can monitor what you are eating and how new foods affect you.

    Lastly don't give up and take things one step and one day at a time and I hope that you start to feel better soon.

  • I only see mine once as year and when I do I take a list of queries with me which have come about from me doing my own research.

    For instance this time I will ask about having my serum calcium and renal function checked as I have been on Calcium / vitamin d for 2 years and have never had this done. I will also be asking about repeat bone scans.

    I pretty much watch my own diet and read all labels..

  • Just wondered what these serum calcium and renal function tests are for? I am on the same tablets as you and these tests have never been mentioned to me.

  • My dietician came, I think, really expecting a newby starting from scratch, and she would have been poor even then. Having spent some time on the Internet, her visit was really a waste of time. I did wonder just how much training dieticians receive in regards to coeliac's.

  • I would agree, diagnosed at end of Dec last year but even by time I saw dietician 4 weeks later I knew more than her!! Only advice was join Coeliac UK and have more calcium in your diet!! Not much help at all.

  • dont even go there...having gained weight since diagnosed i asked for

    advice...I exercise lots...only advice i got was "just think what weight you would be if you didnt exercise"...needless to say i asked to see a different one who was fab

  • Thank you everyone for your advice. I will continue to do my own research. There is so much ambiguous info out there though...

    I don't find the dietician very receptive to discussing anything that I have read, she just flatly contradicts it and directs me to Coeliac UK as the only trustworthy authority on GF.

    I struggle to identify foods that I am reacting to (apart from wine - that really makes me feel dreadful!), I just feel achey, lethargic and queasy alot of the time. I have had bouts of obvious glutening, but that has usually been a case of cross-contamination. I will ask about the lactose breath test and elimination diets.

    I don't eat a lot of processed food, but I will try to avoid this. Should I be eating gluten-free bread? I've not had alot of success with making my own :(

  • I found, when diagnosed, i had done my own research, went armed with lots of questions, queries, to which i received answers. But overall my impression was, the dietician is used to speaking to people who are unable to help themselves, and in effect, had prepared as such for me. So from a personal level i felt i gained very little from my visits to the dietician.

    I have taken it upon myself, that if i haven't prepared the food, then 99% i wont eat it, unless i am absoutely certain of the food being handled by others. I avoid all processed food, and have found doing batches is actually fairly striaghtforward once you get into a routine.

    So, to answer the question i felt the dietician was of little help.

    good luck..

  • I'm getting much more wary of eating food prepared by anyone else. I tend to take my own if I go to a friend's house.

    I think I need to get a routine going with making extra portions and freezing.

    Thanks for the tips!

  • Hi racquelle

    I can't eat shop gf bread, like a lot of other 'free from' food, the additives upset me: things like yeast, cellulose and xantham gum particularly. The high sugar content doesn't do me any good either. I make my own bread from time to time, yeast free. Avoiding processed food is a very good idea, especially when first diagnosed.

    If looking on line I try to find scientific papers, if possible. I've never seen a dietician but if they are anything like my gp I haven't missed anything.

    You may find that you are sensitive to other food as your body heals, unfortunately. It seems to be fairly common.

  • Hi Penel,

    How do you find scientific papers? Do you go to a particular site? I had assumed that research papers wouldn't be in the public domain (having done lit reviews at uni and needing an athens password to access the journals - although that was physics so maybe it's different for medicine?)

    Thanks for the diet advice too. I think I need to take a long hard look at what I'm eating...

  • Hi racquelle

    One of the best resources is PubMed, an American site. I also look for articles from The American Journal of Clinical Nutrition and science summaries in Scientific American. WebMed also have summaries of scientific studies. Some BMJ articles are free to view, but mostly I find papers from the US are easier to access. Dr Briffa (UK) is useful for general health advice.

    I have also found some books to be useful on general health, eg. Gary Taubes "The Diet Delusion".

    Good luck with sorting out your health. My experience has been that my diet has changed a great deal, the more I have researched.

  • Thank you! That is a great help!

  • Forgot to say that a really good site for coeliacs is the Australian coeliac organisation. Have a look on GFG 'likes' page for this and Dr Rodney Ford.

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