Open Letter to Dietitians – Gluten Free

 

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Newly diagnosed – then you will referred to a dietitian to help you will your transition to gluten free. From experience, I would like to offer a few words of advice for dietitians consulting with those new to coeliac disease.

To the Dietitian supporting a newly diagnosed Coeliac disease sufferer…..

  1. Know a little about your client  and be prepared – the dietitian we visited bumbled his way through his notes mumbling that he wasn’t quite sure the condition my son was referred to him for but as he was a teenager and was referred to by a gastroenterologist then it was most likely one of two conditions. The fact that he knew my son was a teenager and the specialist who referred him meant that he did in fact receive the referral and should have been prepared but ….
  2. Remember that one size does not fit all– have age specific literature at hand – our dietitian showed us a pamphlet, said he only had one copy and would post a copy in the mail.  The pamphlet we received was actually targeted for those aged 6 – 10 year old and was not the one we had been shown. My son was 15 years old. Be mindful that a client with coeliac disease is different to a client who is going ‘gluten free’ for other reasons. Be mindful that an 80 year old eats and cooks differently to a 20 year old uni student.  Be mindful that emotionally a 55 year old will deal with a diagnosis differently to a 10 year old.
  3. Acknowledge that you have two clients in your room – the parent and the child.  Both have specific and very different needs.  Address the primary client – the person with coeliac disease. Our experience saw my son largely ignored with little attempt to engage him in conversation or ask questions of him.  My son felt alienated as was clear by his body language as he pulled the hoodie of his jacket over his head and slumped down into the chair. A friend had the dietitian eye her other child  and launch into the urgent need for him to also be screened. In an instant my friend had two insecure children and she felt even more overwhelmed than she did before her visit.
  4. Acknowledge that in the short to medium term the journey is difficult and confronting and time consuming – Never say “but there are some many products you can buy these days that are gluten free” or “a gluten free is relatively easy to adjust to if you make a few little changes” or ‘there is a whole aisle of gluten free products in the supermarket”.
  5. Speak from Experience – purchase a range of gluten free products and taste test them. Have a staff taste test. Have a family taste test.   Experience for yourself how disgusting ‘Aussie Mite’ tastes or maybe have one of your own children taste test for you and get their honest feed back.  Try some of the gluten free biscuits and experience how different the texture and taste is.  Try a sandwich using gluten free bread to see how well it handles. Have a go at baking gluten free bread and experience how different the texture is. And please please don’t suggest to a teenager gluten free weetbix – taste it and see what I mean.
  6. Be Realistic – Is it really realistic to send a teenager off to school with a can of baked beans and a fork and expect them to sit with their friends on the school oval and eat cold baked beans for lunch?  This suggestion we were given was wrong on so many levels and certainly did not take into account how different the teenager with coeliac disease is already feeling and at a time when teenagers don’t want to be conspicuous, the dietitian was suggesting the teenager make themselves even more conspicuous. This suggestion was not one of transition and small changes but a total shift from what used to be “normal”. It was like telling someone they need to fly to the moon to get a cup of water.
  7. Support the guidelines of Coeliac Queensland – A friend told me that the dietitian said that it was okay to eat products with the statement ‘may contain gluten’.  FYI – Coeliac Queensland’s statement is : ‘It is also important to avoid cross contamination by avoiding products with statements such as ‘may contain gluten’.  More importantly, it is one thing as an adult with coeliac disease to ‘take risks’ but it is another thing for a parent of a child to encourage their child to ‘take risks’.  As the parent, we have a duty of care to teach our children about the importance of their need to be ‘gluten free forever’.  We have a duty of care to teach our children to take responsibility for their life long gluten free diet and therefore we should NEVER EVER encourage our children to take risks. We must teach them so much about their new gluten free lifestyle and ‘taking risks’ is certainly not one of those lessons.  An adult coeliac who takes a risk can then honestly evaluate if they suffer from the possible contamination.  A parent encouraging their child to take a risk cannot honestly evaluate the possible side effects of contamination.  More importantly for a sufferer of coeliac disease who is asymptomatic then how can they judge whether their health is being compromised other than another round of blood tests and gastrostrophy.
  8. Don’t Give False Hope aka Don’t Give False Information – My friend  told me that Allens Red Frogs were okay because the dietitian told her daughter that she could eat them.  My response was that I was 99% sure Red Frogs contain wheat, because if  they didn’t,  then I would have a jar full of them at home.  I also do acknowledge that over time companies do change recipes and that possibly this had happened with Red Frogs. However: Ingredients of Red Frogs: Glucose Syrup (Wheat or Corn), Cane Sugar, Thickener (1401 or 1420) (Wheat), Gelatine, Food Acid (Citric Acid), Flavour, Colours (120, 122). When one consults Coeliac Australia’s Ingredients List it identifies 1400-1450 (wheat): meaning that the thickener in Red Frogs contains gluten and is therefore a ‘no go’ item.
  9. Don’t Confuse – It is all well and good telling  someone about Teff and Quinoa and Sorghum and Millet and Buckwheat as a way of communicating that there is a range of grain options out there that are gluten free, but when the newly diagnosed is struggling with restrictions and major changes to their lifestyle and diet, then they are not going to want to experiment with ‘new’ produce.  One really needs to be a confident cook to branch out, especially in the beginning.  Don’t say: if you like your porridge then you can cook quinoa porridge.  This is not a substitute in any shape or form; it might be trendy, but it is most definitely not palatable.
  10. Set Your Client up for Success and Confidence – Additionally to the advice and guidelines and list you provide your client with,  tap into another valuable resource: other coeliac disease sufferers or mothers of children with coeliac disease.  It might be worthwhile contacting your local Coeliac Support group for some grass roots advice: easy and simple recipes, tried and tested handy hints, a list of realistic and acceptable lunch box suggestions, seeing if there are members with whom you could pair your client eg another mother of a teenager, another adult who has Type 1 diabetes and coeliac disease.

My son’s experience at his dietitian’s appointment will most likely mean that he will never again visit a dietitian. He felt alienated, he felt ignored and he realised that ‘the experts’ really don’t understand how frightening and confronting a diagnosis is. Unfortunately, this is not the outcome I wanted for my son.  I wanted my son to be guided and supported and should in the future he need advice about his diet, then he would have no qualms about booking another appointment with a dietitian.

Please also take time to undertake a little self-evalutation and put yourself in the client’s shoes and walk around in them for a week or a day or for just a lunch and try to see their gluten free journey through their eyes.

Sincerely

A Mum of a teenager with coeliac disease

gluten free preparedness clarity REALISTIC

honesty PERCEPTIVENESS coeliac disease

2 responses

  1. Everything is so true. I was diagnosed at 46, cooked all my life, liked always to experiment and was so sick, that it was a relief for me. But NONE of gastroenterologists had a clue and my diagnosis was an accidental unexpected guess from hematologist. There are a lot of people in every profession who will be not of much help medically and damaging psychologically. Be prepared for your own research, be prepared to ask questions and ask more if not satisfied. Trust your child and your gut feeling, and never give up. The best investment for our children we can do is in their health and well being.

    1. Thank you Irena for your thoughts. We do have to push the boundaries and be advocates for ourselves and for those in our care. Health equals quality of life both physically, emotionally and mentally. Health professionals really do need to look at the big picture and understand that one size does not fit all. A person is at their most vulnerable when they are chronically ill and/or having to confront a diagnosis of a chronic disease.