I had a very short conversation with an NHS dietician today, who told me that her responsibility was to make sure that I understand what I need to avoid.........then discharge me.
I asked what nutritional advice she could give me.......... 'make sure you get your 5 a day' and take vitamin D during the winter. I may have been a little sarcastic.
Did they cover calcium at all?
That's not all your dietician is supposed to talk to you about, as you have additional nutritional needs now you're a coeliac. For example, your GDA for calcium is now 1000mg/day, it's only 700mg/day for non-coeliac's.
I brought up calcium. I explained that I don't get enough in my diet, and that I'd had a dexa scan that had shown osteopenia. I also rambled on a bit about my blood results being 'in range' (apart from when I had the kidney injury when it was low), but my understanding was that if there isn't enough in my blood, my body will take it from my bones primarily. The answer was not "Well, let's try and work out what you need" but just "Take 600mg calcium."
I didn't bother asking any more questions.
I understand your frustration. I think I last saw a dietician about 4 years ago when I chased up an appointment after an 18 month gap - after I'd moved health authorities when I moved house. However, I've felt much better doing 'my own thing' and think the most knowledgeable people about coeliac disease are the people with it! Especially when you get a great forum like this where people share their knowledge and info.
Oh my goodness nellie237,I am horrified and don’t blame you for being sarcastic. Although, I too love this form of humour. I totally agree with Sapphire - do your own thing.
I choose a private dietician who was brilliant. I love reading medical research so, she did comment that she felt intimidated by me. 😬 Yes, we are desperate to be well and have quality of life.
Vitamin D3 with vitamin k2 is the recommend.
I appreciate the support Narwal.😊
I've read quite a bit about K2 too (zilch on any NHS site). I now buy grass fed butter and meat, and take 25mcg per day, along with my vit D. I'm still researching magnesium and snacking on pumpkin seeds until I decide.
Ditto on the calcium. I was given artificial sugar filled chewable calcium carbonate with D3 by GP. Worst calcium for absorption. No mention of magnesium or K2. Boron also is missing piece of picture for calcium uptake. Calcium carbonate without magnesium and K2 gathers in arteries and organs.
Keep in mind that Calcium Carbonate is rock. Best to get calcium from a better source that we would naturally eat. We don't eat rocks.
I know Benjamin........and I had a heart attack in 2012, which is why I didn't bother to ask for anymore advice, also why I did so much reading about K2. If you look at the NHS advice on vitamins, all it tells you is that K vitamins are clotting agents. The NHS really needs to get up to speed on this.
Magnesium too. I think at some point they will be advising everybody to take Magnesium, like they do vit D.
Hi Benjamin,I’m so interested any recommended reads with regards to boron, calcium would be gratefully received. It’s quite sad but I can believe you GP prescribing that.
Hi Nellie,Great you seem to be all over it. My private dietician, let’s call her Doris- not real name) emailed me a website she uses - I need to find it for my own records.
Lovely about pumpkin seeds. If you do want to go down magnesium route. I take magnesium threonate (eBay - 5 greens - no nasties) as it crosses the blood brain barrier and even Doris takes it. It works with B1 thiamine - Elliot Overton, another functional medicine doctor has YouTube clips on B1.
🐳
Hmm - it seems to depend who you get. Mine is not very helpful - but at least on my first appointment she gave me a leaflet about my calcium needs and discussed it with me, including whether I should rely on diet or take a supplement. You certainly shouldn't have needed to ask about it yourself.Mine authorises a blood test each year and goes through the results with me, although I always ask for a paper copy of the results so I can analyse them myself and see the changes, rather than just being told everything is "in range".
She did assume that my poor TTG results for the first 18 months were due to me not following a GF diet - like yours saying making sure you avoid gluten was her main concern. She poo-pooed my suggestion that it could be oats and/or the 20ppm question - but I have got the result I want after giving up both oats and shop-bought GF food, following reading on this forum, which is really helpful.
I agree with Sapphire - we need to gain knowledge from one another, make our own decisions, and do our own thing - the NHS dieticians are not experts on CD.
That's interesting about your TTG results and GF food. I eat GF bread, pasta (I don't like it, but I don't think I'd like it if I made it either) and the odd biscuit.
I'm sure my GP will provide me with an annual blood form if I ask for it, but then just leave me to look at the results. I'm curious about what blood tests your dietician authorises. Is it Iron, Folate, B12, vit D, and calcium, or do you get more/less from a dietician?
I get angry when they a) don't have the full knowledge but; b) gaslight the knowledge you have from your own research. Very infuriating. Curse that 20ppm codex to hell, and with it whatever coven of gluten-peddaling witches decided that it was ok.
Hi Nellie237.
Oh my goodness, it’s almost laughable, glad you have a sense of humour in these circumstances and know what’s what for yourself 🙂 .
You just reaffirmed what I suspected regards nhs dietary advice. Seems basic generalised advice, and not to say out of date in general and not based on scientific evidence.
The 5 a day was just made up ( it’s good general advice to promote real food eating which has got to be good but it’s not based on proven science).
Coeliacs and people with malabsorption of micronutrients need more healthy fat (as long as tolerated and to absorb vitamins fat soluble vitamins A, D, E, K. B vitamins including b12 - and thiamine B1 in particular for Thyroid, was recently reading how even minor deficiency of B1 can cause many symptoms related to energy metabolism and similar symptoms to b12 and folate deficiency.
I take magnesium supplement. I use to snack on pumpkin seeds and eat pumpkin seed butter instead of peanut butter (yum lol) but then read about seeds on the no list by Dr Gundry as have lectins and can interfere with absorption of minerals like iron calcium magnesium.
Interesting article about seeds,
gundrymd.com/seeds-bad-for-...
🤔
Great post. I’m not responding to a GF diet - 15 months on. My ataxia came back Monday, the gastro was a tad confused. Again, I sorted stuff out, increased my iron, B1, folate and back on vitamin E. Today, I’m walking fine - 3 days it took me to correct. Knowledge is power. 😊
Hi Narwhal10.
Glad you sorted stuff out. I do agree micronutrients and deficiency even minor in vitamins and minerals play a big roll in symptoms and health. As well as other food or environment sensitivities. Real high nutrient dense food is a good base.
Sorry you’re not responding to a gf diet. Do you avoid all the ‘gluten cross reactive foods’ too?
I agree knowledge is power 🙂 , it can tip the scale in health and disease in favour of health.
Hi Researchfan,Yes, I only eat fish/meat, basil, veg and strawberries/apple. I’m so strict - toiletries, kitchen equipment. My mum and step dad came over yesterday and had a cup of tea. Mum had brought a Twix (do you have those in the States ?). NOT IN MY HOUSE - she left it in her bag.
I reacted strongly to drinking the lactulose from a SIBO test - I couldn’t even do one breath. 😄
Oh dear! 🤭🙂 re twix, I don’t know maybe I think have in USA. I’m in UK. I miss biscuits.
You’re on a very restricted diet, it’s hard when you’re on a restricted diet. Did you get treated with antibiotics for sibo? Maybe it just takes more time to heal but have to persevere and try and get as much nutrition as can everyday.
Sounds like you’re following your version of the autoimmune protocol version of a paleo diet? I try to focus on this as well as low carb too (no nightshade veg like white potatoes if I can help it). Limited sugar.
I’ve watched a few YouTube videos (Dr Ken Berry and his wife she has autoimmune hashimotos); on the Carnivore diet, I find it fascinating. people seem to do well on an animal product only diet! No veg or fruit. That’s the ultimate elimination diet. And the amount they eat amazes me. Makes me question personally that I’m not eating enough day to day to get enough nutrition.
Meats and fish and natural fats are nutrient dense especially B vitamins and it’s true carbs are not essential while protein and fat is.
Well wishes to you.
Oops - sorry for thinking you were in the States. Thank you very much for the Dr Ken Berry and his wife and the well wishes. That’ll keep me amused for hours. Currently on herbal antibiotics- oregano oil, berberine and a wonderful tincture of wormwood and black pepper.
I am a bit of a carnivore......its not good for kidneys though.
I find it fascinating. 🙂
Thanks for the seeds link. I'm trying to avoid adding any more supplements until I can stop taking the iron pills, or at least reduce substantially. I did buy some magnesium taurate, but then read that taurate can build up in the kidneys, and thought no, that's not a good idea right now, so I'm still looking.
Somebody recently posted a link on the thyroid forum re the importance of B2 riboflavin for thyroid function. No wonder they recommend taking B Complex.
I'd wondered if the '5 a day' thing came about because there aren't any nutrients in our fruit and veg any more.
I understand re supplements, don’t want to end up rattling 😊 .Citrate versions supposed to be better absorbed, but I’m always weary of the other additives.
Interesting re b complex vits.
There is epidemiological evidence in support of 5 a day - correlation is not causation, but there have been interventional studies that support increased fruit and veg consumption in various contexts.
a bit off topic, but reference & discussion of a recent study is provided
rhyobrain.blogspot.com/2021...
Hi Rhyothemis.
Thanks. That’s really interesting.
I like the results/conclusion in Wang et al. (2021) meta analysis.
Quote,
“...Higher intakes of most subgroups of fruits and vegetables were associated with lower mortality, with the exception of starchy vegetables such as peas and corn. Intakes of fruit juices and potatoes were not associated with total and cause-specific mortality.
Conclusions:
Higher intakes of fruit and vegetables were associated with lower mortality; the risk reduction plateaued at ≈5 servings of fruit and vegetables per day. These findings support current dietary recommendations to increase intake of fruits and vegetables, but not fruit juices and potatoes.”
From ahajournals.org/doi/abs/10....
The research said risk reduction best with 3 veg and 2 fruit at most.
And interestingly, not peas, corn, fruit juice; or potatoes.
Corn is a grain not a veg and peas are legumes not a true veg maybe that’s why 😀 .
Maybe food labelling should state NOT part of five a day on peas and sweet corn 😯 .
If there was one bit of the NHS that cost savings could be made on - get rid of their dieticians. Harsh, yes, but genuinely I get where you are coming from here. I've had two utterly pointless appointments with NHS dieticians in past two years.The first one, when I told her that I get inflamation in joints from sugar and fruit was flummoxed as to what I should be having for desserts. I think desserts are the last thing on my mind, but it seemed to blow her's that someone could not have a dessert every day - I'm pretty sure dieticians should not be recommending sugar-filled desserts, full stop! From what I read in various forum threads online, few if any have had successful NHS dietician experiences. Their knowledge seems desperately limited. My friend at uni studied to be a dietician and it all seemed desperately intense and high-science, but what is sat in front of you in an NHS appointment is someone who seems to just read from script and have very limited knowledge on the finer issues of diet and nutritional issues. Someone needs to map out the coeliac journey so that the idiots who claim shock at how few people recover full health from coeliac will get the full picture. Millions pumped into research to find the holy-grail of why so many coeliacs fail to get better, and the obvious multiple elephants in the room are sat in front of them. If you are struggling, and can afford, go for a good functional medicine dietician, or seek out good YouTube videos - I'm bowled over by Dr Vikki Peterson at the moment.
I think NHS Dieticians bread and butter (sorry) is obese type 2 diabetes, hence the looking for a dessert solution. Am I being politically incorrect here, and I'm sorry if I've offended anybody.
I expected to discuss my diet and the dietician to make suggestions on areas where I might be deficient, but hey ho, targets met, doesn't matter how inefficient as long as you can tick the box.
Even for Type 2 diabetes, Diabetes UK encourage people to disregard the NHS advice as it pushes the notion of eating lots of starchy foods which are murder for insulin.
Nhs gp Dr unwin from Southport in the UK has done a lot re the low carb movement and healthy eating for the carbohydrate intolerant people inc diabetics.
Grains = sugar to the body just like sugar. The NISA endorsed sugar infographics he did were a great visual tool if wanting to cut back on sugar for health. Available on the UK Public Health Collaboration site.
Dietetics practice needs to catch up with what works for people’s health, backed by scientific evidence.
It’s not just dieticians though. The nhs institution needs overhauling for the better.
Agree. Diet, nutrition, gut health - all fundamentals to all health. I recently stumbled on Dr Unwin's carb information - he's ahead of his time with regards his profession.
I thought they'd stopped advising starchy food. Good grief.
That sounds about right coming from a dietician. There is a notable difference between a dietician and a nutritionist. A dietician basically does meal planning and knows relatively little about diet or nutrition. Thus, for nutritional needs it's best to see a nutritionist, not a dietician. But, that is the sense of it from the US.
Our well water is quite high in minerals, too. For drinking and for small appliances, I distill it.
A RIBBON FOR COELIAC DISEASE ... please!!!!!
Tests came back negative for coeliac, but....
Is your dietician helpful?
Coeliac Gene - help needed?
Coeliac/hypothyroidism.
