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PMRGCAuk
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Nutrician - Dietetics appointment

I thought I would share about what I thought was a very good appointment with a Dietician (UK hospital). This was booked 3 months ago by Gastroenterologist when he thought raised ESR and sudden, significant weight loss might have been caused by liver cancer. That proved not the case and PMR suggested by Gastro consultant.

I had been trying the Victor Longo Fast Mimicking diet for 5 days, (last week) basically very restricted calories, lots of vegetables, nuts etc. The dietician didn't think this was very good for someone with autoimmune conditions.

She said she thought people with chronic inflammation needed 40% more Protein and calories, especially when having a flare. She recommended eating 5-6 times a day: Breakfast, snack mid morning, lunch, snack mid afternoon, evening meal, and a snack at about 9 pm. She gave me a hierarchy of the sort of foods that are good: Red meat, (vegetable protein, such as beans, pulses, wheat germ, Potato, pasta, rice - not so good as meat and fish I think she said ) oily fish, then chicken, white fish and turkey. Then milk, cheese, eggs and yoghurts.

Snacks included nuts, seeds, avocado, eggs, a slice of toast, cheese and crackers, high protein rice crackers, banana, mousse (but make sure not high in sugar).

She said that Vitamin C helps with anti inflammation, absorption of iron but recommended that I asked the Rheumatologist before starting a supplement.

She seemed very knowledgeable having done her PhD in some area of inflammation. She also gave me information as to why I don't ever feel hungry (since having a TIA and PMR last September, although I think PMR was developing over the previous year or so before) Ghrenlin and Leptin worth Googling if you are interested)

She has asked GP to test re folic acid, B12 and iron. I thought that with all the blood I have had taken (have a got much left!?) those would have been looked for, but apparently not.

Sorry rambled on but in case of interest to anyone.

Bridget

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Your post is very interesting, thank you Bridget1001. I can tell you as a trained nurse that a registered hospital Dietician is worth their weight in gold. I have seen some of my friends blindly following instructions from a "Nutritionist" (who is qualified by anybody/nobody setting themselves up as teachers,) paying ££££'s for consultations and taking who knows what in ££££'s worth of supplements, and benefiting not at all. They end up looking like starvelings, often ending up with other health breakdowns, cutting almost everything of good nutritional value out of their diet.

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That is good to know. I thought she was excellent

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I have somehow set myself up as two different people. I am really Bridget1001. Can anyone advise as to how I can take Dumelama off Healthunlocked?

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Oh good. I thought it was me. Not sure if Dumelama can just resign from the site and have her details deleted. But would she take you with her? Somebody will know. Have a poke about in settings.

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Hi Bridget. You need to log in as Dumelama. Then click on your photo in the top right corner of the screen. You should get a drop-down menu. Go to Settings. Right at the very bottom you get the option to delete the account.

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Thanks Kate, I think that has worked.

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Yes Bridget, very interesting and close to my own regime. I always feel for others when advised, for instance, to cut out carbs etc. What do they eat? I eat a varied diet and eat what I fancy which helps when I only have myself to please) IN MODERATION. I like crusty bread, potatoes, pasta etc, I don't like meat, but have salmon, cod etc at least once a week. My weight never seems to vary, in fact I don't possess any scales. I feel well now after having been there, done that, on my PMR journey, and going down to 4mg Pred next week and live in hope that I don't get any flares. I know everybody isn't the same but it is worth bearing in mind, as they say, a bit of what you fancy does you good in moderation. Good luck. 🍞🍌🍐🧀

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" to cut out carbs etc. What do they eat?"

Quite a lot actually! Or at least, I do. But the carbs bit is ONLY in relation to pred IF you put on weight/have pred-induced diabetes problems. If you don't have either of those, eat your carbs. But we don't say NO carbs - we say cut your carbs drastically, especially processed carbs.

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Thanks PMRpro, I've just been warned that I am pre-diabetic, and the advice seems to be to go on a Mediterranean diet, 800 calories a day for about 8 weeks to lose some weight. I already lost about 5 kg through being in hospital, so I suppose I will at least have to cut carbs drastically as you recommend. I hope that does the trick and gets me off the hook!

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Operative word here is “processed” (carbs).

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I suspect it depends on the type of inflammation - and even more the medication. If someone on corticosteroids ate 40% more calories including large amounts of carbohydrate they would balloon and head rapidly for pred-induced diabetes. 40% more calories with plenty of protein and fat is another matter though.

And if I ate 5 or 6 times a day - I'd be sick. I eat meals and no snacks, never have done. I have had experiences of hospital dieticians - and I didn't find her worth her weight in gold I'm afraid. The multiple meals a day theory has been discredited. And why any dietician would tell a diabetic patient they MUST eat umpteen slices of bread is entirely beyond me - and they did.

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Thank you PRMPRO. As I said not everybody is the same but as food and my Saturday evening Choc treat are my only pleasures I have to have something I like. In fact, as last week was Italian week at Lidl I have just thoroughly enjoyed an Italian Pizza Arrabbiata which I bought. Perhaps as well as due to our weather not been able to get out to do my weekly shop. ⛄️💨

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"I'd kill for a pizza." Oh, sorry , did I say that out loud? : )

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Now you see, while I don't eat much in the way of carbs, I don't rule out a trip to the middle of the village for a pazza once every couple of months or so!

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Good on you! I'm struggling with wicked "roid gut," so NO PIZZA ALOWED! yet...

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Can you eat zucchini? Last week I made a pizza with a shredded zucchini crust (I was skeptical that it would work, but it did - beautifully!) Added toppings i can handle- it was excellent. (You could google the recipe, or I'll send it to you if interested.) Hope this might help :)

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Sounds wonderful, will Google that. Thanks

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OH! Yes please can yu shoot it to me in a Chat?

Thanks

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I'd love the recipe too

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😂🤣😂🤣yu

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Yup is the word I tried to type 😑

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I agree PMRpro. I have gone on a low carb diet and have not put any weight on but have now come off my diabetic medication. I know if I had followed that diet recommended by the dietician I would not have been able to do this and would have put a lot of weight on.

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Yes, as has been said, all in moderation, but depends on appetite etc, I guess. Maybe I am lucky not having any appetite since TIA, so not craving for Pizza or chocolate

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I’ve done both and with all high protein especially meat, fish & chicken & low carb diet you have to eat 6 X a day for energy. When I went Plant Based & whole grain carbs they sustain you from one meal to the next. Now I can do 3 meals a day, or even two.

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Thanks for posting Bridget. It sounds like you got pretty comprehensive advice there. I am glad for you that it wasn’t liver cancer. Life is full of frights these days.

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Yes, relieved not to have liver cancer, (though GP says liver results from last blood test still not right, but we agreed I should enjoy my holiday in Tenerife (since the last one in the States, last Sept was spoilt because of TIA and start of PMR. I had worked 2 years extra to pay for these two holidays so I am sure going to enjoy this one, come hell or high water!) so Spanish red wine will be on the cards! Recent posting about Sauvignon Cabinet and Merlot resonate) Haven't yet managed to delete Dumelama, but will work on it!

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Have a lovely time Bridget. You have earned it, Eat little and often, you need your strength. We are all different.

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Many thanks, the warmth is lovely.

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Bridget I too had a TIA last April and was diagnosed with PMR in the September of last year. Were you experiencing PMR symptoms prior to your TIA?

I had severe hip painand stiffness, then a really stiff painful neck, then the TIA happened. All this led me to push my docs to see why I had the hip and neck pain and stiffness.

Finally saw a rheumi in Sept 2017 and got my diagnosis.

Thank you for sharing you nutrition visit. Very interesting in regard to 40% protein. I suppose this is for muscle support?

How are you doing with her recommendations of eating that often as I see you say you aren't hungry. I too have no appetite what so ever. My husband cooks and leaves me leftovers or I would struggle to eat.

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HiSunnyD7. I had various episodes in the previous year, which I had assumed were migraines, and found I was popping pain killers for headaches, which I wonder if was the precursor to PMR, interesting you say no appetite, isnt it a weird feeling. The dietician said I must try and train my brain to want more food. I have eaten small portions for a while (trying to lose weight, ha ha) but am managing, nuts, or other things as snacks. Yes the protein is for muscle build up. She said that, typically you lose muscle on thighs and upper arm, which I dont seem to have done.

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Well good luck. My mother was a yo yo dieter (on again-off again on diets) Her weight would go up and down. So as a kid I was receiving many mixed messages about food.

Then if you try the internet for guidance, well, you know how confusing that is.

So about 5 years ago I decided I would only eat if my body said I was hungry (with the exception of stress eating, then it didnt matter I was eating comfort food) and eat good healthy foods.

I have always had an appetite until recently. I cannot remember the last time my stomach growled in hunger. Its not helping me on the weight loss side. I seem to be hovering at the same weight, which is 50 pounds to heavy.

In the last 5 years I have developed gluten sensitivity, many many food preservative sensitivities. My food sources have become very limited.

I have an order from my doctor to see a dietitian, given your post I am going to see him/her and see what they say.

Thank you again for your comments. I appreciate it. Have a wonderful day!

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Oh the comments of not having any appetite. I so wish that were true for me as I crave food due to the prednisone. I'm glad for the reminder about laying off the carbs and refined foods. It does help. Night time is always the worst, ugh.

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I too get the night time munchies not matter what I've eaten during the day

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