Hi all
So my husband eats very well a lot of food but doesn't gain weight with scleroderma his weight has always been the same but now seems to be decreasing more any one else going through the same or any suggestions on what will help???
Thanks guys x
KC if you could give some info on exactly what he is eating I may have some suggestions, however if his weight loss is rapid, he really needs this addressed by the GP & tests carried out to rule out any underlying problems. Tracey x
Hey so he would have maybe a cereal for breakfast omelette for lunch a snack fruit dinner would be rice and spinach with chicken and then probably another small meal after.
Dear KC, my daughter has scleroderma. She was underweight because of her condition. We were worried. On this forum I got the best advice for special diet for autoimmune conditions - it is called AIP - autoimmune protocol. Please recearch before you start buying full fat milk, beans and peanut butter. Since we started half a year ago, my daughter put on nearly 2 kg. Best wishes for you and your husband
This diet is very restricted & whilst there is SOME proof it helps (namely patient feedback) there is no guarantee it will have any affect. It recommends that NSAIDS should not be taken for pain. It is however very good for SOME patients that struggle with symptom control. It is based on the fact that a person has gut problems. If this is the case with your husband than by all means look at it. It is not supposed to be used for the long term & includes addressing problems such as stress & sleeping patterns. It is a HOLISTIC approach & not fully proven, so eliminating food groups from a diet could also cause problems. There has not been large scale clinical studies to prove it works or in fact if it's necessary. I suggest a trip to the Drs, if your husband is having problems that indicate gastric problems as his weight loss may be causing poor absorption of nutrients than it might be for him. The facts on the AIPD are 1, it is not proven, 2, highly restricted & 3, if he is not experiencing intolerance symptoms after eating certain foods, he doesn't need to restrict any food groups. What's good for 1 patient is not necessarily good for another. All drastic diet changes need research, it's no different for this 1. I would be inclined to seek advice off health care professionals. As a face to face to see what he symptoms he is experiencing with his Scleroderma is not possible by me, seek advice before embarking on this. Have a look on The Scleroderma Foundation website Eating Well with Scleroderma.
Thanks for all your comments we are at a point on of desperation atm so will try anything. We have a appointment but not until Dec can't get one sooner. I know they know Best But from what my husband says they seem to know nothing. I hope they have some answers but what works for one patient may not for another so we just have to try anything we can. Instead of removing foods from his diet I will just try to add these foods u have mentioned. And improve sleep patterns and exercise will try my best to help him thanks for all your help guys xxx
Would suggest small meals frequently, but may need to see a dietician and have liquid supplements.
I am a dietitian. I would suggest fortifying his food with say, full fat milk, cream etc. There is products on the market that can also be added to food eg Ensure powder. Beef, eggs, beans, potatoes, wholegrain rice, butter, peanut butter, are all good sources of extra calories. Grazing through the day frequently will also help. If I can help at all, get back to me x
You usually get it from any good chemist, but the Dr can prescribe it. Ensure also do fortified milk shakes & juice, but in all honesty, on their own they are hard to take! I used to make scrambled eggs/omelettes with the vanilla & natural varieties, mixed with the eggs, can't tell the difference!! Custards, rice pudding etc can all be made with them. x
Couple of pounds a week probably. But get him checked by the Dr, could be Thyroid problems or a variety of other things. If I can help with anything, let me know x
No worries, anytime. x
Hey tracydc do u know any site I can get some kind of guide on meal plans I don't want to just make it up as I go along. Just want to be sure that I am doing the right thing and it's a healthy balanced diet xxx
Hi Kc, is hubby otherwise able to tolerate all forms of food? Especially dairy & bread? I'm just making sure he hasn't got difficulties with certain foods & no food upsets his stomach? x
No he's fine Hun with all foods x
From what you have said he seems to have a good diet, so it's a matter of adding some things like full fat cheese, full fat milk, cream etc. He could for example have a mushroom sauce made with milk & cream over his chicken. Cheese sauce over his broccoli, cauliflower, add butter to baked potato, mash with butter, things like that. As mentioned, snack on nuts, even dark chocolate is allowed!!! (above 70% cocoa) I don't endorse processed foods or what are deemed as junk food or foods high in sugar (I'm sure you are aware of this already!!). Ensure supplements are very good, as are Fortisip. They can be added to soups, custards, jellies, eggs, practically any sauces. Add sweetness through honey, good quality 1 (cheap 1s are basically coloured sugar, no nutritional value) Avocado is an excellent source of 'healthy' calories as is oily fish, bananas. Fortify soups with cream. Little & often is key, rather than overloading the body in 1 go, graze on 5 or more smaller meals. You could for instance make a rice pudding, using full fat milk & cream & add cinnamon or honey for sweetener. Porridge is an excellent cereal, again make with full milk & add fore mentioned suggested sweeteners. He needs to keep eating his fruit & veg obviously, but by adding sauce or similar, which are fortified he will be increasing his calorie intake. There are many websites that give advice on fortified diets (don't be put off if they say for elderly malnutrition, the principles the same) he may need a little more than they recommend for these patients depending on age/activity levels. I hope this helps a bit, did you manage to look at the Scleroderma website? They have quite a lot of info about every aspect on there. xx
Thanks for all ur advice I haven't had a chance to have a look at the website do u have. A link sorry to keep bugging u x
I am having trouble sending links, I tried for you before! Put in the Scleroderma Association & if you look on SRUK they have suggestions I have mentioned. There are a number of sites that will give advice. The ideal is to fortify the foods he enjoys & are familiar (trying to get a man to change what their used to is near impossible, mine is anyway!!!!!!) Look for fortified diets, there are a lot! xxx
I would look into cbd oil. I make my own. I am under weight and it helps with inflammation, pain, nausea and increases my appetite a little too. Try more smoothies or shakes with protein powder and supplement meals with that. So your getter my nutrition all day. Nuts and protein help too. Have a good day.
Hi Littleleni,
How do use the cbd oil?
I bought a small bottle - cost £22 expensive stuff!
Thanks
Naila
I grow my own and make my own, using organic coconut oil. Sometimes I take 10 or so drops internally and much of the time I rub it on the muscles and spine areas I get pain. I am in California.
Thanks I will try adding to coconut oil.
It's a No No to grow in the U.K.
Naila
Darn!
Last day of PR today, assessment day. Amongst other things I was weighed on one of those fancy weighing machines. It said I have 13% fat which is OK and my muscle mass is also OK. So although I am nearly underweight I seem otherwise OK and will just make sure I have a decent diet plus exercise. It may be worth your while getting yourself checked on one of these machines.
Hey guys just wanted to keep u updated I have ordered all recommended products just waiting on delivery. Husband is sorting out his routine which I am so happy about getting into a good sleep pattern and eating well and on time. He seems a lot more positive and motivated
Thanks again guys hope u are all well x
Kc, that's lovely to hear!. Have thought about you. Keep us updated, glad he's feeling better x
Hey all just wanted to say a big thank u for all your advice my husband is really trying hard with his routine has now added the shakes which seem to be doing him well. Fingers crossed this is a permanent life change xxx
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