Anyone tried this

[Rosebaywillowherb]

Morning peeps, hope your all as good as can be today.I have a question for you, I have a dear friend who thinks I should try the clean gut programme,she says it cures all ills, even RD.I said it's ok telling us what to do, you don't have this god awful thing,but she says it's worth a try,looking it up, the first person I see is that bloody annoying Gwyneth Paltrow,so that gets my back up straight away,anyway what I'd like to know ,has anyone tried it, did it help, was it hard to follow,did it make any difference,look foreward to your replies.x

[Lawhear18]

I would talk to my doctor first. I am going to be talking to mine about the same thing. There is a medical condition called leaky gut. I wanted to discuss this with my doctor, as some of the symptoms are extreme fatigue, especially after you eat anything, problems with memory, mood swings, etc. I can't remember them all. I'm hoping there is a test to check if this is what I have. Oh yeah one other symptoms is daily headaches, sometimes accompanied by nausea. That's a big symptom I have. I get a headache every day.

[Lawhear18]

Have you been tested, or know anybody that has been diagnosed with this condition, and was there treatment that actually helped them? My main symptom is chronic fatigue. Sometimes I can only stay awake a few hours at a time, and that's after I've slept 10 hours the night before. I often have to cancel obligations, because I have fallen asleep sitting up on my couch, gathering the things I need to take with me. I hate when this happens. One minute I'm getting ready to leave, and the next thing I know is its 3 hours later and I don't know why it happened. I am always late. I can never be on time for anything if my life depended on it. Besides falling asleep unexpectedly, I can lose track of like 2 or 3 hours doing something I thought just took me a few minutes. It's really kind of scary.

[earthwitch in reply to Lawhear18]

Coeliac disease did all that to me until I finally got it diagnosed. Coeliac can cause malabsorption problems, but when it got as bad as it did with me before diagnosis, it was also causing leaky gut symptoms.

[smithfield in reply to earthwitch]

I agree Earthwitch, before I was diagnosed with Coeliac 's and got into the diet, the sofa I was sitting on could of caught fire and I would of not had the energy to move.

[helixhelix]

There are a few reports of people doing extremely well on these diets - I wasn't one of them but there's nothing to say that you couldn't be one of the lucky ones. I also found it very restrictive. So now I just eat a simple balanced diet which I find suits me well and has made a difference in my ability to tolerate the drugs and reach remission.

The scientific community of researchers and doctors do believe that there is something in all these ideas - generally referred to as microbiome as well as leaky gut - that will provide effective treatments. But they don't think it's as simple as following a diet (except for those few where it can work). I wrote a post on this that you can look up - but it is a bit long and boring!

So if you're motivated then give it a go. The greatest success seems to be those who try diet alongside the drugs, and then slowly try to reduce drugs.

However, I also believe there are priorities in trying to control this disease. So first off, if you smoke then stop. If you are overweight then really, really try hard to tackle this. And if you take no exercise then please start some - no matter how simple. And try to reduce stress in your life too (not easy, but...). But if you smoke, are overweight, stressed and take no exercise then I feel that following these diets may not be the biggest priority.

[Rosebaywillowherb in reply to helixhelix]

Hi, Helixhelix,thanks for replying.I have never smoked, am vegetarian,and I weigh about 7 stone,the one thing worrying me is weight loss, I cannot afford to lose any weight,and despite being on steroids, they have not increased my appetite, but the book says you will put on weight on the regime, also quite a lot of food prep is required,hard when you can barely lift a pan, or chop veggies.Am only looking into this at the moment,as have tried lots of alternative remedies,only to resort back to meds to relieve pain.x

[Karen77 in reply to Rosebaywillowherb]

Sometimes you are underweight due to malabsorption of nutrients so if you focus on nutrient density, you may find yourself maintaining a healthy weight. Some coeliacs are super slim for that reason, others are bloated/overweight also for the same reason - their bodies just react differently.

Also, for food prep, a food processor can be your best friend. Or focus on food items that don't require a lot of effort like spinach (doesn't need to be cut, can be eaten raw or cooked). Look to make things easier, not harder on yourself.

Finally, we're each super unique. I know Kai's recommendations are focused on a plant-based diet. I was a vegetarian for much of my life, including when diagnosed with RA. Sometimes I wonder if that was a trigger as I read of many former vegetarians/vegans with autoimmune conditions. In 2013, I dropped grains and added meat back into my diet and felt so much better for it. I'm not walking around with a hunk of meat in my hands, but it does make up part of my diet. If you want to be scientific about portions and nutrient density, the Perfect Health Diet is also a good source.

Good luck to you!

[Ruby_sommer in reply to Rosebaywillowherb]

Rubby_sommer

I also am a veggie,weighing in at 6 stone,struggling to keep that.i used to be 7 -8 st.i am 68 yrs, old so this extreme weight loss is very aging.gone are the days when I can wear sleeveless tops,I really am a bag of skin and bone.my rheumy shows absolute no concern.this weight loss started nearly three years ago,so I think this is when r,a.was starting.i put it down to age and ,fussy eating,nine months ago things really went wrong,g,p, rheumy appts.i,m still not stable,currently 10 weeks in self injecting 15mg,methortrexate plus 7.5 oral steroids. I,ve had many steroid injections over this time,can,t put an ounce on.i am functioning so much better at moment,putting this down to steroids.they work well for me.had a problem convincing consultant this was only relief that worked for me.

Now I,m paranoid about my hair,it,s all I,ve got left.i seem to be losing more than usual.

Family think I,m nuts,if I can move I should be happy.it,s not their hair in danger.i really can,t win!

My worry is if I,m functioning have I got to put up with hair shedding.Do I have options.

I do take 5mg, folic acid 6days a week.

Am I being ungrateful? Rheumy just shrugs when I voice concerns.all I get is Don,t know.doesn,t give any options,advice,

Frustrated.......😔😔😔

[woodstar1]

Hi, I've not tried this yet but have been taking a high strength probiotic supplement and it's definitely doing me no harm whatsoever. I follow Arthritis NRF on Twitter and they are doing lots and lots of research into this, they just but this out individualizedmedicineblog....

Hope the link works, its interesting reading and if it gives us some hope that's all good!!

[Rosebaywillowherb]

Hello Kai, are you on the cleansing?hows it going?as to the V word, it would seem quite useful,as the regime seems to be based on fruit, nuts,vedge etc , so no hardship on the meat aspect, but will be interested to know your views.

[medway-lady]

I have Celiac done the test camera down the throat etc. It has made no difference at all and its not difficult to stop eating gluten but I'd kill for a donut or a sandwich made with supermarket soft white bread!. So if you want give anything a try but why subject yourself to an idea from someone who may have read this or that but actually is really saying that an autoimmune disease is cured by diet. If that were the case the NHS would have saved millions by now by stopping all the money spent on medications used to treat it. But it is worth noting that wheat may be an inflammatory substance. I don't know but it might also be that their is a" if you believe it works then it just might" factor involved.

[Jacki08 in reply to medway-lady]

Love that comment medway lady ☺

[Mall]

Hi Rosebay, we all look for cures, especially in the early days of rheumatoid disease. There are many factors and possible causes involved and tweaking diet may help in some cases. I have had sero positive erosive RA for for a long time and tried many a diet for lengthy periods. I have paid for tests for various intolerances and forked out quite a bit of money and spent a lot of time researching into this disease and possible cures. At the end of the day it is the modern drug therapies that have helped maintain remission of my disease. I do however eat healthily and maintain a healthy lifestyle and routine of gentle excercises, there is no doubt that this is beneficial.

If you decide to try one of the diets you must ensure that you do it properly and eat plenty to sustain yourself healthily. It is concerning that you are considerably underweight and have expressed concern about being able to spend time preparing food. Some people have become seriously ill trying to follow some of these programs but this is always glossed over by supporters of them. Whatever you decide to do my advice is to discuss with your GP continue having your health and weight carefully monitored. One post suggested having coeliac disease checked out. I think that could be a good starting point given your similarities of symptoms and do this before you go on a diet that excludes wheat because this will give negative test results for the disease.

[Rosebaywillowherb]

Thanks Mall, and everyone else who replied to my post.I think the cleansing diet sounds interesting, but as I say, my weight is an issue,I have seen a nutritionist,I am not anorexic,just the disease has affected my weight, I see some others here have also experienced this,so until I can put a bit on, as they say,I will continue with my eating plan for weight gain,I know it sounds ridiculous, but trying to gain is more difficult than losing weight,I hate being this thin,I'm normally about 9 stone,so trying hard to improve things. I hope you all have a good day, at least the sun has made an appearance here in Kent after a week! X

[Karen77]

I totally agree. Try the autoimmune protocol (Book = The Paleo Approach by Sarah Ballantyne). The theory is that all autoimmune disease originates in the gut & so you need to heal your gut - avoid gut irritants and pack in the nutrition. The more nutrient-dense the foods you eat, the more likely you will absorb some of them. For info, try: thepaleomom.com, autoimmune-paleo.com and phoenixhelix.com.

I'm in a bit of a long term funk (self-medicating with sugar for two years under high stress conditions) so I'm definitely off the AIP wagon, but it was the best I had felt in my entire life when I was on it. I am starting again, especially since my liver is not allowing me to (perhaps wisely) take any of the DMARDs my rheumy wants me to take.

In any case, I think a diet that focuses on REAL, whole nutrient-dense foods cannot harm you (I hope we can all agree a cookie has less nutrition than a grapefruit!), and a lot of the times there is little control with RA (you can't train for a marathon when it hurts to roll over in bed!). What you put in your mouth is something you can control and I like to have something I can control and feel good about - and usually you start to feel better within days. What's to lose? Definitely plan well before you start. They say if you fail to plan, you are planning to fail, and I agree! Take a look at what the diet entails - focus on what you're allowed to have and make sure you plan ahead what you will eat each day and stock your fridge and pantry. If it makes you feel better to have some "treats", then make a few in advance and keep them on hand. Don't worry about having only 1-2 fruit per day, etc. In the first week, eat whatever food items are "allowed" in whatever quantities your body demands until you get used to eating this way. Then you'll be able to listen to your body and only eat when you're hungry.

Also, don't beat yourself up if you eat something on the "no" list. So you got a flat tire. The other three are in great shape. Fix the flat and get back on the road! Best of luck to you!

[andyswarbs]

Spot on @Kai--. I am a couple of months or so into the Paddison program and I have my tough days, some of which are very tough. But here I am on a good day. No inflammation, no pain, no drugs (apart from my MTX). Let me just repeat that, no inflammation, no pain, no drugs. My fingers remain stiff, but hey, no inflammation, no pain, no drugs.

[sandybrown]

When I was small in Sri Lanka, we used to Q up on a Sunday morning every three months for gut cleaning medication in the mooring, no breakfast no lunch liquid only, light food in the evening. Those were the days. some children did not like it but the parents always wanted the children to get clean gut!

I have not looked for this medication in UK.

[nomoreheels in reply to sandybrown]

I wonder what the prevalence of RD or other autoimmune diseases are in Sri Lanka???? I'll have a rootle around later this evening see if I can find out.