Ive been trying to follow the Autoimmune Protocol diet by Dr Amy Myers as she believes that many autoimmune conditions can be helped or reversed early on by fixing a 'leaky gut' by following her diet plan. Its very restrictive and im struggling to follow it as i also have severe m.e. The trouble is, im now beginning to feel like im causing my own illness because i cant follow the diet. Every time i eat something that isnt on the diet sheet, i feel like im making myself more ill and the stress isnt helping!
Has anyone had any success with this diet or is it nonsense?
Im starting to get a bit depressed because i dont know where to start with so many symptoms and my dr's just dont seem to 'get it'.
Kate x
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Kate16
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Most of these diet theories are aimed at one thing; to make money for the person who dreamed them up. There are rarely any properly documented clinical trials to back them up and even when they claim there is, it is more what is called anecdotal evidence.
In the US in particular these special diets do often result in a massive change for the better in what the person is eating (no junk food for example) and they DO feel better. But when they are very restrictive then you run a serious risk of missing out on essential nutrients.
You are getting into a vicious circle - you aren't well, you can't stick to the diet, that makes you associate the being unwell with "failing" with the diet. Just eat a good diet - as little processed food as possible, maybe keep the wheat content (bread and cakes, pasta) down a bit, and lots of fresh foods. Wheat is associated with the leaky gut theory - but even that is very disputed.
Throw the diet sheet away - and eat sensibly and see if you feel less stressed, because stress alone can make you feel significantly worse.
Thanks. Ive always had a reasonably good diet - vegetarian type with fish and chicken added but def eat too much bread. Stopping eating egg and dairy has helped with stomach problems but to further cut out all pulses, grains and nightshade veg, as this diet suggests, is leaving me with hardly any foods to choose from.
I think i will ease up for a while as the stress is making my symptoms worse.
ME relapse - or just lack of food???? As I say, omitting whole food groups is really sometimes quite risky and while stopping dairy often helps if someone has allergy problems or is lactose intolerant (many adults are), to stop so many groups at the same time clouds the view rather. I don't know a lot about the Myers diet but it sounds as if your protein intake is possibly quite low - unless you have increased your fish and poultry intake but if you are tending more to the veggie end then taking out pulses is bound to make a difference. And that isn't good for you.
I do know what you mean though - I look at some of the diets others are using and think, well if I left that out I wouldn't have a very exciting diet! I tried all those things at some point though, to be fair, not all at once, and it really did make eating a chore.
However - it has just occurred to me that someone I know on another forum says she's on "an autoimmune diet" (not sure of the details) and says she and her husband felt very much better very quickly. She has an autoimmune disorder of some sort, he doesn't. The fact she felt better so quickly suggests to me that you feeling worse is an indicator you aren't benefiting in the same way. It DOES make a difference what your previous diet was, and yours sounds to have been quite good. Why not try eating lactose-free dairy for a short time and see if the stomach problems stay away - I don't know how easy it is where you live. Here in the mountains of Italy there is a wide selection because lactose intolerance is very common here. That would return some protein to your diet.
Anyway - I do hope you feel better soon. Above all, though, do try to reduce the stress - because it probably causes more trouble with ME than your diet.
I have an intolerance to the milk protein so dairy just doesnt agree and eggs make me very nauseous. Annoying as i like both.
I live in Scotland so i can source good quality foods fairly easily. How lovely to live in the mountains of Italy! My daughter is going to Italy (Florence) next week on a school trip.
I think what you say about not feeling an instant relief after cutting out grain is a good point. When i stopped the dairy and egg i felt instant relief. Maybe grain just isnt an issue for me but im making it one!
I used to live in Scotland, in the Dundee area. My brother is still there, my daughter and grandchildren live outside Edinburgh. Here is very like Scotland, just nearly a 1000m higher!
My cousin announced when he was visiting recently that he is intolerant of the casein in cheese - which immediately stopped the next night's dinner: raclette!
As far as grains are concerned, why not try omitting wheat as a start - even the NHS site says that many people cannot tolerate modern hard wheat, the stuff used for UK bread, pasta and so on, but are able to eat spelt and even French bread which is made with Canadian soft wheat. I had symptoms years ago which the local coeliac specialist said he thought were probably due to "leaky gut" but I could manage them by omitting wheat so his advice was not to worry if that was the case and carry on the same way. The gluten-free pastas are pretty good - just don't cook them as long as it suggest or they turn to something more akin glue! I'm lucky here - we get loads of breads and pastas made with spelt and kamut, another ancient wheat variety and I'm fine with both.
Most of the points made match my experience....here is my story:
12 years ago, I went on a reputable version of a strict anti inflammation diet @ 50. At the time I was in desperate shape due to infant onset lupus going unrecognised...the diet's benefits took some time to be felt....and meanwhile I was also put on heavy duty daily meds (high dose oesomeprazole + domperidone) for chronic upper GI conditions which I'd been lifestyle managing fairly successfully for years.
Anyway, I wondered whether it was the diet or the meds which helped me v slowly & gradually to settle that GI flare down....whatever, the chronic GI symptoms did settle enough to give me back a degree of life...so I continued on both the lifestyle management + the diet + the upper GI meds for 6 years.
Then I learned about the upper GI meds' side effects, so came off them....but stuck to the lifestyle stuff + diet: 12 years on I now can totally rely on these....and I've proven they actually help me more than upper GI meds can now: because those 6 years on the upper GI meds did help my chronic upper GI conditions, but they b******* up my rate of loss of bone density & my chronic lower GI conditions.
However, when I finally started on daily lupus meds, my health immediately began to improve generally...and 5 years on I'm feeling better than I have since my 20s...but I still have proven by trial & error that I need to keep up the lifestyle stuff + my tailored version of an antiinflammation flippin diet...when I let the diet slip (as I did last summer for a few months) I get in HOT WATER: my chronic lower GI conditions flare big time
So, in my case, over many years of experimentation, the proof has been in the pudding: an individually tailored antiinflammation diet works, but only in conjunction with the right lifestyle management & prescription meds....maybe I benefit as much as I do cause I'm elderly....whatever: my version of antiinflammation diet plays an important part in the overall management of my version of immune dysfunction & connective tissue disorder....and with each passing year, I continue to listen to my aging bod & adjust my diet to suit its whims & fancies...never a dull moment 😜
Generalising about diet is kind of silly...we're all too different...but we can start trialing a diet, while logging our reactions...gradually we figure out what works best for our bods
The only diet that is advised for people with lupus is one that is healthy and balanced. There is no 'wonder diet' that is going to reverse or cure everybody of lupus but you may find that there are some foods that trigger symptoms in you and are good to avoid. We have a booklet about lupus and healthy eating which you can download at lupusuk.org.uk/wp-content/u...
For more information about the 'leaky-gut' theory and what evidence there is (and isn't) to support it, please have a look at this article on the NHS website here - nhs.uk/conditions/leaky-gut...
Life is just too short for this!! Lupus restricts our lives so much why add to the misery, going out for a nice meal with a glass (or three) of wine makes me feel GOOD 😀
I suppose im wondering if a 'leaky gut' can be responsible amongst other things for the triggering of autoimmune disease or whether its all nonsense and its just down to luck.
living with severe m.e means i cant drink alcohol or leave the house so being diagnosed with a connective tissue disorder on top of this prompted me to try to delve further to try to see if diet would help matters at all.
Thanks for taking the time to reply.
Kate
Ps PMRpro, i lived in Edinburgh for many years and loved it. In Perthshire nowadays : )
Have a look at the NHS link I sent you. It states;
"[Leaky-gut theorists] believe that undigested food particles, bacterial toxins and germs can pass through the "leaky" gut wall and into the bloodstream, triggering the immune system and causing persistent inflammation throughout the body. This, they say, is linked to a much wider range of health problems, including: food allergies, migraine, tiredness and chronic fatigue syndrome, asthma, lupus, rheumatoid arthritis and multiple sclerosis (MS), skin conditions such as scleroderma and eczema, autism.
However, there is currently little evidence to suggest these conditions are in fact caused by having a "leaky" gut."
I personally find the studies I have read on leaky gut and genetic variations to be more than enough convincing, though more research is needed before it can be considered "true" and practiced by professionals.
I live in the U.S. and have been living with Lupus for many years. I recently saw a nutritionist who pretty much just deals with "western" and not eastern nutrition education so I couldn't get that much info on different herbs etc. But since I recently have gone gluten free ( past 4 months ) she could definitely help with that. I asked her about leaky gut and her opinion as to whether it was legitimate and she said YES to my surprise! She said for the past 10 years or so it is pretty much considered a REAL health issue. My thinking is that even tho it might not CAUSE all autoimmune disease it very well could AGGRAVATE it and lead to other food allergies. I am allergic to soy, dairy, peanuts, and citrus, and over the next year will figure out if I have a gluten sensitivity as well. Most Dr.s do not know a lot about leaky gut but good nutritionists and Chiropractors and Naturalpaths here in the States do. When trying to go gluten free you have to have a plan ahead and have to substitute other grains like sorghum, rice, millet, quinoa etc instead and learn how to cook with them or know where to purchase them. And I advise not to eliminate night shade veggies at the same time. I still eat those since otherwise I would be to limited and I don't think they bother me since they don't have anything to do with leaky gut. I hope this info may be of some help.😊
Hi,I have read plenty to suggest that diet is important and that leaky gut certainly is certainly worth considering.
It seems to me that the Mediterranean diet (with loads of high quality olive oil) is well researched as are the effects of UPF (ultra processed foods). Gluten free makes sense also but don't just go for the free from isle UPFs! There is plenty of real gf food and this will naturally be low carb.
Also Dr David Unwin and others present widely on low carb diets with good effect on AI issues.
Imo metabolic health is a real issue.
As above, Don't stress yourself by doing too much at one time and do make sure you are getting enough protein.
I also think that the A2 milk story has merit and personally stick to goats and sheep dairy products.
Ben Bickman has some good presentations on metabolic health and I am about to read a book called "drop acid"
Don't overlook vitD, vit B12, omega 3, magnesium,etc. in your research.
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Veins and Lupus?
I've had enough of this stupid diet!!!
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