This relates back to my first thread wherein I asked about my serious flare and mentioned in passing about work done to redo my gut biome in 2019 after my PMR diagnosis.
I'm newly back from the GP appointment where I expected to hear that my gut biome had gone out of balance again and that might be one of the factors in my flare. Instead I found out the initial rebalance was successful and I was given a clean bill of gut species. The rebalance worked. But...
There is another set of species I am low in which seem to relate to protecting the lining of the gut which helps prevent Leaky Gut. So I'm off again on a new adventure with a slightly different protocol. 😜
Does anyone here have experience or references on Leaky Gut? I'm just starting to look online and we seem to be back in the "not a recognized medical condition" territory. I've had the same thing with multiple chemical sensitivity. *sigh*
I'll post this and then go and collect up some information on the protocol and diet I went on, and the bioscreen lab in Melbourne Australia. I may take a little while because I'm still not at my best.
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And sure as eggs is eggs, some relevant previous posts appeared over on the right side as soon as a posted. I suppose I should have checked the wonderful FAQ system too...
Here is a link to Bioscreen Australia and their FMA testing
They seem to be a bit unusual as far as results go. Unlike most things I don't get a copy of my results automatically. That's why I'm unsure about just what "bad" species were there in 2019 but aren't on retest in 2022. We were planning on getting a retest done in about 6 months after the first test but this thing called Covid happened and reliable overnight International Couriers of a chilled poo sample to Melbourne from Auckland New Zealand became a thing of the past. That's why we are only getting back to it now. The good news is that the shift in species has stayed around for all this time.
I'll follow up getting my results at my follow session with my GP in two weeks.But maybe somebody else here has some experience with bacteria (assuming it is bacteria?) which help maintain the lining of the gut.
I think a lot of gut specialists ascibe to the leaky gut theories but there isn't a lot of reliable work on it.
When my PMR symptoms started I also developed an allergic reaction to wheat starch - only wheat and only the highly commercialised stuff, I can eat foods made with spelt and kamut - rye, oats and barley are also OK so it is not gluten. When I realised I react to Juvela products made with the gluten-free wheat starch they use it suggested it is something in the structure of the starch.
I had a severe itchy but localised rash - very similar to dermatitis herpetiformis so they started to investigate but no-one told me I had to eat a high wheat diet for weeks before a biopsy until a very unpleasant dermy dismissed me with a sneering "it isn't CANCER". Given the unpleasantness that would have caused having managed to sort it out with a wheat-free diet and that there was no cure, just diet, the local coeliac specialist was consulted for his opinion. This was some 16 or more years ago. He said he thought it was a leaky gut situation - but that most doctors didn;t really believe in it. He did - said there was circumstantial evidence. I'd have thought it might have progressed in the meantime - they are a lot more gutbiome aware now!
Sorry for the delay. I'm just a bit slowed down. It isn't your brain, it's mine. Here is the first diet I was on
The rebalancing was done on my gut biome over the month of July 2019. This involved Picoprep for a full clean out. Then weeks 1 and 3 I had Amox SR 500mg 3 times daily (out with the old) and weeks 2 and 4 I had Multigen and Mutaflor (in with the new). I was also put on a very restricted Low Carb Diet. It is probably a bit more extreme than the other Low Carb Diet recommendations.
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No pasta, no rice, no potatoes, no corn, no pumpkin, no squash, no parsnip, no swede (rutabaga), no carrots, no beetroot, no kumara (sweet potato). Basically if it grows underground I don't have it. Note that 3 years on I still have no root vegetables. Nor has pasta passed my lips.
No bread, no grains, no fruits, no seeds, no nuts, no sugar, no cakes, no tomatoes, no coconut, no fermented food, no alcohol, no processed food, no coffee, no caffeinated tea.
Ok for fish, seafood, dairy (pasturized) but no yogurt or fermented foods of any type. Ok for meat, chicken, eggs, cheese, olive oil
The hardest part for me was no fruit and the meat broth. I love fruit and I barely tolerate meat broth. Some of the other restrictions weren't new to me.
For a decade prior I didn't have alcohol so I wasn't giving up anything new there either. Alcohol went when I was prescribed Tegretol and low does Nortriptyline for my Trigeminal Neuralgia (TGN). The instructions were to limit alcohol use. I didn't have much alcohol before so I just stopped in 2009. So nothing new to give up.
For a five years prior I didn't have sugar, or anything with added sugar, or anything with artificial sweeteners. Also no fruit juice, fruit drinks, or fizzy drinks. I already didn't have fruit drinks or fizzy drinks. This was a "no added sugar" diet from Prof Jim Mann of the University of Otago Medical School. I was put on that when my HbA1c was getting slightly into the pre diabetic range. My implementation of this was to never have any dessert foods, biscuits, etc. So I was already well on the way to the more extreme diet.
I'm 168cm tall and had been at 82kg before the "no added sugar" diet. I gradually lost 10kg over one year and stayed around 72kg and my HbA1c went back into the normal range.
I had a caffeine withdrawal headache for 1 day stopping coffee but other than that no issues. My very restricted diet was slightly relaxed towards the end of 2019 and a few things were added back in, but only in moderation. On this "rebalance my gut biome" diet my weight went down to 66kg. Since the slight relaxation (yoghurt, coffee and tea, fruit, nuts and a little rice if cooked and cooled spring to mind unbidden) My weight has slowly gone up to 68kg.
The the new protocol and restricted diet goes for one month. Some aspects are similar to the 2019 diet. I've only just received the written description and still have to clarify one or two things. I'll add the new protocol and diet in a later post.
Here is the link back to my other post where I'll try and just stick to my flare and not make things even more complicated by including diet and gut biome.
wow. it does sound pretty hard. no fruit would kill me because that is MOSTLY what I have. that and greens. smoothies every day. thanks for this. I will look at it more carefully . Hope it helps. and thanks!
Yes I'm a a big fruit eater as well when left to my own devices. Fortunately the new protocol doesn't exclude fruit during the month.
And having accused Bioscreen of not giving me the report as of right, they did! Apologies. I spotted it when I got a message telling me I had new blood results in my GP portal. I now have 6 pages of details and references only a microbiologist could love. 😍 Alas, I'm not one of those.
The leaky gut protocol turns out to be 6 weeks not 4, and I'm now mid week 3. I've adapted to the protocol ok although there are some strange things like a spoonful of Ghee at every meal. 😜 I had the usual headache for a day when I stopped Caffine. I also had a bad reaction to the Pico Prep to clean everything out of my gut. I started vomiting on the second day when I had my initial 1/2 teaspoon of baking soda in water. That went on too long so I had to take Ondanestron to stop the vomiting, and a rehydration solution to make up for the 2 Kg of fluids I'd lost. I was a bit slow for the next to days. Not a good start to the protocol. However, I came right and can tolerate the baking soda in water now.
Having read up on the gut biome report and read a number of the references, I see that the association of an overgrowth of certain microbes in the gut is with RA and Lupus not specifically PMR. I know the overgrowth of "bad" species 3 years ago was Streptococcus and those are now within the normal range. This time I have an overgrowth of Eubacterium sp. and an undergrowth of Bifidobacterium sp. and Lactobacillus sp. so we're seeding them with a specific live probiotic. I'd be happier eating Greek yoghurt for that, but I'm not allowed yoghurt during the protocol.
Based on my reading so far the leaky gut association in the research is more to do with IBS, RA, Crohn's, and ulcerative colitis which I haven't got. Perhaps it will help with inflammatory problems generally.
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