Eczema, the Microbiome and Topical Steroid Withdrawal.
In this article I am going to make observations on the following:
- Technically speaking eczema is ‘genetic’, however, the root cause of the flare ups (and the suffering) could be related to an imbalance in the microbiome.
- I’m going to share my lab results in the hope of identifying and discussing potential common root causes within the microbiome.
- Exploring the idea that healing and ‘topical steroid withdrawal’ could be accelerated by doing gut tests and following protocols that address the root causes.
I would like to share my findings in the hope that:
- Other people that have done gut-based lab tests can share their results to see if there are commonalities that could help the wider community.
- People that are smarter than me can either correct me or help mould these ideas.
This article is originally intended for the people of the ITSANN Topical Steroid Withdrawal Support Group on Facebook, but it’s also open to anyone who is interested.
My Story.
First off … I’m not a scientist or a doctor. I also don’t claim to be. I’m just somebody who has been through an intense period of chronic suffering and has come out the other end. After doctors/dermatologists were telling me things like ‘there is nothing you can do, this is genetic’ I felt forced to look for solutions outside of conventional methods. To be honest i felt failed by a system that i’d spent my whole life thinking of as a safety net, this was quite a painful realisation to make in itself.
Living with my body in constant pain, skin itchy and inflamed was not an option. Steroid creams would suppress the itch but then it would come back worse until it was hard to ignore, hair falling out, skin infections became too common to deal with and live a normal life.
During this journey I spent a lot of time testing and trying different things, using myself as the guinea pig, I spent thousands of pounds and I made a lot of mistakes, making things much worse at times! This turbulent patch is behind me now and I feel that I’ve finally found a science-based path which seems to be working. So I’m sharing it with people in the hope it could open up some wider discussions.
Introduction.
The main topic of discussion here is around the microbiome, the problem with discussing this is although it’s considered ‘mainstream’ scientific knowledge, it’s not something that has found its way into GPs’ education systems or the NHS practices yet. As with any big institutions, change is something that can take years. Big ships at sea take much longer to change course that smaller ones. To get deep for a second: the reason I’m highlighting this is because I feel that as society we are conditioned to believe that anything outside of your GP’s advice should be considered fringe. We feel naturally sceptical of any ‘health fads’ and would feel much safer to wait until it’s packaged up and part of the NHS (if you are in the UK). Unfortunately for people who are seriously suffering, we don’t have time to wait 5–10 years for the pharmaceutical industry to work out how to properly monetize gut health and turn it into a regular payment-based subscription model for us (yes getting vaguely conspiratorial here, however rest assured that will be my only comment on this matter). The interesting thing about gut health is that as well as helping people solve chronic issues, it also seems to be the best way to prevent illness, also, as you are able to identify potential imbalances before they manifest into symptoms or a disease.
Eczema aside, to me this is ground-breaking in itself as there currently doesn’t seem to be any system with my GP that focuses on how to optimise your health from a prevention stand-point.
Topical Steroid Withdrawal.
I’ve been a member of the ITSANN TSW FB group since October 2018 and it’s really helped me. Things had got so bad that was on Prednisone and I’d tapered the dose to phase the drug out around July 2018 in the hope of coming off it for good. Unfortunately the symptoms were coming back… and it was excruciating. I was considering going back to the topical steroids but some Google searches lead me to the theory of ‘TSW’ and the idea of combatting the condition without steroids. This is much easier said than done and after being the group for a year now I have the following observations:
- Not many doctors support TSW, to the point where there is a degree of tension between sufferers and the pharmaceutical industry. Sufferers seek support in this group with other sufferers but this also leads to a lot of confusing discussions.
- Discussion around the microbiome come up occasionally but I haven’t seen these theories fleshed out yet.
- The two main doctors who support TSW are Dr Rapaport (USA), Dr Fukaya and Dr Sato (Japan), however, most of their material seems to be published before the microbiome research was declared mainstream. They seem to have the right fundamentals (i.e. avoid steroids) however, based on what the new science is showing should their theories be developed somehow?
After trying many different protocols, following dead ends, making things worse and dealing with a number of charlatans I’ve arrived at these conclusions based around topical steroid withdrawal, gut health, functional medicine and the microbiome. I’m going to do my best to link as many points to scientific papers as possible to cite my points. I’m also going to discuss potential solutions.
Eczema and The Microbiome.
Researching the Microbiome was my first step in understanding more about how the body works. The term was coined in 2001, but was considered ‘fringe’ until gaining mainstream attention in roughly around 2017.
Eczema is recognised as an auto-immune condition, in the sense that it’s the body’s immune system causing inflammation. However, when most people talk about auto-immunity they are not taking into account the role of the microbiome. Doctors and researchers are currently debating that the concept of auto-immunity should be reviewed. Based on what we now know about the microbiome and that it’s less about the ‘body attacking itself’ and more about the immune system creating antibodies to protect itself from a compromised gut barrier (PODCAST: Re-thinking the theory of autoimmunity in the era of the microbiome).
However, this is still a symptom of an underlying condition, and the root cause of this is most likely some kind of dysbiosis or gut issues i.e. leaky gut (more details on this below). Doctors’ solutions to these things are currently steroids, (either oral or topical creams). However these were invented when the body was assumed to be sterile before we knew about the microbiome and the more recent findings in auto-immunity, meaning that although steroids will suppress the inflammatory symptoms they will most likely fuel the initial problem, leading to more problems down the line.
“The current strategy of immunosuppression though helps in reducing symptoms but the overall impact on the disease is not effective, especially in inducing remission or a long-lasting cure”
Source :https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3523489/
To make things worse, people with skin issues are prone to skin infections, if these get worse the doctor will most likely prescribe antibiotics. This will further damage the microbiome, and given that this is the problem in the first place it would make the initial condition worse.
Another factor is stress, arguably a root cause of the initial symptoms could be stress. Corticosteroids affect the adrenal glands and change the way the body produces cortisol (the hormone needed to deal with stress) meaning that using topical steroids (for stress) makes it harder for your body to deal with stress… making you MORE STRESSED! (Info here, here, here and here)
So…. here we potentially enter into an endless cycle…. maybe even a downward spiral. What is the solution? Well, here are some starting points:
Bifidobacterium
Bifidobacterium is a strain of bacteria that lives in the microbiome. It’s originally released through the mothers vaginal canal at birth, meaning that caesarean babies often lack this vital strain. Bifidobacterium is also a strain that is highly susceptible to anti-biotic damage. Low levels of this strain of bacteria result in eczema and other inflammatory conditions.
Below are 2 of my lab test results, taken roughly 9 months apart. The first test I was suffering severe ‘TSW’; by the time I did the second test I had supplemented with a ‘Bifido Longum’ probiotic for 3 months and things were getting better:
This is just one example of a strain of bacteria that I identified via tests and then fixed with supplementation, however there could be a number of other unbalances, it’s worth doing a gut test to find out (sorry in advance but I will repeat this point as i think it’s important!)
The danger with probiotics is taking advice from Google. Health blogs everywhere tell you things like ‘consume bone broth, kefir, sauerkraut and kim-chi’. However I would say this could potentially make everything worse for some people because of my next point…
Histamines
I see a a lot of discussion in the FB group around histamines, people going on a low histamine diet or taking anti-histamines to help with symptoms. If anti-histamines work then it would indicate there is a potential histamine intolerence. The problem with suppressing this with anti histamines is that (most brands…especially ‘off the shelf’ products) affect the way your body handles inflammation and can be harmful. (The exception to this could be fexofenadine).
In your gut flora microbiome there are also bacteria that create histamines. This is a normal healthy immune response but sometimes you can have too much histamine causing bacteria meaning that you suffer from a ‘histamine intolerance’.
Coincidentally low levels of bifidobacterium can be responsible for high levels of histamine bacteria. ‘Bifidobacterium Longum’ is one of the strains that helps keep the histamine strains at bay. The problem with most supermarket ‘multi-strain formulas’ of probiotics is they also contain histamine-creating bacteria. It’s worth researching and finding products that only have the strains you need. (You can find out the strains you need by doing a gut test).
As mentioned before, stay away from fermented ‘probiotic’ foods and look at the histamine food list.
Leaky Gut (aka intestinal hyperpermeability)
As you can see i’m lucky that my bio-makers weren’t too bad, however they were high enough to flag Leaky gut as a factor in this puzzle. Intestinal walls can be damaged by stress, poor diet, anti-biotics or simply not getting enough fibre to feed the microbiomes to the point where they start feeding off the mucoid wall of the intestines.
This is often the point where people start experiencing food intolerances, which can differ from person to person. This has lead to very divisive discussions, especially the vegan vs carnivore debate where the extremists on both sides have started to hijack the debate to weaponise the health issues associated with an elimination diet. You have the #meatheals movement from the carnivores or the vegans latest Netflix Documentary ‘The Gamechangers’ which has been de-bunked by numerous specialists as being full of propaganda and misleading information.
However i feel that the truth is somewhere in the middle. Some people can be inflamed by eating meat, some by lectins in vegetables, others by gluten or grains, dairy, eggs etc etc. It’s differs from person to person, however the commonality is most likely caused by food particles crossing the intestinal wall and entering into the body so the immune system has to create anti bodies to protect you, resulting in an inflammatory response (i.e. eczema or other auto immune conditions). An elimination diet may be helpful, however, just the fact you have a food intolerance is a suggestion you may be suffering from leaky gut. Again… the best way to confirm this is by doing gut tests.
BTW: One of the most popular pieces of advice for leaky gut is to consume bone broth, however again if you have a histamine issue this isn’t a good idea. One of the main components needed from bone broth is L Glutamine, which can be sourced elsewhere.
Other Factors
The other common factors that seem to be discussed a lot within the functional medicine community are Candida, SIBO. Candida is an overgrowth of yeast, SIBO is an overgrowth of bacteria. Both are products of an unbalanced microbiome where pathogenic bacteria are able to thrive. In this bad environment things can also get more serious and H Pylori could take hold, it seems that anti-biotics are (unfortunately) the most effective way to solve this. (I would flag that this point is debated and some people believe there are natural remedies to this… Please do your own research).
Solutions: Step1 : Diagnosis
As mentioned above I can’t stress enough how valuable it is to do gut tests to get a full picture of what is happening inside your gut. However, the problem with this is that it’s confusing and it’s a largely unregulated industry, leading to charlatans and a lack of consumer trust. I tried a number of companies and would give the following reviews:
Genova Diagnostics — These seem to be one of the most popular labs, however it’s hard to navigate without a practitioner to advise on which test to choose and then decipher the results. Personally, my first mistake was hiring the wrong practitioner, so I would advise finding a credible functional nutritionist to guide you through this process.
AtlasBiomed.com — seem to be the most popular in the UK but the tests are very surface level. They helped me by informing me I had low levels of Bifidobacterium Longum which gave me an indication of where to start, however they don’t test for yeast, bacteria, pathogens or leaky gut.
HealthPath.com — The ‘Advanced Gut Test’ seems to check for all of the things that AtlasBiomed doesn’t. It’s more expensive but they also give you a practitioner review, a supplement protocol and diet and lifestyle plans. So far I’m happiest with this.
Solutions: Step2 : FIX!
Faecal Microbiota Transplant.
Ok…so this may sound strange but… essentially the best way to re-set your microbiome is to have an operation that involves placing a healthy person’s feacal matter inside your small intestine via an enema.
However trying to get an FMT on the NHS is incredibly difficult. I’m definitely not advocating a DIY FMT here.
Supplementation Protocol
Rather than basing supplementation protocols on online advice I would highly advocate doing tests. That being said I would love to hear from anyone else who has been on a similar journey to find out if there are commonalities in our tests results that could help other people.
For me the first step was fixing the leaky gut, I did this using something called ‘Perm-a-Vite’ powder which contains ingredients such as L-Glutamine, Slippery Elm, MSM, Zinc and (apparently the most effective ingredient being) ‘N-Acetyl-D- Glucosamine’… which is derived from fish products.
To address the Secretory IGA issue of the mucoid wall i’ve been using ‘mega mucosa’ and more recently switching to L Glutamine.
Probiotic wise I’ve been replenishing my Bifidobactrium Longum (which was previously at 0% and is now re-cultivating), Lactobacillus Rhamnosus (to help with Histamines) and Saccharomyces Boulardii.
To fight the candida I’ve been using ‘Biocidin Liquid Formula’ and ‘ADP Oregano’.
Recently I’ve also introduced some enzymes and have noticed a positive difference in my stool consistency.
There are a lot of dodgy supplements about, and some are even toxic (or have histamines). The best thing to do is check your product on labdoor.com before buying. Oh and again….PLEASE DO TESTS! (for reasons stated above i.e. histamines etc)
Summary
So what I am wondering here is :
- Has anybody else who is going through topical steroid withdrawal done gut tests? Can we compare notes?
- Given that low levels of Bifidobacterium could be responsible, is there a possible correlation between cesearian births and TSW/eczema?
- What percentage of people doing TSW might have also taken anti-biotics and damaged their microbiome?
- People talk about topical steroid withdrawal taking anywhere from 1 year — 8 years. Could this correspond with the amount of time it would take the microbiome to rebalance after damage?
- By this logic could doing gut test and addressing the imbalances accelerate the healing process?
References:
- Microbiome in the Gut-Skin Axis in Atopic Dermatitis: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6021588/
- The Role of the Microbiota in Eczema: Findings Suggest That Striking the Right Balance Keeps the Disease at Bay https://www.niams.nih.gov/newsroom/spotlight-on-research/role-microbiota-eczema-findings-suggest-striking-right-balance-keeps
- Microbiome-based atopic dermatitis treatment shows promise https://nationaleczema.org/topical-microbiome/
- ITSANN — https://www.facebook.com/groups/ITSANSupport/
- https://www.healthline.com/health-news/study-proves-eczema-is-an-autoimmune-disease-010515#1
- Dupilumab improves the molecular signature in skin of patients with moderate-to-severe atopic dermatitis https://www.sciencedirect.com/science/article/pii/S0091674914014833
- Re-thinking the theory of autoimmunity in the era of the microbiome https://soundcloud.com/amy-149590096/re-thinking-the-theory-of-autoimmunity-in-the-era-of-the-microbiome
- The treatment strategies of autoimmune disease may need a different approach from conventional protocol: A review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3523489/
- Steroids, stress and the gut microbiome-brain axis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6314837/
- An Overview of the Adrenal Glands
https://www.endocrineweb.com/endocrinology/overview-adrenal-glands - Recovery of steroid induced adrenal insufficiency
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- Bifidobacterium Bifidum: Benefits, Side Effects, and Morehttps://www.healthline.com/health/bifidobacterium-bifidum#benefits
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- Bifidobacterium Shown to Reduce Histamine Levels https://www.isotrope.com/bifidobacterium-reduce-histamine/
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4470164/ - Histamine-secreting microbes are increased in the gut of adult asthma patients
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https://www.ncbi.nlm.nih.gov/pubmed/18544899 - probiotics-a-guide-for-those-with-food-sensitivities
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- Putting a stop to leaky gut
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