Is Histamine a prime suspect?
I sometimes feel that using the internet to delve into the causes of vitiligo is a recipe for insanity because it can lead you in ever decreasing circles. As someone with no formal scientific training and only hazy recollections of school chemistry and biology lessons, my searches typically involve scores of browser tabs, hours of cross-referencing articles and frequent checking of definitions. Whilst I find the subject matter utterly fascinating, the process can be frustrating, especially when I come up against dead-ends or realise I have been chasing shadows, as sometimes happens when I make wrong assumptions or follow promising leads that then go cold.
A medical doctorate would have come in handy but I'm afraid that ship sailed decades ago when I chose to study literature instead. It strikes me that the literary figure best equipped to come to my aid now would probably be Agatha Christie, given how much detective work is involved in tracking down likely causes and possible treatments. It requires the kind of sleuthing that would have taxed Hercule Poirot's little grey cells to the limit. Luckily, I am a bit of a murder mystery buff, so I am not easily put off by the twists, turns and red herrings that characterise the best detective stories. And, believe me, vitiligo is one of the very best.
Who killed Mel Ann O'Cyte?
... Seems like a good title for this particular mystery.
Who killed the pigment-producing cells? (Are they even dead or are they just in a coma?) Was it Miss Scarlett in the Conservatory with the Sunburn? Was it Professor Plum in the Bathroom with the Leaky Gut? Perhaps it was Colonel Mustard in the Nerve Centre with the Melatonin. Could it be Mrs White in the Panic Room with the Mental Torment? How about Reverend Green in the Kitchen with the Toxic Diet? Or even Dr Koebner in the Rumpus Room with the Blunt Instrument? I think there are many more rooms in this murder house and a lot more suspects besides these... but you get the general idea.
Murder or Grand Theft Auto-immunity?
Whether the ability to produce skin pigment in vitiligo involved the death of melanocytes or simply the "theft" of their ability to do their job, it is generally agreed that the Prime Suspect to date is Autoimmunity, that no-good villain who causes our body's own immune system to attack healthy cells instead of genuine invaders. But is the wayward immune system acting alone or with the aid of accomplices? Is Autoimmunity a lone pigment attacker or just one part of a conspiracy involving other suspects (for example, that Rogue Gene, Major Stress or that free radical known as ROS)? A new suspect I have added to my line-up recently might surprise you since he is not often mentioned in connection with vitiligo, in spite of the fact that the is is a notorious trouble-maker, a member of the Autoimmunity gang and a known associate of all the other suspects: his name is Histamine.
Cleverly written murder mysteries often cause the reader to overlook clues that later appear so obvious that you wonder how you could possibly have missed them. This has certainly been the case with my particular vitiligo story. In the years since I started to re-pigment I have gradually pieced together some vital clues that were staring me in the face all along and one of these was my virtually life-long history of allergies. My allergic reactions have mainly been niggling and annoying, rather than severe. But they have been there as long as I can remember, the main symptoms being blocked sinuses, itchy eyes and persistent rhinitis. Over the years I also started to experience skin sensitivities like adverse reactions to certain beauty products or fabrics. But I never thought there could be a connection between these other symptoms and my vitiligo. However – having done some reading and exercised my little grey cells on the subject of “histamine intolerance” - it is now glaringly obvious that all these allergic symptoms were clues that I had raised levels of histamine in my body. And I now know that a long-term accumulation of histamine can cause havoc, resulting in a host of inflammatory health problems including digestive disorders like leaky gut syndrome and skin conditions like vitiligo.
Solving the case
Including Histamine in our list of suspects may not amount to solving The Mystery of the Missing Pigment and finally bringing the perpetrator to justice. But I do think it helps to untangle what appears to be a complex, systemic “conspiracy”, rather than a simple, direct attack on the skin. And, more importantly, it suggests that an additional way to reverse vitiligo might be to keep histamine levels in check (locking up a key conspirator could thwart the rest of the gang!).
So, following in the gumshoes of all my favourite fictional detectives, I am going to leave my readers in suspense until the next chapter, when I will delve a bit deeper into how re-pigmentation of vitiligo could be improved by tackling excess histamine. To be continued...
How would you rate your doctor?
Back in the Dark Ages, before the internet, it was customary to rely on the #family-doctor for all medical opinions, diagnoses and treatments. Our GP (primary care physician) was considered to be the infallible oracle for all questions biological and physiological and his or her word was not to be questioned. Now, of course, the first place most of us go to check our symptoms and look for help is our trusty search engine. Only then, armed with detailed information on our condition, do we seek a professional confirmation of our self-diagnosis and a prescription to make whatever ails us go away. The hearts of doctors around the word must surely sink like a gallstone in a glass of water every time a patient comes into their surgery clutching an assortment of printouts from Wikipedia, sundry health forums and symptom checker websites. Whilst I can sympathise with the medical profession's undoubted irritation at this phenomenon, I firmly believe that many of us whose health problems are relatively uncommon and hard to treat are left with no choice but to seek help online. Not only that, but careful and intelligent online research often can, and does, result in us acquiring a far better grasp of our condition than the person on the other side of the consulting desk, wearing the white coat.
Some doctors really do know what they are talking about when it comes to vitiligo
#Vitiligo is a classic case in point. As I have often said before, it seems to me that a shockingly high proportion of vitiligo patients do not receive the quality of support and care from their doctors that they deserve or that they would receive if they had, shall we say, a more “popular” skin condition. I regularly hear from people whose attempts to obtain information and solutions for their vitiligo from their doctor have been met with a dismissive and unhelpful attitude. A recent example of this is a 35 year old man whose email description of his experience pretty much summed this attitude up. He told me, "My GP had no idea and after waiting 6 months to see a dermatologist I was in there 10 minutes and he told me nothing can be done for me and I was sent on my way".
This state of affairs saddens and angers me. But it does at least make exceptions to the rule all the more welcome and worthy of note. I have previously referred to the fact that some medical practitioners are more enlightened than others when it comes to vitiligo and this week I would like to highlight a couple more of these exceptions. I recently came across two interesting interviews in Dermatology Times that prove there are doctors out there who have a positive and proactive approach to vitiligo.
The Big Picture, Vitiligo Treatment Success
The first interview (back in 2009) was with Charles Crutchfield, M.D., adjunct clinical associate professor of dermatology at the University of Minnesota Medical School in Eagan, Minnesota, in an article entitled The Big Picture, Vitiligo Treatment Success. Dr Crutchfield discusses the success of treatments including UVB, excimer laser, topical steroids and antioxidants (both topical and systemic). Although this information is no longer hot off the press, what really caught my eye was the doctor's comments about success rates. He says: “I think a lot of physicians assume nothing can be done. “I’ve seen patient after patient come in and say they’ve been to many doctors who say there was nothing that could be done — and before the development of laser therapy and phototherapy, that may have been true, but we now really can offer some improvement. We don’t have total success, but in my practice, I would say I see a positive response about 70 percent of the time”.
Best practice in vitiligo should be adopted across the medical profession
The second interview I found (dated 2015) was with Seemal Desai, M.D., board-certified dermatologist, clinical assistant professor in the department of dermatology at University of Texas, Southwestern Medical Center in Dallas, and medical director of Innovative Dermatology. (You can read the interview by clicking on the doctor's name above.) In the section headed Insights in Vitiligo Dr Desai outlines the refreshingly systematic and thorough investigative processes he follows with his vitiligo patients in order to gather as much information on their medical background as possible, to be able to identify associated autoimmune conditions and nutritional deficiencies and to discuss all the treatment options available. It has to be said that his approach is, sadly, a million miles removed from that of most dermatologists I get to hear about. What a pity it hasn't been adopted as accepted best practice across the medical profession. If it had, I am sure there would be a lot fewer frustrated and dejected vitiligo sufferers out there.
Judging by the Dr Desai's reply in the section entitled Dealing with Insurance Denials, it is clear that the dismissive attitude exhibited by much of the medical profession towards vitiligo is also shared by insurance companies in America who frequently refuse to cover treatments for the condition. (This is another complaint I hear all too often from vitiligo friends, frequently in relation to the provision of home phototherapy units).
As I read this interview it struck me that the doctor's comments on the subject of available treatments sums up why vitiligo is the poor cousin of other skin conditions. He says, "Hopefully there will be newer things out there. The problem is that there are a lot fewer people with vitiligo than with conditions like psoriasis and atopic dermatitis, so when the National Institutes of Health and other agencies look for things to fund, vitiligo gets shifted to the bottom. We need more studies and data to prove that there’s systemic implications and involvement, so we can get people treated and increase research funding".
In my opinion, it is well worth reading through this entire interview and taking note of the tests and treatment options Dr Desai runs through with his patients, as well as his comments about the psychosocial impact of vitiligo. And, dare I say, it could be worth printing it off to take with you to your own doctor if you want to avoid being sent away within 10 minutes with the words “there is nothing we can do” ringing in your ears.
My name is Caroline.