Earlier this year I decided to stop eating gluten and wine. Several months previous to this decision I started to pay close attention to how I felt after each meal with particular attention paid to how I felt after eating foods like pizza, pasta, sandwiches and other gluten rich foods. I noticed that after a gluten rich meal I would feel sluggish, fatigued and on occasion I would develop a headache. So I decided to give up gluten completely. It was a fairly simple choice after I recognized that gluten effects me negatively. I don’t like feeling tired. I don’t like headaches. So I stopped eating things that made me feel terrible. For me it is that simple.
One month later I considered my progress. I don’t ever feel sluggish like before no matter how much I eat. I can eat a whole box of quinoa pasta and I will not experience any sluggishness or headaches. I feel stuffed and I feel energized. Huge difference for me.
Now looking back I see that dropping gluten from my diet has been hugely beneficial for me. I have lost a few pounds, though nothing too exciting, I have noticed some repigmentation on my right hand where most of the top of my hand was without pigment and I think I have had repigmentation in other areas though it is not as clear. I started to do some research into gluten allergies and Vitiligo. Seems like there is a correlation for many people between Celiac’s disease and Vitiligo. This is the case for me. Is this the case for you? Would love to hear from people that have Celiac’s disease and Vitiligo, or have Vitiligo and wonder if they have Celiac’s.
Successful Vitiligo Treatment? Narrow Band UVB Phototherapy and Elidel
Are there successful vitiligo treatments? Yes.
There are a wide range of treatment options these days. I was introduced to several by dermatologists. The first treatment that I was prescribed was Narrow Band UVB Phototherapy for my vitiligo. On the website of the dermatologist I used it says that this treatment is a good option for widespread vitiligo, only takes a few minuets per session and has been successful for thousands of people. On the downside there is “long-term skin cancer concerns.”
Hmmm. Let’s consider this for a minuet. Your pigment will most likely regrow, though by no means is this a cure and in most cases when the treatment ends your vitiligo will spread and the trade off is increased chances of getting cancer which might kill you.
Increased chance of deadly disease for which there is no cure so that you can have some of your pigment back temporarily. You look better but you are this most closer to being dead from a painful disease. That does not appeal to me anymore. Also, the idea that the treatment sessions for Narrow Band UVB Phototherapy for vitiligo are short is false. They are short in the beginning. As the treatment progresses as it must, the sessions get longer. I was at the point where I was getting treatments 3 times a week and sessions we lasting 50 minuets per session. 4 hours our of my week for a more normal skin pigment and am increased chance of getting skin cancer.
I asked the nurse practitioners about the cancer risk. “Oh its not really a big deal.” Really? Its not a big deal. It is to me!
I should mention that the pigment did regrow after a couple months of treatment. When I stopped after 9 months the pigment started going away again. Would I have to spend quite a bit of time in treatment sessions continually, for the rest of my life to keep my skin looking normal? Also, I did get a nice tan on the spots that did have pigment. A plus I suppose.
How do we define success when it comes to vitiligo treatments. Normal skin pigmentation? Is that it? If the answer is yes, normal skin pigment is all we are after regardless of the side effects, then there are successful vitiligo treatments.
I think we ought to ask ourselves what is the price of being normal or beautiful. Are we willing accept a potentially shorter life in order to have a standardized skin tone? I am not willing.
That same dermatologist prescribed a topical immunomodulator called elidel also know as Pimecrolimus Topical. (You can read more about elidel/Pimecrolimus Topical on this National Institute of Health website maintained by the US Government. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000236/)
If you clicked that link you may have read the first line which I will include here: “A small number of patients who used pimecrolimus cream or another similar medication developed skin cancer or lymphoma (cancer in a part of the immune system).” The FDA required the drug manufacturer to place a black label on elidel because of the side effects that warned people of the risk. My doctor did not warn me about these risks.
I asked the nurse practitioner about elidel. I asked her: “What does it do?” She said, and I will never forget her response: “We don’t know. But we have found it to be helpful with vitiligo patients.” Really? You don’t know? We don’t know? Who is we exactly? The FDA seems to know something about what it does. The drub company that made the drug most know something. “We dont know…”
Curious about what elidel does? From the NIH website: “Pimecrolimus is used to control the symptoms of eczema (atopic dermatitis; a skin disease that causes the skin to be dry and itchy and to sometimes develop red, scaly rashes). Pimecrolimus is only used to treat patients who cannot use other medications for eczema, or whose symptoms were not controlled by other medications. Pimecrolimus is in a class of medications called topical calcineurin inhibitors. It works by stopping the immune system from producing substances that may cause eczema.”
“Stopping the immune system from producing substances that may cause eczema.” Seems fairly clear. As you may or may not know, vitiligo is an auto-immune disease. The bodies immune system attacks the cells that creates pigment. So, immunomodulators like elidel are helpful when you want to stop your skin from being depigmented by the immune system.
The dermatologist’s staff just lied to me. I should have walked away right then. I worked with that dermatologist and his staff for another 9 months or so. I should mention that this dermatologist is quite well established in the South Bay Area/Peninsula.
More cancer risk? Two treatments were prescribed that increased my risk of cancer. No warnings. They just sold me. They sold the insurance companies too on the the idea that increasing my risk of cancer was good for my health. Over the course of those months in treatment I cost my insurance company tens of thousands of dollars. What if I get cancer 20-30 years from now? How much will that cost an insurance company? Is this a wise course of action?
There are more options of course. The strange thing is that almost all treatments have serious potential side effects. You get treatment for a disease that is not at all life threatening and your chance of getting a deadly disease increases.
What is normal skin pigmentation worth? And can we get rid of vitiligo without deadly treatments? These are questions I would encourage anyone to ponder.