Ending Antihistamine Diet

 Day 28: ending two weeks of the antihistamine diet

It's been about two weeks since I started the anti histamine diet and I am so ready to come off of it. As I predicted, it didn't make much of an impact because I was ALREADY eating really low in triggers. I knew going into this that alcohol and sugar are the WORST for my skin. Stress and dry air (winter in particular) also don't help. Here is my skin at the two week mark: this is my usual "resting" state. 

I remained at 142 pounds, and I felt more bloated overall thanks to the evening primrose/OMEGA pills I had to start taking. I played with when I took them and I think they are best taken with dinner, as taken with lunch I rarely felt hungry for dinner 4-5 hours later. 

Cutting out gluten was the WORST. I have a few friends that are gluten free and I have to say I'm so sorry, the impact gluten has on my routine for quick satisfying foods is really incompatible. Granted, a lot of people pity me my lack of dairy but that I never seem to miss. 

I think I will carry forward less soy milk products; not a huge difference in my blemishes and redness, but enough to continue to minimize it and not drink it in my coffee/tea/cereal/as a milk substitute. I like having both almond and oatmilk options in my fridge as it depends on what I want to do with it IE cook with oatmilk, drink almond milk.

I did have a two drink night with dinner after a stressful day of finding out my grandparents are not doing well and I have to make an emergency trip out east - and that night I had a hard time staying asleep with a 4 am panic attack. For me it seems one drink is fine, as long as it's not red wine. But if I have red wine or more than one = 4 AM wide awake sore stomach and panic. *sigh the joys of sipping red wine with my fiancé are pretty much gone :(

And on that note - I am flying off to the Maritimes to be with my Grandparents for a time and I won't be able to keep this up so the ending will be abrupt and I'm sure to get a scolding from the doctors when I return for my visit in two weeks time. Oh well. Life, rather, death, happens. 

Day 18: on the anti-histamine diet

 Day 18: on the anti-histamine diet

I hate it. Not being able to have peanut butter and kombucha, who knew that I was so attached to certain foods. So far I am eating like a horse, as my best friend Val pointed out: oatmeal, oat milk, apples, apple butter, fresh salads... Ya. I don't like this horse diet. So I decided to check pinterest for anti-histamine recipes...

I tried this one and even my fiancé ate it with me, and we laughed that it was very thanksgiving in flavour: https://drbeckycampbell.com/anti-histamine-turkey-kale-sweet-potato-skillet/ (I added rosemary and mushrooms though...)

After taking the omega and primrose with lunch, I feel bloated around 3 pm and not so hungry for dinner.

I found sweet treats to eat on this diet! ShaSha Spelt Ginger Snaps 

(all the other flavours don't pass the test)

And a check in: light pink dots, not itchy, this is the best I can hope for on the regular. But I'm daring to dream CLEAR skin so here's hoping this diet and these new supplements can do that (and be ready in time for my wedding and the low back dress I have for October 2022!

Starting Over... Kinda.

Day 3: April 6 2022

So I'm back to the naturopathic doctor that I started with in 2009! He is still practising! And my new intern, as it's a Canadian College of Naturopathic Medicine (CCNM) Robert Schad https://www.rsnc.ca/ is nice too.

The onboarding is a deep dive into who I am and what I do and what I eat is time consuming but helpful. My homework over the next two weeks until next check up are a weekly diet diary, an in depth lifestyle profile of environment, exercise, job... so they get a better picture of what stressors and triggers and level of activity I am at. 

Diet Diary

My "reunion" with Dr Hall made me laugh because he suggested the same thing he did to me in 2009: fish oil! Why did I ever stop taking fish oil...? 

An overview of what I am taking currently:

Pine Bark Extract pills 50mg/day

High Potency B Complex pill 100mg/day

D3 1000 IU/day

Magnesium 500 mg/day (for migraine prevention)

*sometimes Zinc 25 mg

*sometimes Valerian in my tea for sleep aid

 

And I just ran out of my CBD 15 mg oil that I used to take daily for the past 2 years that was helping me with my anxiety and insomnia. I'm taking some time off to see if is hindering more than helping as I get congested and itchy from it. Marijuana is legal here in Ontario Canada, and since legalisation I have been enjoying CDB as a way to combat my stress and General Anxiety Disorder, which was pushed into full swing since the pandemic, my friend Roberta Died, and well... the general dystopia that the world is in :P 

Immediately I am reminded of how much sugar has crept into my diet: in my peanut butter, in my soy milk, and elsewhere. I am also reminded that even though I am not gluten intolerant I do consume a lot of wheat products that can also irritate skin. 

Sigh. 

They are talking about a hypoallergenic diet. UGH. I knew this was coming. I remember the elimination diet back in 2009 when I lost 15 pounds from just not being able to eat anything FUN. 

I am asking my GP Doctor for an allergy test too; the one where you get a million needle pricks to see what you react to. I haven't had that since 2009 too. Could I be allergic to more or less over the past 13 years?

I should do a weigh in... I never weigh myself... but I know I lost weight last time and since the pandemic I have been moving less. 141 pounds. Ok. Did that. Hate that.

 

So the next two weeks will just be observation (and me judging myself in the process!) and my "team" at the clinic will be researching my skin disorder to follow up with me soon. 

Winter Flare Ups: Living with Darier's White Disorder in all seasons

Each winter I am reminded why I hate the cold weather: it's dry here in Ontario and I run my humidifier constantly, but it is never enough. My scalp gets flaky and my skin gets flares easier. But this year a NEW thing has happened :( my face is getting dry red patches that itch and have a mix of acne and flare up bumps = NOT FUN.

dry patches are new and I hate them

I am trying to treat it with a mixture of things as I am finding one cream is either too heavy (Vitamin E cream and a new one I tried from LUSH called Celestial) and takes away the redness/dry spot but leaves pimples, or it dries out the pimples and soothes the dry skin but leaves flaky dry skin (Vitamin A cream, Polysporin, and the Germolene).

UPDATE: Celestial didn't work out, it was too heavy and left me breaking out** I ended up using it as a hand cream.

I hate winter.
(And yet I prefer it to summer? Ugh, scratch that, I just hate my stupid skin.)

Granted I'm also highly stressed lately and have been consuming more sugar than normal... I need to focus on getting back into a routine of meditation and low/no sugar intake as my back has sprouted red "wings" and the front of my torso is sporting red blotches here and there. I am feeling very defeated.

I have been going to the gym somewhat regularly so sweating and friction of the workout clothes might also be contributing, and they have a hot tub there which is chlorinated so that could be helping or hindering me as well; I have heard that chlorine helps some of us with DWD and people go swimming in pools to help keep flares down.

I am going to go back to 2x 100 mg magnesium a day - one in the morning and one before bed to see if that helps, on top of my regular Vitamin B + Pine Bark Extract mix in the morning. It could be time to mix in Vitamin D (cloudy winters are not making this fun either).

So just a reminder that it's not always the same thing day in and out that works - sometimes you have to bang your head against the metaphoric wall and try to tap into what's making the flare and fix it on the fly.

Happy winter everyone :/

I just want to feel normal.

I have a tough post to make here.

I recently got an email (thanks for those by they way! Always happy to connect!) that ended with "I just want to feel normal."

I can't help you with that.

What I can do is help you learn from my mistakes and triumphs - but ultimately only you can find your "normal" and I put those in lil quotes because I also don't believe in normal. That word is loaded with baggage so I urge you to find what makes you YOU and you happy.

Y0u can help yourself by seeing your family doctor, then I would highly recommend finding a Natural Path. I had a great experience at Robert Schad Naturopathic Clinic here in Toronto.

Under the recommendations that the above parties give you I also recommend cutting out triggers and allergens like:

-alcohol
-high sugar intake
-cow dairy
-whatever makes your skin (and stomach) crawl when you eat it

I also recommend using gentle and natural products like:

-Perfume free moisturizer (I love the Aveeno line or their knock offs + I live off of Life Brand Vitamin A cream.)
-Perfume free laundry detergent
-Moisture rich shampoo (I'm really liking Rosemary Mint by Aveda) as less crap in your hair = less itchy/scaly skin on my head and neck.
-ditch as much makeup as possible as it only irritates the skin, but if you have to I have been having a good time with Cover FX for hiding bumps and redness.

I also recommend asking about vitamins. I take a women's multivitamin + Pine Bark Extract + B complex + D, and sometimes Zinc + Omegas + Probiotics.

It's a bit overwhelming and I can't say that I have been 100% following my own rules/reco's - but when I do I feel better and have fewer flare ups.

This is not to say I don't have any trace of my Darier's.

I ALWAYS have bumps.
I ALWAYS have redness.

It's just manageable with the above regime.

See?

Stress.
Lady Time.
Parties with all the sugary treats and alcohol.
Sweating really hard at the gym.

All that and more makes for visible/more bumps. That's just life. For me anyway.

So I'm really terribly sorry, my blog isn't doctor approved, nor is it the recipe you have been looking for to make this go away (but if you have it please share with the rest of us!)

 I'm just letting you in on my side of the fight against Darier's - and I hope you take something positive away from it. I hope you share your struggles and wins with me so we can learn from each other.

But other than that?
It just goes on. I wear a lot of scarves. I have a lot of cover ups for the beach. I try to avoid certain foods if I know I'm going to have my picture taken or whatever - and I have had a shift in career to get behind the camera rather than in front of it. It's my way of dealing. But that's just it - my way.

Please share your way of dealing and maybe it will help others too. That's all I'm doing here :)

Thanks for your emails and comments.
I hope we can help each other out.

-Adrianna

Living with flare ups.

So my January and February were both nuts. Seriously. I don't think I managed any downtime until this past weekend, the last weekend of February. I had a major major audition that made me live on edge for a week and then a final term paper due the day after. It was a stressful time.

So I needed to unwind! I went to a friend's cottage and kicked back a few beers and eat vacation food (read: sugar and fats) for 48 hours. Guess what happened?

This:

Yup. Sad Panda. 

A flare up so bad that it hurt to wear clothes. The camera doesn't capture just how raw it is (because it's still flaring!) and how much it has grown. It has turned up along my neck again and all down my back. Does your DD move around your body too? Mine used to be thighs and neck. Now it's mainly neck and back? 

I am trying to eat clean: lots of veggies, oatmeal for breakfast, no processed/added sugar, a hault on all things alcohol. It feels like I'm back in detox. I haven't started the food journal but if it doesn't get better in a week's time I think I will have to start one up again - and that means really detoxing. I cycled in Vit E cream but I find it greasy and not as good as Vit A cream but I am hitting Desperate Levels at this point!

I need to remind myself that there is no overnight treatment, that it is every action I take - I need to meditate, eat clean, and drink lots of water. I need to make sure I don't skip vitamins and pine bark. This seems so simple but then a friend's birthday is here and the party is at a bar - pop and booze = ugh. You know this story. It's hard to always stay true to your DD. 

5 Things I Will Do For My Skin

1. Drink Water like I'm a camel

2. Keep up on my pill therapy: pine bark, Vit B, D, Multi, Probiotics, *Zinc and *Omegas (which I am bad at remembering)

3. Lots of clean eating, meaning easily digested and without a lot of sugar and fat (like brown rice, green leafy veggies, oatmeal)

4. Go back to taking my tea and coffee back (sad sigh)

5. Yoga and quiet times. Gotta get that stress down!

What do you do when you flare up?

Thank you for all your letters!

I just wanted to say thanks: thank you for visiting this site and thanks for sending me your notes, comments and emails about your insights/triumphs/questions/answers/journeys. Thank you for telling your story.

I have a separate blog at my mental health website and I invite guest bloggers there to share their stories - I want to encourage community. And I think I want that here too. So many times I hear such great feedback or even a personal story of how you are dealing with Darier's that I automatically want to ask if I can report it as a blog here. Well, why not?!

If you are willing to share your journey please let me know and I will happily post it here to share to others. 

I have readers from around the world and it would be great to hear how others are doing. 

I would love to know if you are using Pine Bark or if you have found something else that is working for you. If you have had great vs. poor results when following any kind of diet or prescription.

Not many are talking about Darier's White Disorder so we might as well start up our own discussion and fight this together.

Thanks again and I hope to hear from you,

Adrianna

Info from a reader

Recently I received an email from a reader of this blog who wanted to share her insights about DD and specifically gluten diets. Her email about what a Doctor passed on to her about his observations:

Just about anything that is chronic. I have successfully used gluten-free diets for disorders such as ADHD, fibromyalgia, lupus, migraines, multiple sclerosis, rheumatoid arthritis, ulcerative colitis, microscopic colitis, psoriasis and even type 1 diabetes. The list goes on and on. I have even used it successfully for weight loss when everything else failed. If you have an illness that is not responding to medical intervention you have absolutely nothing to lose. Wheat, rye and barley may be the culprits. And, you can get far better sources of nutrients from other sources. There is absolutely no harm in giving a gluten-free diet a try—even with a child. I have a dramatic case of Darier’s disease that completely cleared with a gluten-free diet. I didn’t even know what this disease was. I called one of my physician colleagues and I researched it. You are basically born with this disorder and it usually manifests by the time you are a teenager. Imagine the worst case of psoriasis from head to toe. This man never wore shorts, tee shirts or a bathing suit until he went gluten free. This is an autoimmune genetic disorder that completely cleared on the diet. He stayed on the diet for the rest of his life and his skin remained clear. None of the medical treatments (some quite toxic) he received had worked.

What are your thoughts? Any insights into what is working for you?  In her email she also mentions that her photodynamic treatments have cleared most of her skin of the DD. My father has very bad Psoriasis and swears by going in the sun or a to a tanning salon to wipe out break outs on his body. No need for lengthy treatments (I mean we are celtic decent and aren't made to tan!) so he started at 15 seconds and worked himself up to 5 mins and he says that does him just fine!

I have remarked in the past that diet is a huge step in understanding why your skin is acting the way it is. So take care and nourish yourself, don't just feed your hunger.

A support group online?

So I came across this community while trying to find out more information about gluten-free vs. Darier's
http://www.mdjunction.com/dariers-disease

I am just now looking around it and wondering if you are online there too!

Do you have any experience with a gluten-free diet in regards to break outs? I would love to know!

Thanks,

Adri

Talking to Zoi

I like community, it helps us understand that we are not alone. I had someone email recently about their Darier's story - I like sharing emails here because not only is it strengthening community - it also is more question and answers we can share with others who have DD. 

Please meet Z: 

hi adrianna,  my name is Z and i too suffer from DD.  right now i am so upset and depressed because i have such a yucky outbreak that i just don't really want to do anything and i'm tired of hearing myself complain.  i have two awesome little boys and lately instead of being able to let go and have fun, i find myself thinking about my DD all the time.  

after the holidays, i am going to find a nutritionist or homeopath like you recommended.  is one better than the other?  i really need to figure out what is adding to my flareups in my diet.  i'm pretty sure dairy is lately.  now i wonder if wheat is.  i don't know where to start because i am overwhelmed with how to do it like you said.

i guess i wanted to ask you what you think i should eliminate first in my diet until i see a specialist.  

any type of retina just makes it worse and itchier.  i get so inflamed that i can't stop itching.

i am also going to try the maritime bark until i see a doctor.  of all the vitamins and supplements, and i see there are a lot of supplements, which ones do you recomment i on my own until i see a specialist.  

i look forward to hearing from you.  thank you.

Hello there,

Sorry for the delayed response - my personal life is in chaos (brother died and boyfriend left) and I don't know what to write to you other than keep trying different things. Read my blog as it has a lot of advice on these topics. I would see a Naturalpath and not a dietitian but that's me - they might work better for you! Dairy is a huge trigger for me as is sugar. The sugary foods dehydrate our already sensitive skin so be careful, the same can be said for alcohol. Talking to a professional will help.

As for the itch take warm (not hot) baths with a cup or two of oatmeal that you have grounded in a coffee grinder or something of the like - there's no need to buy special oatmeal bath pouches from the store - its just ground up oatmeal. It is really good for your skin and takes down inflammation. I like everything Aveeno - their anti itch is good - not great, because its all natural - so its nice but it doesn't numb your skin. 

Hi. Thanks for responding to my email. Sorry to hear about your recent loss. I just lost my grandmother a bit over 2 weeks ago. It was hard. I hope you are doing okay.
I have read your blogs and decided to start my own regiment of vitamins and I think it may be working. I haven't had an outbreak like this since I was diagnosed at 20 and I had to go on accutane. Did wonders but it was extremely drying. With this last outbreak, I was considering it because my entire chest and neck broke out and was itchy and inflamed beyond belief. Since I couldn't see my dermatologist for over 2 weeks, and still haven't, I researched your blogs more in depth along with others and have been doing it for a bit over a week. I think it is working. Although retinA is harsh on my skin and I'm forcing it to tolerate it, I am using it but not everyday. I do plan on seeing a natualpath to help me with dosages b/c I did it on my own. I just want to say THANK YOU for your blogs and the hope you have given me. On a good day, I take a step back and am thankful it's not life threatening, but when I am depressed, u can't help but feel pissed and sorry for yourself.
I was just wondering, how long have u been taking the vitamins and other supplements? Have u ever had a big breakout after being on the vitamins or do they suppress it pretty well. Just wondering and hoping.

I hear that! It's ok to feel frustrated and "pissed" - but not to let the negativity win out because that will lead to more breakouts :P Stress is a huge factor in this disorder I have found. I just posted about how you can make your own calming bath with oatmeal to help with break outs and flare ups. I'm just getting over one - so there is another answer: I do have break outs even though I am taking my supplements and vitamins. Stress can cancel all that out. I take an extra Pine Bark pill on those days and really look at my food intake as sugars and my other triggers will really hurt me on those days when my immunity is low or my body is stressed.

With yoga (stress relief: whatever you can do that makes you happy DO IT! movies, games, a walk, a swim...) and clean food, hydrating lotion, and vitamins I can get it under control in a matter of hours or days depends on how bad the flare up was. I am a woman so I also tend to get mini flare ups on my thighs, neck and sometimes face (where the initial break outs happened) during my "time of the month" as my body is stressed and hormones are everywhere.

Keep a journal. Notice when you have more flare ups - do they happen in a cycle? Is it a time of year (winter time for me = harsh dry season = more break outs!) After a certain food? After visiting a friend with a dog/cat/allergic pet?

I don't have the cure all. I wish I did - I could use the money for the distribution! haha - but with time and patience this can be lessened to a point that it is livable and most people just don't notice mine now.

Best wishes to all - and keep the emails coming!

DD Community

I have had some lovely people contact me over the internet regarding DD and I asked Nicole to share our emails so that what we were talking about may come out and perhaps help others with their understanding of DD.

Here are our emails unedited:

Hello again Adrianna

quick question - I noticed that you alternate supplements

the latest I read was

b6 b12 - 100 mg. daily

vita D - 1000 IU daily

pine bark extract - 30 mg. daily

every other day

zinc 15 mg. 

omega ( I am using borage oil and salmon oil) - do you have other favorites

calcium (how much)

vitamin C ( how much)

probiotics - ( I am going to try "Bio - K") do you have other favorites.  as I too can't have yogurt- dairy

Why alternating some supplements?  and other's daily? 

Thanks so much, I hope I'm not being to pesky with my emails.  

PS- how is the acting going?  I would never have the guts.  

Keep smiling, 

Nicole 

Adriannasemail@gmail.com

Hello :) I find that some of these are too harsh for my system to take every ...

Aug 24

Adriannasemail@gmail.comLoading...

Aug 24

Aug 24

2010

Hello :)

I find that some of these are too harsh for my system to take every day. Through trial and error I have found out that Vit E makes me break out - so why take it? I find that I eat a lot of fish so I don't need to take Omegas every day. Zinc is very heavy and hard to ingest so I don't have it everyday. Calcium makes me have white spots/calcium deposits in my skin if I take it too often. Vit C makes me nauseated if I take too much and I only take Vit A at night if I have taken Zinc as it helps to ingest it. Probiotics I am taking more frequently because I found a brand (the same as the Pine Bark actually) that doesn't go through my system like a laxative (hey you asked!)

Also there is the money issue - some of these things are expensive and they all add up - I'm a Canadian stage actor that isn't a well known - I don't have a medical plan and most of these wouldn't be supported anyway. So I have to make that call health vs wealth. Its a sad choice but true. This is why I haven't tried the Co q10 Enzymes - thankfully my list seems to work for me right now so its ok. If I find that my body changes over the years and finds this regime ineffective then I will try a new combo :)

Yoga, pilates, reiki, exercise and meditation also helps - its about relaxing your system as the Dariers is a reaction to stress on your body whether it be a tangible thing like food and medication or work load or any other stress - At least this is what I have found. My main food trigger is sugar - it stresses my system so I can't have too much of it in one sitting.

I hope this helps - I'm going to post this on my blog since it was a great question!

-------------------------------------------------------------------------

Nicole to Adrianna Oct 3 2010

yes, of course.  :) The supplements do seem to be helping - I still have a bit of rash, but it is much less itchy.  I've also incorporated Spirulina ("NOW" brand is great)  into my supplements regimen.  I did sneak some sugar - okay a lot of sugar and I paid for it later.  I'm also trying gluten free.  I tried gluten free (no wheat, rye, etc) for about six weeks and figured it wasn't making any difference and so I had my favorite wheat cereal and the itching was much worse for about 3 days after. You mentioned some foods on your blog and I find that foods do really make such a big difference. Thanks for your blog.  Seeing you be so proactive about this disease has really made me even more invested and hopeful in my research.

ttfn :)

Nicole  

First post here but not ever!

I used to belong to a website called skinpatientalliance.ca but it shut down so I couldn't get to my posts or reply or anything... So here is my own blog to help raise awareness of Darier's White Disorder or Dariers Disease or DD.

I have it. I'm living with it. And I'm owning it. Here's how I did it starting with the blog I had started back in 2009 - this will be one huge post but after this I hope to keep up the conversation here and at the new skin site called www.skinergy.ca where I am now logged on as Adrianna P

I didn't edit this - It has all the comments rolled into it that I received from posting my "blog" on their site. 

Enjoy and hope to hear from you!
 --------------------------------------------------------------------------------------

 Forum Post:

Darier's DiseaseView Edit Outline

I have posted in the "share your story" how I came to know what my disease is: Darier's Disease http://dermnetnz.org/scaly/darier.html

And now I wanted to start a discussion/blog on what I have been doing to try and live with it and try to "make it go away".

After being paraded around in front of 30 or so dermatologists this rare disease is not getting the time and effort I thought it should.  I was given Retin A cream and to stay out of the sun.  Not that much to go on and of course, nothing really changed.

I went to see a Natural Path at this clinic: http://www.ccnm.edu/?q=robert_schad_naturopathic_clinic  and instatly felt I had found a place where I was being treated as a human rather than just some neat disease that no ones really heard of.  True, they didn't know it either - but their enthusiasm and excitment (which was hilarious I will admit) at what the possibilities were to cure and aid me in my fight was what I wanted to see from a working group of professionals.

They started me on:

B6 complex 1x 250mg/day
Fish Oil  1 tsp/day
Probiotics
Vitamin D 500 mg/day
A hypoallergetic diet

because I have been on and off antibiotics most my life from ulcers, we believe I also suffer from a Candida Albicans imbalance.  This is why the probiotics and fish oil, but a strong immune and GI helps everything in your body - this is their reasoning. I also have been lactose intolerant since I was about 21 (now 26) and more and more food allergies are cropping up - so this also is to aid my growing sensitivities to foods.
The fact that it seems that the Darier's is affected by hormonal changes (it is written that a woman's cycle can make the rash more intense at certain times) is why the B6.

My team of naturopaths have taken all the info from my consultation and will follow up with me with what they find about Darier's - my lead Doctor there said this was "exciting!" and when I grimaced he said "oh not for you - but think, this is a learning facility too - everyone will want to work on it!" that made me happy!

I will return with updates, and please if you too are going through Darier's disease please post about your findings as this disease is eluding every health practitioner I encounter!!







General Discussion Ontario

Kudos for this blog post. You constantly publish a intriguing blog. I will return in future.
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Darier's
mary lou
I tried to post last week for the first time but it did not work, so I will try again. I am a 53 year old female and I was diagnoised with Darier's at the age of 15. On a scale of one to ten with ten being the worst I am a solid three. I have been to many doctor's and specialists and have tried all medications. (Accutane, Soriatane, creams, steriods, etc.) Soriatane has been the only thing that works for me. Last year I started reading the comments on this forum. Adrianna's postings were very interesting to me and so I tried her supplement suggestions and have had some good results so far. I have emailed her and she is always a good source of information and positive support.

I met with the head of Dermtology at Duke University and he was able to explain and discuss many issues with Darier's Disease. He told me that researchers have found the defective chromosone that causes the body to not be able to process the skin cells properly with Darier's and he also stated that the calcium pump in the body is also defective. I asked if we take more calcium will it help and he stated no. If you type in calcium pump and Darier's disease it will pull up information on this. He let me know that a cure for Darier's is a long way off. There are many other disease's that cause death in large numbers and most if not all patient's with Darier's live a normal life span. His hope is that research in other cures for higher priority disease's will lead to help with Darier's.

Along with Adrianna, I use Aveeno products and they are a god send. I also only use Cetaphil soap and take very short, warm showers. I wear mostly cotton clothing and use detergent that is free of all dyes and perfumes. I am carefull in the sun even though winter is my worst time. Stress is a major factor in dealing with this disease. Sometimes I think it is what others think and the questions they ask that makes us so stressed. The calmer I am the milder my breakouts are. As I reach menopause the breakouts happen less often, must be due to harmones.

I have been married for 30 years to a wonderful, understanding man and have two grown children who at the ages of 26, and 27 show no signs of Darier's. There are days when I want to pull the covers over my head when I am having a break out, but most of the time I live life to the fullest and just try to stay positive. As I told Adrianna, knowledge is power and the more we share information about Darier's the more we can help ourselves and hopefully others.

Thanks for letting an "Old Lady" vent!

Mary Lou

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Interesting post - thanks.
Interesting post - thanks. You always write a interesting article. Thanks!
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Ya definitely this is great post.now a days various types of disease are happening,such as hair loss and other skin related problems. Hair Transplants India is a place where hair falling and skin related problems solved by various surgeons so if you are suffering from hair falling and baldness than go for hair transplants on that center.

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Im not quite familiar with
Im not quite familiar with that disease. But its a good thing you've shared your experience. Thank you Get well soon

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look down, I posted twice
look down, I posted twice and there is no delete option!

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Its been a couple weeks...March 24
My follow up with the naturopath was mostly a physical check up - next time they will do blood and urine samples. They checked everything from thyroid, liver, kidney tenderness.

Then the phone rang: my pap came back for the 2nd time in 6 months as ASCUS. So I have that on my plate as well. For this they prescribed a caster oil pack, cod liver oil, estrogen lessening foods such as broccoli, cauliflower, dark leafy greens and brussel sprouts.

I have been on a hypoallergetic diet and am now reintroducing soy products (being lactose intolerant I need need need soy!)

I also just started reintroducing 500 mg of vitamin C and 1 capsule of high potency fish oil. And I am still doing 500 mg of B6, 500 mg of Vit D, and probiotics twice a day.

My retin-A cream ran out - and for 50$ a tube I am trying pure vitamin A capsules broken onto my skin and massaged. I will do this for one week and see if it gets worse/better. It has lessened in scaly-ness and less red bumps and the open sores have been gone for a couple weeks now. Its itchy a lot more too. I have flakey dry skin that needs exfoliating even though it still is tender.

A friend commented that her skin gets very much like mine when shes around wool - particularly scarves. Seeing as this comes around winter time aka when I start wearing scarves, I am going to see if taking wool out of the equation also lessens my neck rash. It is, and always has been only on my neck.

Will report on the vitamin a substitute

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April 8 2009 update
So this was my 3rd visit to the naturopath and this time I noted the following to them:

Vit A capsules broken onto skin doesn't do much at all except lubricate without stinging
My Vaseline Intensive Care Vit A & E are now burning when I put it on
My rask/bumps are moving down my neck past collar bones to my chest in a polo shirt V neck pattern. As well the left side of my face is now red and has minor bumps.
I re-started the retin-A cream for the past week and a bit and it is not taking away anything just yet. It is flaky and sensitive from this cream.

Naturopath said:

Vit A 1,000 IU daily is fine up to 10,000 IU for a shirt period of time should I need
Fish oil every day (I was rotating)
Vitamin C everyday 250 NOT CHEWABLE because chewable gave me cankers in my mouth!
Continue with B6 and Vitamin D daily with probiotics at meals.

Added: Zinc and Copper 1/day - as these both help heal damaged skin
peppermint oil should I need it for my stomache and bowl
Aveeno anti itch cream for use instead of polysporin

Watch: cashews and mangos - they are a part of the poison ivy family and I am already sensitive to mangos.

Taken away: Soy, I reintroduced it and viola, more rash? could it be the soy - I will test it. It was in my diet for 2 weeks and the past 3 days the bumps just keep coming. Only on my neck and chest though. **About 5 days ago 5 or so bumps on my ribs/midriff appeared - used retin A and polysporin and they died off...**

Think about: B12 injections as they can be very good for skin disorders and relaxing the body. it would be 11$/shot/wk

Also the ASCUS turned into a colponoscopy - which in turn saw nothing abnormal in my cervix - she thinks - and a BIG THINK - nothing definitive; that if my darier's is a skin disorder then it may be affecting skin cells throughout my body including the lining of my cervix.

I have started to take photos of my rash to try and log the changes. I do so at least once a week but I may do it more.

And finally I have asked for my fathers medical history and diagnosis of his psoriasis - if he had a biopsy or not as this disorder is autosomal - meaning it goes from generation to generation never skipping a line - so one of my parents has to have it or its not darier's - so I'm looking for a lineage of this disease in my family now.

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June 22 2009 Update
So I went to the Dermatologist for a biopsy with my dad - as he has Psoriasis so naturally I would have to assume he is the genetic link to my disease. the Dermatologist laughed and said "no he doesn't need a biopsy - you have the disease - he didn't give it to you! Your body made it for itself!"

WHAT?! Why would it do that?!

My brain has to theorize this: if my mom has moles, my dad has psoriasis then I have the genetic mix match of this and my body made a decision to go neither way but make up a new path = darier's white disorder?! GREAT.

So my dad was feeling much better but I was feeling lousy. The Dermo was explaining my brothers will most likely not have it. But we won't know until they are in their late twenties or early thirties. Just like me. But my kids, should I have any, will have a 50% chance of contracting this disorder. Great.

Since my last post I have had a really good reaction to the Zinc/copper. So much so that my Natural Path wants me to take it twice a day. I don't know if I can do that - its a mineral and its harsh! you have to take it with lots of food and even then I sometimes throw up. But my skin is looking much better with it. that and the fish oil is great. I sometimes take a vitamin A 10,000 IU at bed time (all with my cream from the Dermo: Retin A) and I like what I am seeing.

You can go here to see my skin results: http://www.flickr.com/photos/adriannap/sets/72157620223217212

I try to take some pictures every now and again to show myself I am in fact improving as its depressing to wake up everyday to it as I'm sure we all hate that skin regime to get out of the house...

I have also found that soy is not good for my skin nor my body in any large amounts. And white wine is going under the microscope as I had some at a party twice now and my skin freaked after both occasions - but I was at a party eating various things that perhaps I shouldn't... but the common factor was white wine. Red doesn't seem to affect it but that too will be looked at.

I haven't explored the B12 injections due to finances - but I'm still interested... Aveeno is my sanity! It doesn't sting - it is my cleanser, my body wash, my face scrub and soon to be my sunscreen - I LOVE IT! For anyone with a sensitivity this is for you!!

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July 10 2009
New pictures are up -

Since I'm now also working at the Tea Shop around the corner I have been reading up on tea and healing properties... I'm drinking a maple tea: http://www.davidstea.com/organic-maple.html which has zinc in it to help my skin and immunity. Also I have been trying this one: http://www.davidstea.com/night-out.html which has Vitamin A and olive leaf in it. Plus giving this a try for my all around health instead of coffee: http://www.davidstea.com/coffee-pu-erh.html it is akin to probiotics in a natural state - its a good cleaner of your innards and I know I need that!

talking to customers I happened to meet "Nadia" a pharmacist who got to talking to me because there was a book on the tea shop wall saying "Foods that Fight Cancer" which she scoffed at and we got to talking about how everything is connected: mind and body - what you eat and everything in between. She said I need to check out http://www.pycnogenol.com/flash/ at 50 mg once a day, http://en.wikipedia.org/wiki/Coenzyme_Q10 100 mg per day, and Omega 3's at 100 mgs twice a day.

I will look into those - and keep drinking tea! because I'm addicted already to tea so why not ones built to help me?

Still haven't braved the B12 injections...

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August 2009
If I had one thing to say it would be:

THANK YOU NADIA THE PHARMACIST! Since using Pine Bark extract or Pyncegol my rashes have all but gone away!!

I was scared because I had a vacation in LA and I didn't want to show off my lovely rash but I barely used make up and by introducing it into my cocktail of supplements I really think I have caught on to something really great for my skin!

I checked out the Encyclopedia of Nutrtional Supplements http://www.amazon.com/Encyclopedia-Nutritional-Supplements-Essential-Imp... and read up on what exactly is happening in my body that makes this a wonder drug...

turns out that the pine bark extract is a flavonoid - a PCO (procyanidolic oligomers) which means its a huge antioxidant and free-radical and works to deplete the destruction of collagen which is the support structure of skin and blood vessels in the body. Its antioxidant rate is 50x that of Vit A and E! So get out there and pick this up! either Grape Seed extract or Maritime Pine Bark - pyncegol has been branded so just look for what ever brand you trust and try these antioxidants. And research for yourself - flavonoids are what people rave about when they say Green Tea is so good for you - so look it up, its worth it!

I also found this interesting in the Encyclopedia & A-Z Guide to Drug-Herb-Vitamin Interactions....
While reading about my topical cream Retin-A :

"Severe cystic acne and disorders of KERATINIZATION, such as Darier's disease... or hyperkeratosis" it listed Darier's!! In a widely publicized book. Wow. That's a first. It says that zinc is an agent for Vit A to be absorbed, as well as Vit E. So my Vit A or Retin-A cream will work better with my body if I take my Zinc Copper balance - in other words I can't skimp out on the zinc :( I was looking for things to cut in my cocktail of supplements but it looks like the new mix is here to stay - with the pine bark! Also the PCO has no drug interactions! It truly is a miracle supplement!!

I find the pine bark can be taken whenever - with a glass of water or with food, and no where does it say that its a bad choice either way. Mean while Zinc will make me sick to my stomach and has made me dash to the lou if I don't eat enough. So beware.

Lessons learned:
Protein and zinc are necessary for retinal mobilization
Vit A needs zinc and/or vit E to work properly
pine bark is awesome. I'm taking 50 mg/day mid day - it says I can up it to 150-300 for therapy (which I have come to know as short periods of time) **I will have to talk to my natural path about this one...
Eat more dried apricots, chili peppers, kale and sweet potatoes, cherries and paprika - so says it for skin disorders
Read up on more Flavonoids like Quercetin as its an anti-inflammatory... it can be found in fried onions (yum!)
Look into introducing CoQ10 and Vit E

On a side note - I have purchased this awesome cookbook: http://www.amazon.com/Baking-Agave-Nectar-Ultimate-Sweetener/dp/15876132... because I find sugar makes my rash appear more pronounced (and it gives me headaches...)
**be warned - agave makes your intestines move and shake and you can't have too much at one time so I would recommend splitting the agave needs with buckwheat honey which was also recommended to me by "Nadia"

best wishes and let me know if you find anything fantastic!

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Nov 2009
It has been a whole year since I started this journey to find out what was wrong with my skin and later find out I was diagnosed with Darier's Disorder.

I can thankfully say I have a therapy that works for me and my skin is mostly clear of any signs of the disorder. Yes, I get flare ups when I'm eating improperly, overly stressed, or its that wonderful time of the month (eep!) but really day to day life is no longer filled with tears or rashes that ache.

I want to take a moment to thank everyone - who I have met along the way that offered support either in hugs or medicine, treatment or just a shoulder to cry on. Also to those I have not met or met yet that I hope this blog speaks to you and allows you to seek out treatments that work for you.

I have met several people living with Darier's from this blog and I hope to continue to do so - not that I like hearing you too may be afflicted but that we can be a community for eachother and keep ourselves informed and also encourage eachother to help ourselves find a way of life suitable to our own needs especially when faced with a genetic disorder.

Thanks again everyone.

Nothing new to report other than I'm in a play (yes I'm acting again thanks to skin that will again allow make up artists near it!) and I have slowly gaining my momentum and confidence that was dashed one year ago. *insert big smile here*

What I'm taking now:
b12 b6 100 mg each day
vit d 1000 ui each day
Maritime Pine Bark Extract each day 30 mg

Alternating:
zinc/copper 15 mg
omega
vit c 50 mg
Calcium supplement
probiotics

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Darier's Disease
I posted information on General Discussion maybe you would like to refer to it.My email address is sandy.b1@hotmail.com Look forward to hearing from you and we can compare our treatments with each other.Take care Best regards Sandy

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I too have Darier's Disease
I too have Darier's Disease and I am going through an outbreak at the moment which is my worse yet. I am 36 years old, had my first symptoms at age 13 but diagnosed at 22. From your pics, the pattern of mine is almost identical to yours and those pics could easily have been of me. I would like to email you rather than talk over the forum. I have tried so many lotions, creams, pills- we could compare notes. If you would like, I would email you. Thanks.

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of course!
you can email me at adriannasemail @ gmail . com

hope to hear from you! and I'm posting some great stuff I have learned right after I click send on this!

all the best,

Adri

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December 2009
A new photo is up on my flickr: http://www.flickr.com/photos/adriannap/4192307445/

Still in the clear! I do have occasional bumps but no rash like I had last year. I remember it being painful to wear anything with a collar - but that I wanted to so I could hide the rash :( This year is different! And I hope it is with you too!

I keep getting emails - and I love it! I am so thankful to be able to pay it forward! If you have Darier's the best advice I can give is keep trying - keep reaching out for more answers because it is such a little known disorder and doctors can get flustered by the lack of documented cases. I also suggest taking down your stress levels as stress will only make you flare up. I know I know, it's the motto for life right? Destress. But yoga, a good book, a comedic movie, a healthy dinner - anything that makes you destress or puts you in a relaxing mood will help! So around this time of year it may be that the bumps flare up because we are eating overly sugary foods or that we haven't done our xmas shopping yet - all stress. At the end of each day allow yourself to be relax. "Leave it at the door" as many directors say; it won't be there tomorrow so let it go.

Now I sound like a guru or something. I hope you can take from this blog what you will. It was also a way for me to destress. A way to let me let go of my frustration with my skin.

So Happy Holidays and here is to a rash free New Year!

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January Winter Blues
I have started having email conversations with some of you lovely people who have read my blogs over the past year. A Mary Lou writes that she has intel about calcium and Darier`s. I hope she can log in soon to talk about it as I think I need more information about it before I blog about the correlation. But I am intrigued as I have always had a strong reaction to too much calcium in my system - to the point I get zit-like peaks in my skin especially on my face (gee where did my Dariers first appear?) and they slowly disappear. I cant attack them like popping a zit or wash my face enough, and it is definitely around calcium as I have logged it in my books. That and Vit. C I don`t get along great with but I must take supplements because I dont eat/drink enough of them.

My back has now been a canvas for Darier`s - no picture as its hard to photo your own back! But it was a light inflammation due to what I can only conclude is from a holiday season of sugary foods, too much alcohol (which is terrible for my Darier`s as there is dehydration and sugar jammed into a lil wine glass) and such stress dealing with family and recent events.

I also started taking my clear skin for granted and lessened my regime of pills. I am back on Pine Bark everyday and B, D, alternate C, Omegas occasional, and Vit A - which ran out in December and I just shrugged about it. Mistakes were made. I am just thankful it wasn`t my face and neck that blew out of control.

So I`m back to yoga and exercise. Water and supplements daily. I also still enjoy tea - but for every cup of tea I have a cup of water as it can sneak away hydration from you and caffeine is a fiend as well.

So yes - the moral is - DO NOT fall under the spell that your disorder is just going away. It is not. Stay on top of your own health and take care. It is work. But the reward is totally worth it!

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March 1 2010
Like I didn't already know but: I have had a relapse of symptoms but its funny how I can pin point where it stems from since I have had such a good study of myself and all the effects "things" have on me...

I drank white wine in abundance at a friends dinner party. I have forgotten to renew my supply of pine bark for 5 days (life got busy!), because life is busy = more stress, I ate butter by accident (thanks restaurant that lied to me) and my digestive system has been stressed because of it.

All these things led to me getting a break out on my chest and back. Interesting how it didn't reappear on my neck. Though I have be noticing if something is scratchy or its too dry my skin goes red very quickly and stays red with bumps. I would say more so than most. It is the winter time when its much dryer and the cold winds don't help - as Mary Lou was saying above - Winter is my worst time of year.

The lesson learned: don't skimp out on Pine Bark or whatever works for you. AND remember that everything is connected so do yoga or meditate or watch a funny movie - stress is a major factor in this game.

Hope you are all doing well ~ until next time!

Adrianna

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Pine Bark
Adrianna,
I have tried this for almost 7 days and i have notice a small improvment in the rash on my neck and the rest of my bosy seems to itch alot less, I found an over the counter cream with pine bark extract in it, it was 26.00 us dollars so i didn't buy it but my mother surprised me with it today, i will post my results after a weeks use. I have found your blog very helpful and it gives me renewed hope. Thank You for saring.

Cindy

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mary lou Hello, My surgery
mary lou
Hello,
My surgery went really well and it had some interesting results for Darier's. They put me on mega doses of vitamins two weeks before the surgery and they contained B6, B12 and the usual D,A,E,etc. Granted it was in high doses but what a difference it made in my skin. The surgery also included lasers and to my surprise the Darier's is now not visable in those areas as it was before. I am going to wait to pass judgement on if the laser was the reason. I am staying on a lower dose of the vitamins to see if they continue to help. They come in a pack distributed by doctors, it is called Vitasurge. My skin has never looked better. I am also using a line of skin products called Revision. The doctor recomended them and they are so far great. But as we all know time will tell. I am still using Aveeno as my daily lotion. I take short warm showers and immediatly put the Aveeno (oat essense) lotion on all over. If I do that everyday without fail things are much improved. Like you say, you have to manage it everyday without fail. Can't wait till summer!

Mary Lou

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SO good to hear that your
SO good to hear that your surgery went well AND that you had some bonus side effects! I find that the high doses do well for my skin too - I still have to see a Natural Path to see if this will hinder me in the long run though... Have you talked to a sustainable amount for skin therapy?

I have never heard of Revision or Vitasurge but thank you for letting us know ~ I will look into them for sure: taking individual doses can be really annoying at times but the results are worth it...but if there is a compact version of what I take daily...

I found the note the "Nadia" lady gave me with the dosages she recommended that finally led to my remission of sorts - I am nervous to call her and tell her that she is in fact my own personal goddess! I'm thinking of giving her flowers or something. What would be better is if this site hosts a get together in TO I would love to call her and have her speak about what she has learned as a pharmacist. She is obviously very skilled.

Thanks for sharing and I hope to hear more great news from you and everyone else!

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mary lou Hello, I hope this
mary lou

Hello,

I hope this finds you feeling well. The weather has turned warm and I am so glad for that. Still doing well from the surgery. I am still taking the vitamins and using the products that the doctor recommened with good results. I would love to have Nadia at least correspond with us. I am not sure if that is allowed by her company due to regulations (malpractice). As I have said before knowledge is power. The name of the vitamins is VITAMEDICA, I had it wrong on previous post. I do believe the relationship between laser use and Darier's clearing is there but would like to see more research information from doctor's. I hope we all have a free and clear summer!

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Happy sunshine in a sun hat to you too!
I just looked up that line of vitamins: VITAMEDICA; http://vitamedica.com/ is it the Healthy Skin line he recommended? It looks interesting and promising if you are having good results!

I just had a lovely letter from Maria and through our correspondence I turned this up:
http://www.tomsofmaine.com/products/deodorant#/?page=Deodorant it's a deodorant that my friend swears by and could be good for sensitive skin such as ours. I have yet to try it as I'm still ok with Ivory's "sensitive" skin line for under my arms.

Also a reminder that if you are in Ontario you can always call Telehealth 1-866-797-0000 TTY : 1-866-797-0007 (now they will probably be mind boggled by our story of Darier's!) but you can talk about mixing pills/vitamins/supplements and how to deal with the sun effectively in your own way. What works for me may not work for you! So keep talking and asking questions until you find your answer.

I also saw an ad for this: a sunblock spf 100!! http://www.helioplex360.neutrogena.com/?utm_source=n_com&utm_medium=refe...
(theres even a click link for a coupon) I think I may try it - I have to buy some anyway - though I do like Aveeno's spray 45 or 60.

with a follow up from Oprah ;) http://www.oprah.com/health/The-Benefits-of-SPF-100

And don't be lazy! I have been drinking summer patio drinks already and the sugar is taking it out on my skin - and buy some new sun hats, there are some great ones at Winners right now in Canada - now I have 5 :) My fav is now a huge tan and white floppy that extends to my shoulders! What's your favourite?

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Calcium
mary lou
Hello,
I hope the summer is off to a good start! I had a bone density test last week and it showed signs of pre stages of osteoporosis. My doctor started me on calcium and much to my displeasure it has caused my Darier's to flare a little. Has anyone else had this experience? I am seeing her in two weeks and have stopped taking it to see if the flare up goes away. I was doing so well up until that point. Oh well so the journey continues!

Mary Lou