Beyond TSW : Autoimmune Protocol + Histamine Intolerance

Since starting TSW in January, I have had a sense that I need to do more for my body than simply "stop steroids."  Not only does it make sense that the human body will heal faster, and more completely, if given the correct fuel (food!) but, considering my own story, I've still been trying to pull the puzzle pieces together to find an exact cause/remedy for my original skin issues.

As I've mentioned in previous posts, I've always had minor skin issues, but things really spiraled out of control about 2.5 years ago (at a time when I had not used steroids in years!).  I was not a "regular" steroid user until these unexplained (and terrible) rashes starting appearing in my adulthood.  For this reason, I am not satisfied that I will heal completely from stopping steroids alone.  For me, it's just Step 1 in a process.  As I've been undergoing TSW, I have been in a constant search for more information about how to heal my skin issues and also heal all of the other damage that the steroids did to my body (besides the skin).  I believe that I am finally starting my journey down the correct path to healing my body completely!

To preface, I had previously started experimenting with the GAPS diet, but found myself having horrible reactions to leftover broth/soup, so I abandoned ship.  I know now that my reactions were histame-related (more information on this below).  Although the GAPS diet did not work for me, specifically, I still believe that it could be an excellent approach for healing for others.


Instead, I am embarking into:

The Paleo Approach: Reverse Autoimmune Disease and Heal Your Body, by Sarah Ballantyne, PhD (her website: The Paleo Mom)

For those who know me, they know that I've eaten a mostly Paleo diet for over 3.5 years now (by mostly I mean 90-95%).  My diet has been fairly clean for a long time now, so parts of this approach are nothing new to me. However there is A LOT of information that I a.) did not know, b.) now understand the importance of incorporating for my own specific healing process!  On the whole, her approach is a bit more strict than "normal" Paleo, but for good reason!

Here's the rundown:

Besides the normal NO grains, NO legumes, NO dairy, the diet also excludes:

• eggs
• nuts
• nightshades
• coffee (of all the foods I am avoiding this is actually the saddest part for me)

Now that I'm not medicating myself (with steroids and only using antihistamines when absolutely necessary), I am also learning that I have a very severe histamine intolerance.  (Interestingly, The Paleo Approach also has a section about histamine intolerance outlined in the book!)  The great thing about not medicating yourself with drugs is that you can actually listen to your body and what it's telling you about the foods you eat.  

Therefore, I am also excluding the following foods (which are allowed on the normal Autoimmune Protocol, but should be avoided if you have histamine intolerance):

Veggies:

Spinach

Avocado

Fruit:

bananas

grapes

oranges

pineapples

strawberries

tangerines

Fermented anything (meats, sauerkraut, etc)

Leftover meat (histamine levels rise A LOT once a meat is cooked/leftover)

Pork

Certain Fish (there's a whole list of types of fish to avoid due to histamine content)

Green Tea

All alcohol

Christopher made this list for me as a guide (it's hanging on our fridge).....

One thing I need to change about this list (besides the Green Tea that I crossed out), is Chicken.  Chicken is allowed, but shouldn't be as much of a staple as red meat which has a better balance of Omega-3's, etc.

Instead of feeling overwhelmed by the list of "Foods to Avoid",  I am feeling empowered by the "Foods to Eat" list!  It's limiting, sure, but there are a lot of delicious foods that I am allowed to eat so I'm focusing on those!

So far, I'm almost a week into this diet.  I had a few mess-ups during the first 2 days (both histamine-related) so I got off to a pretty rocky start.  Hopefully I've gotten the mistakes out of my system so I can proceed with the healing.  Within the next few days, I'm going to try to post my day-to-day diet on here to start creating a log of my food intake.

To wrap things up, it feels really good to take your health into your own hands.  Everyone undergoing TSW probably understands this at least in part (we're all going against the advice of our doctors to try to heal ourselves, aren't we?!).  For me, gaining my health back does not simply boil down to "stop steroids," I believe it's going to take more than that (especially if I want to avoid having to visit ANY doctors' offices for a long, long while).  I never understood the desire for "true health" fully before--even when I was eating Paleo prior to my skin condition!  Health has so much more meaning for me now than simply "being skinny."  And now, it's even taking on more meaning than "clear skin."  I want to take care of my body and not abuse it in anyway; I want to help my body function at it's highest levels.  For me, it's taken a debilitating circumstance to knock me upside the head so I can learn about real health.

More soon!

sad face weekend.

Big Flare #3 happened this weekend. I had a bunch of plans for the weekend but ended up staying at home almost the entire time.  It hit me hard on Saturday morning when I woke up.  My face/neck/chest was broken out in those curious little dots again, the texture was quite rough, the color very inflamed and it stung like crazy to even move my neck in the slightest motion.  Thankfully, the rest of my body wasn't effected.  Saturday felt the worst, Sunday was a tiny bit better and today I'm a little better yet, but not quite out of the woods yet.  Last time, if took about 4 days until the flare disappeared entirely and it left me with even nicer skin than I had prior to the flare.  Fingers crossed that my skin is even more beautiful yet in a few days!  Overall, I can't complain, as each flare feels less intense.  Even though I hate the flares because they mess up my plans, it's a great reminder that ultimate healing IS COMING!  My body is doing it's job really well and is trying to get me back into a state of healthiness!

It seems that my large flares coincide with my menstrual cycle.  My 2 previous flares happened a day or two before my cycle started; this time it happened a day after it started.  I guess it's good to see a pattern starting to happen.  We'll see if that trend continues.

One other issue that made my weekend even a little more sad.... my closet shelf fell in the middle of the night (and right after I had ironed 4 of my dresses).  What can ya do.

95 Days: no huge complaints. just little ones.

95 days already?

Overall, my skin has shown a general improvement since the beginning of my TSW.  The texture of the majority of my skin is generally soft and smooth (it was formerly very roughly textured).  Somedays my skin sheds & flakes a lot, other days not so much.  I still have a general (and unnatural) "pinkness" to my coloration--some days it's worse, somedays it's not so bad.  Although I feel like things are continuing to look up, I'm not seeing any dramatic improvements like I saw last month; I seem to have hit a plateau.  Most days my skin looks/feels pretty much the same.  I guess that's a good thing?  But I'm still craving the dramatic improvements.

Despite all of this, the itchiness has been uncontrollable lately.  I'm constantly crawling in my skin even though it looks/feels generally better.  It's so awful.  At least my itching no longer rips my skin apart, as the skin is quite strong. I'm taking a 10mg hydroxyzine pill every couple days to cut down on the itchiness.  But the itchiness is actually waking me up in the middle of the night now.  Although I was very itchy before, the itch actually seems much worse now?  I don't understand.

I did have 2 more bouts with herpes recently.  Two weeks ago, I had a few sores appear on my chin, which went away within 5-6 days with the help of an antiviral.  Then this week, I had some appear right around my left eye lid.  That seems to be under control again, thankfully.

Ehhh.  The itchiness makes me want to stop writing.  I'll try to update again soon.

The difference of a few days.

Just wanted to post a quick update with a photo to show how quickly the skin changes when you're undergoing TSW.

Compare this photo to my photos from just a few days ago when I was flaring...

Not nearly as bad!  Woohoo (for now at least!)!

Rough, itchy week.

I haven't updated in a while primarily because things have, for the most part, been going pretty well.  For the past month, I've been able to live my life mostly normally with moderate comfort.  I haven't had to call off of work or cancel any plans and I haven't felt unwell enough to let my skin stop me from doing the things that I've wanted to do.

In comparison to how well I've been doing recently, I did, however, have a bit of a rough week this past week.  The itching, which had been fairly moderate recently, came back with a vengeance this past Monday and is still going.  Despite the itching, my skin looked pretty good for most of the week but really took a turn for the worse on Friday and Saturday (yesterday).  My neck/chest area has broken out in the same little bumps that I've experienced in varying degrees all along.  This time, however, the pus wasn't the same clear liquid that I had before.... it's more of a solid (like acne).  Gross.  WHY?!

Yesterday was possibly the worst day to look & feel so awful--I had a gig playing piano for a Purim celebration down the street.  I was front-and-center before the eyes of hundreds of strangers.  Ooooph.  I covered my neck with a big scarf to make my rash less visible and that helped me feel more comfortable, emotionally. 

Here's a few pictures from yesterday before I left for the gig:

Still trying to dress well despite the skin.

When I got home, I immediately started a Dead Sea Salt bath and hopped in the tub.  It felt so soothing after a long day.

So far today, I'm hanging in there.  I'm fasting this morning-afternoon to see if it helps my skin at all.  I also drank some edible clay to help detox a little bit.  Hoping these things will help relieve my current symptoms somewhat.  It's good for the body, anyway, so it's a healthy thing to do regardless.

This really makes me wonder about flares.  Is it just a natural cycle that happens regardless of anything?  Is it food related?  Is it related to the menstrual cycle at all?  These are questions that everyone undergoing TSW deals with.  Why are there no real answers yet?!

At any rate, I'm still very happy to be off of steroids.  At least now I can try to listen to my body's natural signals and figure out what it needs on my own.  Just hoping that this current thing settles back down a little bit. 

No more restaurants for a while.

Today I went out to lunch with some friends; it was so nice!

Sadly, however, I'm noticing a trend: every time I eat food at a restaurant my skin becomes very hypersensitive within an hour of eating and the little bumps on my face/neck/chest become inflamed and BURN!

Perhaps it could be the oil that they cook the food in?  I just can't say that I understand it at all, but it's happened too many times for it to be coincidence.  I'm just now realizing.

Sometimes the burning only seems to effect me for a few hours after eating, but sometimes it lasts for a few days.  I hope this isn't a long one.  I was just starting to recoup from eating out last Tuesday. :(

No more restaurants for a while.  Just good ol' home cooking for me.

Ouchers.

Feeling feminine by dressing with style amidst TSW

Throughout this whole TSW experience, I've been trying to stay as positive as possible (sometimes with more or less success).

One way that I've been trying to accomplish this is by dressing well.  It might sound silly to some folks, but I'm sure that everyone undergoing TSW feels self-conscious and even a little embarrassed at times because we don't look "normal."  My skin makes me feel anything but feminine, so I've been trying to compensate by wearing clothes that make me feel a little prettier but also feel comfortable for my skin.

Tying my hair up in a cotton scarf has not only helped me to feel more comfortable--no hair touching my face or neck--but it also makes me feel pretty depending on how I tie it.

I've mostly been tying it like this when I go out:

I usually tie it like this in the evening because it feels a little more sturdy on my head (also looks a little more house-wifey):

All of the clothes that I've been wearing are cotton. I've mostly been wearing dresses with leggings.  It's very comfortable but it also feels very girly.  Since most of my dresses are short-sleeved, I have a ton of cotton cardigans to cover the sensitive skin on my arms.  They also keep me warm during this cold weather!

In addition to the scarf wrapped around my head, I've also been wearing a scarf around my neck.  Double scarf!

A little Bohemian, perhaps?

On days that my neck feels less sensitive, I might try to go without the neck scarf.

(I guess my dress makes me look pregnant?  I'm not pregnant.)

Like I said, this might seem silly to some folks, but TSW is so difficult because we're not just dealing with the pain and discomfort of our ailment (which is awful enough!).  We're also dealing with our physical appearance being altered.  We neither feel or look like ourselves; both of which take a huge toll on our ability to cope.  I'm finding that it helps me mentally when I pay attention to dressing well, even when I'm feeling my worst.