Update: A New Autoimmune Disease

My platelet count was re-checked today, and they were at 8,000. For a refresher, last Monday they were 10,000 and Friday they were 18,000. Mistakenly, we thought that the 18,000 mark was a sign that they had "doubled," and were on the rise. Turns out that that is also a terribly low number, and once you're that low they bounce around in the neighborhood of eight to twenty thousand, depending on the hour of the day they draw the lab. (Wish I would've known that last Friday, ha!)

So after speaking with my doc, the good news to share is that still and again, my bone marrow looks very healthy (woohoo!). There are no problems and no issues with it, my body is making it just like it should, and that is all well and dandy. The bad news is that this low platelet thing is not because of anything else (bone marrow issue, lingering virus), but a new autoimmune disease: ITP. Idiopathic or Immune Thrombocytopenic Purpura. As my doc explained, it used to be called "idiopathic," as in, "We don't know the cause." Nowadays it is considered an autoimmune disease - the body attacking itself. When I asked if it was indeed ITP that I have, and he explained that history, I laughed and said, "Well at least they blame it on the body now, instead of saying, 'it's all in your head!'" That's good I guess :)

I explained that possibility in my last post. Not much more to say about it, other than I am going to investigate around my Paleo sphere and see if anyone out there doing Paleo AIP (Autoimmune Protocol) has this too!

I will get a call from the infusion center tomorrow, about starting the treatment for this: a weekly shot of Romiplostim. It will stimulate my body to make more platelets, so that even with my spleen destroying a bunch through confusion in my immune system, there will be enough platelets to have a healthy, clotting blood and not at risk for hemorrhaging and such. That's a good thing!
They would not normally proceed to this step right away, because the traditional treatment is to remove the spleen. But they do not like to do that in people with liver disease (such as myself). The spleen's function is so important, especially with a compromised liver, so I appreciate and understand that. I have been such a pincushion lately, I am grateful I do not have to undergo a major surgery right now :)

I'm certainly not looking forward to these shots, and haven't even begun to consider how we'll afford the bills - ah, patented Rx drugs, how expensive you are... and just when Hubs and I are starting to plan our first vacation ever.
But I am looking at this as a temporary set back. It is so important to keep that mindset in the tough times of life - battles are temporary, rough patches are just seasons. We must never forget that we have the victory through Christ, and God always has our best in mind. This is just a chapter; this is not the end of my story!

Jesus has a purpose for me, and for this chapter - just like all the chapters each one of us walks through in life.


So many of you are praying and believing with me - thank you for that! Here is the most specific thing you cam agree with me on: that my immune system will be healed, and begin to function the perfect way it was created to function - fighting off the bad, and leaving my body (the good!) alone! It is amazing that the confusion and "misfiring" in my immune system is the root of ALL (yep - ALL!) my health issues. My immune system set up attack on my colon (ulcerative colitis), my bile ducts in my liver (primary sclerosing cholangitis), my joints (polyenthesitis), food and other things in my blood (leaky gut, allergies, intolerances, asthma). When my immune system in healthy and whole again, I will be a new woman!

Thank You God for abundant life, no matter what the situation looks like - John 10:10.
Thank You for giving me the power to choose my response, and the grace to choose JOY today  :)


And thank you to my beautiful friend Emily, for reminding me of this truth:

So we’re not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us. There's far more here than meets the eye. The things we see now are here today, gone tomorrow. But the things we can't see now will last forever.
-2 Corinthians 4:17

Zinc Carnosine?

I checked out a few books from the library this week, including Kelly Dorfman, MS, LND's What's Eating Your Child? Not for Baby V - she is healthy is can be, thank You Jesus! But because it looks interesting and possibly helpful for my own health crisis situation. Kelly has a website as well, I just discovered: What'sEatingYourChild.com

In a chapter titled, "The Toddler Who Could Not Stop Spitting Up" Kelly writes about something called Zinc Carnosine, which she recommends for children recovering from reflux and dairy-induced stomach problems. She uses this in combination with probiotics, once parents have removed the irritating food (usually milk protein/casein in this case), to heal the damage.
On page 81 of the book, she writes, "Zinc carnosine is a little known gut repair product that has been thought to improve gastric health, specifically, the stomach lining." So of course I jumped right onto Google and typed in "zinc carnosine  leaky gut." Here is what came up: Search results.

I've never heard of this stuff, and it's possible it could really help! Hmmm...
I am on a quest to be well, and I love when nuggets like this get dropped in my lap. We have to do our best, and God will take care of the rest.

Well, off I go to read some more. (I am now seeing why I don't usually take the opportunity to rest when Baby is napping - I'm always finding something new to research, read about, and learn! NERD ALERT!)

P.S. I'm making no claims here, I'm no health professional, and I cannot be held responsible or liable for your decisions regarding your health, supplement intake, diet, etc. - as my disclaimer at the bottom of the page also states.

"Diet" Labels, What's Up with Me, and the Bottom Line Goal: Health!

Truth be told, the longer I follow this "Paleo" way of eating, the more I think about my blog, recipes, and life being stuck with a label. And that bugs me. I don't want to be labelled or stuck in a box - by myself or by anyone else. As my profile says, I am on a journey to reclaim my health by eating the foods I'm truly meant to eat. Whatever label popular culture may choose for how I eat, my simple aim remains: to cook and eat real, nourishing, healing food. I think the tendency to need to label everything is a sign of our society's food insecurities and the confusion surrounding what is truly good for us. For instance, as children, most of my generation was taught, "MILK- It does a body good," and these days whole wheat breads and pastas are touted as full of nutritious wonders and the key to a flat belly.
But I bet you know at least one person in your world who has discovered that they are gluten intolerant, or feeling better not eating dairy, or encountered some other food lightbulb experience, and this puts the FDA guidelines - that tendency to push a "one size fits all" diet on every American - to suspicion.


Personally, I tend to go to extremes with things, specifically when I hear about diets that have 'cured' people of their autoimmune disease. I get so excited! About the possibility of being well without medications, and empowered by the information and personal stories of recovery. But (after living and learning a bit) I recognize that extremism is not a healthy way of living. For one thing, it puts the entire burden of failure or success solely on your own shoulders when you are your own coach and critic. Especially with dietary changes, I am learning that everything is not black and white. I am learning that we have to listen to our bodies and consider that we each have our own unique sets of genetic material wired just so, to make us who we are. So what works for your BFF/trainer/blogging idol may not work for you. And... that is okay.

Wouldn't it be easier if I could just follow a black and white plan straight from the pages of a book? Heck yes, and I daily wish that would work for me! (For the record, I'd choose this book or this book.) I believe that food changes alone work for many people, to bring about needed weight loss, relief of joint pain, slow aging, recover energy, and so on. There are testimonies like that all over the net. But throw the factors of a leaky gut, autoimmune disease, food intolerances and chronically damaged and inflamed tissue into the mix (yeah, that's me), and it becomes quite a large Clydesdale horse of a different color...


I am very passionate about making dietary changes before turning to drug treatments that have potential adverse consequences. So when I see someone struggling with disease, I usually think, "I wonder if they've tried changing their diet... if they've tried 'going Paleo'... if they've tried..." This is because changing my own diet has helped me - specifically eliminating gluten, dairy, eggs and soy because my body is intolerant to them, and recently grains and legumes as well, because I have learned by trial and error that my guts do immensely better without them. Once I read about the damage that grains, legumes and dairy do to your guts, it was easy for me to let them go. This is the main reason our family has "gone Paleo." The two special people I live with have great health, and we want it to stay that way!  :)


On the other end of that, however, I have still not reclaimed my health. I am still waiting to find my own personal "perfect diet." I would like to say that kicking the SAD (Standard American Diet) to the curb has cured my Ulcerative Colitis and other junk. But it has not [yet...?]. In fact, this week has been so tough that I'm considering calling my GI doc and giving Prednisone another try if he thinks it will help. Because feeling like garbage is no way to live, and there are times when modern medicine needs to embraced as a gift of modern life, just like cell phones and the internet. [About the internet: Where would all of us blogging about special diets and diseases be without it?! Much more isolated and hopeless, I propose.] I really like my new GI doctor and it wouldn't be a negative experience to go see him. I'm trying to teach myself that even if I don't want to go on new meds, if something changes in my condition I should keep my doctors filled in on how I'm doing and at least see what my options are.


I'm also re-reading Breaking the Vicious Cycle and trying to muster the drive to re-try the Specific Carbohydrate Diet (SCD). I tried it  two years ago, and it helped to some degree. I stopped it before I knew that I was intolerant to dairy and eggs, so odds are it will go much better this time around, knowing that! I don't ever choose drugs first off; I always try to find another route.

Speaking of helping ourselves by making lifestyle and dietary changes, I came across this piece today, by Kurt Harris MD. I highly suggest you read it! I love his gentle but encouraging suggestion for his twelve steps: "Go as far down the list as you can in whatever time frame you can manage. The further along the list you stop, the healthier you are likely to be. Earlier steps, in my clinical experience, will give more bang for the buck."
Personally I am working on the very first step - SLEEP. Easier said than done for anyone, whether you've got a new baby at home or just love a busy life or get stuck on your to-do list so much that sleep takes a back seat!


If you've read this far without moving on to something else, thank you! I'll wrap it up. So all the aforementioned rambling to say, I don't want to hang onto a Paleo label at the expense of reaching someone with the potential of real, nutritious food. I don't want to come across as 'another diet extremist' and scare people off. I want to keep blogging because I hope - like so many blogs I've come across in my journey - that my sharing is encouraging and helping someone out there.
But just know, whoever you are my readers, that when I say "I love eating Paleo"  it's not to belong to some superior food-obsessed clique.  I think that the heart of the Paleo/Primal/Ancestral/Nourishing Traditions food movement is to embrace life at its fullest by embracing the foods that God put on the earth and meant for us to eat. Real, whole, unprocessed, unrefined, colorful, rich, nourishing, hope-filled foods.
On that note, I am going to keep my "Paleo" label for recipes because it simplifies things for my own organization. I know that when I've labelled a recipe "Paleo," it does not have gluten, grains, dairy, casein, soy... the big ones. But it is not an exclusive or inclusive label, because there are several interpretations of what constitutes "Paleo."

Paleo "Apple Pie"

I deserved a treat today!

It was a long, uncomfortable weekend.

I visited an allergist on Friday, where I almost walked out twice because of the "culture clash" as the doctor described it. Note to Doctor, when you start off an appointment by saying that you "don't believe leaky gut syndrome exists," this really alienates your patients that attempt to be informed. Just because something isn't written up in your favorite medical journal, does not make it quack science.

I struggle with the resistance in allopathic medicine to listen to theories about the root of disease; I would think that a physician, someone who works in a helping profession, would at least be mildly curious about what is truly helping people (i.e. treating autoimmune and allergies by treating leaky gut with the Paleo diet, SCD, going grain-free, etc.)! OH well. I left on a good note, feeling like I planted a seed of awareness, and the doctor seemed to be mildly intrigued that my inflammatory and autoimmune conditions improved when I eliminated the reactive foods on my IgG panel two years ago. That's all you can do sometimes, is plant a seed. Much better than walking out and giving up :)

The doctor did run two allergy panel skin tests for IgE reactions. As far as the results are concerned, I only have true allergies to grass, weeds, cats and milk, and less significantly to peanuts, almonds and soy. 

Unfortunately my body says otherwise.

What seems to have happened is that I absorbed all of the substances that they injected me with for the test (wheat, milk, egg, soy, pollens, nuts, and so on...) and because I have IgG allergies to many of those things, it's been a miserable time.

I am finally coming out of the allergy fog, and feeling less stiff and enthesitis-y. 

Yes, I just made up a word  :) 

I finally felt a bit like myself again!

So I made Crock Pot applesauce. 

And then I made Paleo "Apple Pies!" 

(I suppose by composition, they are more like cobbler, but whatever.)

 These treats are something I came up with during our first month of eating Paleo, and I think you'll enjoy them quite a bit!

What you need:

First-

5-10 pounds peeled, cored, sliced and washed apples

1/2 cup filtered water

2+ tablespoons cinnamon (+ according to taste)

Later- 

almond meal

coconut cream (sold in cans or small aseptic boxes)

What you do:

First- make a batch of applesauce. This is easy to do!
You just need to adjust the size of your slow cooker and the cooking time depending upon how many apples you are working with.
For ideal cooking, the insert will be at least 1/2 full.
I used my six quart Cuisinart slow cooker and it was about 4/5 full of Braeburn apple slices.
I use a nifty apple corer/peeler/slicer gadget that we got as a wedding gift, and it makes this whole process fun and fast. I highly recommend getting one if you make applesauce often!

Fill an appropriately sized slow cooker insert with the clean, peeled pieces of apple.

Sprinkle cinnamon over the apples.

Pour water over everything.

Put the lid on, set to "Low" heat and let cook until apples are breaking down, water has absorbed and cooked out, and applesauce is the consistency you desire.

(I let mine go for six hours.)

Depending upon how long you cook it and how small your apple pieces were to begin with, you may want to mush applesauce with a potato masher to get a smooth texture.

(I leave mine as is; it's so soft the small chunks don't seem to matter.)

First, dish up some applesauce for yourself and whoever is with you, and make some "pies." 

Then store the rest: spoon applesauce into sterilized glass jars, let cool in the refrigerator overnight, and freeze. 

With just fifteen minutes of preparation and six hours of cook time, I have six jars full of fresh, homemade applesauce.
The ingredients cost under $5!

Making things homemade is a great way to save money and ensure your family is eating good food
without creepy preservatives or other undesirables.

For "pies"-

Spoon approximately one cup of applesauce into serving bowls. Scoop on one or two spoonfuls of coconut cream in each bowl, and sprinkle almond meal over the top. Coconut cream has a strong coconut flavor on its own, but when you stir everything together and take a bite, it really tastes like warm apple pie with a touch of cool whipped cream!

These are delicious.

Enjoy!

Leaky Gut Drama

Hi there, friends.

I miss sharing my recipes with you! I've been struggling to keep up with the daily life stuff; no time or energy for blogging. My "leaky gut issues" have turned into some serious drama as of late. In particular, over the weekend I had garlic accidentally, more than once (talk about feeling stupid!) and it activated all sorts of breathing problems, pain, and too-low blood pressure and heart rate. And then I lost my inhaler. AH!
Yesterday I got in to see the doctor, and I got a new inhaler and an Epi-Pen - just in case, because of the way things are going. I'm getting set up with an allergist, to get these food allergies, sensitivities, and who knows what else figured out. Remember how I didn't have any [visible] food reactions until just two or three years ago? It's so interesting to me that as I cut out more foods once I realize I am reacting to them (first soy and dairy, then wheat, gluten, citrus, then garlic, pineapple...), when I accidentally ingest one of these foods, the reaction is so much worse then before. This is how I know my guts are leaking like crazy, for one thing...

And on that note, what a nice coincidence - today when I opened my Google reader, I saw that Paleo Parents is featuring a series of guest posts on the nutrition and science behind the Paleo Diet, all written by Paleo Mom. Today's post just so happens to be on the topic of Leaky Gut syndrome. First of all, I highly recommend the Paleo Parents blog. Their recipes, tips and videos are SO helpful, fun and straightforward. They are a gift to the Paleo and blogging community! In addition, this series of articles (by Paleo Mom) is going to be good, I can tell just from this first post. Her writing is clear and full of science to back it up, and her drawings are quirky while also being super educational. It's a great post, go read it.
Maybe one day in the future, this kind of information about Leaky Gut will be on all packaging of grains, dairy, gluten free foods, and the like, so Americans can at least make informed personal decisions about whether to follow the recommendations of high grain and dairy intake pushed on us, or perhaps go another way... like gluten, grain and dairy free! That probably won't happen, but I can dream :)

No promises on when I'll be back with a recipe. I've got a lot on my plate and need to work on healing. In the meantime, you can assume I'll be eating lots of creamy, warm winter squash puree with yummy toppings, like this: