Friday, November 23, 2012

A Happy PBC Friendly Thanksgiving

Thanksgiving has been my favorite holiday for as long as I can remember. The food. The family. The food :)

The problem this year is that it's my first with PBC and living gluten free- grain free.  I've been thinking about how to make actual good replacements for thanksgiving. Not just good enough, but really good. 

Problem 1- stuffing. I have been working on my bread recipe anyway, but stuffing makes a whole new challenge. The bread has to taste good AND be strong enough to not just turn to mush when mixed with seasonings and broth. I made the perfect recipe! The loaf is my own creation sort of mixing a few recipes. It has coconut/garbanzo/cashew/almond flours and it is really great. 

Problem 2- gravy. I searched and searched and really didn't like any of the suggestions. So I ended up just going with reduce-reduce-reduce and adding about a 1/2 tsp of guar gum. It was fantastic. 

Problem 3- candied yams. One of my turkey day favorites. I ended up making them from scratch and they were BETTER than the traditional! Even my sister who hates sweet potatoes actually loved these! Yay! Total win!

Problem 4- fruit / ambrosia salad. This is normally drained canned fruit, marshmallows, cool whip- all of which have corn in them. And nuts and coconut.  I ended up making homemade marshmallows for this and the yams (which everyone loved so much the whole batch is gone already!). And homemade whipped cream (another hit everyone liked better than the premade stuff). And we found the canned fruits not in corn syrup. 

My favorite foods at thanksgiving were saved! It was so good, I honestly can't tell I even had to eat differently. Even Zoe ate a really good sized plate of everything. So that says a lot. 

And honestly the homemade stuff tastes better and is really so easy it doesn't make sense to have purchased it premade in the first place. 

I hope everyone had a great day!



1/2 cup cold water
2 packets gelatin

1/2 cup water
2 cups sugar
2 tbl honey
1/4 tsp salt

1/2 cup sugar 

1 tsp vanilla

Blend 1/2 cup sugar into powdered sugar in a blender/bullet/food processor until a fine powder. 

Coat a glass pan with oil very lightly, Then sprinkle a small amount of powdered sugar and coat bottom and sides. Put rest of powdered sugar in a sealed bowl. 

Whisk together 1/2 cup water and gelatin set aside. 

Put 1/2 cup water, 2 cups sugar, salt and honey in a sauce pan. Clip a candy thermometer onto the pan. Put on high. Mix thoroughly. Mix often until mixture is dissolved then stop mixing and don't mix again. Take a wet pastry brush and brush down the inside walls of the pan to wash down any sugar crystals (or a very wet paper towel will also work). 
Once a temp of 238 degrees is reached take off the heat. 

Turn the mixer on in the gelatin slowly start pouring hot mixture in on medium. 

Increase to high. Mix until mixture is just warm.  Add in vanilla just before done. 

Pour into coated pan. 

Cover or place in a cool oven to prevent fuzz from sticking to the top. 

Let cool for 4 or more hours or overnight. 

After cool and firm, dust top with powdered sugar  use a knife coated in powdered sugar and slice into desired size squares. 

Roll squares in powdered sugar. Place in sealed bowl. Will keep for 2 plus weeks. 

Whipped cream

3/4 cup whipping cream
1 tbl sugar
1/4 tsp vanilla

Run sugar through the blender to turn into powdered sugar. 
Whip cream on high with hand mixer. When it is about halfway firm. Add vanilla and sugar. Continue whipping till firm. 

Candied sweet potatoes 

4 sweet potatoes
3/4 cup brown sugar
3/4 cup butter
Generous sprinkle cinnamon
Sprinkle nutmeg
Small Sprinkle Salt
Homemade marshmallows

Peel and dice to bite size, sweet potatoes
Boil till slightly soft

Sauté other ingredients except marshmallow 

Drain potatoes 
mix with sauce bake covered at 400 for about 15-20 minutes. 
Stir slightly mashing some to thicken the sauce.
Add marshmallows bake uncovered for a couple of minutes. 

All purpose bread

1/4 cup coconut flour
1/4 cup garbanzo flour
3/4 cup almond flour
3/4 cup cashew flour 
3/4 teaspoon of baking soda
1/2 tsp cream of tartar
1/2 teaspoon of sea salt

6 eggs
1/2 tablespoon of apple cider vinegar
1 cup of yogurt
1/4 cup butter, melted
1/4 cup honey

Preheat convection oven to 300. 
Lightly oil loaf pan. 

Sift together dry ingredients. 

Whip eggs with hand mixer then mix in all other wet ingredients. 

Using a hand mixer, Mix together thoroughly until completely smooth. Pour into pan. Bake for 1 hour to 1 hour 15 minutes. 

Let cool for ten minutes then turn out of pan and let finish cooling. Slice when cool. 

Friday, October 26, 2012

PBC update October 26, 2012

First I just want to share a really good video that talks about gluten and children.  This is actually part 2 of a series.  Part 1 is more focused on infancy.  It's very informative. It gets a little static-y, but it's still good info.

On my front, I have been having quite a bit of liver pain lately.  I don't know whats up with that.  It's not debilitating or anything, but it's random sharp pains that are sometimes quite frequent.

Man I am just so sad for Zoe.  The thought that she'll get this, or celiac or some other auto immune disease is just so frustrating.  There's just so many complications with these diseases, in addition to the disease itself.

High risk of damage and/or cancer to just about every organ in the body.
Osteoporosis: I have to get a bone scan done every 2 years because people with auto immune diseases are at a very high risk of severe bone loss.
Chronic pain in just about any part of your body.

The list goes on and on and there is no cure for any of it.  This diet helps to slow progress or may even help to prevent future damage, but there is no cure.  There is no fix.  Once the immune system is triggered, there is no going back. What's done is done.  That is what makes me the saddest for Zoe.  When she is 15, 20, 30 - however old she might be when triggered- how will we look at her and say to her that we knew and didn't TRY to prevent?  I will be able to look at her.  I am doing everything in my power and I will continue to do so as long as there is breath in my body.  But not everyone in her life cares about this, and there's where the problem lies.  Prevention? Ha.  Is there a guarantee it will prevent? No? Oh, then I will not try.

That is equivalent to:

Does a seatbelt guarantee I will survive a car crash? No? Then I won't wear it. ::In fact, my mom was in an accident before seatbelts were mandatory and had she been wearing it, she would have been decapitated.  But does she wear one now? Yes.  Should we all wear one? Yes. Why? Because, MOST of the time, they are helpful, but no, there are no guarantees.
Does sunblock guarantee I will not get skin cancer? No? Then I won't wear it. ::In fact, lots of people get cancerous spots even if they diligently wear sun block, yet we do it anyway because there is a CHANCE it could help, or at least lessen the severity.
Does doing my best at whatever I am doing guarantee I will be successful? No? Then I won't even try.  ::In fact, we FAIL most of the time, and success usually only comes after MANY failures.

Perfection and guarantees are not feasible in this life in most instances.  We all live by odds and chances.  The only thing that almost always guarantees failure is NOT DOING ANYTHING AT ALL.  Other than that, it is left up to chances and odds.  We can, and should, do things to put the odds in our favor, but there is never a guarantee.

Not trying to help Zoe not get sick just because YOU have sentimental value to a particular food is down right irresponsible.  She DESERVES a happy, healthy life.  She DESERVES the chance to not have to worry about when her liver will fail or if she will have severe bone loss before she is even middle aged or any other of the myriad of problems that can come with this.  She DESERVES the chance to not have to worry about whether or not she will grow old.  She DESERVES the chance to look at food with the attitude of it being sustenance, instead of addiction or sentimentality.  She DESERVES our commitment to her health.

Sure, just eating the regular birthday cake at a party is easier.  Maybe getting to eat crackers and cookies off the shelf is easier, and some might label as fun memories.  BUT she has already demonstrated that she truly loves the gluten free, homemade, non-junk food version of many of those foods, with which she can have fun memories just as easily.  Yes, she likes some of the regular versions too, but why not just go with the version that is safer for her??

She didn't ask for this, I didn't ask for this FOR her, it just is.  And honestly, it's a fine and easy thing to change the way we eat in this way.  It's really not hard at all.  MUCH easier that breaking the addiction to stupid junk food.  And DEFINITELY much easier than fighting a disease.  No there is no guarantee that the disease will not trigger EVEN with the diet changes now, but there is a CHANCE.  Having a chance is worth it.  Doing something is better than just throwing caution to the wind and not caring till you are sick.  In this day and age, that's like saying: "I'll worry about watching my cholesterol AFTER I have my heart attack" "I'll worry about being morbidly obese AFTER I have caused permanent damage to my joints and I have diabetes" "I'll worry about wearing a helmet AFTER I have my motorcycle accident", so on and so forth.  It's insane and archaic.  Once upon a time those were things that people did, but in today's world we know so much more and it's plain ridiculous to ignore valuable information like this.   And, honestly, if something does trigger, at least she wouldn't have that emotional connection with things she can't eat...

But, unfortunately, this IS what people who 'care' for her think.  This IS the method they are using.  "Enjoy life and eat like you haven't a care in the world! Worry about it when you are diagnosed with an incurable disease that will cause you to eat this way anyway.  Oh yea, and I KNEW you had a very good risk this would happen and I chose to feed you lies and junk food because I cared too much about MY food issues to see how my choices could affect you".

Yea, that's how it's going.  And I try very hard to stop worrying about it.  I try hard to convince myself that at least she's not eating that stuff when she's with me, but that's like saying "Well if I put sunblock on her, all that sun she's getting when she's not with me won't cause her cancer"  "Well if I make her wear a helmet, those times that she's not wearing one will be canceled out", etc.  It doesn't work that way.  But I still try my best, if for no other reason than to TRY to help shape her view of what is safe and what isn't for her.  Or maybe, just maybe, it might SLOWDOWN the time till something is triggered.  Maybe she'll get a few extra years until this cannot be ignored.  It will be harder for her then.  She will have addictions and emotional connections with things she will have to give up.  She will have irreparable damage to contend with.  She will have to come to terms with having a completely different way of life, as opposed to just continuing on in the way she had been.

Think about it - If you got diagnosed with a disease and the treatment was to eat a particular diet, and that's what you already do, you will probably think "Ok, that's cool, I'm used to it".  OR if it is a complete overhaul you'll probably focus instead on what you CAN'T have "I have to give up THAT? I cant' have THAT anymore??!".  Big difference of perspective and we have all heard the saying "A situation is 10% the situation and 90% how we react to it".

Well, anyway, that's not something I can prevent.  I can be sad for her, but ultimately it will just be something she will have to deal with. People can either make it harder or easier on her.  I can only do what I can do...

Ugh, I always get so passionate about this.  I can't help it - she's such an awesome person, I want the very best for her.

It's Friday! Have a great weekend! I get to spend it with Zoe so that makes me happy!

Wednesday, October 3, 2012

Hit a snag and other updates

Well, I'm a bit bummed.  My numbers have gone up.  I've been really good.  Absolutely zero gluten, low sugar, no alcohol (of course).  Just all really fresh, whole food.  But I'm not giving up.  It's just a set back, but it's not the end of the world.

OK the numbers.  For a consolidated place to look I'm going to put them all here.

Bilirubin ALP AST ALT
Normal .1-1.3 30-132 5-35 7-56
2/20/2012 1.7 937 235 389 Initial
3/6/2012 ?? 633 142 253 Almost 3 wks gluten free
4/16/2012 1 194 59 101 Gluten Free and Ursodiol
5/14/2012 1 160 36 56 Gluten Free and Ursodiol
7/6/2012 1.2 163 31 42 Gluten Free and Ursodiol
10/3/2012 1.4 221 58 113 Gluten Free and Ursodiol

So, for some reason my numbers are a lot higher than they were in July.  This is disconcerting.  I was really expecting to go in and see everything in the normal range.

I will just have to work harder.  I will not be beat by this.  It just needs to motivate me more.  I have been trying to get back to working out (before my pinky toe issues), I think maybe that might help? I don't know, but it's worth a try.

16 years.  That's the average length of time from diagnosis to death.  16 years.  I don't like that idea.  I'd be 50, Zoe 19.  Nope.  I don't accept that. No teenager should have to even consider losing a parent already.

AND it makes me work that much harder for preventing for Zoe.  What if this doesn't cure me but only just extends the time? It makes me double up my efforts for Zoe.  If it can't be cured, prevention must be of the utmost importance.  And PBC, per the info from my doctor, tends to hit the second generation younger than the first (and remember, mother / daughter pairs are the most common familial pairs for this- AND she has a 1,000 fold chance of getting this because she's my kid).  So if it hits her younger, what will it be? I was 34.  30? Younger? And with 16 years? No, I don't like this.  Prevention is the key.  Just as it is in so many things, it is especially in this case.

Plus she has the genes for Celiac disease.  I just have Gluten Intolerance.  PBC is even more common with those with Celiac disease.  The odds are stacking up against her and none of these things have a cure.  Just a treatment in which gluten is removed and meds taken- so why not remove the gluten now - if it will have to go anyway, why not take that chance that it might even prevent these diseases from triggering? I don't have a problem with that.  If there were something out there to do that is completely safe and could prevent a particular disease, I think someone would be crazy not to try it.  I mean, it's not painful or dangerous.  We actually eat healthier than just about everyone I know- so what's not to like about it??

It's hard though.  I'm not the only person with Zoe.  She has influence from many other people, and some of those people don't see the value in prevention- Instead taking the "we'll think about this after she gets sick, until then she should just have fun and eat whatever she wants", but I know in my heart waiting until she's sick will be such a harder road to climb.  It's not fair to have her get diagnosed even younger than me and then have to worry about not even making it to mid-life??

Not eating a piece of toast or a gummy bear seems a lot easier than facing your mortality in your 30's.
Not having that cookie or pasta seems a lot easier that being addicted to it and then being told you can never have it again.
Not having that cake or cracker seems a lot easier than being told you will most likely get a liver transplant in the coming years, and then you have a very good chance of that one being destroyed too because this disease is in your Immune System, not your liver - the liver is just the victim.
Choosing to eat whole, fresh foods like meat, fruits, veggies, seeds and nuts seems a lot easier than finding out you have intestinal cancer from your Celiac disease (which commonly happens along with various liver diseases, thyroid disease, RA, type 1 diabetes, etc, etc).

Call me crazy, but those all seem like easier things.  I have perfected the gluten free alternatives to just about anything you can normally get - and I make them even better with less sugar, whole foods and minimal processing.  I've learned more about cooking from scratch than I ever knew and I can say- it makes complete sense.  No wonder we're all so sick - the crud in the boxes and bags in the store is just appalling.

Anyway, enough of that for now.  On a good note- Zoe's dad and I toured a school today and have decided we really like it.  It's Montessori style learning, which seems like it might be right up Zoe's alley.  They foster learning with each of the kids at their own pace.  And since Zoe always seems so far ahead, this will be great for keeping her engaged.  It's a small school, which feels like a good thing.  It's very clean and they do all kinds of extra things like dance, spanish, music, trips to the library and to the nursing home.  All things we think will be really good for Zoe. They even have times that the parents get to be involved in various school activities, so this seems like it will be great for all of us.  She will start in a couple of weeks.  Costs an arm and a leg to get it started, but after that the price isn't too much more than I'm paying now.  So that's a good thing! Some places that also seemed really good were $1200+ a month.  I just can't afford that right now.  Hopefully by the time she's completed this school (it goes through first grade) there will be another option within the budget for her.  We'll have to cross that bridge when we get to it, but for now we think she will really like this school.

One last item to mention- Friday is my divorce mediation.  It's not something I'm looking forward to, that's for sure, but it will be good just to get this all done.  For the longest time I just wanted to believe it wasn't going to happen, that some how things would heal, but I know that's not true.  I know it's not possible.  Once someone has decided, they have decided I guess.  But I guess it's been long enough now that I have accepted it - for me anyway, I'm still having trouble with it for Zoe to have to grow up this way.  But I AM ready for it just to be done, one way or the other.  Living in limbo stinks.  I don't want to be divorced, but I think I hate being 'separated' even more - it's just hard to be in-between...Like balancing on a wire 10 stories up, any wrong move will send you crashing down.  Yea, I'm ready just to get to the other side - even if it's not the side I wanted.  I always say, things happen for a reason, just the way they were supposed to.  So I've already found many reasons to be thankful my life has gone down this unexpected path.  I try not to focus on the negatives, and just think about those positives. I know it will be tough for Zoe, but I just keep trying to help her see the good things about her life - not to minimize her feelings about the bad things, but just to help her see there are lots of good things too.  She and I both benefit from this attitude!

Well, I think that about covers it for now!

Friday, August 17, 2012

It's been a month

Really? Well even a bit more than a month since I posted.  I'm sorry for that! Been a bit...ummm..distracted. I do have tons going on. School, work, Zoe was sick, I was sick...Ugh the fun goes on!

Weighing heavy on me now is the upcoming week.

It will be the hardest week of my life - And I've been through some tough stuff. In just the last few months even, I've had some of the toughest stuff going on.

There's a saying "Choosing to have a child is choosing to have your heart go walking around outside your body".  Starting tomorrow, my heart will be gone for a full week.

Bootcamp? No.
In pain for several years before becoming a Disabled Vet? Nope.
Child birth? Nuhuh.
Husband decides to leave? Nah.
Liver disease?  Noparino.

Zoe's first time away like this? This will be the toughest.

She and I had never been apart more than an hour-ish at a time prior to January.  Then it grew to all day(PAIN), then over night(PAIN!), then 2 overnights(PAIN!!!).  But now it's making a huge leap forward and SEVEN overnights straight she will be gone.

I know to someone who doesn't know us, or maybe to someone who doesn't have kids, or someone who maybe just doesn't have the type of relationship that Zoe and I have, a week sounds like nothing.  I mean, even her own dad thinks it's no big deal, as he's the one doing it to her (Honestly, it's biological that moms and babies are so connected, so I get that he doesn't get it - doesn't mean I have to like it- He has never liked my relationship with Zoe and has expressed his jealousy of our closeness often, but that's another post all to itself one day, maybe...).  But it IS a huge deal. Zoe and I ARE that close.

I get, A LOT, that she is my mini-me in looks- but it's more than that.  She and I are just so much alike in so many ways.  Kinda freaks me out sometimes when she does things that are exactly the same as I know I was when I was a kid.  It's crazy! And I love it.  All at the same time. So I really understand her feelings, to a fault I guess, because things like this are out of my control.  It really sucks when your kid cries to you about leaving and all you can do is try to help her to 'make the best of it'.  Moms shouldn't have to do that to their kid.  Moms should try to fix the hurt, not tell her why she just has to suck it up.  She's THREE for God's Sake! It's not like she's not wanting to go because she's being an ornery pre-teen or rebellious teenager- She's not wanting to go because she's THREE and doesn't want to leave her mommy...

But this IS the situation, so Zoe and I talk about it so that she can get comfortable with it.  The comfort hasn't come yet.  She's very distressed every time we talk about it.  But we've come up with a few things that might help her, so we'll just have to see how it goes.  And if she's kept distracted enough while she's gone, I think she might actually be ok- I think the thought of leaving is just so hard for her; and the acting of leaving is hard, but once she gets into something else she'll be ok.  I'll call her a few times, maybe even video chat- so that'll be good.  I think she'll hit at least  few walls of not wanting to be away anymore, but I guess she will just have to suck it up :-( that makes me very sad.

Things like this will shape her personality for the rest of her life.  I just hope that there's enough good that when she looks back on life those memories will win out against the painful ones- I think they will, at least I will try to do my best so that they will. Even pain, though, can make us grow for the better sometimes.  It's even valuable to use to learn ways to deal with people who consistently cause you pain. I know life isn't always about fluffy bunnies and rainbows, but these are just hard lessons for a three year old to have to swallow.

While she's gone I am going to do pretty much the whole rest of the semester's homework and get everything ready for our trip.  I'm still working out the details for that, but she and I will get a week too.  And we will really need it!

Tuesday, July 10, 2012

I'm 35!

And I don't mind.  I haven't hit an age yet that made me worry about growing old.  I'm ok with 35.

I am a bit surprised about where my life has gone.

If I think back to when I was 25 and compare my life today, my 25 year old self just wouldn't believe all that is going on:
I wouldn't have guessed I hadn't finished my PhD by now.
I wouldn't have guessed I had ever had a kid or gotten married.
I wouldn't have guessed that my Sphincter of Oddi Dysfunction wasn't ruling my life every single day.

If I think back to when I was 30 and compare my life today, my 30 year old self just wouldn't believe all that is going on:
I wouldn't have guessed I'd be back in school, but here I am getting my masters.
I definitely wouldn't have guessed I'd be getting divorced; back then we were really a great couple.
I would be thrilled that I'm a mom, but I would be sad that I'm a single mom. I swore I'd never go down that 'single mom' path.  It was either a family or not for me...But you don't always to get decide how your life goes.  The only thing I can control is how I react to it.
I would never have guessed that I'd have liver disease and my other autoimmune conditions and living the way I have to now.

 So much changes in 5 year spans...

Even with everything going on, I have to say I feel very fortunate.  I have an awesome kid, first and foremost.  I also have an awesome job.  I have good friends and a loving extended family.  My nuclear family may have been broken, but this situation has only helped me to see who my true family and friends are. It's been eye opening to say the least.

I don't recall my 25 year celebration- Something in Florida, I'd guess, spent with Stephanie for her summer visit probably- Those were always the best!  My 30 year celebration was in Mexico and I remember it fondly, but my 35 year celebration is even more awesome- I will get to hang out with my kid - the most awesome little girl in the world and definitely the person I love to spend my time with! And then I will get to see more family this weekend.

This is my first 'single mom' birthday.  I'm accepting this title more and more each day.  I'm way more sad for Zoe than for me.  I loathe to think of the hardships she faces over the years growing up in a split family, but I think we will muddle our way through it some how.  Maybe even appreciate what we have more than we might have because we've been reminded not to take anything for granted- life can easily get turned upside down in a second.

So yea, my life is certainly in a very different place than I would have guessed, but I can't say that it's all bad.  I have lots of things to be thankful for, so I just focus on those.  The not-so-good things are there, but I try not to let them rule my life.

I wonder what I will write for my 40th?!

Wednesday, May 16, 2012

Really Good News and Info!

I recently went to my primary care doctor and had some bloodwork done to test the gluten stuff.  Turns out I am now diagnosed Gluten Intolerant, not Celiac Disease, and she stressed that I must stay on a gluten free diet to help heal my liver and skin autoimmune diseases (Wow! I'm not crazy, imagine that!).  And she said, honestly that I may have Celiac Disease, but we only did a 2 week gluten challenge - which may not have been enough to get the celiac antibodies back.  But I couldn't handle anymore than the 2 weeks.  I was really feeling cruddy - I didn't think I felt so bad before, but either it was more noticeable after being gone, or maybe it was legitimately worse since it was gone then reintroduced.  But all my skin conditions had horrible flareups, I was EXHAUSTED, super depressed, my heartburn / reflux returned and I was so bloated my pants were too tight! I was so happy to just stop that.

She also agreed that keeping Zoe off gluten, as much as possible, is a good idea.  She, in general, said it's best for really everyone to avoid the types of foods that contain gluten (processed, packaged foods, breads, junk food, etc).  She said since I'm gluten intolerant, it means that I don't have to be AS vigilant as celiac - like I shouldn't worry SO much about cross contamination or whatever, but she said I very much need to keep gluten out as a whole.  And for Zoe, she said keeping MOST of her diet with the whole, real foods that I've been doing is best.  But for me not to stress if someone 'glutens' her once in a while - the fact that she's eating right most of the time will probably protect her.

So all very good news!

And she did another LFT to see if the 2 week challenge affected my liver.  I am happy to say that my numbers are still down!  

1 month ago (4/16):
Bilirubin  1.0 
ALP 194 
AST  59
ALT  101

5/14 (Everything is down a little more, but I'm guessing it was down further than this and the challenge probably brought it up a bit, but it's still good! And honestly, maybe I didn't eat enough gluten - it just made me feel so bad, I just couldn't - so I only ate 2 slices of whole wheat toast each morning - well that one time I had a small Schlotzsky's for lunch - just kind of a final farewell!)

Bilirubin 1.0
ALP 160
AST 36
ALT 56

Bili is normal, ALP is only 30 points from normal, AST and ALT are both 1 away from being normal! So this is all VERY good.

As a side note- My doctor actually told me I am doing everything right and she believes I might actually COMPLETELY heal my liver! Officially there is no cure for PBC, but she said given my numbers and the relief I have from my other autoimmune/skin conditions, she believes I can definitely BEAT THIS! 

It is just beyond words to hear this coming from her!

Hope everyone is having a great week!!

Sunday, May 13, 2012

Happy Mothers Day To All

I hope all mommies and mommies to be have a special day today.

I feel lucky today. I got to spend time with my parents, nieces, nephews, sisters and of course Zoe. It was bitter sweet though being my first mothers day as a single mom. But I also realize that being a single mom isn't just about the husband I no longer have, I also lost a big group of people I've called family for a very long time. Being around so much family today, strangely, just reminded me how many people I've lost the last few months. Just another piece of the collateral damage to add to the list I guess. I'm sure by next year it won't still sting so bad...I can hope.

But that's only been a part of my day. All in all, it was good getting to be with my mom- haven't seen her for mom's day in a few years. And seeing family was very nice. And of course any time I get to see Zoe, and really hangout with her, nowadays for more than a few minutes at a time is nice.

So Happy Mother's Day to ALL my family- whether you think you are or not :)

Monday, April 30, 2012

Several studies identifying link for PBC and Celiac

"There is, however, growing evidence that the loss of the intestinal barrier function typical of celiac disease could be responsible of the onset of other autoimmune disease."

"Celiac disease is, however, a unique example of autoimmunity, since early serological diagnosis and dietary treatment can revert the autoimmune process and can prevent its severe, sometimes life-threatening complications. Therefore, the common wisdom among experts in the field supports the notion that individuals affected by celiac disease should be treated, irrespective of the presence of symptoms and/or associated conditions. "

OK, even the "Celiac Disease for Dummies" Book says "PBC is the most common of the serious liver diseases found in people with celiac disease".  Ugh seriously? Why did our odds have to go that way??

PBC and Celiac
Liver Damage and Celiac

So let's see here- Zoe has both Celiac genes, plus the huge probability of getting PBC, plus there is apparently a big connection with Celiac and PBC in the first place AND Celiac, with or without PBC has been shown to cause liver damage?!?!? OMG! Her poor liver is doomed if we don't take action!

Another article stating the link

Another Study with PBC & Celiac
"An association between primary biliary cirrhosis (PBC) and coeliac disease now seems well established."
"There may be a correlation between the duration of exposure to gluten and the risk of developing autoimmune disease."
" In both diseases there is a female preponderance but this is much more noticeable in PBC. "

So yea, getting gluten out now may be really helpful in preventing not only Celiac, but also PBC.

Saturday, April 28, 2012

Our Genetic Testing Results

I've been meaning to update for a few days, but on-call has been really busy.

I got the results from the genetic testing I ordered for Zoe and me.

They tested 4 genes.  HLA-DQ1, HLA-DQ2, HLA-DQ3 and HLA-DQ8.

HLA-DQ1 and HLA-DQ3 are the 'gluten sensitivity' genes.
HLA-DQ2 and HLA-DQ8 are the 'celiac' genes.

I have HLA-DQ1 and HLA-DQ8.  So one of each.

Unfortunately, Zoe has HLA-DQ2 and HLA-DQ8, both the celiac genes.

Having the genes doesn't guarantee that she will get celiac, but if she gets the right environmental trigger- she is predisposed to get it. To put it another way- you are 99% likely NOT to get it if you don't have these genes (nothing is ever 100%, and there are certainly more than just these 2 genes are work, but these are the only 2 they know about so far).  With only HLA-DQ8, you have a small chance of getting it.  With only HLA-DQ2 your chance is a lot bigger as this is the gene primarily associated with celiac. If you have both, HLA-DQ2 and HLA-DQ8, you chances are very, very good.

Of course, there's always a chance that it doesn't get triggered.  The primary trigger for celiac is gluten.  And the treatment for celiac is living gluten free.  So this information has confirmed that not eating gluten is the right thing to do. Even if the trigger ends up being an illness or a bad reaction to meds, and she still becomes celiac- At least she'll already be used to not eating gluten so it's not a huge life changer.

It's so strange how sometimes in life you start going down a path that you had no idea how much you really should be going that way. I mean, I had started researching gluten and autoimmune diseases just days before I was diagnosed with PBC.  Then I found out how much of a chance Zoe has of also getting this, and decided to take us both completely gluten free- and now the genetic testing comes back that she has the 'celiac genes'. That seems like someone was pushing us that direction for some reason - Call it whatever you want, Guardian Angel, Fate, whatever- It's like it was preparing us to accept this change so that it would be easier.  Or whatever, I'm not a philosopher, just saying it is really crazy how it has all worked out.

I was pretty sad after I found out she had these genes.  As if worrying about her getting PBC wasn't bad enough, knowing that her risk of celiac is so high is just another worry to add to the stack.  (Plus once you have 1 autoimmune disease, it tends to have a domino effect, I've already got 2.  I just don't want her quality of life to be affected).  But then I started thinking about it- we're actually pretty lucky.  To know this stuff when she's only 3?! To get to possibly prevent or lessen something like this for her is a chance few get.  So, always looking for the silver lining, this is actually a good thing to have found out already.

I was reading an article recently on genetic testing.  They don't know everything yet, but what they do know should be put to good use.  And genetics just need a cheek swab, totally non-invasive.  So there is a thought circulating the medical industry to run the testing for known diseases (like celiac) on newborns.  It can be so beneficial to know in advance if someone will be prone to getting a disease.  In some cases they can prevent, in others they will just know to start yearly testing at an early age because early intervention can improve quality of life.  Very interesting.

Anyway, that's it for now.  Hope everyone is having a great weekend!

Thursday, April 19, 2012

Oh Wow! Great news!

OK, so I had my liver panel done again.  Wow! That's all I can say.  Ok here's the history so far.

Normal ranges (for reference):
Bilirubin  .1-1.3
ALP  30-132
AST  5-35
ALT  7-56

My initial numbers 2/20:
Bilirubin 1.7
ALP  937
AST  235
ALT  389

I was already going toward a gluten free diet due to my lichen sclerosis, but upon finding this out, I immediately went to a true gluten free diet.  I was told on 2/21 that I needed an AMA test and I had already known that that test was for PBC and so that day I went strictly gluten free.

I forgot on 3/06 I had my LFTs done again by my Gastro dr.  This was only 2 weeks after going true gluten free! So I just got those numbers.

Numbers on 3/06:
Bilirubin (I didn't get this number)
ALP  633 (Over 300 points in 2 weeks BEFORE meds!)
AST  142
ALT  253

Those are all BEFORE I started the Ursodiol! Just changing my diet.  OMG! I didn't even realize I had made that much of an impact already!

The next set of numbers is about 6 weeks of meds and 8 weeks of gluten free.

Numbers on 4/16:
Bilirubin  1.0 (NORMAL!)
ALP 194 (OMG! Almost normal! After being over 900!! Amazing)
AST  59
ALT  101

So you can see how I might be excited! My numbers have dropped so significantly it's hard to believe!

This really cements my belief in the diet changes I've made.  I know the meds are completely necessary, especially since I'm already stage 2.  But maybe, just maybe, with my diet helping so much and with the meds, my liver can keep up with the damage my immune system is causing.  At least till my body heals from the previous gluten damage and then I can HOPE that my immune system 'forgets' about the invader and stops attacking my liver! (That's what the plan is anyway, and I have read about this already happening for people for all kinds of auto immune diseases).

So I'm supposed to have blood work done again around June 1st then again around September 1st.  Then I'm supposed to go for follow up.  I bet it will be good as long as I stay commited to this!


Thursday, April 12, 2012

PBC and Gluten Sensitivity

Here is an Article talking about PBC and gluten Sensitivity.  Mentions that there are more than 200 studies already linking gluten sensitivity and liver disease...

Children and Gluten Videos

Here are 2 good videos about gluten and children.

The First Video is more about what is gluten sensitivity and the [For all those absolutists: Not every child/person has all or any of these symptoms, and not all of these symptoms are exclusively caused by gluten] possible symptoms children can have when exposed (Makes me extra happy Zoe was breastfed, never had infant cereal, mostly fed fruit/veggies! But I think my eating gluten is what maybe caused her colic...And since removing gluten, whenever she does get a good bit, she usually gets diarrhea/very soft stools and she asks me to rub her belly while she tries to go because her tummy hurts...). 

The Second Video is about how to help them and others get to be truly gluten free, genetic testing and some of the consequences, etc. 

They are kind of long, but if you have time, it's worth a listen.

Tuesday, April 10, 2012

Gluten Sensitivity and Celiac

“Celiac disease and gluten sensitivity are subsets of gluten intolerance"

There is some debate whether a celiac is more likely to contract autoimmune disease than a gluten sensitive patient, but the jury is still out. I can only state that clinically I have seen many patients with autoimmune disease who were gluten sensitive.
We also know that gluten, in sensitive individuals, extends its negative effects far beyond the gastrointestinal tract. Cellular & Molecular Life Sciences 2005 reported: “celiac disease has also been termed gluten sensitive enteropathy because the small intestine is the main target of injury; however, the clinical manifestations are extremely diverse, suggesting the disorder is in fact a multi-systemic disorder.”

Hepatology Journal 2007 found: “liver blood test abnormalities affect patients with classical celiac disease or may be the sole presentation of atypical celiac disease.” “A gluten free diet leads to normalization of the blood in 75% to 95% of patients with celiac disease, usually within a year of adherence to the diet.” “Even more, celiac disease was found to be associated with an 8-fold increased risk of death from liver cirrhosis.”

Prevalent Role of Gluten Sensitivity and PBC

57% of patients with acute liver failure have anti-transglutaminase antibodies suggesting a role of gluten sensitivity in primary biliary cirrhosis, and primary biliary cirrhosis is considerably more common in gluten sensitive enteropathy than the normal population

I know it's just wikipedia, just saying it's becoming more common knowledge!

PBC Familial Clusters Involve Mother-Daughter Pairs

Whether coeliac disease leads to severe liver disease and failure is the subject of ongoing debate. Patients with chronic liver disease have been found to have a higher prevalence of coeliac disease than the general population. A study of 327 patients with 'chronic liver disease' from Sweden found the prevalence of coeliac disease was increased at least 15-fold. Patients with severe liver disease were investigated in a study from Finland. In those considered for liver transplant for gross liver disease, coeliac disease was found in four and on a gluten-free diet a dramatic response ensued in the three compliant patients and in the fourth, a poorly compliant patient, a partial response followed. A related study of 185 Finnish patients who underwent liver transplantation found eight had adult coeliac disease; four to 10 times the expected prevalence. Seven of the eight adult coeliac disease patients were non-compliant long term. The liver biopsies showed a number of pathologies; autoimmune hepatitis (one), primary biliary cirrhosis (two), steatosis, primary biliary cirrhosis (one), primary sclerosing cholangitis (one), congenital liver fibrosis (one), chronic active hepatitis (one), secondary sclerosing cholangitis following cholecystectomy (one).

There are, moreover, numerous reports of a link to primary biliary cirrhosis with evidence of improvement on a gluten-free diet, leading to the recommendation that all patients with primary biliary cirrhosis be screened for coeliac disease.

There is evidence for links between coeliac disease, often silent, and a wide variety of liver diseases particularly a mild silent hepatitis and primary biliary cirrhosis.

And if anyone doubts my worry for Zoe: suggest that first-degree relatives of PBC patients have an increased risk of developing the disease. Most often, these familial clusters involve mother-daughter pairs, which is consistent with the female preponderance of the disease...

I am justified to worry!

Is Gluten Intolerance The Cause of Autoimmune Disease

...There has been proof for many years that the intestine is not the only tissue targeted by the immune reaction to gluten...Now, more recent research reveals that perhaps a vast number of autoimmune diseases may also involve an immune response to dietary gluten...And potentially on and on it goes to include many of the 100s of autoimmune diseases afflicting millions of Americans. Can you now see why gluten has such far-reaching effects that damage other systems of the body?

Dr. Alessio Fasano performed a brilliant study on rats that were genetically predisposed to develop type 1 diabetes...This study was the first time that an autoimmune disease was prevented by blocking intestinal permeability...This study opens a new field of investigation into the relationship between the health of the intestine and the basis of many diseases. Imagine if the “unknown trigger” of autoimmune disease turns out to be gluten and its effect of creating a leaky gut!

A study from Italy showed that the longer gluten sensitive people eat gluten, the more likely they are to develop autoimmune diseases. They found that in childhood celiacs, the prevalence of autoimmune disease rose from a baseline of 5% at age 2 to almost 35% by age 20. Imagine if screening of all children for gluten intolerance resulted in reductions of future autoimmune diseases!

...have their children evaluated for gluten intolerance, especially if there is any incidence of autoimmune disease in their family tree...

...we do see some very exciting reversals in autoimmune disease symptoms once a patient has removed gluten from their diet...

Leaky Gut

 What is the Leaky Gut Syndrome (LGS)?
Leaky gut syndrome is a term often used in complementary or alternative medicine circles and by the lay public that describes a collection of symptoms believed to be due to what medical researchers call increased intestinal permeability or altered intestinal or gut barrier function. This concept is increasingly recognized as one of the most important problems, if not the most important, in the prevention or development of various diseases such as celiac disease, Crohn's disease and various autoimmune disorders. An intact gut barrier is part of the innate immune system defense mechanism that is important for health and prevention of disease. The intestine is lined with a single layer of epithelial cells, called enterocytes in the small bowel and colonocytes in the large bowel or colon. These epithelial cells constitute the intestinal barrier or defensive wall from what enters our body when we eat.

Can gluten cause leaky gut with or without celiac disease?
Chronic gluten exposure has been shown to activate zonulin resulting in increased intestinal permeability (or leaky gut) even in the absence of celiac disease. ...

Study Sheds Light On Gluten Sensitivity -

Very interesting article. Like I keep saying- this information is still very new, but it's real!

Is gliadin really safe for non‐coeliac individuals?

"The data obtained in this pilot study support the hypothesis that gluten elicits its harmful effect, throughout an IL15 innate immune response, on all the individuals. This innate response is found in both patients with and without CD, although the triggering of an adaptive response is CD specific. We propose that somehow patients with CD need to be DQ2 and also have a lower threshold for triggering an adaptive TH1 response. This lower threshold could be mediated by the higher basal levels of immune mediators, like IFNγ mRNA, found in patients with CD, a defect in the CD permeability or even a higher IL15‐sensitive response under the same stimulus, which might be mediated by a higher density of IL15 receptor in patients with CD."

Wednesday, April 4, 2012

Some Pet Peeves

So I've been reading various PBC support group sites and there are a few things that bug me.  But before that, I do want to preface this with the fact that overall I think these groups are awesome! And I am so thankful for having this disease in this day in age.  I feel like people that had this before the internet/infomation age were probably very misinformed and just felt totally lost...

OK, my pet peeves.  First, it's sort of a mixed one- MOST of the people on these boards are over 50 women.  There are some exceptions, but by and large, that's what's there.  I feel kind of out of place.  Like why the heck do I have this thing?!?!?! I'm too young! But it's mixed, because the few ladies I've talked to, make me feel better - like a mom or grandma looking out for you, so that's nice.

My other pet peeve is a little slogan most sites tend to have.  Something like "PBC doesn't have to be a death sentence".  So, ok.  Yes it MAY not kill you, but just because it doesn't directly kill you doesn't mean your quality of life is worth a darn.  In one breath they say it may not kill you and in the next they talk about all the aches, pains and disabilities caused by PBC.  So many people end up going on disability due to the extreme fatigue, joint pain, liver pain, etc...NOT SOMETHING I'M LOOKING FORWARD TO...And MOST of them all end up developing multiple autoimmune diseases.  Like PBC is the gateway autoimmune disease! :(

And then a post I read keeps playing over and over in my head - "My mom just died of PBC and now I've been diagnosed with it..." UGH! I don't want this to be my and Zoe's story!!!!!!

But I'm doing everything I can to prevent for Zoe and to heal me!  I WILL!!! ;) I will keep telling myself: I will beat this! I will have a long and happy life with my kid! I will help her to stay healthy through lifestyle and nutrition choices!  I WILL!!

Tuesday, April 3, 2012

A little update

So, I was thinking I haven't done an update in a while...

First, I don't know if it's just being a mom (Zoe has had a couple nights of not wanting to sleep well), or if it's the PBC, but I am TIRED! Dog tired.  Like my ears start ringing I'm trying so hard to stay coherent tired.  Reminds me of early pregnancy! Ugh.  And also, just like early pregnancy, I have been pretty much constantly nauseous the last week or so.  Last Thursday I was actually sick all night, but even besides that I just have this background noise of mild, but annoying nausea.  I find if I (just like pregnancy) eat a little at a time at nearly a constant drip, that helps a little.  But that's hard to keep up with.  I hope this isn't my life now - comatose tired and on the verge of throwing up all the time?? Doesn't sound fun.

AND I am not super 'itchy' yet (a common thing with PBC), but I am 'prickly' all over.  Hard to describe but my skin feels like it's SUPER dry or 'prickly' or something and about to itch all the time, but not itchy yet, with occasional true itchiness?? Hard to say but it's my hands, arms, feet, face, neck, belly, chest....Almost all over. 

AND my eyes are having issues.  Like I'm blinking imaginary 'goop' out of them.  There's nothing there, but it sometimes takes a blink or two to see things clearly.  May just be due to the being tired part, who knows!

I'll go in a week or so to get my Liver Function Tests done again to see if the Ursodiol is helping lower my numbers at all.  Hoping we see some improvement!

Think that's about all for now.

Thursday, March 29, 2012

Not the best news but could be worse I guess

It could always be worse...I just gotta remember that.

So I found out yesterday that I am in Stage 2 of Primary Biliary Cirrhosis...Ugh.  There are 4 stages, I was hoping for stage 1 (Or Zero- That would mean no damage at all yet, but I knew that'd be asking for too much...).

  • Stage one: Inflammation and/or abnormal connective tissue confined to the portal areas
  • Stage two: Inflammation and/or fibrosis confined to portal and periportal areas
  • Stage three: Bridging fibrosis
  • Stage four: Cirrhosis
{Warning: Medical jargon coming!}
Histologic stage — PBC is classified histologically into four stages.
As noted above, the natural history of PBC involves histologic progression along these stages, although treatment with UDCA may slow disease progression.

{Pre-UDCA [The Medicine I take]}
In a study involving 916 biopsy specimens from 222 patients followed in the pre-UDCA era, cirrhosis developed within four years in 31 and 50 percent who presented initially with stage I or II disease, respectively
The presence of cirrhosis (stage IV), is associated with a worse prognosis and identifies a group of patients at risk for development of complications related to cirrhosis including variceal bleeding and development of hepatocellular carcinoma. In a study of 256 patients seen in the pre-UDCA era, 31 percent developed esophageal varices during a median of 5.6 years of follow-up. One- and three-year survival rates were 83 and 59 percent, respectively, after the development of varices.

{With UDCA}
In another study, the presence of ductopenia {"refers to the associated reduction in the number of intrahepatic bile ducts, a process that ultimately leads to cholestasis"[bile not flowing and destroying liver]}on a baseline liver biopsy predicted histologic progression despite UDCA

In a trial of 180 patients at one medical center, UDCA led to a significant decrease in the plasma levels of aminotransferases, alkaline phosphatase, and bilirubin. Although there were also fewer deaths in the treatment arm, there was no improvement in fatigue, pruritus, liver histology, or referral for liver transplantation. In a follow-up report in which treatment had been continued for a total of three years, UDCA was associated with a significant reduction in the risk of death and need for transplantation

Similar findings were noted in a multicenter Canadian study of 222 patients. The active therapy group had lower plasma levels of the aminotransferases, alkaline phosphatase, bilirubin, IgM, and cholesterol. Fatigue, pruritus, and the rates of liver transplantation and death were unchanged. There was, however, a beneficial effect on liver histology as manifested by decreased progression of periportal hepatocellular ballooning and bile duct loss.


{Random interesting tidbit I found.  Sucks it's still coming back to bite me after 4 years quit!}

Cigarette smoking — An association between PBC and cigarette smoking has been suggested in epidemiologic studies. At least two studies also suggested that cigarette smoking is associated with more advanced fibrosis stage. In one of the studies, never-smokers were significantly less likely to have advanced fibrosis (METAVIR fibrosis score of 3 or 4) than patients who had smoked in the past or were current smokers (16 versus 33 percent). For each pack-year increase in smoking, there was a 5 percent increase in the likelihood of advanced fibrosis.


So Anyway, what now?  Now I get more tests! Yay! I have to get blood work drawn in 2 weeks, 3 months and 6 months.  Then see the doctor again.  Hopefully we'll see a downward trend of the numbers and can assume the meds (and diet changes) are helping.  Depending on how it's going, at some point I'll get another liver biopsy to see what stage I'm in then. 

My hope is that the meds slow down the progression and my diet changes help to start sealing my gut and EVENTUALLY (I'm talking several years here), I MIGHT see some reversal of this.  And then after even more time, maybe I'll actually beat this disease.  I mean I know it's supposedly 'incurable', but I have already met people that have cured their Auto Immune disease and read about lots more by doing what I'm doing.  So my hopes are high. 

I'm just going to stay on top of this and see where it goes.


Now I also know to stress even more to Zoe to not smoke (which of course I would already, but here's even another reason) and to eat right.  I really don't want my little girl to get this ("familial clustering of autoimmunity has long been recognized"  "Inheriting certain genes can make it more likely to get an autoimmune disease. But a combination of genes and other factors may trigger the disease to start"). And it's not just PBC I have to worry about- "Children {and anyone} with one autoimmune disease tend to run a higher risk of developing another"- Which is what has happened to me- I got lichen sclerosis first (AI disease) and now PBC...What next??

Heredity: A child inherits certain genes from her parents that make her susceptible to a particular disease.

  • Environmental factors: The disease doesn’t actually reveal itself until it’s “triggered” by something.
  • Hormonal factors: Given that many autoimmune diseases tend to affect adolescent girls and young women, the presence or amount of certain naturally occurring hormones in the body may also play a role in when these illnesses come to the fore.

  • So this is how it could have happened with me:
    I am predisposed to get an AI; I eat Gluten all my life; I cause holes in the gut and gluten travels around my body; My immune system attacks the Gluten; Then I get my Sphincter of Oddi Dysfunction attacks; That 'triggered' my immune system some how to get confused and start attacking my body giving me LS and PBC

    [" When the immune system attacks the gluten protein it can confuse other bodily proteins for gluten due to their similar molecular structure. The term used to describe this phenomenon is “cross-reactivity”.  This cross reactivity is the cause of the immune system attacking “self”. It believes it’s attacking a toxin, in this case gluten. In some cases the trigger to attack self can be an infection"]

    Of course, there's no way to know if I've had the PBC before the LS and just didn't know about it - the LS just makes itself KNOWN!  Maybe it was the time I tried the Depo Shots that triggered it, or the hormonal changes from quitting smoking or being pregnant, or the stress of a kindey stone or gall stone, or that really high fever I had that one time- Just making a point, that there's really no way to determine the 'trigger', could be anything, which is why it's so important for me to try to prevent the leaky gut in the first place for Zoe!

    Ugh.  Just sucks to know I have probably passed the genes on to Zoe to develop AI disease(s). 

    Welcome to the world! You're beautiful! Smart! Funny! And, oh yea, here's a little something extra...

    Great job mommy!


    Sources: Unfortuantely, my trial is almost over! :(

    Tuesday, March 27, 2012

    Some good news

    Had my appointment with the thyroid surgeon.  He said that, in fact, the large nodule was already 2.5+cm last time it was checked, so the old records from 2010 had just been misread! So no real change in size, so no biospy needed! Yay! I have to go back in a year for another ultrasound.  He said that since this has been tracked since 2007, if the next one says it's pretty much the same, I can stop even getting ultrasounds done.  He said after a few years, if it hasn't turned into cancer, it probably won't.  So that's my first piece of actual good news!

    Tomorrow I findout what stage I'm in with the PBC...I'll update on that as soon as I can.

    Friday, March 23, 2012

    Some videos concerning gluten and our health

    So there are tons of things to find that will talk about gluten and how it negatively impacts our health.  I find more stuff all the time.

    Here's a different mode.  Instead of giving more articles to read (which I will soon anyway :).  Here are some videos to watch/listen to.  Good info...I'm sure I'll find more soon.  They are all over the place. 

    Video 1
    Video 2
    Video 3

    A TED MED Presentation

    Monday, March 19, 2012

    Tomorrow is my liver biopsy

    Well, tomorrow is the day.  Fun stuff.  My dad is coming in to town drive me home from there since I guess I'll be loopy :)

    Life is kind of crazy right now.

    I have had so many appointments, and am still so new at work- I really hope it's not looking bad for me.  I mean they are nice about it all, but I just hope this isn't messing up things for me for the long haul. I could see myself staying here a while if they'll have me!

    I finished my last research paper for the semester on Saturday and I already got my grade- an A! So I should for sure have an A for the semester! Yay!

    And Zoe stayed the night away from me for the first time EVER, since conception! It was stressful for me, but I hear she did just fine.  That's good to hear.  I think I'm more sad about it than I should be.  Just missing the way things were.  She told me she's forgetting how we used to spend all our days together.
    :( Makes me sad to think all the time I devoted to her won't even be a memory for her.  But still worth it for me.  I think it'll make a difference in her character- even if she doesn't remember it.  Hopefully I can still be a good enough mommy, in the few hours a week that I get, that she remembers that...

    Just taking one day at a time...

    Thursday, March 15, 2012

    Better than bad news, I think

    Sorry for the late update. We were busy last night.
    My lung doctor appointment went ok. He said he doesn't think it's cancer, so that's good. But he also said he is not sure what it would be. Said its probably more fluid than solid, or maybe scar type tissue. He asked me about reflux. I told him how a couple of times while pregnant I aspirated some stomach acid- he said that kind of thing could have caused damage like that.
    So for now, I'm going to just get a chest X-ray every couple of months to see if it's changing. He's hesitant to do a lung biopsy because I'm feeling fine and there's a big risk of lung collapse leading to a week long hospital stay. The risk to benefit ratio leans to the 'just watch it for a while' side.
    So not bad news- so that's good! ;)

    Wednesday, March 14, 2012

    Have my liver biopsy scheduled

    So it's gonna be the morning of the 20th. Sounds pretty long they said- 30 minutes for sedation stuff, 1 hour for the biopsy surgery and 4 hours in recovery.
    Now hopefully during my appointment today with the lung doctor I can get my lung biopsy done at the same time?! Or maybe the next day or something. That way my dad can just stay an extra day or two to drive me! :)

    Tuesday, March 13, 2012

    Well that doesn't make me nervous or anything

    I got a call from the pulmonologist (lung doctor) today. He only had one appointment available in the next 2 weeks - tomorrow. And he really wanted me to go then and not kinda makes me nervous. Not good when a specialist really wants to squeeze you in! So tomorrow I'm going there! Will update after the appointment.

    Friday, March 9, 2012

    CT scan results are back

    Well, I have a diffuse alveolar infiltrate in the right upper lobe of my lung.  And 5 sites of ringlike infiltrates, 3 in the left lower lobe, one in the right lower lobe and one in the right middle lobe.

    No pathologic nodal enlargement.  No pleural fluid.

    Differential diagnosis is extensive and includes infectious and immunologic lung disease.

    I really don't know what all that means except that now I have to go see a Pulmonologist and get a LUNG BIOPSY! Ugh.  That does not sound fun...

    I'm on the chopping block for a liver biopsy, thyroid biopsy and now lung biospy.  Jeez.

    Seriously? How the heck am I suddenly finding that nearly every part of my body has an issue?!?!?!

    I suspect that it's all related, the liver, lungs and thyroid.  I'm hoping that all stem from auto immune problems and that they ALL will be helped, slowed or even CURED with my gluten free lifestyle.  I cannot have so many problems! I am only 34 years old and (was) fairly healthy. 

    Surprising how much stuff has gluten

    TRUE Gluten Free Diet Guidelines – Avoid All of These…
    Barley (malt)
    Durum (semolina)
    Corn (maize)* (for a list of hidden corn ingredients, go here <<<)
    Rice (does not include wild rice varieties but does include brown rice)*
    *These grains are classically considered gluten free, but are not recommended on a TRUE gluten free diet.  If you would like to learn more about why these other grains should be avoided, watch the following video <<<
    *** These items are technically not grains, but are at high risk for cross contamination and not recommended on a TRUE gluten free diet unless verification can be obtained.  These pseudo cereals are also very high in glutamic acid and should be discouraged as substitutes for patients with neurological symptoms.
    Misc. Food Additives or Processed Foods That Can Contain Gluten
    Modified food starch
    Textured vegetable protein
    Hydrolyzed plant protein
    Hydrolyzed vegetable protein
    Hydrogenated Starch Hydrolysate
    Hydroxypropylated Starch
    Pregelatinized starch
    Vegetable gum
    Vegetable protein
    Extenders and binders
    Maltodextrin (wheat or corn based)
    Non Dairy Creamer
    Seasonings (check labels)
    Natural Flavors
    Smoke flavors
    Artificial Flavors
    Natural Colors
    Artificial Colors
    Caramel color and flavoring
    Soy Sauce
    Bouillon cubes or stock cubes
    Candy may be dusted with wheat flour; ask.
    Canned soups – Most are not acceptable.
    Cheese spreads & other processed cheese foods.
    Chocolate – may contain malt flavoring.
    Cold cuts, Wieners, Sausages – may have gluten due to cereal fillers.
    Dip mixes
    Dry sauce mixes
    Honey Hams – can be based with wheat starch in coating.
    Ice Cream & Frozen Yogurt – check all dairy.  Cows are fed grains and many react to dairy for this reason.  Grass fed dairy recommended (or avoid dairy altogether).
    Instant Teas & Coffees – cereal products may be included in the formulation.
    Mayonnaise – check thickener and grain based vinegar ingredients
    Mustard – Mustard powder may contain gluten
    Oil, frying – Check for cross contamination or corn based oils.
    Poultry and meats – Check out the flavorings and basting and inquire about meat glue
    Sour cream – May contain modified food starch of indeterminate source.
    Dry roasted nuts & honey roasted nuts
    French fries in restaurants – Same oil may be used for wheat-containing items.
    Gravies – check out thickening agent and liquid base.
    Vitamin supplements (different brands contain grain based ingredients – check the labels carefully)
    Baking powder (commonly contains grain – wheat or corn)
    The Grasses -
    Many people want to use wheat, barley, rye, and oat grass (not the seed) as a supplement in the diet.  Technically, these do not contain gluten as they are the grass part of the plant.  However; it is recommended that these be avoided to prevent the possibility of cross contamination.
    Alcoholic Beverages that contain gluten-
    Malted beverages
    Grain based spirits (many claim that distillation removes gluten…Gluten Free Society recommends avoidance regardless)
    Non Edible Items That May Contain Gluten (Read Your Labels)-
    Stamps & envelopes
    Hairspray & Shampoo
    Pet Food
    Medications & Vitamins
    Is There Gluten in Dairy?
    Research has identified that gluten from mother’s milk passes into the dairy of humans.  A majority of gluten sensitive individuals do not tolerate milk or dairy based foods.  The staple diet for commercial dairy cows is grain.  Whether or not glutens from feeding cows grain crosses into dairy is still in question and has not been adequately studied.    That being said, common sense of the obvious should supersede the decision to use dairy.  Gluten Free Society recommends only dairy that comes directly from pasture fed cows if any at all.  For more in depth information on this topic, please listen to the following 2 part interview between Dr. Peter Osborne and Dr. Rodney Ford:
    Part 1
    Part 2
    ****Note – their is no such thing as a complete comprehensive list of food items that contain gluten.  Manufacturers regularly change their ingredients, mislabel, have product recalls, etc.  This is why Gluten Free Society’s stance is to avoid processed and packaged foods as much as possible as well as to avoid eating out as much as possible.  You cannot control the mistakes or ethical considerations of others.

    My source:

    Thursday, March 8, 2012

    Had my CT scan today

    First of all. That barium stuff is gross. I had to drink THREE doses this morning! Yuck. Talk about nauseating. Plus I had to get the contrast in an IV. Fun. Should have results in a day or two.
    This whole day has just been crazy. Zoe got sick on the drive in. All. Over. Her. Carseat. Again. Ugh. So I cleaned her up and brought her in the appt with me. Then Tom came and got her. They're hanging out together today. Tom also took the carseat for me. Gonna just trash it. She puked all over it a few weeks ago. I sprayed and washed it as best I can, but the cloth doesn't remove so now after 2 episodes I guess it's just time for a new one.
    It's a big decision tho, so I'm having trouble figuring out which one to get. I want one that goes as high as possible on weight with the harness. The traffic in Austin is scary. I want her well protected for as long as possible. I'll probably end up going with a Britax. They are expensive, but I think the material removes on all and is machine washable. And they have some of the highest weights with the harness. So now just where to find a good one in Austin. I see places on line to order, but I need one today!

    It's a never ending list with me...

    Tuesday, March 6, 2012

    An update from my dr appointment

    Today's appt went ok. He confirmed I have PBC. He let me know that he can't give me a prognosis until after a liver biopsy. Fun. And he's concerned because ALL my liver tests are high. Usually just ALP and AMA are increased significantly, but my ALT and AST are also really high. So auto immune hepatitis is also a strong possibility (not the same as hepatitis from the virus). So I also had several vials of blood taken today.
    I don't have anymore answers yet. I am supposed to go back about a week after my biopsy to find out what stage I'm in. And I've already started the UDCA treatment. I'm supposed to get my liver tests rechecked in a couple of months.
    I still need to get the lung CT and see a pulminologist and to get the thyroid biopsy.
    Why the heck do I have so many issues? I thought I was pretty healthy. I mean I need to lose about 20 pounds, but other than that I thought I was pretty healthy?? Ugh. Life can really throw some wrenches at you sometimes.
    I'll just keep trying to do what I can that might help me live a little longer with my liver...

    Monday, March 5, 2012

    A start to the gluten auto immune connection

    So here is a website with tons of links to studies with information about gluten and auto immune diseases:

    This is a video, it's free to watch- there's stuff on the page to buy info, but it's free to watch the video:

    That'll get ya started.  Many more to come!

    Some statistics and information I gathered

    I guess I just can't get too much information...Not so sure that's a good thing.

    Here are some random tidbits about PBC:

    The prevalence of PBC in families with one affected member is estimated to be 1000 times greater than that in the general population. The disease primarily affects women.  {So think I'm worried about my daughter? Hell yea...}

    The average age of patients undergoing liver transplantation for PBC is in the range of 53 to 55 years (mean age of diagnosis is 39).

    {The part about "debilitating bone fractures" sounds fun?!}
    In addition to considering the MELD score and Mayo model, we suggest that patients with PBC be referred for transplantation evaluation if one or more of the following is present:
    •The plasma bilirubin concentration is greater than 5 mg/dL and is increasing
    •The serum albumin concentration is below 2.8 g/dL (28 g/L) and is decreasing
    •Signs of decompensation or portal hypertension develop, such as ascites, variceal bleeding, coagulopathy malnutrition, or encephalopathy
    •The patient has intractable pruritus
    •The patient has recurrent, debilitating, nontraumatic bone fractures

    {Oh goody, liver transplant doesn't even fix it anyway!}
    Recurrence of PBC in the transplanted liver — It is now generally accepted that PBC can recur following liver transplantation.
    In a report of 421 patients from Pittsburgh, PA, recurrent PBC was observed in 8 percent of patients after five years, and 22 percent after 10 years [11]. Higher rates were described in a series of 400 patients from Birmingham, England, where recurrence was observed in 18 percent at five years and 30 percent at 10 years [9]. A later report from the same group involving 485 patients found a recurrence rate of 23 percent during a median follow-up of 79 months.

    Primary biliary cirrhosis remains one of the top five indications for liver transplantation in the USA. Survival rates of patients and grafts after liver transplantation are reported to approach 92% and 85% at 1-year and 5-year intervals, respectively.137 Fatigue and pruritus usually resolve, with metabolic bone disease improving after transient worsening in the first 6–12 months after liver

    {Thankfully I'm asymptomatic right now, so I guess I have 16 years?! Nice to know when my timer will ding...}
    Generally, the median survival duration from the time of diagnosis is 7.5 years for patients who are symptomatic and 16 years for patients who are asymptomatic.

    {I like how it says 'delays' ugh}
    Reports suggest that UDCA delays the need for transplantation or delays death.

    {FINALLY, something that actually sounds positive! Lets hope I'm responsive to the UDCA treatment!!!}
    Patients who achieve biochemical response to UDCA after 1 year of treatment reportedly have a similar survival rate to the matched control population, and this observation might be used to identify the population of nonresponders who will require alternative or additional treatments

    {Or not...}
    Liver transplantation appears to be the only life-saving procedure.
    15-20 mg/kg of UDCA (ursodiol) provided best out come.

    {My sources, along with a trial UpToDate membership...}

    So honestly, I'm being a little sarcastic with my comments.  I mean, all the data does sound super bleak, BUT I've also been doing a lot of research on autoimmune diseases as a whole for a while now because I was trying to control my lichen sclerosis...SO, I've found that there is A LOT of evidence pointing toward grains (specifically the protein in grains known as gluten) causing 'leaky gut' which is then associated with causing all the auto immune diseases.  I will post PLENTY of references on that as time goes on.  But for now, I just wanted to say I'm not feeling nearly as negative as my comments sound.  I actually have very good hopes for my grain free diet and increased vitamins to help me cure or at the very least, slow down progression.  That along with my UDCA treatment will hopefully give me a normal life...

    Looking forward to my appointment tomorrow!  Need to find out where I stand and get started on the treatment!  I have a kid that needs me to stick around a good long while! :)

    Sunday, March 4, 2012

    Waiting is so hard to do

    Most of the weekend I had my niece, Gia, so I didn't have to think much about what's going on. But since she left I've been left up to my own devices. I'm just trying to stay busy. Zoe and I planted some more seeds in the garden. We are growing a good variety of fruits and veggies this year. Zoe is already looking forward to the harvest :)

    So now I'll just try to focus on getting ready for the week. My parents are coming in for the specialist appointment on Tuesday. So we should have a good couple of days hanging out. 

    Oh and joy, because I don't have enough to think about and deal with- my fairly new fridge now leaking water in the floor. So I'll need to call for warranty work. I'm sure that'll be another huge pain to get fixed. Ugh. 

    At least I have so many things going on, I can't dwell on any one particular suck item of my life. 

    Instead I will focus on Zoe and work and school. And try to forget the rest...good luck to me! LOL

    Friday, March 2, 2012

    And so it begins...

    Today I was diagnosed with Primary Biliary Cirrhosis.

    For those that don't know what that is, here a link-

    I am feeling like I'm totally falling apart. I originally had just gone in to the doctor for a routine blood test- I felt (and feel) ok!

    Then my liver enzymes were way too high.

    ALP 937 u/l
    AST 235 u/l
    ALT 389 u/l

    Plus my bilirubin is a bit high.

    So then I got an AMA test - that's anti mitochondrial antibodies. They shouldn't exists at all- or be very low. Anything over 25 u/l is a positive for PBC. Mine came back 107.6 u/l. So yea, I guess that's a positive...

    So I also got an MRI (MRCP). And they also found an enlarged spleen (probably from the PBC) and a spot on my right lung.

    So I have to get more testing for my lung, including a CT scan.


    I have known I had nodules on my thyroid since 2007. I have had several biopsies done from 2007-2010. Then I stopped going. Well one of them went from 5mm to 2.5cm since I'll have to get another biopsy done- this time by a surgeon...

    And to top it all off I have an ear infection from my allergies! Ugh.

    Seriously?! I didn't even feel sick!!

    This medical stuff is just a small part (imagine that!) of all the shit going on in my life right now. I can say I definitely didn't need more on my plate, but I'm a big girl and I will deal with it. More to come on the other topics...

    I'm creating this blog to vent, but to also (mostly) keep family and friends updated with what's going on. I also plan to use it to talk about anything and everything bothering me or just going on in my life, good or bad.

    Thanks for joining me! Stay tuned!