Here we go again... ;)

Hey! I kept writing here after I got back from Mongolia because it helped me stay positive about everything that was happening. It has been 20 months since I got sick, and we recently started up the doctor appointments and tests again because sometimes it feels like my pain is worsening. We are doing more tests to check the celiac disease theory but are now actually pretty sure that isn't the cause of my illness pain. We are checking for neurological autoimmune diseases now, I did have a very detailed MRI and luckily it came back normal. So we still don't have any answers, but at least we don't have bad answers. ;)

I never thought that this would still be going on, for years or maybe even permanently, so, to help myself make the most of this I want to start writing here again.

Even though I am not currently following a gluten free diet, I learned so much about it and I learned how many people it affects, so I want to share what I learned about celiac disease real quick. Chances are that we all know someone who has this disease, and it is helpful if we understand it :)

WHAT MOST PEOPLE DON'T KNOW ABOUT A GLUTNE FREE DIET...

- Celiac disease is classified as an auto immune disorder, and gluten (even trace amounts, as small as a single crumb) causes the body to attack itself. It prevents the body from absorbing nutrients in the intestines, and can damage other parts of the body.

-It can take several weeks for the body to stop attacking itself after gluten is gone from the system, and can take even longer to heal. (this is why most ppl with celiac disease can never ever cheat and are so "picky" and careful about everything they eat. Even taking a bite off a fork that has touched food with gluten, or using a pot that hasn't been washed well, can cause pain and damage that takes weeks to recover from)

- Gluten is not only in wheat. It is in barley, rye, and some other uncommon grains. So anything that is malted (from barley) has gluten. Even oats, which are naturally gluten free, are stored in the same silos as wheat so they make special gluten free oats.

-By law food companies are required to say when a food contains wheat, but they are not required to say if it contains gluten. Just because something says it is wheat free doesn't mean it is gluten free.

- Eating out is so hard because even when you ask for a salad with no croutons, the cook that puts the croutons on the other salad uses the same hands to get your lettuce, and even that can cause a reaction.

- Things like tortilla chips and French fries are naturally gluten free, but in restaurants and fast food places these are usually fried in the same oil as things with gluten (breaded chicken, flour tortillas, etc) so they can't be eaten.

- Modified food starch is often from wheat, can't be eaten. This is in almost everything: candy, yogurt, popsicles, fruit-snacks, instant potatoes, ranch dressing, lunch meat, some cheese. So even when something seems naturally gluten free (like yogurt or lunch meat) it is really important to always check the ingredients.

Health

Hey I found out that the thing they saw on my back is just a small cyst, and after further examination they don't think that is the source of my pain. We don't know why the cyst is there, but it is small and doesn't need to be removed surgically. This is actually okay news, we still don't know exactly why I am in so much pain but I really didn't want to have anything wrong with my spinal cord, so I am pretty relieved. I am trying a normal diet with gluten now because I hadn't noticed any benefits from following the diet the past several months, so we will see if eating gluten makes me worse. I had pizza hut stuffed crust pizza this week and it was even better than I remembered it ;) Thanks for the support!

Another health finding, maybe the real cause.

Over christmas break I went to see a neurology specialist at the University of San Francisco, and after examination he noticed I have an area of skin that goes from my back on the right side and wraps around my right ribs that has sensory abnormalities, and he suggested a targeted MRI scan of that area of my spine. I heard the results yesterday, and they found a mass on the right side of my spinal cord at T9 and T10.

We don't know if it is a cyst or a tumor yet, it is a little smaller than a centimeter and luckily it isn't pushing into the spinal cord. It is at the base of some of my nerve roots, so that explains the severe right side pain I've been having the past year. We are talking with neuro surgeons on Monday to discuss options. This is actually good news, as we now know the source of the pain. It is also a good sign that I have been sick for a year and the tumor is still pretty small. They think it might have been too small to be noticed on MRIs I had done months ago, I'm very grateful that we decided to check for this. This also probably means that I don't have celiac disease, so I'm pretty excited about maybe getting to eat normal pizza again ;) I'll keep you posted.

A Poem, just in time for Christmas.

Nativity

A babe in a manger, mother resting and tired,

animals looked on while the husband admired.

A few startled shepherds were surprised in the night,

angels above them sang beneath new star light.

Privileged they were when they headed the call

to run to the stable, at Christ's feet they did fall.

Miles and miles far in the east,

kings gathered and studied which way they should seek.

They wanted so badly to find the child fair,

but it took years of searching to finally get there.

In the neighboring inns more lay quite in bed,

not knowing who was born or the path he would tread.

Who would you be, if called to be there,

maybe the mother weary under her load to bear.

Too young and inadequate to raise God's begotten son,

but you have been chosen, His will, not your's, be done.

Then humble and trusting you prayerfully seek

for the strength to accomplish what's been placed at your feet.

Or are you like Joseph, asked to take a role that's not your own,

always standing by the ones you love, helping them down life's road.

Or has chance blessed you, like the shepherds that night,

you recognize God's messengers, leave all and hurry to the sight.

Perhaps you feel so far away from where you want to be.

The wise men searched the hardest, but the new born they didn't see.

It took years before the kings' righteous desire was fulfilled,

but persistence was rewarded, in front of God's Son they kneeled.

Or are you asleep, like those in their beds,

Do you know it was for you that the Christ child lived and bled?

So many blessings are yours to be found,

look and you will find God's love all around.

Like those in the Nativity, Christmas is different for all,

some get to see angels, some stay in lowly stalls.

Some must learn patience as they face years on the road,

others have loads they can't bear on their own.

No matter who or where you are on this year's Christmas Eve,

Let us all remember this: Christ came, died, and lives for you and me.

As I wrote this I realized I've felt a little like all the people in the nativity story. But the important thing is to remember and be grateful for Christ, and God's love. Happy holidays, and Merry Christmas to you all :)

SMA syndrome, and Gluten Free

Sorry its been so long. I had surgery at the end of September to take out my hyper active gallbladder and check for evidence of celiac disease, but the main reason for surgery was to correct something called SMA syndrome. Apparently it is very rare, and it is caused by rapid extreme weight loss. There are certain fat pads in the body that help hold things in place, and I lost the fat pad that held up my superior mesenteric artery. It blocked my intestines, pinching off the duodenum right outside my stomach. I cant remember how much space there was but it was something like less than 8 millimeters. That is why I was never hungry and why I couldn't eat very much at all, unless it is surgically corrected it is permanent and gets serious, as you literally can't eat and you starve. I think it is a miracle that the doctor thought to check for it, he was briefing me for the gallbladder surgery and as I was walking out the door he thought to check for this, on the very small chance that I had it. Tests then showed I had it pretty severely, and I am SOOOOOO grateful that I didn't need to have surgery twice ;)

The surgery was a success but because my nerves are hyper active the pain was difficult to control, I was in the ICU for a few days for pain control and ended up getting an epidural. I always expected surgery to be tough but there are all these things you don't anticipate that made it one of the roughest weeks of my life, I feel for all those out there who have had similar or worse experiences. I'm grateful I didn't know how bad recovery was going to be or I wouldn't have been nearly as excited about surgery haha. I had to withdraw from school last semester, and have been focusing on recovery ever since. The Celiac Disease was confirmed and blood tests showed that I have the type that attacks the nervous system. I have been on that strict diet since October, I've stopped loosing weight (still not gaining), and can eat more than I could before. Surgery fixed some of my bad right side pain, but I still have chronic pain pretty bad. This past week I could tell my energy and physical endurance was a little better, and that is exciting ;)

It has been over a year since I got sick, and it is interesting looking back over the whole year, and see that I didn't "do" much at all. And even though I wasn't able to take classes, I have learned so much. It might be months to years until I am back to normal, but I now do believe that I really will get better. I will rejoice and thank God every day that I wake up without pain for the rest of my life.

So, i'm learning a lot about Gluten free diets! Apparently it is way more common, and its symptoms way more broad than doctors anticipated. The typical blood test is inaccurate over 20% of the time, if you or a loved one is struggling with anything from IBS to fatigue that can't be explained, maybe ask a doctor to think about Celiac disease, and do more than just one blood test. I love suggestions for meals or anything, and I hope in the future to be able to help those diagnosed with this. Hope you all have a great week and enjoy the holidays!