At age 22 while living in Mongolia I developed a severe chronic pain condition that effects every aspect of my life. Continuing this blog reminds me that life's challenges are stepping stones meant to lift us, not roadblocks meant to defeat us.

Wednesday, June 15, 2011

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 :)


- 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.