"My last medical test showed I was crabby"

My family suffers from Celiac Disease. Living life on the road and maintaining a diligent and healthy meal plan was a concern when we started this venture. The first thing that comes to mind when one says "travel" is eating out. With CD, there aren't many eating out options. However, one thing that sits in the back of my head is knowing we are headed for some extremely culterally rich places and I won't be able to truly experience it because I cannot have the cuisine that they pride themselves on.

With CD there is no pharmacuetical prescription to control the disorder. It is an auto-immune disorder that responds only to a strict gluten free diet. It also hasn't been hugely embraced by the Western/American medical community. We have been shot-down by multiple providers when we bring our medical history to their attention while trying to address other medical concerns. I can only imagine the the first thing documented as our diagnosis in our charts "cranky disposition otherwise healthy". What are we suppose to do with that! When moving onto another doctor hoping to gain some ground the only thing we really can say is "my last medical test showed I was crabby". Noboby was even interested in entertaining the possibility and when we asked for testing we were told "you don't have CD unless you have chronic diarhea". There are over 300 symptoms many of which do not manifest on the outside. Each person is different and affected by CD differently. Four out of five of us Jennings have CD. We are a large enough group to start our own control study. All of us have different symptoms. The one confirming symptom is DH. Dermatitis Herpetiformis. All three of my kids have it, but it is located in a different spot on their bodies and their rashes all vary in appearence. It has been misdiagnosed as excema. For myself, I didn't know how crappy I felt until I felt good.

Two weeks ago I knowingly exposed myself. All I can say is I am still learning. I stopped and got lunch for Jeramie at Taco Bell. I couldn't help it. I had to have one. A bean burrito. I have always loved them. It pairs especially nice with an ice cold Dr. Pepper. Now that is culteral cuisine! It started with burning in my intestines. Not cramping of my stomach, BURNING. Like someone had scratched my insides with the end of a paperclip and then poured acid on it. Everytime I thought of food, smelled food or talked about food, it would burn. I didn't really eat for three days after. Then it progressed into joint aches. Especially in my right hand. Like arthritis, it just ached. I caught myself rubbing my knuckles like an elderly person who really does have arthritis. I had generalized joint stiffness but didn't give it much thought because I really felt the ache in my hand. I noticed that I have been clinching my teeth again, probably grinding them at night also. I haven't done that in MONTHS. My energy is decreased. I once again am having a hard time getting out of bed in the a.m. I am sure that is because I am not sleeping. The final symptom that showed up this time was my periodontal disease. It is totally localized, and changes areas each time. Mostly inflammation with bleeding. I use to think this was related to hormonal fluctuations but now know it is due to gluten exposure. Seriously, I work in the dental field. Periodontal disease is not something I take lightly. I would be curious to see what the result would be if every perio patient were to be tested for CD. I wonder how many of them have undiagnosed Celiac Disease. So was the burrito worth it? That would be a BIG no. I have to worry about more than calories or immediate indigestion. I get to suffer for two weeks for every minor "treat".

I have seen SOO many improvements in the kids. They, however, cannot have dairy as well as gluten. I am still hopeful that they will be able to have it added back in after they get cleaned out and healed but I have tried to re-introduce it to them three times and each time the response is more negative than the last so now I am coming to terms that it is probably gone forever. The most recent attempt was with a vanilla shake from Mickey D's. Within 24 hours we were paying the consequences. Andon broke out with DH. Lexi had a "belly ache" and her "brain hurt". Addi has been incorrigible. To the point that someone thinks she is mean. It is hard to describe to someone else because it sounds like you are making excuses for your unruly kids. You have to actually live with it day in and day out to get it. She isn't mean, she feels like crap. She reminds me of Seabiscuit, most people who came in contact with him saw an unmanageable beast. The ones who understood him saw he was all heart. Thats our Addi. She is BUSY, but I am not so sure she is mean. I see Andon's DH sores and cringe knowing that is what the inside of his small intestine probably looks like to. Why do I do this to them? I hate it that I give in.

I have a renewed confidence in western medicine though. UCLA has recently opened up a Celiac Disease clinic. It is starting to get some attention. I wonder how many people will say they want tested because their "last medical test showed I was crabby".

I have found that I am extremely suited for the traveling lifestyle. I am always prepared for whatever. We have our gluten free home on wheels at all times. I am not about to be a victim of faulty genetics. I choose to be pro-active and maybe even an advocate. The last thing I want is for people to think "RUN! the celiacs are coming".

Romans 7:15 I do not understand what I do. For what I want to do I do not do, but what I hate I do.