Breaking it down, Celiac style

As I've heard a few times now in the Celiac community "my Celiac is not your Celiac." This is the MOST true statement I've heard in a while. Like most if not all diseases they affect people differently. Some people have minimal to no symptoms, others are debilitated. From the severity of my symptoms to my test results and biopsies its clear I have a bad case of it.
In most of my Dx's over the years when there's a number set of normal ranges I've always had a result that was very evident and clear.
With my hashimoto's the normal levels are between 10-100, mine were at 22,000 (yep...didn't stutter) when I was at my worst. Then after having it for 2 years it started to affect my thyroid function. A normal persons range for thyroid levels is between 0.3-3, and it some other places dr's use 0.5-5, when I was feeling so ill and couldn't function some days after 3 months of suffering waiting for my appointment my thyroid levels were at a whopping 31! Very evident why I felt like I was dying. Hormone function truly affects everything in your body. And lastly when I was tested for celiac disease a normal person test sample can then be classified as negative, (0-20 units); weak positive, (21-30 units); or moderate to strong positive if greater than 30 units. I was at a 98. And after 6 long months on a strict GF diet, I still tested at 46 about 6 weeks ago. That was when I had to go under for a minor surgery of multiple biopsies in my esophagus, stomach, small intestines and my colon. All mere weeks after turning 27. After I got those results, it somewhat felt like my journey for answers was still so far away. They took 7 biopsies total, 4 more than planned. They found my small intestine, stomach and esophagus were covered in white blood cells and a disease called eosinophilic esophagitis along with severe redness and inflammation throughout those areas and a significant amount of damage to my small intestine. (Which I'm on 3 medications right now to try and reduce a lot of that) The only test that came up healthy was my colon. Oh yeah, go booty go! Haha... :)
My dr said this is all a complication of untreated food allergies, which means not only am I not allowed to have gluten (and wheat, barley, rye and oats) there's definitely signs that I have way more allergies I'm unaware of (awesome!! Lol, not). I have waited 5 weeks now for my appointment to see a allergist and a new nutritionist and I still have to wait until the last week in January. Doesn't even make sense when everyday feels like I've eaten gluten, when I haven't still. It's clear my levels were cut in half with a strict GF diet, but its also clear its still over 30 (48) with is too high.
This all stemmed after my pregnancy too. Weird right? And ironically these things trigger after pregnancy or during traumatic times or stressful events. After a different traumatic time in my life during 07, my Hasimoto's started. Ironic?
It seems crazy this has been my life this far, and even more crazy the way my life has always been. I never in my wildest dreams thought I'd ever have to deal with more than my rare kidney disease, never in my life. I thought that was my bad card, I thought that was the one card dealt that would affect me forever, but I was wrong. I didn't think I was invincible, but I never thought I'd truly be able to handle much more after what I did the first 10 years of my life.
Everyday I've amazed even myself the strength I've had to make it through some dark times. It's not easy, ill tell you that much. My husband has been my absolute rock and everyday I thank my lucky stars that I never settled.
Truly the last few months one of the worst side affects that my auto immune diseases cause for me (and nearly all auto immune patients, from my experience) even beyond pain is depression. That was the first symptom that was present besides extreme weight gain when my auto immune journey began and I've battled it since 07. Some weeks I'm so happy and some it just takes over. It's a constant struggle. Previously I had many coping techniques along with exercise and meditation and I successfully had my depression gone for nearly 2 1/2 without taking meds or anything. It didn't come back until I was 6 months pregnant and it was in full swing. Has been since that day in feb. 2011.
So for anyone who doesn't truly understand Celiac disease let me tell you it's not fun. It's not a fad. It's actually quite annoying beyond anything. I haven't lost weight, in fact I have gone from losing a few pounds a week and starting my GF diet at 140 that was in April of 2012, now in December 2012, I am at 155. So for all you stupid ass celebrities saying "OMG GF is soooo amazing, I've lost so much weight!!" Really?
As I said I'm still in my first year trying to live a full GF lifestyle, not just diet so its understandable its annoying at times.
I first had to start with food and drinks with Wheat, barley, oats, rye. I also was told about cross contamination and the upmost importance of this. This means basically going to a restaurant with my level of Celiac is something I HATE doing unless its in a dedicated GF kitchen, which from what I found is slim pickings outside of my house.
Cross contamination happens everywhere, toasters, pans, cutting boards, sponges, dishes, utensils, counters, etc...you get my point.
After sitting down with my GI dr and nutritionist it was brought to my attention all the places gluten likes to hide is NASTY self. Condiments, Medication (which I take 17 pills a day, half of which at this point have gluten but there's no known alternatives yet, and without my meds I will die from my kidney disease, literally), toothpaste, beauty products like makeup, shampoo and conditioner, styling products, lotion, creams, soda, cleaning products like laundry, soap and dish detergent....can you believe I'm still going? THAT IS CRAZY!!!!
I can't tell you how much money wasted I have sitting in my hall closet full? Also can I tell you how strenuous shopping is? Starring at labels, feeling confident its there's no gluten and then researching everything while in the store on my phones Internet only to find there's gluten in it. It's just NOT listed bc the FDA doesn't have strict guidelines about this genetically processed version of wheat that's proven not anything close to what our grandparents and before had eaten in their lifetime, as well as many other horrible ingredients.
Also it's annoying to switch brands and find there's gluten in one but not the other. Or the fact that I am supposed to stay clear of food and drink processed in facilities that process wheat.
I once bought a can on trader joes chick peas, love them! I bought a off brand of chick peas at Walmart weeks later, started getting sick and found out it was processed in a wheat facility. I racked my brain for days before I even questioned the can.
People don't get it either. My step mom once told someone (while she thought i wasn't listening)in my beginning stages with a Celiac DX and GF diet that I could eat an oversized cupcake on my son's first birthday "Because its ok, she cheats all the time." Huh crazy, what people DO NOT get is people with Celiac disease DO NO cheat. It is NOT an option. It's the equivalent to eating rat poison. It will kill them over time. And that is not an understatement.
Also a lot of my direct family and in laws can not remember for the life of them I can't eat certain things. And by certain things I mean the obvious like crackers, breads, pastas. Stuff like that. I don't expect them to remember everything, but I kinda wish they'd respect and care about me enough to know its the farthest thing from easy and going places to eat whether its out in public or to someone's house is more stressful than anything. It's more of a chore to me now.
People also don't understand just because you found or made something GF, it doesn't mean it's TRULY gluten free. Was your kitchen contaminated when you made that? Did you touch any gluten while you were making that? Did you cover your pans in tin foil when you made that? Probably not.
Also when being bought something, they don't understand the wheat facility factor or the "fad factor" just because a product says Gluten free it doesn't mean it is.
The FDA allows up to 20 parts ppm of gluten in food which does not mean its safe for all Celiac's. A tiny crumb from a crouton left on my salad can have me keeled over for a few days, depending on the amount, throwing up, extreme headaches, fatigue, brain fog, and without a doubt diarrhea for weeks. Don't believe me, please come stay in our guest room for a week! :)
But what the reality is the SAFEST thing for me and all Celiac's is to steal clear of ALL processed foods and stick to only fresh fruits, vegetables and homemade dishes and treats. Trust me when I say it's harder than you think.
I got myself and hubby off of most frozen processed food a few years ago and that was easy, eliminating all processed food would essentially mean cans, boxes, bags, everything under that umbrella. That is very hard to do.
The rules I've read from learning and doing the 100 days of real food challenge is if its boxed, bagged or canned it can only have 5 ingredients or less. And seriously if you can't pronounce 75% of the words, you really,probably shouldn't eat it. Take a look at the labels the next time you shove something processed down your gullet will you?
I truly believe along with genetics, environmental and food factors are what lead to my auto immune diseases. And that scares me a lot.(Since I already have 2, they feel with other symptoms I have I have another still too. I've been tested for MS, that was clear but my dr's think there's fibromyalgia, RA, and or Addison's Disease as well.)
I'm trying to teach my son and husband healthy ways to live through food as I learn myself. It's truly eye opening and I insist everyone do some research before they out stuff on their mouths, these days.

Phew...that was a long post/rant :)

Thanks for listening :)
M

I can feel the tears coming..

I think at this point I'd {almost} give anything to be more normal health wise. I can't live like this anymore and it just keeps getting worse. I know I'm lucky for the things I've gotten through and it could very well be worse. It's just very hard day to day dealing with all of these side affects and not having the answers just yet just getting sicker each week. I have 3 serious chronic conditions that are always in constant battle with each other. I have 13 drs appointments in the next 70 days I'm really hoping something happens.

I started not to feel very well last night and ended up waking up at around 1 shaking, sweating the freezing my ass off only to run to the bathroom and throw up. Happened about 4 times last night then carried into today. My head is pounding my body hurts. I'm not getting sick or anything, this same thing happened for the last two years where I'd have bouts of these symptoms everyday. That's how they found the Celiac disease. I can't get into an allergist like they've requested until jan.30....that's ridiculous. How am I supposed to live? Function when I get dizzy, faint, throw up, etc etc etc!!????

I know it could be worse, I could be in a wheelchair or have no arms. Or I could have full blown cancer. I dealt with cancer with my thyroid and it was only in the beginning stages so I was lucky. I know that can be scary.

I'm trying, I'm really trying. I just feel so awful everyday. And it's making me super depressed. I just want health, that's all I want. I'd trade it for almost anything.