![]() Recently I've realized that most people don't actually know my story when it comes to food and other related health issues. Most of y'all know that I can't eat most foods, and a great deal of you know the list of foods I'm unable to eat, but only a handful know the whole story and all that it entails, and the journey that these past 5 years have been. Let me start out by giving you a little background about myself : I was a pig. For reals, guys, it was bad. I had a super high metabolism, which meant that I could pretty much eat whatever I wanted and not gain weight. Ramen, donuts, pasta, ice cream, cinnamon rolls, candy, pizza, hot dogs, cheeseburgers, nachos, German chocolate cake, fudgesicles, snack cakes, chips, mac & cheese, cookies, cereal, corn dogs, Mountain Dew . . . if it was unhealthy, I ate it. The greasier the better! Eating really healthy for me was hot dogs or pasta. And not only did I eat crap, but I ate a lot of it. I could pack it in like nobody's business. I was the 9 year old that ate 3-4 big, FULL bowls of cereal, and 8-10 slices of pizza. Doesn't really sound like much now, but lets keep in mind that when I was 9 people thought I was 4. I was TINY. But I ate as much, if not more, than a grown man. Summer of 2008 my family & I drove down to Cali to visit some family, who happened to be gluten free. While we were there my mum was asking my aunt about gluten intolerance and how it correlated with symptoms my sister had. What is gluten, btw? Gluten is the protein in wheat, barley, and rye, most commonly associated with bread-like items, though definitely not limited to. My sister was chronically anemic (iron deficiency), had constant sinus infections, stomach aches everyday, heartburn, fatigue, brain fog, as well as some other unpleasant symptoms. The more they talked about it, the more it made sense - for everyone in the family except me, of course. The rest of my family all had their little symptoms, and while the brain fog one kinda made sense, I was convinced at that point that I was just unintelligent, so the food wasn't the issue for me. Here's a fun fact about me: I'm stubborn. My family came home from that trip, did a bunch of research, and went off gluten for a little while to see if it would help. And sure enough, it did. A lot. I, on the other hand, didn't participate in this. While I primarily ate gluten free food since I still lived at home, I ate out as much as I could and I had my stash of gluten-esque foods in my room: mini fridge stocked with frosting and Mountain Dew and a whole box dedicated to candy, cookies, and Doritos (and other such goodies). I didn't realize it at the time, but food was definitely an idol for me. I was a hardcore glutton - a gluten glutton. I refused to believe that I was intolerant to gluten. My mother, on the other hand, believed that I was intolerant to gluten. She kept trying to convince me to get tested so we could find out for sure. But I'm stubborn, and didn't really see any point in it since I didn't really have any symptoms. Apparently that didn't matter. After 8 months she managed to get me tested (under protest), for both gluten and casein. What's casein? Casein is the protein in milk. Pretty self-explanatory (though, again, it's definitely not limited to just milk-esque products). Remember my post about pooping in a bucket, freezing it, and then shipping it to a stranger? Well, that's what I did. I wasn't really concerned about the results for the most part. I mean, there was no way I was intolerant to gluten. I ate so much of it and didn't have any symptoms. I started getting a little nervous the longer I had to wait though. I usually think in terms of "What if.."s. What if I was intolerant to gluten? What would I do then? I decided that if - IF - I was intolerant to gluten, then I could just cheat every now & then. That gave me hope. Since I didn't get stomach aches or headaches when I ate it, I figured it wouldn't be a big deal if I cheated from time to time. I still prayed that I wouldn't be gluten intolerant though. Ohhhhh, I prayed. I'm pretty sure there was some begging at multiple points. February 2009, my mum called me into the office one day with the news of my test results. "You're off the charts," she said, "for both gluten and casein" What does it look like to be off the charts? It means that if the highest number on the tests was 10 (which it was), I was at 20 for casein and 26 for gluten - and that's after eating primarily gluten free foods, which means it technically would have been higher. "You also have Celiac Disease" That did it. I was in tears at that point. That was the one I was not expecting. That meant that I couldn't cheat with gluten. Ever. My coping mechanism just got taken away from me - and my convenience. What is Celiac Disease? It's a condition that damages the lining of the lower intestine and prevents it from absorbing parts of food that are important for staying healthy. The damage is due to a reaction to eating gluten. So basically, gluten intolerance 2.0. LEVEL UP! Celiac Disease also makes you more prone to other diseases and health problems, such as liver failure, heart failure, multiple types of cancer, diabetes, etc. It's a miracle that I don't have diabetes, what with how I ate, the fact that I have Celiac Disease, and it runs in my family - I should have it, but I don't. God is good. Oh, also, there's no cure for it, btw. Nor do I believe it possible for there ever to be. The only way to combat Celiac Disease is to eat strictly gluten free. Now, how did I have Celiac Disease without knowing it? I'm what's known as a Silent Celiac - I didn't show any symptoms. I was damaging myself without ever realizing it. I was able to have one last hurrah, and spent the next week gorging myself with nachos, pizza, donuts, Ramen, German chocolate cake, candy, ice cream, Quiznos, and Taco Bell. And then that was it. No more gluten or casein. Something I learned about gluten during the 8 months before I got tested is called cross-contamination. It's basically when something gluten free comes in contact with something with gluten. So like, if I were to put a piece of gluten free bread in a toaster that had normal bread, that would be cross-contamination, and that would be a no-no. We learned more about this the farther along we got in our journey. Something else I learned is that gluten is in EVERYTHING. Think I'm exaggerating? It's in toothpaste, deodorant, soap, laundry soap, dish washing detergent, shampoo, fragrances, air fresheners, make-up, lotion, candles, cleaning products, the wax coating in limes/lemons/oranges, dryer sheets, adhesives (tape, bandaids, the thing you lick on an envelope, etc), and more. I watched my family start switching some of that out, and I didn't want to do the same. Being gluten intolerant meant that I would have to stop using Axe deodorant - I was not happy about that. My family decided when they started this journey that if they were going to be gluten free, they were going to be gluten FREE. We were going to take cross-contamination seriously because of all of the research that was done and testimonies of others that we've heard. 2 months later I had my first gluten reaction ( http://lifewithlew.weebly.com/1/post/2013/09/tbt-star-wars-not-so-subtle-reactions.html ). I could understand why my family was so motivated to give up gluten, it was awful. Little did I know that would be one of the mildest reactions I would have . . . Gluten reactions (or any other food reaction for that matter) vary for everyone. For me, as I became more sensitive, it included: nausea, diarrhea, vomiting, hot sweats, dizziness, incontrollable shakiness, brain fog (that lasted up to 6 weeks after the initial reaction), joint pain, sleep deprivation, fatigue, skin issues (acne, boils, rashes, eczema, etc), and excess drainage out the wazoo. The further along in this journey we got, the more we learned. We were starting to discover just how big of a deal cross-contamination really was, and that the cleaner you are from gluten, the more sensitive you become to it. We also were learning more of how many "gluten free" labeled items were cross-contaminated. So many products that have a "Gluten Free" sticker on it are made in facilities that also manufacture gluten, many of which use the same lines for both products. This was really discouraging because we were continuously finding more & more foods that were like that and had to pull them from our diet. In 2013 the FDA released a regulation that in order for a food product to have a GF label on it, it had to be 20pp (parts per million) or less. Which is great, but still didn't help us. While it's better, a lot are still cross-contaminated. Our family aims for 0ppm - 3ppm at the most. November, 2010. It was a Monday morning. I had just woken up when all of a sudden, I was like, " . . . I need to go to the bathroom". And I'm not talking, "Oh, I kind of have to pee" kind of have to go to the bathroom. I got up and rushed to the bathroom. Well, if you can call it rushing. You wouldn't think it would take that long, seeing as my room is right across the hall from the bathroom. But oh, buddy . . . I got out of bed and nearly fell over. Now, that's not exactly too unusual of a thing, but this time was different. I was soooo dizzy. Everything felt like it was in slow motion (which, was actually really cool, if it hadn't been for the circumstances). I stumbled to the bathroom, thankfully making it on time. I was shaking, nauseous, dizzy, and had broken out in a hot sweat. I couldn't figure out what was going on . . . I spent that day laying on the couch. I zoned out watching Animal Planet cause I was too exhausted to do anything else. I finally mentioned what had happened to my mum, and she was like, "You know, Lew, I've been watching you . . . I think you might have an issue with nightshades". What are nightshades? Honestly, I suck at describing them. But basically they're potatoes, tomatoes, eggplant, goji berries, peppers, and tobacco. I thought that was ridiculous. She then asked me what I had been eating recently. "Mashed potatoes, kettle chips, and GF pretzels mostly". See the connection there (the pretzels were made with potato starch)? Well, I refused to . . . again. A short time after that my mum uttered that glorious phrase again: "You know, Lew, I've been watching you . . .". Apparently this time she thought I had an issue with soy. Honestly, this part of the story is a bit fuzzy for me. The next few months I was really sick. I vomited 10 times in one week, had constant brain fog, was super weak, had no energy, constant reactions, and we couldn't figure out why. Part way through I decided to try going off nightshades, and I recovered, but not fully. In mid January I got tested to see if I was intolerant to soy. February 21st I got my results back: I was intolerant to soy. Another intolerance. Cool beans. Add it to the list. The next year was full of more struggles. During the Summer I decided to do my own version of the elimination diet (the elimination diet is where you stop eating a bunch of different foods. That, combined with probiotics & antibiotics, gives your body a chance to reset itself and heal). After about 4-6 weeks you can start reintroducing foods back into your diet one at a time to see if your body can handle them again. It's not a true elimination diet without the antibiotics n' such, but it can still help determine if you're eating too much of a certain food or if you just can't handle that food all together. Again, it gives your body a chance to reset and heal. I wanted to try it on my own without the antibiotics, just to see if it would make a difference. My body wasn't doing very well at that point, so it seemed wise. And I think it was. Almost 6 months later, though, I was still having to take foods out. It got to the point where I could only eat 12-13 different things: broccoli, spinach, elk, canned chicken, fish, tea, onions, basil, and some others. I didn't understand why that was happening to me. I wasn't eating any gluten, casein, or soy - cross-contaminated or otherwise - and my body was still rejecting almost everything I ate. Water gave me a stomach ache. We finally went to our doctor, who is aware of food intolerances and the like, and found out that I had SIBO and Leaky Gut Syndrome. SIBO stands for Small Intestine Bacterial Overgrowth, which was causing malabsorption. So basically, my body wasn't able to absorb the nutrients that it needed. Leaky Gut Syndrome is just that - my gut was leaking. The lining of my gut was so damaged that it wasn't able to keep toxins, waste, undigested foods, etc, from leaking through. What does all of that mean? Basically, my body was falling apart - and we're not talking puberty. My gut was leaking, I wasn't absorbing the nutrients I needed, I was losing weight (I was already under weight), I was nauseous, my blood sugar was constantly low (which caused a whole set of other problems, including dizziness, fatigue, and anxiety), and all sorts of other stuffs. So we started the legit elimination diet, which I was basically already on - had been for 6 months - but the difference was that I would get rid of the chicken and instead eat lamb. Apparently lamb is an anti-inflammatory, so it helps sooth the gut, which was fine by me! I also began taking antibiotics and probiotics, which, unfortunately were cross-contaminated, but at that point it was completely necessary. Also around this time we discovered that the gluten free flours we were using were processed in a facility that was cross-contaminated with soy, which was part of the problem. We were on the elimination diet for 2 months until we were able to gradually reintroduced foods back into our diet. It really made a huge difference in my life. For the first time in over 8 months I was starting to feel somewhat healthy. . . . And then a few months later, started vomiting and having issues again. My body was starting to reject foods again and, again, I couldn't figure out why. We were wondering if it was eggs, but I had been tested for them in the previous test and it said that I wasn't intolerant to them, so we didn't think it could be them. Eventually we came to realize that it was eggs - but not because I was intolerant to them, but because I was eating too much of them. Like, way too much, apparently. Here's the fun thing about all that happened to me during those 8 months prior. Because of all of the damage that was done, variation became a very important part of my diet. That was part of my issue before was that I wasn't getting enough variation in the foods that I was eating. Because of that, if I eat too much of any certain food, my body will reject it. Which was one of the reasons why that 8 month stint was so difficult - what my body needed was variation, but it was so damaged that I could only eat a few different things, and because of that, the more I ate what I could eat, the more my body would start to reject them. It was a vicious cycle. And apparently it decided to continue after the elimination diet. Doesn't really help that eggs are an inflammatory food . . . But the thing was, I was still having issues after I went off of the eggs. It got a lot better - I wasn't vomiting all the time anymore. But something was still wrong, and it got progressively worse, to the point where I believe I was vomiting once more. We came to realize that the same thing was happening with rice - I was eating too much of it and my body couldn't handle it. I got tested, yet again, in November 2012 just to see what was up, and possibly confirm some of our suspicions. And wouldn't you know it, the results came back indicating that I needed to not eat rice - at least, not very much. No more than twice a week. Now, let me tell you . . . I love rice. A lot. Rice with shredded roasted lamb, with salt and olive oil. Gah, just so good! Also, the same with chicken and basil. Ahh . . . so good. But, because I'm me, even twice a week was too much. Same with eggs. I've tried both of them a few times since then, and have yet to be able to really handle them well. Though there is hope for the eggs if we get our own chickens (which we are!). There are a bunch of other little factors that have added to this journey/struggle. In summary: • I'm intolerant to gluten, casein, and soy. • Greatly due to the damage that was caused to my gut, I'm now unable to eat nightshades, sugar, sugar substitutes (accept for my ice cream apparently?), caffeine, beef, pork, nuts, eggs, rice, or rice flour. • I had Small Intestine Bacterial Overgrowth (SIBO) and Leaky Gut Syndrome. • We discovered that I have really low blood sugar, and that it's imperative that I keep it up. • I'm the youngest in my family, but my gut was the most damaged, and I'm the most sensitive. • Because of all of the cross-contamination and different things we have to stay away from, we only have a few resources we can get food from: oranges, limes, and lemons from a place in California; lamb from a particular place and particular butcher; fish from a certain dock; and veggies from a place about 1 1/2 hours away. If we run out of any of these, there's no going to the store to replenish - we have to wait until they have more. • Because I'm a silent Celiac, I don't have the negative associations with eating regular foods like my family does. I can't relate a donut to a headache, or pasta to a stomachache. So when I crave something, it's all the more tempting. • I can't go into restaurants or (especially) bakeries because of the airborne gluten (basically, flour and such that easily floats in the air that you can breath in). • I have skin contact issues with gluten, casein, and soy. So if I touch it, I'll break out. You should see my skin after I use a bandaid (which, I'm not supposed to, but sometimes it's necessary) for a few days. • I have excess amounts of drainage because of Celiac Disease. Which is why, if you know me, I spit so much. Why not just swallow it? I do a great deal of the time, but there's a certain kind of drainage that if you just keep swallowing it, your throat will become more raw than a WWE smackdown. I choose to suffer as little pain as possible, and suffer my charm and class instead. • One crumb causes a reaction. • Because of my sensitivity, I can't marry someone unless they give up gluten, casein, and soy. • Every bit of gluten I ingest shortens my lifespan. One of the things I've struggled with the most, aside from, you know, the actual ongoing health battle, is how lonely it can be at times. Because we take cross-contamination so seriously and have a different definition of gluten free than most people, I don't have anyone near my age that I can relate to that's as sensitive as I am. In fact, I only know one other person, aside from my family, who is as strict as us. And even with my family, I'm the most sensitive. I don't struggle with it as much as I once did, but man . . . there have been many times where I've just felt completely hopeless and alone in that struggle. Whenever someone says, "Oh yeah, I'm gluten intolerant" my heart sinks a little, because so often they're on a different page than me, and it's just discouraging. Another thing that's hard is that a lot of people just don't understand; they just don't get it, and they think we're overreacting. As funny and entertaining as it is, wearing a respirator mask in a restaurant doesn't exactly make you feel great about yourself. You get a LOT of looks. Which, for the most part doesn't bother me, but there are definitely times where it's a struggle (which is part of the reason why I want a legit Bane mask so badly. Then I would just look epic!). A pretty big lie I used to struggle with a lot stems from my Celiac Disease and other health issues as well. I've mentioned it in several other posts, the lie that I'm not worth giving up food for. I've been told that before (though not in those words), and it's been implied twice. That was a big thing I struggled with for a long time . . . This has been the majority of my journey so far. I am so thankful for it. Not for the suffering, but what it's produced. God has used all of my health issues to shape and mold me in ways I never thought possible. He's taught me self control, how to trust Him, what it truly means to rely on Him, genuine gratitude, endurance, peace, and what real joy is - and so much more. Those are all qualities I value more than Doritos. At the beginning of my journey I looked up verses about food and this one stood out to me the most and gave me comfort: "And don't worry about food - what to eat and drink. Don't worry whether God will provide it for you. These things dominate the thoughts of most people, but your Father already knows your needs. He will give you all you need from day to day if you make the Kingdom of God your primary concern." - Luke 12:29-31 God has shown just how faithful He really is through all of this. In the times when we're out of veggies (which is SUPER important for us) and have no way of getting more, He has ALWAYS provided. In times of temptation when I just REALLY want a cookie, He equips me with self control and strengthens me. In times when I'm having a reaction or my body is just not doing okay, He reassures me of His presence and blankets me with His peace & comfort. How great is our God?! He uses the struggles and the hard stuff to strengthen us and let us grow. "Three different times I begged the Lord to take it away. Each time he said, “My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me." Though I still greatly miss the food I used to eat, and I miss the convenience of not having to plan ahead & bring my own meals and be able to go anywhere with friends, and I miss being able to serve food, I consider myself extremely blessed. Though it started out not all that great, now we eat REALLY good food. And I can eat a certain type of chocolate ice cream now! Have I mentioned how much I LOVE that?! And I'm now able to help others and relate to them in their struggles better than I ever would have (1 Corinthians 1:4). And I have my family, who have endured with me on this journey. And best of all, I have grown so much closer to God than I ever thought possible. He is my healer. Though He hasn't healed me of my Celiac Disease and health issues that I have currently, He's healed me from many other things through them. He's used them to shape me into who I am today. And that, to me, is beautiful ^.^ Today, April 3rd, marks 5 years since I was diagnosed with Celiac Disease. For me, it's a day of celebration. I celebrate that I've made it this far, and I celebrate all that God has done in my life in the past 5 years. Here's to kicking Celiac Disease in the pants! " Dear brother and sisters, whenever trouble comes your way, let it be an opportunity for joy. For when your faith is tested, your endurance has the ability to grow. So let it grow, for when your endurance is fully developed you will be strong in character and ready for anything."
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