The Frustrations of Being Undiagnosed

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I guess I’ve always been sick a lot. Growing up, I seemed to get strep throat every single year. When I got mono in the 8th grade, I was sick for nearly 3 months. When I get a cold, or the flu, or even a bruise, it seems to take my body a pretty ridiculous amount of time to heal. But, despite the doctor appointments and the hospital visits and the blood tests, I still don’t have answers.

I was relieved actually, as a teenager, when I decided to try giving up dairy. It seemed to work wonders for me, and I thought, “Wow! All of these years of stomach pain and sickness, and it turns out I was just lactose intolerant!” But, more and more lately, it seems like that isn’t the issue. It isn’t just dairy that bothers me – it’s a lot of things. So many, in fact, that it’s hard to put my finger on it. It never seems very consistent.

I have gotten pretty good at managing my symptoms, despite their sometimes unpredictable nature. I went from missing a lot of school and work to basically teaching my body how to get sick on a schedule, on my schedule. The worst part, I think, about being sick in the way that I so often am is that it seems like people just think I’m a hypochondriac. I can’t even count how many times I have heard, “But, you don’t look sick!”

A few months ago, I woke up in pretty serious pain. I wasn’t sure what the deal was, but when I looked up what I was experiencing and talked to a good friend of mine who is a nurse, it seemed serious, like it might be pancreatitis. So I went to the ER. If you’ve known me for a while, you probably know that I avoid the hospital at all costs because when I was 19, I racked up a hefty $6k in hospital bills for what everyone was convinced was swine flu, but was actually an intense case of strep throat. (Seriously.)

The hospital didn’t know what was wrong with me. They did a urine test and then a blood test. When that all came back normal, they did an ultrasound. Normal. They gave me some medicine for an ulcer, which seems to be helping. But, I don’t feel like I am getting any better in the grand scheme of things. At my last checkup with my doctor, he told me he wants me to get tested for Crohn’s. Just one problem – I no longer have health insurance.

The reason I am bringing all of this up is that I am currently laying on my couch, feeling pretty terrible. I always, without fail, get sick when I travel. So I suppose it’s no surprise that I am feeling this way, since I just got back from a weekend in Atlanta. But, while I was there, I had a conversation about Crohn’s vs. Gluten Intolerance / Celiac, and it got me wondering how or IF, without spending hundreds or thousands of dollars, I can get to the bottom of what’s wrong with me. If it’s Crohn’s, there are lots of foods that could bother it, dairy and gluten included. So, how do I know what the issue stems from? How do you treat something that you can’t figure out? What if it isn’t either of those things, but something else all together?

I don’t know the answer to any of those questions. What I do know is that I am about to try to embark on a healthier journey. I am going to attempt to give up gluten – a sentence that I never thought I would say – to see if it makes me feel better. I will probably also have to quit drinking, which sucks because I really enjoy a nice glass of wine or a beer after a long day, and I love the social aspect of going out for drinks. But, I suppose it’s time to try to get my health under control once and for all.

So if you’re out there reading this and you’ve gone through something similar, please share any tips or experiences you feel comfortable sharing! I would love to hear about your favorite gluten-free meals and snacks, how long it took you to start feeling better, etc. Are there vitamins or probiotics I should be trying? Any advice is greatly appreciated.

Until then, I’ll just be over here dreaming of bagels.

xx

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6 thoughts on “The Frustrations of Being Undiagnosed

  1. Hey girl, I am sorry you have been through so much! I have recently gone through a drastic diet change in the past couple of years due to stomach issues also so I hear ya. When it comes to Gluten free there is Rudis-good bread, Udis-good bread and snacks, Good Life- good snacks and oatmeal plus have nondairy options, Kind- delicious snack bars. Natural path also has good oatmeal. Honestly it is really about testing your body, what works and what doesn’t, I also took out peanut butter so I switched to almond milk and almond butter. Let me know if you want any more tips!

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    • Hey Christine! Thanks! I will probably ask you a whole bunch of questions as time goes on. I am just testing things out and we shall see! Do you feel a lot better now that you are eating GF? I am trying to keep a good attitude about it, but I loooooove food and beer, so it is kinda tough for me. But, I know it is healthier and hey, maybe I will even lose a few pounds! (I gained like, 15 since moving to the south, haha)

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      • Feel free to ask! It is definitely a challenge getting rid of gluten all together since it is in everything but you learn to read the labels. To be honest I really do feel better. I am still learning and testing the waters with different brands and different products but my bad days are getting fewer and father between. I actually don’t mind gluten free bread, although I do recommend always toasting it. I feel like I have started to appreciate rice so much more also since I started gluten cutting out. I am not as strict in terms of gluten as I should be but I have learned how my body reacts pending on what I do eat. Although it seems like an uphill battle at first, I promos things do start to get better!

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  2. When I stopped eating gluten a few months ago, it made a HUGE difference in my digestive wellness. I went from **getting sick** (not gonna go into the gritty details) 5 or more times a day to still having irregular stools twice a day but 80% of my symptoms are gone. I haven’t been diagnosed with Celiac’s, so gluten may not be the only problem. I have been putting off seeing a doctor (which I know is bad) cause I have so much else going on and I’m scared. But, since going gluten-free I have had more energy, more of an appetite, been less irritable and just feel better over all. I do some times cave and immediately regret it. Plus its hard to completely avoid gluten because its in like… EVERYTHING. Most food colors, especially caramel color, are made with gluten products. Malt flavoring is a gluten product that is in almost all sauces and dressings. Also, many companies can’t guarantee that their products are gluten free even if they contain no gluten ingredients because they could be processed with gluten-containing products and may contain any number of parts per million of gluten…. which is minimal but depending on how sensitive you are to gluten even a microscopic spec can make you sick. The other side of that coin is many studies are now saying that although Celiac disease, where you absolutely cannot have any gluten, is definitely a thing… but what was thought to be variable intollerances to gluten is a little more complicated… that its more about overall diet and less about gluten. Other studies show that gluten is bad for everybody… that everyone can benefit from going gluten free because it just causes SO many problems. As far as eating gluten free and supplementing gluten-free products… first start by always reading labels. Watch out for wheat, rye and barley and malt flavoring. I thought for a while that maltodextrin was a gluten product but recently found out its made from corn, so its safe. Bread alternatives: I have found Udi’s to be absolutely disgusting. All of their bread products are dry and taste like cardboard… they are hard to eat even when toasted and with stuff on them. A lot of people think Ezekiel bread is gluten-free. Its not, just wheat free. However, the brand that makes it, Good Harvest, does make gluten-free bread. They have a few different varieties and all taste pretty good but you have to toast it otherwise it has this creepy, gritty texture and even when toated its pretty hard and basically only works as toast… not as sandwich bread. Pasta: most gluten free pastas are GROSS and don’t cook well. However, Tinkyada Pasta Joy is AMAZEBALLS. It tastes good and cooks well. I tried every brand in whole foods, walmart and Winn Dixie and nothing compares. Snacks: ha, let me know if you find good gluten free snacks. Most chips have malt flavoring :/ I’d suggest Zapps chips to you but you’d have to come to Louisiana to get them. Most gluten free crackers and pastries I’ve tried are gross. Whole foods makes some deeeeeeelicious gluten free brownies. You’d be surprised, but almost all flavored yogurts contain gluten… even good brands like Chobani and Fage (its in the flavoring and/or food coloring), but I recently found out that Noosa is gluten free! Yay! Eating gluten free is really hard… your gonna cheat or end up accidently eating something that you didn’t know had gluten in it. But, as long as you try to stay the course I think you will feel a lot better. For me, I’ve found that sticking with LOTS of fruits and veggies and proteins with dressings and seasonings that are guaranteed gluten free is the best route. I have been eating more simply… foods with fewer ingredients and non-GMO foods and feel amazingly better. Its expensive and difficult, but yout health is worth it! I hope this helps!

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    • I know! It is so crazy. We just went grocery shopping tonight and I got a whole bunch of GF stuff. I figure I will try it out and see how I feel. But, man, it was so hard to buy all GF foods! I will have to look back at this and take more of your advice as time goes on. I didn’t even bother with GF bread. Tonight, I had chicken salad lettuce wraps. Sighhhhh. haha.

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  3. Pingback: Review | November ’14 Send Me Gluten Free Box | Thrifting & Bitching

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