This week I heard from the doctor that I don’t have Celiac, that I’m not gluten intolerant. WHAT!!??!! How is that possible? I gave up bread and pizza and cake and everything! Now you’re telling me that, that isn’t the answer!?! That when I’ve had horrible migraines, diarrhea, body aches, horrible gas, running to the bathroom hope I make it, etc it hasn’t been because I messed up and had gluten along the way???????????????
So what does this mean? Last night I gave it a try, because I’m already in hell why not go for the gold. I ate a breaded chicken sandwich on bread and a gluten full cookie and the world didn’t end. No headache. No 10 trips to the bathroom in one night. I still had the problems I’ve been having but it was no worse. WHAT THE HELL!!!????!!!!
You’d think I’d be happy about this, and don’t get me wrong I am. I’m not going to go full throttle because when I’ve been eating gluten free I’ve felt the healthiest I’ve ever felt, plus I like the weight I’ve lost and I don’t want to go back to BIG TAMMY :). Plus cooking has become something I excel at and love. But I’m looking forward to eating cake on occasion and when I eat out not having to freak out about what has touched what in the kitchen.
You’d think with this new revelation I’d be happy but the truth is I’m not. I thought I had THE ANSWER! I thought for the last several years that the answer was GLUTEN and if I stayed away from it I could live a happy, healthy, life. I thought that my troubles were behind me and that my change in diet could be the answer….but now they are telling me I never had the answer. That that wasn’t it.
How can that be? I lost lots of weight, and felt better with minor blips along the way where I would have all the tummy troubles but they would only last a day or so not months upon months upon months.
So the blips have been minor flare ups? And the months upon months have been actual flare ups? So you tell me, WHAT THE HELL IS WRONG WITH ME!?!
The minor blips come with diarrhea and the need to run to the bathroom; migraines; body aches, weakness, and tiredness; painful gas; and this all comes on within moments of eating. I mean I remember eating out with my friend Betsy and within a few bites of food I knew I was going to be sick for the rest of the night. I would eat and my body would feel like it ingested poison and around 2 am I’d be running to the bathroom.
The days upon days upon days of this stuff comes with morning, noon and night trips to the bathroom, multiple trips to the bathroom; painful gas, and nausea. Most of my trips to the bathroom happen in the evening but they seem to be related to the time on the clock and not when I eat. In the beginning I thought they were triggered by my eating but I noticed when I skipped a meal I was still having the same problem.
So basically I’ve been living with this for the past 10 years with no solution. I thought I had a solution but I was wrong.
You’d think I’d be happy I can eat gluten again but I’m not. I’m not happy that I don’t have an answer anymore. I’m willing to give up the foods I love, even if it’s the veggies I adore or the fruit I love (though I’m very hopeful I won’t have to give these up) to have the answer I need.
Lord, I’m seeking an answer. It doesn’t have to be today but someday soon please. What is the answer to this question? Please help the doctors that are treating me to find the right answer. I’m sorry I’m not grateful that I can eat gluten again, it just feels like I’ve lost hope again and I’m not happy. I know you are the great big GOD and can do all things, so why God am I still suffering? Healing would be awesome God but if that’s not in the plan an answer would be even better. I just want an answer. I’ve got millions of questions but this is the one problem that I need an answer for. Please give that to me God. Amen.
It’s been 21 days since I posted something and for me that seems like a long time. In that time my younger sister has gotten married. I helped out with VBS, finished a baby blanket, and come to the realization that if I don’t think about Celiac and gluten it always comes to bite me in the ass. 🙂
Rebecca’s Wedding was Great! It was a lot of fun. She was super stressed and disappointed about things before the wedding but the day of she took things in stride and had a blast. She wiggled her tush when dad pronounced them husband and wife and that’s the kind of attitude she brought to the whole day. It was great!
The daddy daughter dance at the reception was one of my favorite parts. Dad has this way of dancing to make fun of himself (which other men seemed to share as the night went on) so they incorporated that into the dance. They started with “Soul Man” and finished with a sweet “My Girl.” It was great. Rebecca also danced with Grandpa.
The couple finished the night by walking out to the car through sparklers. It was a great night.
My cousin Jj Long was the photographer for the event. Be sure to check out his page: Long Photography
VBS last week wore me out. I cannot believe how exhausting it was to help out with crafts. I came home at about 1:30 each day and took at least a 2 hour nap. How do parents survive? I guess they don’t have 100+ children running around and they probably don’t work with 20 kids at a time trying to get them excited about a craft.
Ever since I went gluten free I’ve had a sort of blasé attitude. I mean as long as I don’t eat gluten I’m good right? Not really. The makeup was annoying but so are a lot of other things. We got manicures and pedicures before the wedding and my manicure was basically a polish change. No massage because I couldn’t allow them to use their lotion or oil because I couldn’t read the ingredients. I got my hair cut recently (the day of the wedding, risky I know but it worked out great) and I went to style my hair and realized I didn’t have any gluten free styling products on hand. You might be thinking, “who cares if your styling products are gluten free?” Let me ask you this question: how many times a day do you touch your hair? Do you then eat something with your hands, like a sandwich? Imagine that the stuff in your hair is covered with poison….do you really want to style your hair with poison? I didn’t think so.
The other day I was thinking about how awesome it would be to get a facial but I bet I can’t do that anymore either. They don’t exactly advertise gluten free facials. And getting a massage…what’s that going to be like? I’m sorry sir, ma’am but you can’t touch me with that lotion or oil unless I can read the ingredients first.
I ate some salsa this week that made me sick. When I went back to the jar I realized that it just said “spices” as one of the ingredients. How the hell am I supposed to know what your “spices” have in them? I’m of course asking this question because I got very sick that night and the next day.
I miss the days of getting a haircut, going out to eat, or really doing anything without thinking about gluten. I know that Celiac is one of the easier diseases to have but sometimes it really gets me down. I mean I love the weight I’ve lost and how much better I feel when I actually manage to avoid it but I would really love to get a massage without having to bring my own lotion. 😦
In my time away from blogging I’ve also gotten some more rejection letters and these ones hurt a bit more. My first rejection letter was received several weeks ago for a job I don’t even remember applying for, it was one from when I was just applying for anything. Now that I’ve narrowed my focus and only apply for jobs I actually want the rejection letters sting a bit more. They are written nicely and say nice things but they still sting a bit.
I also just this past Sunday was approached by someone with encouraging words from God. It was a great moment but it really deserves it’s own blog.
Alright, that’s all the catch up I’ve got for now. Ta-ta for now, hopefully my next blog won’t take 21 days to be posted 🙂
This past week has been gluten hell for me. I don’t like to complain about being a Celiac. 1) Because I don’t have an offical diagnosis (health insurance purposes) and 2) because as long as I avoid gluten my disease is not a problem.
I have friends and family members that are dealing with chronic illnesses and diseases that are painful and they have no way of getting away from them. They cannot get away from their pain by simply changing their diet.
That being said, I’m gonna complain now. I’m going complain about this stuff because it has been a difficult week for me because I have been unable to avoid gluten and my disease, despite my best efforts.
The first incident happened this week when I was searching for gluten free makeup. If you’re a part of my real world, you know that my sister is getting married this Saturday. Less than a week away. Since going gluten free I haven’t really had a reason to wear makeup and even when I have I haven’t gone all out. Recently (before this week) I put on the lipstick I had without thinking about it. I wore it and was sick. So I knew that I had made a mistake and needed to find gluten free makeup before the wedding.
It has my trusty list of ingredients that you should watch out in personal care products (like makeup). It’s an extensive list and if you are just beginning the journey into going gluten free, not for vanity, but for health, it can seem daunting but rest assured once you make a mistake that has you writhing in pain you’ll commit the list to memory or at least have a copy of it in your phone. The list is in the chapter titled, “Gorgeously G-Free” and starts on page 171 and continues on page 172.
Amino peptide complex
Amp-isostearoyl hydrolyzed wheat protein
Avena sativa (oat) flour
Avena sativa (oat) flour kernal
Disodium wheatgermamido PEG-2 sulfosuccinate
Hordeum vulgare (barley) extract
Hydrolyzed wheat gluten
Hydrolyzed wheat protein
Hydrolyzed wheat protein PG-propyl silanteriol
Hydrolyzed wheat starch
Hydroxpropyltrimonium hydrolyzed wheat protein
Oat beta glucan
Sodium lauroyl oat amino acids
Triticum vulgare (wheat) flour lipids
Triticum vulgare (wheat) germ extract
Triticum vulgare (wheat) germ oil
Wheat (triticum vulgare) bran extract
Wheat amino acids
Wheat bran extract
Wheat germ extracts
What germ glycerides
Wheat germ oil
Wheat germamidopropyldimonium hydroxpropyl hydrolyzed wheat protein
It’s an extensive list and can seem scary but I always look for “Wheat” first and then look for “tocopherol” or “tocopheryl acetate.” Most beauty products contain tocopherol acetate. I see those two words (that I’m not actually sure I pronounce correctly) and I put the product back on the shelf.
My problem this week came about when I was shopping for makeup. I was lucky on my first trip and PhysicansFormula had foundation and bronzer that were clearly labeled gluten free and after checking the list of ingredients was glad that it was gluten free. I also found some gluten free eye shadow, the problem came when looking for lipstick.
There is not a lipstick out on the market, even those that claim to be gluten free, that do not contain tocopheryl acetate. Not a one. The chapstick I have been using all year, Burt’s Bees, contains it, as does all other lipsticks on the market.
How can a lipstick company claim to be gluten free and list that ingredient on their box? It’s a frustration of mine, but as the consumer I have to keep a look out for myself.
The problem with that is that lipstick containers are tricky, some of them you cannot read the ingredients in the store without purchasing the product, because the ingredient list is hidden behind the packaging. The other issue is that the ingredients are impossible to read. The print is super small, so small that even my young eyes cannot read them. I needed a lipstick so I went with a couple of brands that I was assured were gluten free (through my research) and they were not. I found this out the hard way. I tried out the lipstick and had a migraine as soon as the lipstick touched my lips. Then came the cramping and by 3 am I was spending every few minutes running to the bathroom. Since I was up anyway I searched for the packing and boxes again, got out a magnifying glass and read the horrifying words, “tocopheryl acetate.” Crap! Luckily I was able to return the products but I was sick all night long and part of the next day because of this oversight on my part and horrible packaging on their part.
In the morning I contacted the customer service people of each company and asked them to make a change in their packaging. I was not asking for money but rather safer consumerism. One company (Bare…) sent me an email stating that they were not at fault for my illness. Okay, that’s not what I wanted. Sure as the consumer it’s my job to do my research, I did and was given false information on websites and forums. I also looked on their website for ingredient information and could find none. I’m not seeking money I just want them to help make my shopping experience easier. Since receiving this email I have been upset with the company whereas before I just wanted to help them make a better product. (But my anger at this company is not what this blog is about).
After returning the items, I went to Natural Grocers and got some lip tint and lip gloss that is gluten free. It said it on the packaging and I read the ingredient list 10 times (and every time I use them) before purchasing the products. I am a better consumer every time something like this happens but I’d rather not learn these lessons, I’d rather just steer clear of gluten.
The second incident happened last night. My sister had her bachelorette party and each of us bridesmaids brought a dish to share. I was about to spoon some meatballs onto my plate and asked the host what she put in them and she said what the sauce was made of. I then proceeded to eat 10 or so of those good meatballs.
Until about 2 am I didn’t think to ask how the meatballs themselves were made. I didn’t think to ask if she made them herself or if she bought them. I didn’t think to ask if the packaging said gluten free. They were good meatballs but they were not worth the horrific migraine, insane cramping, and hours upon hours of running to the bathroom. They were also not worth the muscle soreness today, the trips to the bathroom, the lethargy, and the overall painful, sucky day that this has been.
I could be mad at this bridesmaid but just like with the lipstick company I’m at fault. I’ve lived with this kind of stuff for about a year now and every mistake I make has two sides. My side as the consumer or partygoer and the side of the company or host. I’m at fault because I didn’t think to ask, I didn’t think to triple check and get out the magnifying glass before trying out the product. I didn’t think to question a so called gluten free company. I didn’t think to ask what the meatball was made of.
I will never again make these mistakes. I have thoroughly learned my lessons. The pain is horrific and I cannot wait until this passes through my system and I can get back to life. After all there is a wedding to put on!
Before I go, I have one more soap box to get on. I learned something horrifying this week, beauty products including lotions, lipsticks, hair dyes and so forth do not have to list all of their ingredients on the packaging. They can hide ingredients. So my Celiac friends if you are suddenly ill for a reason you cannot fathom consider going beauty product free for a few days and see if that solves your problems. Then reintroduce a product at a time to find the culprit.
Being Celiac is easier than some diseases out there but it has it’s hiccups and issues like anything else. There are days when I wish I could just eat a piece of cake or have a thick crust piece of pizza but then stuff like this happens and I remember that eating gluten is like poison to my system and not worth the pain.
This is actually a favorite of mine that I put into use after having fruit infused water at a hotel. You take your favorite fruit tea, say citrus herbal and then add your favorite fruit or a fruit that will increase the flavor. My absolute favorite is peach tea with real peaches in it.
You leave the fruit in the tea and then a couple days later eat the actual fruit. It’s awesome!!
She called for honey yogurt but I used vanilla. They are pretty great but they can hurt your teeth so try to give about a minute to let come to room temperature but don’t take too long because they will go back to being yogurt like.
I have also been going crazy on Pinterest. I have pinned like crazy!
In addition I have also been searching for jobs daily. I’m hoping I get a job soon so I can get on with my life instead of feeling stuck.
This last bit of my schooling has take a lot out of me but I wanted to post some of the meals I have been eating and what I have thought of them:
Meal 1: Frozen mac & cheese with Ranch Nut Thins, raspberries and grapes. The nut thins are pretty good but they don’t taste like crackers should taste. That’s the first lesson of eating gluten free: nothing tastes as it should. The rice noodles in the mac & cheese were okay but they weren’t the pasta I’m used to. I think once I get used to this diet I won’t care so much that nothing tastes like it should but for now it is annoying.
Meal 2: Salad. I have been eating a lot of salads. The good thing about this diet is that I like fresh veggies and fruit. My mom loves to tell stories of me eating a head of lettuce and watching TV. I used to eat it plain but that was when I had the choice. I do miss some of my favorite dressings but you have to do what you have to do and this diet is working so I just go with it. This salad has 1 peach, 1 fuji or gala apple, pomegranate seeds, and raspberries and of course a raspberry vinaigrette.
Salads are easy. This salad is a chicken and gala apple salad. I loved this one. You get a skillet and put olive oil in it and then you add some garlic powder. Then you add the chicken and brown. While the chicken is browning you cut up the apple and get the bed of spinach ready. Then when the chicken is done you put it on the lettuce and pour the left over oil on top and then add your favorite dressing, mine is a raspberry vinaigrette.
You can really make any kind of salad you like. I usually like a bit of cheese on mine as well. I added a variation to the chicken garlic chicken salad the other day by adding pepper jack cheese. It was amazing!!! 🙂 Be brave. If you like certain kinds of food try adding them to each other and see if they are good. If they aren’t then you have learned your lesson.
Meal 3: A second try at the cauliflower pizza. It was okay. Still nothing like regular pizza and the toppings I chose this time didn’t really go together. I like summer squash but it’s best when other people prepare it ;). I just can’t get it sweet enough. And the artichokes just didn’t taste so great. So see. Sometimes you try something and realize you don’t really like it.
Snack 1: Sweet Potato Chips. I pinned this recipe from my pinterest board. It is originally from a Martha Stewart page. Again they were pretty good but tasted nothing like chips and didn’t look anything like Martha’s. I might try them again to see if I can get the kinks out of the process.
Snack 2: Peppermint Patties. I got these from my pinterest board as well. They are originally from Elana’s Pantry. They weren’t too bad either but you can’t eat them thinking that they will taste like the York kind or that they will look like that or that they will have the same texture. Eating gluten free is about changing your perceptions and your taste buds. Which is probably why I like all the salads. A strawberry is still a strawberry and an apple still tastes like an apple. Eating gluten free is eating in a whole different realm.
Bread: After buying one loaf of gluten free bread I decided to try one of the baking boxes. Store bought gluten free bread tastes a bit like English muffins but worse. I like English muffins once every 3 or 4 years. The bread from the store was rock hard before I put it into the toaster and didn’t improve much once it was toasted. So I bought the box and baked bread on Sunday. It looks like bread, it tastes like bread and it smells amazing. This is what bread should be like. Now it’s not what gluten full bread tastes like but it’s still pretty great. It doesn’t toast very well and I wouldn’t recommend grilling it (I tried to make a grilled peanut butter) but it does pretty great with butter and peanut butter. And it was pretty awesome today when I toasted it (it toasts but not fully) spread pizza sauce on top, added mozzarella cheese and put it in the microwave for 1 minute. It was like mini pizza and it tasted like the bagel pizza’s mom used to make for us when we were kids.
So that’s all the experimenting I have been doing lately. I have found it is like doing an experiment and have learned to not really care what it’s supposed to taste like and pay more attention to how it actually tastes 🙂
I know some of you are sick about reading about my health but since it has kept me in my bed for the better part of this week I’m still going to write about it.
Last week I had a kidney infection and I’m almost done with the horrible giant antibiotics that they gave me. Before I was on the drugs my kidneys were killing me. I was in a lot of pain and sometimes I felt like passing out.
Now the pain is gone and I feel like I’m going to pass out all the time. Walking to the bathroom (which is probably 10 feet from my bed) I always wonder if I’m going to be able to get there without passing out.
I made myself dinner last night because on a gluten free diet there are no quick meals. I was making a new potato recipe and the recipe said it would take 20 minutes for prep and 20 minutes to cook. It took about 30 minutes prep time between all the times I had to lay down and then get myself back up to finish the task. The 20 minutes cook time was also difficult with at least 10 minutes of laying down and 5 minutes doing a move my father has perfected: bend over, hand on knees, and breath. I’ve done this move many times in the last few days. I haven’t left my apartment since Sunday. I haven’t left my bed for more than a few minutes: shower, make lunch, get drinks, make dinner, and trips to the bathroom.
I’m not throwing up but with the nausea I often wonder if that might be better. This is the 10th week! For those of you not on a quarter system this is the last week of class and next week is finals! I have to leave the house tomorrow. I wanted to go to class today but I really don’t think that is possible (luckily the professor I have today has been really understanding). I’m still working on the paper for that class and hoping I can get that done today while I lay down in my bed with my laptop working like the name suggests (with a pillow underneath because that thing gets hot!). I also have a writing center consultation to do today and one in person one tomorrow.
To say I’m stressed would be an understatement. My dreams are about eating pizza (because I can’t) and what will happen in the next month or so.
I’m done with class in the next two weeks which also means I am done with getting loans so in the next few weeks I either have to find a job or move home. This gets even more stressful because everyone keeps asking me what I’m going to do. I really want to stay in town so I am working hard to make that happen. I have been working hard for the last 6 months without really finding anything so I might have to apply to retail places (which makes me cringe). I hate working retail. But maybe I could do it again, if I have to, which I might have to.
So that’s me right now. Totally stressed out. Oh I forgot to mention that my beloved grandma is moving into assisted living this weekend because the dementia has gotten worse. It’s sad but a necessary step. So I’m also grieving which I have learned is just part of this long process of dementia. As each new thing happens there’s more grieving. Which again is not helpful in a 10 week quarter but in a week and a half that stress will be gone. I will no longer have to write papers I will instead have to find a job in a hurry. Time to walk up and down the street and see who is hiring but I can only do that if I start to feel better. Especially since walking to the bathroom is such a task.
What is up with me? Have I not been sick enough this quarter? Have I not been sick enough for the past 6 months? Silly me, I thought that moving to a gluten free diet would rid me of this never ending sickness.
So today, as I work from home again, I am asking God REALLY!?!