Wednesday, June 25, 2014

The Experiment

A few months ago I began to question, rather intensely, the truth behind my Crohn's and my intolerance to gluten/wheat. I went from moderate inflammatory bowel disease (ulcerations and internal bleeding in the gastrointestinal tract) to almost no inflammation after quitting gluten for a year. Some doctors even began to question my original diagnosis, as different specialists will disagree on the accuracy of 'triggers' in relation to IBD. With the inflammation gone, they began throwing around skeptical questions of 'coincidence' and 'hysterics' and other lovely invalidations. Conveniently ignoring the colonoscopies and biopsies that led to the diagnosis in the first place. But I also began to question it. I question myself rather often so I suppose it should not be a surprise that I became suspicious.

The primary concern I had was that my wheat flour response is 'dose dependent'. Meaning that my pain, inflammation, and symptoms are related to the amount of gluten/wheat I consumed. I can sometimes even eat regular teriyaki sauce and be okay (a very small ingredient in soy sauce types is wheat). Someone with celiacs would not be able to handle such exposure. Crohn's is different than celiacs, but it's definitely not well understood. Maybe I was being dramatic? Maybe I was wrong to believe I had a specific trigger?

So, the other day, we decided to do a small 'experiment'. A way to establish if I had been unnecessarily limiting my entire diet for the past three years. I took a bite of a pierogi. My boyfriend is Polish and the scent of his grandmother's pierogies was driving me batty. So, on a spur, I asked if I could take a bite. I rationalized to him and myself that it would be a good test, to eat a dumpling wrapped in wheat flour dough. Much more flour than I had had in years.

I took a small bite.

A small bite.

Oh, heavens be kind, by Great Odin's Beard, it was just a small bite!

In between quiet sobs and symptoms that I do not wish to attach to my name, I am going to say that the experiment was a success of sorts. I need to learn to trust my 'gut'.

I can't eat wheat.


Monday, June 16, 2014

Adding in a few Shakes of Excitement and Power

When we were children, we can probably all remember the distinct difference between doing something out of desire and doing something because we 'had to'. Being told to clean your room was infinitely different from the spontaneous tidyings you self initiated from age four onwards. I remember I once mopped my mother's floors with a friend, at about the age of seven, and it was a fun, fond memory. Much different from the bullying, threats, pleas, and demands I received to clean my parents' home on various occasions since.

To make it simple, most persons vastly prefer to do something of their own volition and with their own spin than to feel coerced into something they resent. It's human nature. We like to have self control.

So when I look at the many things I have to do to maintain my body, semblance of health, lows of pain, I try my best to make it something I control, rather than dwell on the aspects of something forced upon me. And the greatest way I have found, to add in power (and a bit of excitement), is to make it more enjoyable. I like to make it fun.

Exercise

I have to exercise to maintain mobility, and exercise causes me pain. What a great paradox. I used to love running for miles and miles and spending hours pushing myself to the edge. But it got changed to a chore when I became ill! It no longer was something I got to enjoy doing, it became something I had to do to minimize suffering. But all of these feelings are primarily adjustments to my experience of exercise, not changes to the activity itself. So I needed to change how I saw it and felt about it.

With exercise, there are two primary things I do to increase the fun and my sense of control. First, I let myself choose. Always. For my daily exercise, the movement I need to do to keep my adhesions from forming a sturdy latticework, I get to choose. Whether it be yoga, running, biking, skateboarding, dancing--whatever I choose, I get the satisfaction of selecting it. Of taking one from all the others and saying, "I'll do this today." It turns from having to do exercise to getting to choose my exercise. Second, I add in a bit of fun and personal flavor to give myself something to look forward to. Such as with cycling, I sometimes watch a newly rented movie on my trainer, or with dancing, I can dance to dance games on the PlayStation. Or crank up ridiculous music and 'clean dance' my apartment. It becomes an absurd, fun, chosen game.

Cooking

For meals, I used to feel a lot of resentment for losing gluten. For three years now, I have given up wheat. Otherwise I face bouts of Crohn's and endometriosis pain that make bread look like a bundle of cyanide. My greatest sorrow for the loss was related to my passion for baking. Prior to entering the worst throngs of endometriosis, I would bake almost weekly, putting together large frosted cakes and playing with colors, designs, and flavors. My favorite was banana chocolate. There were 'cookie weeks' where every day, I'd bake a different type of cookie. ...I went through a lot of butter and sugar (and had many willing acceptors of donations so I could protect my own waistline!). When I lost wheat, I packed up my frosting tools and cake pans and resolved I would never enjoy baking again. I felt I had lost all choice and control with the hobby.

However, after a long eventually, I learned to flip this assumption on its head and make it a game. I have a challenge--to make more delicious cakes with less conventional ingredients. When I still manage to make sumptuous deserts, with flavors and textures the same or better than my prior ventures, I win. I love serving food to unsuspecting friends and then gleefully informing them it was a gluten free meal. When they assume it has wheat in it, I win. When they don't believe me when I say it's gluten free, I get bonus points. Most of the time they will not believe me. Super bonus points! Diving back into baking and cooking and frying and learning how to both overcome the missing ingredients while improving the meals, that has become another game and great challenge. I'm probably going to write my own recipe book by the time I am done!

Life

I am not trying to say that the difficulties and changes that my pain and illness has tossed into my life are welcomed editions. It's not like having a box of boggle thrown in your face and jumping up and down for joy for the game. I am just a normal person who sometimes resists improvement like a plague. But sometimes I can rise brilliantly to an occasion when the situation calls for it. Sometime we all can. And I do believe that by taking a rotten situation and turning it on its head, you can make a struggle into something exciting. Maybe even a bit fun.

The adjustments I have had to make for my illness have been rough. They have also taught me to be innovative, creative, and hard working. By refusing to be backed into a corner, and instead choosing for myself my way of coping, I have empowered myself and grown in previously impossible ways. I get to choose to make it exciting and empowering--I hope that is a choice and change that my readers make for themselves.

Thanks for Reading--The BedHead

Saturday, June 7, 2014

Strategize and Strike

Following a special diet for chronic health is an annoying predicament. While it is completely within the realm of personal choice to follow said special diet, the choices are poor. Currently, my doctors have settled on wheat (or gluten) is the primary cause of problems with my Crohn's flares. Gluten has also been shown to intensify the pain caused by endometrium plaques. In this particular example, I have two choices. Eat gluten, get ulcerations and possibly end up in the hospital. Or do not eat gluten, and deal with having to sift through every food item I ever ingest ever. Still a choice--I have the power to choose either one, but it does not feel like good selection.

One thing I hate about gluten free diets is the cost. Honestly, I have spoken to people who 'voluntarily' chose gluten free (no illness or allergy) and it boggled my mind why they would want to suffer by choice. Why would someone choose more grief and cost for their diet? But, for better or worse, the popularity of gluten free diets have made selection a bit better. Compared to the past, there are many great choices now available for gluten free diets. Pastas, breads, baked goods, snacks, candy, cereals... things that all seemed to be shut off by availability or terrible quality are now opening up more and more. I've had excellent pasta and excellent bread. I've had terrible ones of each as well. 

And through my samplings and experiences, I have learned two key things about eating gluten free: it can be expensive and it can be time consuming. Seven dollar breads, ten dollar bags of ravioli, two dollars for a snack bar. Whether from factory costs, stricter restrictions, or unnaturally low competition, gluten free is spendy. So you have the option of spending a good lot of money on all your food, or you have the option of spending a small lot of money on ingredients and making it yourself. But how how do you make the best of either of these stratagems? 

Strategy
  1. Determine your sensitivity. Are you reactive enough to need non-contaminated gluten free products (gluten free facility, sealed packaging, meets criteria of less than 20 ppm (parts per million))? Or can your gut handle bulk flours from natural markets (such as Whole Foods)? Though cheaper to get non-certified goods, you need to be considerate of the need you are serving. E.g., if you have celiacs, it defeats the point of a gluten free diet not to buy completely uncontaminated products. Choose wisely; if you are unsure, use a food and pain diary to track reactions for a month each. 
  2. Gluten free product prices have a surprisingly large gap of cost amongst different stores, even among the same brands/items. For example, my favorite sandwich bread mix is Glutino. I can get it for $4.50/box at the local super market, $5.50 at the local Whole Foods, and for $5.99 from the Glutino website. Learn which products you like and see where you can get them and for how much. 
  3. Be willing to try varying brands. Some brands are way more expensive than others, with little variation in taste/quality. Gluten free products are still finding their way into the market and there is usually a fair chance of finding the same product with the same ingredients, for cheaper. Become familiar with different brands and deduce which value (i.e., cost and worth together) is best for you. 
  4. Explore new and different venues. I recently began ordering more of my food online. I love to support local stores and shops, but the price discrepancies with many gluten free items make me feel like I am getting screwed over. For example, a box of Annies Rice Mac n' Cheese cost around $3.50/box in the local shops. I got a case of 12 boxes for $20.00 total after a coupon and special shipping deal--That's $1.60/box. Find multiple venues to make all your comparisons with for strategy #2. 
Strike:
  1. Organize a pantry that facilitates cycling through bulk and discounted goods. Buying things in larger quantities to take advantage of sales of bulk discounts can result in a problem, if you are not careful. After all, there is no point on saving on food if you cannot use it in a timely manner before expiration! Organize your pantry to have the nearest to expiration foods in the front and, if it helps, circle or write the dates in larger print. 
  2. Learn to bake. So much can be said for baking your own goods, but the three main primary benefits I will mention are: (1) better taste--pretty much anything you make in your oven will taste better than the over-preserved, stale, low flavor of store bought, (2) better nutrition--you get to control what goes into what you eat and you can add nutritious additives such as ground flax seed to improve it, and (3), better price--it will almost always be cheaper to make something than to buy it, and, when it is more expensive to make, it will likely be due to better quality ingredients.  
  3. Plan ahead. Being unprepared is more likely to cause problems and grief than most other complications. It can cause situations where you are forced to spend more money than you would like (or have), make you go hungry, or even risk higher exposure to the thing you are trying to avoid. Having a plan for most situations can prevent being backed into a corner. Call restaurants if you are unsure about their menus, pack snacks, and keep back ups in your car/office/bag. Preparedness is your friend. 

Remember, this list may be specifically aimed towards gluten free, but there are no rules against using it for other allergies/intolerances. 

Thank you for your time and reading, and I hope you have a pain free day!
--The Bed Head. 


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Contact me at bedhead@bedriddenhead.com

About The BedRiddenHead

I want to be happy. And this site is about that chance. How to strive to thrive in the body I've got and maybe turn my experiences into something worthwhile.

This site aims to help educate and reach out to people all over that struggle with pain or illness. To try and make something helpful. I work as a medical research writer, my background is in neuropsychology and biology, and I want to share what I learn in a way that is easy to understand. I am not a doctor. I'm definitely not your doctor. I am just some lady who wants to make someone's (anyone's) life a little bit better. Whether you have endometriosis, a chronic injury, a struggling friend, or just want to learn something new, I hope to make a place that has what you are looking for.

Thank you for stopping by, I wish you strength in your health and happiness.