Gluten Free Versus Gluten Lite

My oldest son has a girlfriend who has celiac, as do several of her relatives. She has one aunt who likely has it, but she does not want to get tested. Perhaps she believes that as long as she doesn’t get tested, she doesn’t have it. More likely, she suspects she does have it, but as long as she doesn’t get it confirmed, she doesn’t have to follow the gluten free diet. If she does have celiac, this diet would help her feel physically better, but would make eating more complicated, especially when it comes to eating out or in social settings. I can sort of understand that thinking, but not really.


I have been tested for celiac, and I was negative. I have heard from various sources that people with Sjogren’s Syndrome do better on a gluten free diet, as do people with Fibromyalgia. I heard recently that people with hypothyroid also do better on gluten free diets. Since I have all three of these, I decided to try out being gluten free, and see how I do.

I have been ‘gluten lite’ for about two weeks, and planned to go gluten free this week. I changed my mind, and have continued the gluten lite diet for another week, and will go ‘all the way’ next week. This week there are too many complicating factors. The first one was a pot luck gathering with people from my temple on Christmas day. I know that there will be pot lucks in the future that I will have to navigate gluten wise, but since I am doing this as an experiment, rather than knowing for a fact that I will be helped by this diet, why make it harder for myself to adhere? The other complicating factor is my current situation: vacation for a week at our cabin, with our two sons (one is in college, the other in grad school.  Having all four of us together is a special event these days.)

At the pot luck, I had some soup with pasta in it, taking the pasta out, and I ate a piece of pecan pie, eating the filling but not the crust. Both of these I consider gluten lite, because I didn't actually eat the gluten-containing parts, but the food is contaminated if it comes in contact with gluten. Here at the cabin, I have been more stringent, but still not quite gluten free. I have my own bread, made gluten free pancakes when they had regular pancakes, and have been reading labels to avoid using products with gluten in them.  I did have a piece of cheesecake and ate the crust.

So the question is, since I don’t have celiac, the most common reason people eat a gluten free diet, how gluten free do I need to be? I know that for people with celiac, even a crumb of gluten-containing bread can throw their system off and make them symptomatic. Is that true for people who don’t have celiac as well? Or is ‘gluten lite’, as I have been eating this week, close enough? My plan is to go gluten free for two or three weeks, then eat something with a substantial amount of gluten in it, and see if it causes any problems for me. If it does, I will go back on the gluten free diet for a few weeks, and then try eating a small amount of gluten, and see how I do.

This has been a learning experience for me, and for my husband as well.  We were at a cafe the other day, and I was asking questions about the ingredients in something I was thinkin of ordering, and my husband got impatient.  If it turns out that being gluten free helps me, that is one of many changes he and I will have to get used to. I will let you know how my experimenting turns out.  I will also have more info about gluten and following a gluten free diet in a future post. 

Keep Your Eye On the Prize

I got a new netbook.  That’s a good thing, right?  So far, I have been very frustrated.  First, it has Windows 7, which is quite different from Windows XP, which is what I am used to.  Then, of course, there are all the things that have to be done to get any new computer working smoothly:  all the programs that have to be installed and the data transferred.  So each step of the way is taking a lot more time than I expect, and I keep having to backtrack to figure out what the problem is, and how to solve it using an unfamiliar program.  The netbook is smaller than my laptop, with a keyboard 93% of the size.  Not a big difference, but enough to throw my fingering off until I get acclimated to it.  On top of that, winter has arrived, and with it my annual fight with the skin of my fingertips and thumbs cracking open.  I have Bandaids on one finger and one thumb, so I keep hitting the wrong keys with my left hand.

**Irony of ironies, in the middle of typing that paragraph, my computer decided to reboot itself, and it took me almost a ½ hour to get back to this, because it kept trying to start new security options, back up all my files, and various other tasks that were disrupting my ability to write.

So why did I want to get a netbook, knowing that it would be a hassle?  It’s little!  My laptop is larger than I really wanted because I wanted the high screen resolution that only came with the larger screen at that time (7 years ago, ancient history in the land of computers).  I use that computer for many functions, including for my art.  I take digital photos of my art, and make my own prints using an archival quality printer, and the high resolution makes it easier to work with the images.  It has a 17” screen, this netbook has a 10 inch screen, and is only 3 ½ pounds.  With my aches and pains, it is so much easier to move around and carry, as well as schlep back and forth between our cabin and apartment. 

Is all this frustration worth it?  Yes, and that is the point of this post.  Frustration is a part of life, and it is easy to let it drag us down.  We get annoyed with the driver in front of us, or with our loved one who did something we didn’t like or didn’t do something we asked them to do.  The list goes on and on, different for each of us, and different each day, but the list is frequently there, in the background, if not on the surface. 

It will take some time for my netbook and me to work well as a team, but I am sure that we will, once I get all the programs running properly, and I figure out the new features and processes.  I spend some time exploring, some time learning, and some time working with parts I already have set up. Little by little (no pun intended), I am learning how to use it.  

As with many areas of life, I know that ultimately it will be worth it.  I am keeping my eye on the prize, and whenever I feel like giving up, I refocus back to that prize.  By limiting how much time I spend on the frustrating parts at any one sitting, I limit my frustration.  I focus my attention on what is working, get some reassurance from that, and then look at what I need to do to get the next part working.  

Finding the prize in a situation and keeping the eye on it helps diminish feelings of frustration.  Any time I am working toward a goal, that goal is my prize.  What about the frustrating situations I mentioned above? That other driver?   Sometimes looking forward to arrival at my destination is enough to help tolerate the frustrations of traffic.   Other times, I find the prize by reminding myself how lucky I am that I have a car, that I can drive it, that I can afford to drive it, that the roads I am traveling on are relatively safe, and that I have the freedom to go where I want when I want.  As for the loved one not meeting my expectations?  That loved one him or herself is my prize.         

You Don't Have to be Perfect

Last night, my husband was eating some dove chocolates, and I noticed that they had short quotes on the inside of the wrappers. and there was one wrapper that caught my attention.  It said "Remind yourself that it's okay not to be perfect."  Working in psychiatry, I often see patients who believe they need to be perfect, and are stressed  and anxious because they don't measure up.  I ask them if they think they are better than everyone else, and they say 'no'.  I then ask them why they expect more of themselves than they expect of others.
The belief that one must be perfect can come from a variety of sources.  It may be from parents or someone else in the past who said things like "You're not as smart as your sister", or "you'll never amount to much".  This can lead a person to always try to prove that person wrong, or to try to gain their approval (even long after that person has died).  The opposite kind of feedback can also create perfectionism.  "You always get A's on everything you do", or "You're the smartest one in the family".  These  kinds of feedback, for most people, would be positive motivators and self esteem builders.  For some people, however, they feel like they need to keep up this high level of performance in order to keep the other person's respect, and so they aren't able to accept any less than the best from themselves in everything.  For some people, the need to be perfect develops for no traceable reason.   Some people expect perfection from others as well as themselves, but most perfectionists expect it mainly from themselves.
There are some things in life that do need to be perfect.  I would not want my surgeon to be satisfied with mediocre work.  I would not want my architect to use estimates instead of accurate measurements for building my house.  Most areas of life do not require perfection.  Will the world go off kilter and stop revolving if your sheet was two inches more to one side of the bed than the other?  Will your house explode if you don't get every little speck off the floor?
I have never been a perfectionist, but I do get overly wrapped up in details at times.  When I do, I often feel fatigued afterwards.  I try to catch myself, and remind myself (as the Dove wrapper said, I don't have to be perfect.  It takes alot of energy to be perfect in anything.  I don't have extra energy to waste on unnecessary perfection.
If you are a perfectionist, and it doesn't bother or hamper you in  any way, you may see no reason to change.  If, however, it does bother you (or others in your life), there are things you can do to change this aspect of yourself.  When you do any task, think about the 'good-enough' factor.  This is the level at which the task is 'good enough', and any more energy spent on it will not improve the results significantly.  This is also known as the 'law of diminishing returns'.   For each task, there is a different 'good-enough' factor.  If you have variable energy levels, then what is 'good-enough' one day may be too much another day.  Look at the task in the larger scheme of your life, and learn to gage  how much of your time, energy and attention it deserves.  Be selective in where you use your energy to make something better than it needs to be.  
You may want to practice not being perfect.   Try leaving one corner undusted, or two grains of something on the carpet.  Though you may be uncomfortable if things aren't just so, nothing bad will actually happen.  I have heard that the people who make those beautiful Persian rugs will make a mistake on purpose, because only God can make something perfect.  I don't know if this is true, but it certainly gives something to think about.   

Silk Painting, and a New Support Group

If you are familiar with my blog, you probably noticed that I have recently changed the look of this site.  I decided it was time for something new.  I also have become more comfortable with Blogger, and wanted to experiment with different options with colors, background, etc.  I like the background.  It looks like one of the silk scarves I make.
Here's how it is done:  I wet the silk, and stretch it out on a frame so it is fairly taut, and won't touch the table below it.  Then I swirl on silk paint, my favorite combination is blues, greens, turquoises, and purples, with a little pink for accent.  Getting the silk wet beforehand allows the colors to flow into each other, creating infinite shades.  The bubble effect is created by scattering salt on the silk while it is still wet.  The salt attracts the water, making lighter areas where the salt crystals lay, and leaving paint in the surrounding areas more concentrated and darker.  This is an art that I like to do when I feel adventurous.  Because of the way the water, paint and salt interact, there is limited control in how the finished piece will turn out.  You can get similar effects using water colors on paper, by following the same process.
This is generally not a good art to do on the days when I feel like everything is out of control, and I need something I can control,   An interesting observation- On days when my pain is high, it can be good project, because I feel like I need to just let go and let things be.  The results are always pleasing, and often surprising.  Doing silk painting on a high pain day gives me something that I can be pleased with, despite the pain.
There is another change in my blog site that is relevant only to people living in the Cuyahoga Falls/Akron, Ohio area.  I have added a third page to my site, under the tab 'Support Group', located below the header and above the butterfly panel.  This page has information on the new Chronic Pain/Chronic Illness support group I am starting.  Part of each session will be creative, either art or craft, no experience is necessary.  The other part of the session will be educational/discussion on different topics related to living with and coping well with chronic pain and/or chronic illness.  We will meet at my gallery the 1st and 3rd Wednesdays of the month, the first session will be January 19, 2011.  Go to the Support Group tab above for more info and to sign up.
I will tell you more about this support group on a later date.
 

Confessions of a Drug Store Junkie

I have a confession to make.  I went to a drug store today that I don’t normally go to, and realized I am a drug store junkie.  I had a list of six things I needed to get.  I only had 20 minutes.  Did I look for the items on my list?  No.  I made a beeline for the mouth care section to see if there were any new dry mouth products (there weren’t).  Next I went to the eye care section, to see if there were any new dry eye products (again, there weren’t).  On to the nose care section- nothing new there, either.  I noticed that as I made my way from section to section of the store that my adrenaline was up a little. I was enjoying the thrill of the hunt. 

 I am the same way with pain products.  Not the pills, I already take more of those than I like.  I look at the topical products, the creams and lotions.  I am particular about what I will try.  I don’t like smelly stuff (e.g. menthol), or burning stuff (e.g. capsaicin).  There are some pain products that I have looked at, but have not tried yet.  One is Arnica.  It is a homeopathic.  I am not convinced that homeopathy works, but I will probably try this product at some point.  When I do bring home a new pain product, I am never quite sure what to do with it. Do I put it on my arm, where I have been struggling with tennis elbow for over a year?  (This is usually my first target with a new pain unguent, though nothing I have tried seems to help it).  Do I put it on the hip bursitis that I have had for 20 some years?  Do I put it on my neck/back/shoulder that has been a problem off and on for 30 years?  Do I put it on all the areas where I don’t hurt, as long as nobody/nothing touches me?   I can’t very well take a bath in it- that might lead to an overdose- but it sure has been tempting at times.  

Whenever I go to a drug store, I check all these sections to see if there are any new products I can try.  I have lived with Sjogren’s Syndrome and Fibromyalgia for many years now.  I am used to the dryness, pain and fatigue, and everything is in moderate control, but I still have hope of finding just the right products that would give me even better control. When I do find a new dry (name a body part) product or pain product, I get excited, and can’t wait to get home to try it out. 

At various times, other sections of the drug store have been on my must see list: digestion products, feminine products, skin products, foot products, depending on which parts of me are complaining loudest.  Despite my apparent affliction as a drug store junkie, I did get my shopping done in time to get to my appointment.  I only bought two items that were not on my list.

Do Ask, Do Tell

There has been alot of hullabaloo lately about the 'Don't ask, don't tell' policy in the military.  Personally, I think everyone should be accepted for who they are.  That isn't what I wanted to write about today, but the title just kind of came to me, so I went with it.
What I do want to focus on is speaking up for what you need.  People don't ask questions because they feel embarrassed, think they will look stupid, etc.  Generally, if one person in a group has a question, others probably do too, but are also afraid to ask.  If you speak up, and ask your question, not only will you not look stupid, you will look attentive, intelligent, brave, etc.
Two areas where people have trouble speaking up are with their doctor, and with their loved ones.  People go to the doctor, and don't mention some of their problems because they are embarrassed.  Why do you go to the doctor?  Because he knows how human bodies function.  It is his job to figure out what is wrong and how to make it better.  He can't do his job if you don't speak up. When you go to the doctor, ask your questions, and be open and honest about how you are doing.  If you give the doctor the answer you think he wants to hear, rather than the truth, that helps no one, and may lead the doctor to give you the wrong treatment. Sometimes people do speak up about an issue, then don't let the doctor know that they don't understand his reply.  If you let the doctor know you don't understand, you not only help yourself, but you also help the doctor know he needs to be clearer with his patients, and his other patients will benefit as well.
With loved ones, sometimes we may feel like we complain too much, so we say we are fine when we aren't. How can others get an accurate understanding about your issues if you don't tell them?  Of course, remember that there is a difference between telling and complaining or whining.  Part of speaking up is asking for needed help.  Being 'strong', and doing more than you should do can increase your pain or other symptoms, then you are more likely to suffer and want to whine.  Instead, ask for help.  People usually want to be of help, but they don't know what you need if you don't tell them.  For more thoughts on asking for help, read my post titled  'Its Okay To Ask For Help'. For ideas on 'How To Explain Your Illness To Others', read my blogs with that title, part 1 and part 2.

Adaptation 101

I am an occupational therapist (OT). I am trained to look for ways that an activity can be adapted for differing abilities.  That really comes in handy when my body parts are complaining or my fatigue level is high. I have had alot of practice over the past year, trying to figure out how to take care of business with tennis elbow in my right arm flaring up at the least bit of exertion.
I have been going to a physical therapist for my arm, and have been having her give me exercises for my knee pain as well.  Several of the exercises she gave me to do I have had to adapt.  One of them is a stretch for the quadriceps muscles, he muscles in the front of the thighs.  The traditional way of doing the stretch is to stand next to something you can hold on to, lift one foot behind you, and grab onto your ankle with the hand on the same side of your body.  Point your knee down toward the ground, with your foot behind your butt, sole of the foot toward the ceiling.   You can increase the stretch by pushing your hip forward, and/or your foot back away from your butt.  (If you can't grab your ankle, you can grab your pant leg.)  I can't do this exercise the 'normal' way with my right leg, because it puts strain on my right arm.
I came up with two adaptations. The first one, I can do in my recliner chair.  I sit with my weight mostly on one hip, and bring the other foot up next to/behind me.  I then twist so that the foot is behind me, my knee is pointed away from my head, and push my hip forward and foot backward to get a good stretch.  As you might expect, I feel a bit like a pretzel doing this, and my other body parts ask me what it is I am trying to do.
The second adaptation is more creative, and also safer and more comfortable.  I discovered that our washer and dryer are just the right height to put my foot up on to do this stretch.  I simply turn my back to the washer, lift my foot up behind me, and balance the top of my foot on top of the washer, sole of my foot to the ceiling (my hand helps keep it in position, without undue strain on my right arm).  I do make sure I am wearing cushy shoes to do this, so the top of my foot doesn't hurt.
Occupational therapists are trained to adapt things, but you don't have to be an OT to do it.  I know that most, if not all, of my readers have chronic illness or chronic pain issues, that is what drew you to my blog in the first place.  Business as usual is not usual for us.  There are often things that we can't do, or can't do the 'normal' way because of the pain, fatigue, or whatever other symptoms might have cropped up that day.  Knowing how to make adaptations takes creativity and practice, but can be readily learned.
The formula for making an adaptation is as follows:
1.  Know what it is you are trying to accomplish.  In the case of an exercise like the one above, what muscle are you trying to stretch, and in what direction.
2.  What is keeping you from doing it the usual way?  In this case, it was my arm pain, so I needed to find a way to position my leg to do this stretch, without using my arm to do it.
3.  What are some options for accomplishing your goal, bypassing the problem area?  I outlined two options for doing this exercise above, each of which is feasible, one of which is better than the other.
4.  Decide which option seems the best, and try it.   If it doesn't work, try another option.
Not everything is adaptable for every situation, but you may be surprised and pleased with how many things you can do, just by adapting some of the factors to fit your needs.

I Understand Now Why People Cut Themselves

I was supposed to go to work today.  I got up and got ready with every intention of going.  I even went to my PT appointment, which was at 8 AM, so I could get to work sort of on time.  I left PT, turned my left turn signal on, then switched to my right turn signal and came back home.  I work PRN as an occupational therapist on the inpatient psych units of a general hospital. PRN means 'as needed': I am the substitute for whenever anyone else is off.  It comes out to between 1/3 and 1/2 time, which is usually just right for me.  

It is a problem, though, when I am scheduled to work 4 days in a row, like this week (my husband doesn't work Mondays, so neither do I).  By the end of the work day yesterday, I was fatigued, but I went and did my grocery shopping, because I don't have any other time I can do it.  Besides the fatigue, I had a very annoying pain that I just started getting about a month ago.  It is in my arms and back, like the achy, gnawing feeling I get when I have a fever.  I didn't sleep well last night, and still have the fatigue and achiness this morning.

When I got home from PT, I went back to bed for about an hour.  I didn't sleep, but I was able to relax my muscles and mind.  While lying in bed, I started thinking about our patients who cut themselves on purpose.  Some say that it helps them refocus away from their other pain (usually emotional pain).  Others say that they feel numb, and cutting themselves makes them feel alive, able to feel something.  I have accepted their thinking, even though I never really understood it. 

This achiness I have is not strong, but it is unrelenting.  I am constantly aware that it is there, and I thought, "If I cut my arm, I can focus on that, instead of this constant gnawing in my arms and back."  I would just have one, specific area of pain, with an identifiable cause.  I would not actually do it, because I know that cutting myself would not get rid of the achiness, it would just add to my woes.  Having this thought, though, did help me to understand my patients better.

Having one real cut to focus on is manageable.  Having pervasive, unrelenting pain from an undefined source (physical or emotional) can be overwhelming. The impulsive thing to do is to make that cut.  The logical thing to do is to recognize that the cut does not make the other pain go away, it only masks it for awhile, by being a more intense and attention drawing sensation.  If the original pain is not dealt with, the pain from the cutting eventually goes away, and the urge to cut returns.  

I have found that movement helps to calm the achiness for a few minutes, so frequent stretching and position shifting helps.  Sitting and typing allows the achy parts to remain basically motionless, so I should end this post, and do something more active.  If I keep busy, I am less aware of the pain.  I talk with my patients about what they can do when they have the urge to cut.  For some, the urge is so strong, they feel they can't resist it.  For others, often, the key is keeping busy, distracting themselves from the pain.  Ultimately, though, the source of the pain must be dealt with, in order to resolve the pain.