GLUTEN doesn't work for me...

Someone at church asked me if I had a knee replacement. She asked where my cane went??? Was I healed or something?

Yea, I guess you could say that. I had prayed to find my pathway to healing. The answer came 4 years later when the new girl at work asked if I had ever tried going off gluten. I didn't even know what gluten was.

In the meantime, I had been taking some great supplements and going to physical rehab which helped and gave me some improvement. But the pain and swelling in my joints never went away completely. And at my very worst, I had rented a wheelchair.

I hadn't expected that removing wheat, rye, oats(some can tolerate oats but not me) and barley from my diet would change my life. But it has. I've had a few setbacks. Like when I realized that I was bathing in wheat filled shampoo, lotion and hair styling products. And the unexpected GLUTENATION from cross contact. I sometimes wonder what good is gluten if so many are allergic?!

This post is not meant to give you any in-depth info about going gluten free. Just do a search and you'll find lots of great blogs and sites for that. I am mainly proclaiming here that living gluten free can feel mighty good, so don't be afraid to try it, especially if you've tried other things and you're desperate like I was. Here's my story in more detail.

I feel good and have hope for continued improvement. And it's all because of one person who said:

Have you ever tried giving up gluten?

This post is part of Works for Me Wednesday...but for today it's What doesn't work!

Gluten Free Challenge and Triumph

I've been gluten free almost 10 months. And it is still a journey of discovery. Up to Christmas it was steady improvement. Then after the New Year it all started to inexplicably unravel. Unexplained reactions, rashes, hives, illness. It's been rough. People asked me what I had eaten, told me to take better care of myself, go for extensive testing. I was frankly demoralized at feeling that I had done all that I could and yet was still sick. And then a discovery.

Every product I was applying externally had WHEAT OR OATS in it. Right there on the label of my lotion, shampoo, body gel, hair gel. It was the third ingredient on one. I have had the worst reactions from oats. I know some who are gluten intolerant can eat oats. Not me. That is what was in the lotion I was slathering on at work. Bath and Body Works...I'm gonna miss you. I would get to work and break out in hives. Then take meds for the hives while still applying the lotion. Antihistamine, cortisone cream and prednisone. Thank God for prednisone. At one point my buddy offered to make prednisone cookies for me!

It was because of a post I saw titled the 10 silly mistakes I made going gluten free.

So I feel so much better now! And Easter was a wonderful feast after months of suffering!! (I guess that is what Lent is for, right?)
Big thank you's to these special people:

• Nana's Bakery for the AMAZING GF BLUEBERRY PIE
• Irene for the STICK TO MY RIBS CHILI and asking how to make a meal gluten free
• Barb for the best feta cheese this side of the Aegean Sea and the whole grain gluten free crackers and taking me for GLUTEN FREE FISH AND CHIPS IN TORONTO at Broadview and Danforth
  
• El Mayor restaurant and the waitress who first asked if "gluten" was Arabic, then went out of her way to tell me everything I could and could not eat when she understood
• Frances for listening, for warming up the pie and ice cream, for coming to Easter Vigil, sharing Easter Sunday and for being so darn lovable

I am blessed

That says it all about my Christmas. The people, the food, the gifts...this was one of the best Christmases ever. And the very best part was going to church with my daughter. We began Christmas morning together, at midnight mass. We walked in and immediately saw my former coworker and very wonderful friend playing and leading the choir. And when we sat down I realized who was behind me. I whispered to my daughter "It's him...right behind me...the young man who came up to me at Father's day...it's him..."

She looked into my eyes and knowing what it all meant to me said "I'm going to start crying..." This moment was my most precious Christmas gift.

He was the one who said the words that inspired me to write and finally share my words. These words so moved me, I put them at the top of my blog under the title and at the bottom of my blog under the posts. I remember coming home and immediately going on the computer to write an email to a handful of friends. I couldn't just keep these words to myself. And every week I began to share an email with a growing list of people. They would be the amazing moments and people that I encounter in my very ordinary life. Moments like the bird that touched me as it flew past, the people like Mrs Twist who will turn 100 years old in 2008. I got to see her on Christmas Day too!

Mrs Twist's laugh just cracks me up! She looked great, sounded great, and is doing just fine. I wish I could show you the pictures...but I want to respect everyone's privacy. Believe me when I say the pics are great! I bought myself a digital camera!

I have so much to be grateful for...family, friends, eating gluten free...yes I had GF pumpkin pie, cookies, butter tart squares and pizza shells from My Baker. I had cheese, butter and ice cream! For years my stomach would be so sore from dairy but now the gluten is gone...I can eat dairy. So I tasted all the wonderful GF food at my very wonderful friends' on Christmas Day AND AT A WEDDING!! We went to a very large and lovely wedding celebration on December 22 and I had a special gluten free dinner. It was delicious. But unlike many of my fellow bloggers I forgot to take pictures of my GF food...I forgot I had a new camera...so I took pictures of my drinks: gluten free martini, gluten free cappuccino, and gluten free wine. Not sure how I ended up with all 3 all at once...

And yet...at this time of year I remember being the one who listened to a litany of what other people "got for Christmas" and being the one who didn't get much. This Christmas is so wonderful because I remember the sad Christmases, when we couldn't get home, when we lost loved ones, when the money barely stretched to pay bills let alone buy gifts. So if you read this and feel your blessings come up short...have hope for brighter days, have faith in your future and always be grateful for what you do have...that is what kept me going....God is good.

What were your blessings? What are you grateful for this Christmas?

Remember your Nana's kitchen...

I went to the bakery twice last week. I smell like cookies and bread...gluten free of course.

I go for the cookies and bread. I stay for the stories. Some people go there twice a day. I forgot to ask if the unlimited coffee refill applies if you step outside and come back later. While there I met the first gluten free customer they ever had. She was just stopping in for an order and to give a Christmas gift before she left for a winter trip to Florida. She was very excited to have passed her driving test again. She always gives Mrs Baker a hug for carrying her gluten free goodies to the car.

There was a new GF product....Christmas "crackle". I love it!! However, the Baker says this may be the one and only batch of crackle 'cuz he has no idea how he made them. He is confident enough in his skills to admit they were ginger cookies gone wild. They all ran together in one mass of crackley goodness. They may never happen again.

The Baker and I are both allergic to real Christmas trees. We also both had those silver artificial trees as children, those ones with long, straight tinselly branches about a foot apart. Instead of "Andy Williams"... we had "George Jetson".

I loved hearing about their trip to Mexico in February. Since he was "in the business", the Baker got to tour the kitchen of the hotel/resort. It was their first big vacation in years and a well deserved one in my opinion. I hope they take another one soon. Getting up to bake in the wee hours of the morning can wear you down a little. We can't be having any baker burn-out around here. Please. Renew that passport. Plan another trip. Shut the shop...but not for too long! And make some more crackle please!

I think I am definitely a "regular" now...

It takes a village to be gluten free

"For My yoke is easy and My burden is light."~~Matthew 11:30

I was going to title this post "My Butcher, My Baker, My Candlestick Maker." When it is order time, I get emails from a butcher that sells chemical free meat (one of my other allergies). It is really tasty and not as expensive as you would think.

I am on a first name basis with my Baker and his wife . In fact, I spent 2 hours chatting at the Bakery on Saturday and all I bought was 3 gluten free pizza shells. (Someone had just come in and scooped all the GF cookies!). They have an unlimited refill coffee cup and before you know it...they were closing the shop and I was still there. Mrs Baker is GF too after years of providing for others. Symptoms she had for ages are gone. So all I can say is: does gluten do anything good for anyone? (I really wanted to say kill the gluten or gluten is dead to me or gluten is the devil).

My Baker is thinking of starting a blog and I know it would be GOOD. Do they have stories! And they are very caring people who listen and do their best to help people with special needs eat great food and feel normal. The place if full of interesting people...and lots of cookbooks. If it's packed the Baker will tell someone to move over and make room for you. Once I was thinking of buying extra cookies, I was taking some for work and thought I might freeze some. He told me I had enough and why freeze them he was making more next week. Mrs Baker said to "sell up not down!" You might get called beautiful (no extra charge for flattery) or asked to runaway together...Mrs Baker doesn't even blink at the mention...they are an awesome team and it's all a laugh.

I thought it would be funny to say the position of Candlestick Maker is available but there are many candle sellers at work and even someone who makes them out of soy. And I don't actually burn candles anyway.

I want to thank my friend Toronto Barb a.k.a. Vacation Barb for sending me quinoa in the mail. Zehrs had been out of stock for months. And in a Murphy's Law kind of way as soon as I got mine in the mail the shelves were full of it. We got quinoa in abundance which makes me very happy. Liz and I have been discussing a possible turkey stuffing with quinoa, that Peruvian grain that I love so much. It would include dark wild rice. Liz(aka my gluten free angel) also has a great post called It's just food!. She made me GF Butter Tarts today!! Giant ones. I almost cried even before tasting them! Then I was just too happy to cry. They are amazing.

These are some of the people who have helped me be gluten free.

I said I would not be anxious about food. Now I know when I have an incident of glutenation it won't be long till I'm back to normal. Not like the prospect of increasing illness I felt before. So this is really relaxed food discussion. And it feels really good to talk. Thanks for listening.

Gluten is (just) a word.

Here's what one of my favorite blogs had to say about My Baker.

Anxiety

"... do not be anxious about your life, what you shall eat or what you shall drink, nor about your body, what you shall put on. Is not life more than food, and the body more than clothing?
... do not be anxious about tomorrow, for tomorrow will be anxious for itself. Let the day's own trouble be sufficient for the day.
~~Matthew 6:25,34

When I read this scripture I looked up at God and said "You gotta be kidding me??" Anxious about food?? I can't remember when I was NOT anxious about food. Food has hurt me and hurt me bad. One of the things I discovered was that about 30% of Celiacs are overweight, experiencing INTENSE food cravings due to malabsorption of nutrients. So you are overeating and starving at the same time. I won't even go into all the places I hurt and the painkillers I've taken in the last 5 years. Sometimes I felt like every meal is a round in the ring with...whoever is the best boxer right now....

But now that I have said that....at Thanksgiving (the Canadian one in October, not the US one this week) I told myself life is not all about my food problems. Holidays are about people. So that is when I spoke to Mrs Twist and found out she is 99 years old. I have been seeing her for at least 10 years and had never made an effort to speak to her. I could explain by saying these are large gatherings and she is a quiet lady. But it's no excuse.

So now that I know how to eat I can actually think about it less and concentrate on life. OK God...I finally get it...

Alex's Cake

Attention Gluten Free Bloggers, there's a new kid in town and she's good, real gluten free good. She is my GF angel, the one who told my to try eliminating gluten. She is witty, kind, a great writer and she is a GF genius in the kitchen. Her blog is just starting but already I am excited. The first post is a cake named after ME! No one has ever named a cake after me!!!

Since giving up gluten I am finally experiencing relief from arthritis and I am walking a little better every day. She keeps saying we're going to be playing tag soon! No one ever wanted to play tag with me because I was so slow...a sad little memory from childhood. But now, until we can play REAL tag, and you know one day WE WILL, we're going to play blog tag. Liz at Barren Wheat Field is IT!!!!

Alex's cake was AMAZING!! Visit the Winky Cafe where she makes it all happen (that's her kitchen but I hope one day she opens a real cafe because gluten free is the best!)

A blood test, a walker and a wheelchair

It is food that heals us. This isn't about just being gluten-free. This is about really being alive. This is about living, in food, in community, in laughter.
~~gluten free girl, Shauna James Ahern

Today I went for the Celiac blood test. I keep asking myself why I need to know. The treatment will be no different. Don't eat wheat,rye, barley, AKA gluten. When the subject comes up I will be able to say "I'm Celiac" instead of "I 'm allergic to Gluten". I'll have to explain either statement. I didn't know anything about Celiac and gluten till this year so chances are most people don't either. I've heard there is a tax advantage. I'll be able to deduct my $6 bread and $10 almond flour. They are half the size of "normal" packages.

While I was sitting at the Medical Lab waiting to give my blood for the test, there were 2 people that caught my attention. They weren't together but they were about my age. One was in an electric wheelchair and the other was using a walker. The woman in the wheelchair came out and pulled up close to the man with the walker. She was waiting to speak to a technician. She glanced over and spoke to the man. I heard her say Life is hard sometimes. The man smiled and nodded Yes. Then she said We need more love in the world. The man smiled again, nodded and said Yes.

I remembered when I had to rent a wheelchair. I remembered when someone who saw me walking offered me a walker...less than 6 months ago. I was having a really bad day. I had probably just eaten gluten. Maybe it was pasta, cereal, a sandwich or a can of soup.

This week I went to my newly joined fitness club after work. I walked in and used the cycle and the treadmill. It was only for a total of 13 minutes and it took me over 20 minutes to do it. I had to stop a few times to rest. And I was sweating when I was done. But I wasn't shaking like I was the first day when I only did 3 minutes.

Today, I was reminded of the words "There but for the Grace of God go I..."

Anti Endomysial Antibody blood test...$42.75

Living Gluten free....priceless....

Gluten is a word...part 5

After years of suffering and the downward spiral of symptoms it would be easy to think why did it have to be this way? Part of it was my own narrow mindedness. Someone mentioned gluten to me years ago and I dismissed it because I didn't understand it. But as in so many things I couldn't understand until I was ready. Ready to reach for wellness out of desperation. Ready to change. When you are living with tolerable problems it's easier to stay the same than try something different.

And the people along the way...I am so grateful they are in my life. I found out the great power of friendship and kindness. The friends who were understanding, the ones who encouraged me, helped me get through every day. And of course the ones who were instruments of healing. The gifted professionals who chose their work to help others. Even my doctor is happy for my improvement. He complimented me on my correct diagnosis. I told him it wasn't me...it was my coworker! Now I am now the one telling others.

It was worth every moment of pain to connect with people in a new and deeper way. There is meaning and purpose in suffering even if we can't always open our hearts to its power. I am also reminded that, even though I am stronger right now, I should never forget what it felt like to feel weak and hopeless. I should never forget to have compassion and understanding for those still suffering. I think back 5 years to my simple short prayer for physical and emotional healing. I wrote it because I hoped that it would have more power if the words were written. There is power in the words.

When Jesus saw him and knew that he had been lying there a long time, he said to him, "Do you want to be healed?"
~~John 5:6

Gluten is a word...part 4

I lived with my symptoms and some days were better than others. Now I know that the "better" days were most likely days with less gluten. I started an exercise program that was designed for people with low mobility. I hadn't had the sensation of exercising for years and it was great. I lost inches off my waist and increased muscle tone.

The trainer would tell me to try other activities like walking but I was still in pain. I used pain killers to get through the week but tried to give my body a break by using less on the weekend. That meant limiting activity. It seemed like a vicious cycle.

Everything I ate seemed to cause more pain or swelling. I had eliminated most of the common allergens. I'm not sure why, but I neglected gluten. It was last on my list of things to eliminate. Gluten seemed so foreign a term, more about food science than anything else, and I didn't know much about it.

Then someone new started on my shift at work. She had been told to talk to me because we had something in common: food allergies. She was enthusiastically gluten free. No more pain. No more inflammation. Life was good gluten free. She has become my gluten free "angel" of information and encouragement!

I started eating gluten free during the week. Typically, by the weekend, I would be feeling fabulous. And then I would think, "it can't be the gluten"...and I would indulge (people battling food allergies can be a little delusional at times). Mostly in social situations because I was unprepared or didn't think I should burden others with my problem if I was at someone's house. All the symptoms would return.

As the weeks went by, I was gradually feeling so much better and with lots of reading on the Internet, I learned how to eat gluten free so I didn't feel deprived. And I realized I had to speak up and take care of myself which has always been a challenge for me. I still have some setbacks and reactions but my body seems to recover quicker now. I have to be careful with cross contamination and read labels carefully. My best bet is to eat unprocessed, simple foods that I call "peasant food". It will most likely take me a year or two to heal completely. But for now, everyday feels better than the day before.

My gluten free "angels"...they make life very good. My coworker is am amazing cook/baker and she shares, Doug and Barb from "Nana's Bakery" make me laugh and bake for me, even Zehrs...I couldn't live without the gluten free products. Living gluten free is not so bad. Feeling healthier is very good! I feel GLUTEN FREE GREAT!

~~to be continued, part 5...

Gluten is a word...part 3

Everything started to get worse about 5 years ago although I've lived with stomach problems all my life. I don't blame my doctor. He tried to address my symptons and give me some relief. Tests, specialists, meds. He really tried. I told him I couldn't walk. He signed a handicapped parking application and I stopped complaining and lived with it. But it was no life. I rented a wheelchair one summer to take on vacation. The next summer I stayed home and while walking in the yard I fell like a chopped tree. I spent the rest of the week on the sofa. By God's grace, I went from a job on the road to a physically easier inside desk job.

But I hid how bad it was getting. Lots of painkillers and a few supportive friends. I was inspired by someone who had overcome many physical challenges herself (you know who you are!).

I wrote a prayer asking God to show me my pathway to healing, both physical and emotional. Twelve days after that prayer, I got a phone call from an acquaintance I had met at a woman's group. She noticed my problems walking and said she was selling a powerful supplement that might work for me. Later on I would find out that she had said a prayer to connect with people who she could help.

The supplement helped immediately and I experienced relief for a while. I was able to walk easier, there was less swelling and pain. But I had to take large quantities adding several products to get results. Now that I know what the problem really was, I realize it was like trying to put out a house fire with a bucket. The supplement was good detoxifier but the problem was systemic. If I was still ingesting gluten which my body viewed as a toxin, the supplement would never really work completely. The inflammation grew and affected so many areas. Each problem had it's own name: edema, rosacea, cellulitis, ovarian cysts, arthritis, psoarisis, acne, gout, fungal infections, irritable bowel, chronic fatigue. Since giving up gluten 3 months ago EVERYTHING IS BETTER OR GONE! Thanks to a new coworker who was enthusiastically gluten and PAIN free...

~~to be continued....Gluten is a Word...part 4

Gluten is a word...part 2

1 out of 100 Americans, it is estimated, has celiac disease. Only 3% of us have been diagnosed. Now, some of those people have skipped the doctor's visit, the blood test, and the biopsy. They stopped eating gluten and felt so much better that the official diagnosis doesn't matter. They aren't counted in the official statistics. But most of the people with celiac have belly aches or anemia or swollen joints or infertility problems or exhaustion or a multitude of little complaints that they have come to accept. They don't know that they could feel better. They could be reborn.
~~gluten free girl from the blog post "do you have celiac?"

I have been reborn. "Gluten free girl" said it so well I had to quote her.

She has a book by the same name coming out this week and I'll be buying it.

Last week someone told me I even sound stronger. Every week I feel better than the week before. But strong is definitely not how I felt for most of last winter.

I won't go into all the symptoms in this post but I will say I experienced the most physical pain I have felt in my life. Pain and lots of swelling everywhere. And I mean everywhere. Swollen joints, feet so swollen I couldn't do up my shoes, fingers so swollen I couldn't close them, eyes so swollen it hurt to open them. Even my ovaries were swelling. My doctor asked me if it felt like a knife was going into my body. Yes I said that's exactly what it felt like.

One day at work after eating multigrain oatmeal I felt like someone was stepping on my feet wearing steel toe work boots. I started to cry and begged a coworker to get me water so I could take painkillers. I couldn't even walk to get myself water. Multigrain oatmeal with good things like whole wheat and spelt. It sounds so healthy right? I came home and threw away the box. For someone with wheat intolerance or Celiac it is definitely not healthy. But I didn't know it at the time. I was playing hit and miss with the game of find the food allergies.

~~to be continued...Part 3

From the archive: Gluten is a word...part 1

Gluten is a word...part 1

I've been debating whether to blog about my struggle with food allergies. It is has been a long and winding road to wellness. Some of the people who know me have heard this story. But many have not.

I'm seeing a ripple effect as I share my experience. People who have symptoms they have lived with for years, symptoms they have been given medication to treat, symptoms that never completely go away no matter what meds they take...are getting better when they remove gluten from their diet.

I've mentioned that some of my earliest memories of childhood are of reading and books. The other big memories are stomach problems, rashes and pain. I just found out that there are countries in Europe where children are routinely screened for Celiac disease. The term Celiac was invented by a Greek. That's where my people came from. This is all new to me and many of the people I know. And maybe it is new to you.

This is not going to be a blog with all the info on Celiac Disease and food allergies. This will just be my story and a little of what I've learned. Because this blog is about how words change and transform our lives. And gluten is a word that has changed mine.

Just so you know...this story is definitely going to have a happy ending.