First let me thank those of you who have responded to my blog!  This is my first and only blog attempt and to find out that people are reading it is really quite exhilarating!  The advice is quite welcome and interesting as well. 

I am currently in the UK and doing better on this trip than I have on any other travel in recent past.  As an erstwhile traveler with 27 countries in my travelogue, I was very unhappy to experience serious outbreaks on my recent trips.  My worst experience was in China 2 years ago when I ended up in the hospital with a severe skin outbreak that was on my right forearm...painful, pussy and quite ugly, it left scars.  I figured out that feathers caused that problem.  Since then I have all feathers removed from every hotel room.  Even if you tell them upon registration, you often have to ask upon arrival and then call housekeeping after you get into the room. 

I've also learned to bring a mattress barrier and a pillow barrier that are permanent residents of my suitcase.  I found a product that I use at home and on travel called MiteNix.  This obliterates dust mites and I carry a small spray bottle with me when I travel..it's one of my 3-1-1 containers on the plane because upholstered airplane seats can cause an outbreak.  My best friend found a seat cover for airlines and i carry this with me as well.  I find it works very well and is very easy to use. 

As for restaurant food, I have been able to stay gluten-free quite well by sticking to meat and vegetable combinations. 

It has become easier to avoid the triggers lately but I suffered for four years.  If my blog can help anyone reduce or avoid such problems I will consider myself successful.

I've also learned to wear socks or slippers in hotel rooms to keep my feet from swelling. 

My treatments from the naturopath have been working pretty well.  She restricted sugar and alcohol, caffeine along with bread and gluten and other items I appear to be reacting to.  In addition I'm taking DHist, InflamX and several homeopathic treatments along with Vitamin D which is apparently low. 

Drinking lots of water is also essential to flush toxins from the body, but in particular especially important for me.  Thus I keep a bottle of water with me most times. 

To anyone suffering from this condition, take heart, life doesn't have to feel deprived...just altered. 

I will say that I miss bread and my trip to France was particularly poignant as I watched others consume crepes and french bread which I love.  I managed to not eat them and be satisfied with enjoying the rest of the wonderful cuisine.  I have lost some weight..and I suppose that is something of a consolation. 

Happy travels to you all!

I have been invited to a group dinner out at a local restaurant. It's BYOB, and friends have announced they are bringing beer. Not wanting to be the odd one out, I decided I must obtain and bring gluten-free beer. So today I called 4 grocery stores and 10 liquor stores in an attempt to find gluten-free beer. I finally located multiple brands of it at Roots Market in Olney, Maryland, and Redbridge beer at Dugan's liquors in Pikesville, Maryland, as well as at Your Wine & Spirit Shoppe south of Baltimore on Rt 29. Dugan's was the closest, so I opted for it.

I decided it was best to test it out in advance of my dinner to be sure not to have my dinner spoiled by something undrinkable. So I am sitting here with a Redbridge beer, and I have to say it tastes like beer to me. Not my favorite beer, but beer, nevertheless. It has been over a year since I have had one, so at this point I am definitely working from memory. So all of you out there who have been abstaining, go ahead and live a little!

I recently celebrated my 22nd birthday at a Japanese hibachi restaurant. Knowing that the food would be cooked in front of me I felt safe that I would not get sick. I have been to this sort of restaurant before and it was a success. I am very careful when it comes to ordering Japanese or Chinese food because teriyaki sauce and soy sauce contain gluten.

Something went wrong on this Tuesday night. I was with about 15 of my closest friends, and the chef was very entertaining. I was so excited and distracted that I let my guard down. I left the restaurant feeling fine and continued to have a couple drinks with friends. A couple hours later what I like to call my "gluten stomach-ache" hit. It was late and I had already done my share of celebrating, but I couldn't help but blame the restaurant.

I did a lot of thinking the next day to figure out what made me so sick. Here is what I think...although I have had this disease for over five years, I made a major slip up. As I watched the chef cook the food he kept the rice separate from the noodles. Although he cooked the rice in front of us first, he used the same spatula to move the noodles out of his way. I don't know if it was the excitement of my birthday or me being distracted, but I did not pay enough attention to this. The food tasted great and he did not add any sauce; I guess I thought I was in the clear.

Another thought my friends and I had was that there may have been gluten in my drink. I am very careful when it comes to ordering drinks. I have learned the hard way that some alcoholic beverages they say "might" contain gluten really do make me sick. So I ordered a drink made of only rum and juices--a safe bet for me. The drink was great, but when I ordered my second I did not specify to them over again that I wanted the same exact drink. Again because I was so distracted this drink may have contained something I could not tolerate.

The two major lesson here are:

1. Do not try out a new restaurant on your birthday. Stick with a place you know is safe for you. When you are in a big group like that it is easy to forget that checking for gluten is your first priority. Save the experimentation for a night where you can take your time and make sure it is safe.
2. If you are ordering a mixed drink, make sure you watch them make it! This is something I always do. When it comes to wine you are safe, but it's sad to say that some bartenders do make major mess ups.
   

Lastly, it is important to remember the language barrier when you are out to eat. Eating international foods it great, but many other cultures do not understand what a gluten allergy is. We need to be very careful and very patient. Keep an eye on what is going on in front of you, try not to get distracted--like I did!

There's a lot of talk about how gluten molecules cannot enter into the skin.  But I definitely have a reaction to gluten-containing products.  I have done my best this past year to avoid those things and have been good.  But today has been a frustrating day.  Why is it that some foods claim to be gluten-free but yet, I suddenly fall asleep and wake up dizzy?  Then I go back to check the food packages only to find that little disclaimer that says "this product was processed in a wheat facility".  Food manufacturers should not use a gluten-free label if they aren't completely gluten-free.

This is sooo frustrating.  It makes me wonder if I will ever gain the weight that I would like to gain...if I will ever be fully healthy.  Mostly I am optimistic.  But today, I hate this disease!!!

I have a celiac-related condition that causes severe gluten sensitivity and hives.  Two weeks ago, I visited a Naturopathic doctor. She and I talked for nearly three hours. It was a very good meeting where I shared my past physical issues and she took copious notes. When I had finished with my history she told me that my liver was having a hard time detoxifying my blood and that my constant hives were due to the body trying to detoxify through my skin. This was all very interesting but not very helpful. She then gave me some treatments that she said would help my body to detoxify and put me on a very strict diet. In the past I have had this nameless craving for "I don't know what" that I fed with chocolate and sweets. She took me off of all sweets. She also insisted that I learn what is gluten free...that was an education...it's amazing what has gluten in it, but helped me by telling me about a gluten free bakery and grocery in the area.

I had my doubts about whether I could keep to the diet, but hives are a big motivating force. Living with constant hives has been a nightmarish problem. I itch, burn and swell in various places...the hives travel around my body once they get started and nothing seems to rid me of them. Medicine is often only partially effective.

After following the diet as close as I can for the last two weeks, the hives do seem to have reduced. One of the complicating factors is that I am also allergic to cats, dust mites, mold, mildew, latex, spandex, penicillin, kidney beans and black eyed peas. Using mattress barriers, Mite-Nix spray and avoiding clothes with the problem fabrics has helped but it's hard to get rid of all the problems. My best friend bought me a seat cover for airline seats..that helped in travel a lot.

Today, I washed all the floors and cushions to get rid of cat dander and washed the cat with special anti allergy shampoo.

In the last four years I have probably had maybe one or two days completely hive free.  I've pretty much forgotten what it feels like to not itch and want to scratch myself bloody 24/7.  I can't say I'm hive free yet, but there is definitely a change with this treatment. 

She has me taking Anti-hist and UltraInflamX protein powder mix each day.  It does appear to help a lot. 

One of the additives she recommended was magnesium.  Not clear why this was important but it does appear to be a mitigating factor in this process.  I have also taken a lot of epsom salt baths during this time which is magnesium too.

The problem with this condition is that it is never really clear why the hives are there.  They seem to arrive about and hour to two hours after the exposure and each discovery of the allergen seems to help but never completely rid me of the problem. If I am in public and touch something dirty and then touch my skin before I can wash my hands, an hour later I have a hive there.  One time a boyfriend was the source of the problem...each time he touched my arm or my skin anywhere, I would get a hive.  Never did figure out what he was touching that caused me such a serious problem.  Feathers also caused me a serious outbreak of hives during a trip to China.  So serious I ended up in a Chinese hospital..another nightmare.

A regular allergist did not help a great deal.  He wanted me to take Allegra and Zyrtec together to control the hives.  However, I didn't believe that taking more stuff would be a good idea, knowing what I had been exposed to previously.  I decided to take Claritin only when I couldn't stand it any longer and learned to live with the itching. 

It's only been four years that this has been happening.  Prior to that I knew I was allergic to penicillin only.  Then Latex was identified when I went to the dentist and had a severe reaction in my mouth and throat from his latex gloves. 

This evening I'm sitting on my dining room chair writing this with only one small hive on my shoulder.  It's nice to sit on my furniture without a reaction.  I sprayed Mite-Nix on everything today.  That usually helps a lot with the pet and dust mites problems. 

If you have this condition, don't give up.  I know it's depressing and stressful to have hives so much.  It can really get you down.  I won't say it hasn't been hard because it really has.  On days when my face is swollen up to twice it's normal size and I still have to work and be seen in public, I feel the most depressed.  But those days pass and the hives move to other, unseen parts of the body and I go back to just tolerating the itching.  My hope is that I'll discover all the sources and find ways to eliminate or avoid the problems.  I have to believe that can happen.  Taking one day at a time...one hive at a time.  Not thinking of the future as clouded, that's what keeps me getting up every day. 

Hey all you gluten-free foodies... I found some great gluten-free products at the Fancy Food Show in San Francisco! These are or will be available in major markets. If you can't find them, request them from your favorite store. Here are some of my favorite finds:

Pamela’s Gluten-Free Cheesecake

Pamela’s Products won me over with a New York Cheesecake with a gluten-free ginger cookie crust. When available, there will be 3 inch or 6 inch rounds, and either refrigerated or frozen. Other cheesecake flavors are: White Chocolate Raspberry, Zesty Lemon, Hazelnut, and Agave Sweetened New York Cheesecake. Also coming soon: Chocolate Fudge Cake with Chocolate Frosting and Coffee Cake with Nut Topping.

Conte’s Gluten-Free Pasta

While Conte’s Pasta isn’t new to the east coast, here in the west we hopefully will be able to find their gluten-free stuffed pastas in stores soon. Gluten-free ravioli, stuffed shells, gnocchi (also dairy-free), pierogis (there is a dairy-free flavor) and lasagna are just some of the items they make. They are a frozen product that come in a bag or, new in their product line, a microwave meal! I tasted the ravioli at the show, and it was delicious. I can’t wait to try the rest! These products are available online at the Gluten Free Mall.

Let’s Do Organic’s Gluten-Free Ice Cream Cones

It’s only January, but I can’t wait to try these new gluten-free ice cream cones from Edward & Sons’ brand. Not only are they gluten-free, but dairy-free and soy-free too. You should be able to find these now in Whole Foods.

San-J Gluten Free Cooking Sauces

Known in the gluten-free community for their wheat-free tamari, San-J has finally made a gluten-free version of their Asian sauces. Look for: Szechuan, Teriyaki, Thai Peanut, Sweet & Tangy, and Asian BBQ, all with “GLUTEN FREE” on the label.

3 Senses Gourmet's Gluten Free Chocolate Souffle

The founder of 3 Senses Gourmet created a chocolate souffle that happens to be gluten-free. If you are a chocolate lover, this dessert is amazing — a flourless chocolate cake with molten chocolate spilling out of the center. Look for the Chocolate Souffle and the Caramel Chocolate Souffle (yum!) in the frozen section of stores on the West Coast. Note: the Chocolate Chip Brioche Bread Pudding made by this company is NOT gluten-free.

So I’m new to all this funky technology.  LinkedIn, Technorati, Digg, Blogs, Carnivals, and I’m just really settling to Facebook and thesavvyceliac.com of course.  But right now “Twittering” (or is it sending “Tweets”) are all the rage.  It’s like consistently updating your status with people on Facebook.

But can it help us get gluten-free information?  Well, first off, it can’t if we cannot find people to follow, which is one thing I struggle with on Twitter.  You can’t search topics or names to find people you know or groups like Gluten Free Living unless you know its exact name.  So I’m here to help…Here are some good gluten-free Twitter feeds that are worth following.  When I reference them with regards to the feed, I will type them exactly the way they should be typed on Twitter.

Celiac-Related Twitter Feeds

Recently, I began “Following” GlutenSecret, CeliacHandbook, GFLiving, CSACeliacs and many other people with gluten free or celiac connections.  CeliacHandbook I have found to be one of the most interactive gluten-free organizations.  The CeliacHandbook Twitter feed poses cool gluten-free questions and does quick mentions of products it has heard about.  Celiac Handbook has its own website as well (linked down to the right) which includes restaurant information, celiac stories, lists of events and more.     I am connected with them on LinkedIn as well and the members of that group are very helpful and smart in the way they handle their celiac disease and diet.

Gluten-free Living (Twitter feed by the magazine Gluten Free Living) is very new and in its short time on Twitter doing a good job of spreading news and directing people to its site. In fact the most recent feed I saw was that a Baltimore restaurant is carrying gluten free beer and dessert.  Better go check out GFLiving’ss Twitter feed if you live there!  I am sure this feed will expand with the company’s comfort level.

CSACeliacs is also new to the Twitter feed but so far hasn’t been majorly aggressive in its efforts to get out information. I would think it would be more aggressive considering the lengthy history of the organization.  I will cut them some slack.  They did respond to one of my blogs in the last week.  So I was happy about that.

GlutenSecret looks like it has potential.  I just started being “followed” by it today.  It’s latest feed promises that there is “so much more to come”.  Hmm makes you wonder what that will be — a GlutenSecret maybe?

And of course there’s me!  AmyLeger (No for some reason I didn’t sign on as thesavvyceliac.  How dumb?) Whenever I have a new post on my blog, I always post it to my Twitter feed!  So if you like thesavvyceliac.com, feel free to check out AmyLeger on Twitter.

Keep in mind, I couldn’t list all of my Twitter “followers” in this post, so if you want to see more, just check my feed.  This also doesn’t mean other gluten-free or celiac-related Twitter feeds are bad - it likely means I just haven’t found you yet! Which brings this post right back to where we began - why is it so difficult to find people on Twitter?

This fall you heard about my family's adventures with hosting an exchange student with celiac disease. Ida is now half way through her stay here and I believe she’s having a great time. She’s had some adjustments to make with her diet here. For example: we still haven’t found a regular bun recipe that has met my expectations. Until she came here, she was used to good gluten-free hamburger buns in Norway. So for now she’s eating hamburgers without buns.

As for Ida at school, she loved going to high school football games last fall and checked out a high school hockey game for the first time last night. Her time here has brought a lot of new experiences. She celebrated Halloween, Thanksgiving, Christmas and New Years here. But she’s also traveled. Ida has seen Mt. Rushmore, Lake Superior, the Rocky Mountains, Las Vegas and the Hoover Dam. Next she’s going to Hawaii in February. She is definitely fitting a lot in – in a very short amount of time.

Host Family needed for celiac student

But now another young lady with celiac disease hopes to have a similar experience. I have just been informed about a student who is hoping to come here for the 2009-2010 school year.

While I cannot give out a ton of information about her in this forum, I wanted to do what I could to help out the Youth for Understanding organization by reaching out to the celiac community with the goal of finding a host family for her.

The prospective exchange student’s name is Emma and she is a teenager who has celiac disease. I can tell you that she loves children. So if you have younger kids, like I do, you should still feel free to express an interest. For more information, you can email Betsy at bkiefer@yfu.org. She helps place students through the YFU program.

Hosting a celiac exchange student

As for hosting a teenager with celiac disease, I’ve learned many things from Ida – like my cooking doesn’t entirely stink! My soon-to-be 10-year-old, Emma, doesn’t like a lot of things, including lasagna, spaghetti sauce, and bread that isn’t baked by Mom. But Ida really goes with the flow on these things. I have been hoping this would rub off on Emma, but so far, she hasn’t been too adventurous.

If you choose to become a host family, another thing you’ll learn about -- different words from their country. For example, when we were in Pahrump (about 40 minutes from Las Vegas) last week, one of my daughters said the word – Pahrump. Ida started laughing – uncontrollably. We asked her what was so funny? She said Pahrump sounds exactly like the Norwegian word for fart!! The Norwegian version is spelled promp, but has nearly the same pronunciation as Pahrump. So the girls were saying it in the car all evening back to the house. My in-laws who live there got a real kick out of it too when we told them about it. That will be a memory that will no doubt stick with us forever!

If you would like to see where an experience like this will take you, send Betsy an email. It wouldn’t surprise me if this young lady has been warned like Ida was – that people with food allergies and other health issues can be very difficult to place in a home. That ended up not really being the case with Ida, let’s hope it’s not the case with Emma the exchange student, as well. Good luck!

I love to travel, in spite of airport security and the hassle of packing, (especially for a Celiac), but really...I don't mind. I still love the feeling of rushing to the airport to catch a flight to somewhere...and as the plane takes off, the feeling of soaring above the earth is really one of my favorite things to experience - off to a familiar, or perhaps unknown destination.

With that said, I have learned the hard way over the years, that it really does take someone with Celiac Disease an extra amount of time to pack...I mean packing for one Celiac is like packing for three persons...given the amount of time and though that has to go into the packing of our "snack bag," or as I fondly refer to mine as...the survival kit!
I just returned from a Thanksgiving vacation, hence why this topic is top of mind and I received an email this week from a reader asking for help when she travels around North America for work.  These two ideas were the catalyst for this entry, knowing how tough it truly can be to know what to bring on an airplane that's safe to eat, given the fact that NOTHING in 90% of airports worldwide offers much for a Celiac to eat...safely.

So here goes....my little travel system that works really well - these are just a few handy tips that I really do live and travel by and that have saved my gluten-free bacon many times over when I'm delayed or stuck somewhere, with otherwise nothing to eat. These will keep you safe and sated:

1. I always carry a boatload of gluten free Lara Bars in my bag. There are many flavors but my favorite is Apple Pie.  They come in very handy as a meal replacement when you are flying or stuck with zero options in an airport.
2. I also load up on lots of organic nuts and put them in baggies that can go through security: almonds, cashews, pistachios, etc. and sometimes I'll throw in some raisins too, just for a little extra flavor.
3. Another easy tip is going to Trader Joe's or any grocery store really, but TJ's has great bagged trail mixes with dried fruits and nuts and those are really handy when you are flying a lot and at least they offer some protein and fiber.
4. I also bring hard-boiled eggs along with me when I fly, as well as carrots - I'm sure other passengers just love the aroma from the eggs but I'm discreet..and honestly, don't really care - they are not starving half of the flight like we are! Ha!
5. One other tasty option is slicing up some of your favorite cheese and bringing with it, Mary's Gone Crackers Organic Onion crackers. These are pretty tasty and make for a semi-filling snack.
   

I hope these tips will prove helpful for you. I realize that most of the time we don't have the luxury of munching on warm foods, but honestly I've packed this stuff all over the world with me when I fly, and they truly are life savers.
 
I hope these little tid-bits are helpful AND I would love to hear from some of you about what you bring to eat when you travel...by bus, train, car or plane!

Eat well and cheers!

I've just returned from a week in California, visiting three sets of relatives, and enjoying a Thanksgiving meal for eighteen people.  It was a great experience seeing people we hadn't seen for many years in the beautiful mountains near Big Bear Lake.  We also spent time with family near San Diego, and as a special treat, went hiking in Torey Pines State Park.  After spending six days away from my own cooking and gluten-free kitchen, I arrived home no worse for my travels.  Here's how I avoided any gluten exposure.  I hope it will help some people who will be traveling over the Christmas holidays in the weeks to come.

I took Larabars with me for the airplane, and I could as easily have taken a small bag of  Ener-G foods pretzels.  I stuck with water or 100% juice for beverages on the plane.  My husband's family in San Diego tends to eat fairly healthfully, so I knew there would be lots of fresh fruit available, as well as ingredients for salads.  I ate a couple of pieces of fruit and a Larabar for breakfast, and had a cup of nettle leaf tea that I always bring with me.  My host had very thoughtfully purchased a loaf of Food-for-Life brown rice bread, so I enjoyed a piece of toast too, with sugarless jam.  For lunch, we made some beautiful salads with the bountiful southern California produce and creamy avocados, and had some corn chips and fresh salsa along-side.  For dinner, they decided to take us to "Soup Plantation", a chain restaurant similar to "Sweet Tomatoe".  I had a large salad full of vegetables and greens, and I was able to make my own dressing from rice vinegar and olive oil, in a little cup provided for that purpose at the salad bar - very convenient!  Even though the salad was huge, I felt like I needed some starch too, and the restaurant had a pile of freshly baked potatoes and fixings, so I picked a medium-sized one and added a little olive oil, and some scallions, and salt and pepper.  Delicious!

On the road the next day, we pulled off for lunch, and were lucky to find a great little sushi place where I had an Ahi tuna roll and some miso soup.  I know some miso does contain wheat, but this one did not, and I did not have any reaction to it.

When we got up to Big Bear Lake, I feasted on Martinelli's sparkling cider and some delicious rice crackers I had brought along, and had a few satsuma oranges to satisfy my sweet tooth.  The turkey did not contain gluten, and my host covered the turkey with foil, rather than use a roasting bag with flour in the bottom of it, as is her usual practice.  They did put butter under the skin before I could ask them not to, but they reserved a leg and wing for me that were left unbasted and unseasoned, but were still deliciously moist and tender. 

I went to the store early in the morning and bought fresh asparagus to make for everyone, and some garnet yams to bake for myself and my mother-in-law, who is also gluten-free.  I tossed the asparagus with olive oil, salt, and pepper, and roasted it at 400 degrees for about 10 minutes, after the turkey came out of the oven.  I used flour to make the gravy, but I could have used corn starch, but I felt that I had made enough modifications for myself and didn't want to be a nuisance.   My host had chosen to use a mashed potato product that contained dairy and other things I couldn't eat, so didn't feel the need for gravy anyway.  When the asparagus was done, I tossed most of it with balsamic vinegar, but left enough for myself without vinegar.  When the garnet yams were baked along side the turkey, I mashed them with a gluten-free/dairy-free margarine, a little honey, salt, pepper, and the juice of half a lemon.  I had made enough for myself and my mother-in-law, and there were yams left over for others to taste and enjoy too.

My mother-in-law and I both had a wonderful, tasty, colorful safe meal that didn't look skimpy, or all that different from anyone elses.  For desert, I had reserved a Larabar in the "pecan pie" flavor, and ate that with some hot cider, and two satsumas. Yum!

The next morning, I roasted a small delicata squash, and ate half of that for breakfast, with some chopped granny smith apple and a drizzle of honey.  I saved the other half in foil to eat the next morning on the way to the airport. 

So, home again, home again, with no tummy ache, no excessive bathroom trips, skin rashes, mouth ulcers, headaches, runny nose or brain fog.  Yeah!

While talking with relatives, I tried to gently inform without being too preachy, and will send a few people my book to read ("Gluten-Free PORTLAND - A Resource Guide").  Fortunately, most of our family members are in very good health, and I hope that they will stay that way for a long time!

Other options that we considered were using the internet to locate Trader Joe's and Whole Foods stores ahead of time, in the areas we'd be travelling in.  While that didn't prove necessary, if we had been going to an unfamiliar area, or the heart of the Midwest, instead of fairly health-conscious California, I probably would have done more planning with regard to stores where I could find gluten-free foods.  Another helpful circumstance was that no baking was done at the home - all the pies were purchased, and the home itself was brand new - that's one reason why we were there - to inaugurate the new "mountain home".  Only a few tablespoons of flour were used to thicken the gravy, and I made sort of a game out of having lots of people come over to taste it for me.  Use your own judgment when planning for travel over the holidays.  You know your family best, and what their habits and food preferences are likely to be.  It does help to seek the cooperation of your host ahead of time and not put them on the spot.

Because my host was nursing a broken ankle, and trying to fully outfit a brand-new home, and cook for eighteen, we rightly felt she had her hands full, and simply told her I'd fend for myself and not to worry about it.  Big Bear Lake has several large grocery stores, and buying what I needed was not a problem. 

Interestingly,  I asked if the Von's had a gluten-free section where I could pick up some snacks, and was told no.  I was told the same thing at the Stater Brothers across the street, but I checked out the area where they keep some low-carb and diabetic foods, and found a great selection of Larabars, natural gluten-free fruit leathers, and the brand of gluten-free rice milk I drink, and a few other treats.  So, don't give up hope!  Sometimes even the employees are stumped by gluten-free questions.

Remember that when in doubt, fresh fruit, and fresh vegetables are your best gluten-free options. 

Happy Holidays!