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Dizzying Disclaimers!

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!


Gluten-Free Travel Tips

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!
Mix 1 package of Pamela's Pecan Shortbread cookies, crushed, with 1/4 C margarine or butter, melted. Press into a 9" pie pan. Preheat oven to 350 and bake this crust only for about 5 minutes if using a pumpkin pie filling. Cool. Pour in the filling, cover the edge of the crust with foil, and bake according to your pie filling instructions.

I had extremely poor success previously, both with a conventional gluten-free pie crust, and even a purchased frozen gluten-free pie crust. Both were so tough they could not be cut with a knife! So this Thanksgiving, I tried two pies, one with the above crust of my invention, and the second on with crust made from almond meal from a recipe found online. The almond meal crust was okay, but the crumb crust made with Pamela's pecan shortbread cookies was "to die for." My son is 22 and he was very disappointed when this pie got gobbled up so fast. He said that it was the first pie crust he'd ever liked enough to eat it all of the crust. This was absolutely wonderful for pumpkin pie!
I'm a public relations professional and have worked in this industry for many years, enduring more than my share of work luncheons, social gatherings and banquet dinners, like the one I'm attending tonight with a client. When I do attend these events I'm always apprehensive beforehand, worried that my meal could somehow be contaminated, in spite of my best efforts to be as proactive and prepared as can be before walking in the door.
 
Normally, I contact the catering manager of the event I'm attending beforehand just to clarify that they know exactly what gluten-free eating and food preparation is all about, because there have been instances, like the experience I had last week at a luncheon, when the dish was supposedly gluten-free but was not. For example, last week I was at PR luncheon for a group that I belong to and I'm also the front person who interacts with the caterers of this particular hotel. They have served me many gluten-free meals throughout the year, and have always been correct, so last week as I sat down to my plate of Tri-tip and steamed veggies, I thought I was in the clear. As I looked around the table at the other plates that has a nice looking sauce over the meat, I felt safe that they had omitted that from my plate and all was well - not so. I took one small bite off the most cooked end of the meat and thought, "wow, this is pretty good"...then it hit me..."this is way too tasty to be gluten-free and non-marinated." So there I sat at the table with nine other colleagues, as I politely chewed and tried to decide how on earth I could dispose of this contaminated bite without totally embarrassing myself. I quickly summoned over the waiter and explained my suspicion, asking her to check with the chef. Sure enough, they had marinated my gluten-free Tri-tip in soy sauce and seasonings. A very close call.

It is tough enough to try and be super conscious and prepared in these situations; without having to worry that the chef won't get it right, but you know what...there are NO guarantees. Which is why I highly recommend to any and all of you to always, always make every effort to combat this situation before you arrive at an event or party. I'm sure we can all swap stories about what it's like to be sitting at a large table and when the waiter gets to us we have to go through our gluten-free spiel about exactly what we can and cannot eat, only to become the sole focus of conversation hence-forth, with questions like, "so you can eat meat?? or was that wheat? Now what do you have?"....sigh, right?!

I love a fun party or even work event from time to time, but I have learned the hard way and continue to learn, that we Celiacs can never, ever be too careful or too prepared in these types of situations because behind kitchen doors, so many things can go wrong via miscommunication and when we are relying on someone else to pass along our important message, there are risks.

I would love to hear from any and all of you about some of your stories or anecdotes regarding similar situations and what you do to prepare.

Wish me luck tonight!

Cheers

Just one milligram. That is truly all it takes. As mentioned by Dr. Thomas O’Bryan in Unlocking the Mystery of Wheat and Gluten Intolerance, that is just one sixteenth of the size of a fingernail.

During the lecture caught on camera, Dr. O’Bryan talks about a woman whose intestines were badly damaged by her continued ingestion of gluten and refused to heal, because she was ingesting just one milligram of gluten per day.

And considering the range of symptoms that celiac disease is capable of, ranging from neurological to intestinal, it seems entirely possible that gluten absorbed through the skin may even manifest in ways that are unfamiliar.Ways that to you and I may be harder to pinpoint, harder to associate with gluten. So why then do we risk it?

Consider the number of personal care products you use in a day. If you sit down to list each one from toothpaste to mascara, you will likely find as many as 20, as few as 10. And if most of those products contain gluten, isn’t is entirely likely that the skin, our largest organ, which is capable of absorbing up to 60% of what is applied to it topically (according to Good Housekeeping Institute) can absorb one milligram?

All of us with gluten sensitivities are held accountable for something of utter importance: our health. And it is the realization of the vast improvement of our health and well being when adhering to a gluten free lifestyle that motivates us. We prepare our own foods, we call restaurants ahead of time, we eat before a party, we share with others our wealth of gluten free knowledge. And manufacturers are responding. That is one of the most exciting things—to see our efforts being realized!

They are even formulating cosmetic products with us in mind, replacing wheat germ derived Vitamin E with that from corn.  Leaving out hydrolyzed wheat proteins—a major ingredient in shampoos and hair products. In a sense, slowly but surely, they too are going gluten free. And perhaps this will help more than just those who are already diagnosed. Perhaps some of the 97% undiagnosed gluten sensitive will notice the influx of gluten free labeling and question their own health and diet. Maybe just by looking out for our own health and families, we truly can help spread the word!

My husband and I had been in “survival mode” for about 3 months; back in October of 2000, our then-18-month-old daughter was getting strong and healthy on the gluten-free diet.  But I needed more for my sanity.  I couldn’t keep feeding my daughter only hamburger, eggs and French toast until she was 18.  I needed to find people battling the same issues as me.  I tracked down the only celiac support group in my area, but it catered to adults.  But that is where I met the women who were about to change my whole perspective on managing a gluten-free childhood.

With just three families, the women started a local support group for parents back in 1998.  “[We] knew that we could all help each other if we banded together”, co-founder Julie Jones says of those days now 10 years ago. Lynda Benkofske is the other co-founder of the Twin Cities Raising Our Celiac Kids chapter in Minnesota.  “I wanted to network with other families that were dealing with ‘kid stuff’ [like preschool and fast food restaurants]“, Lynda recently told me.  My family became one of those families Lynda was talking about.  We went to our first meeting in October of 2000. It was great!  I felt so empowered; like a weight had been lifted off my shoulders.  “We could comfort parents who were frustrated that no one else understood the difficulty of what they (and their child) were going through.  I still feel that rewarding feeling every time I leave a meeting today”, Jones says.  Clearly the group struck a chord.  In ten years, the Twin Cities ROCK chapter went from 3 families to 180+ families.

The meetings also enlightened me about everything from gluten-free donuts to McDonalds French Fries; food information that was priceless to me and helped me persevere through the tough times.  A 2007 study supports what I and many others have felt.  Research at Beth Israel Deaconess Medical Center in Boston, Massachusetts found: “…support groups may be a productive way to improve…adherence to gluten-free diets.”   The findings were no surprise to Jones, who said the study “…matches what we have seen at meetings over the years.”

The research looked at what issues might affect a celiac’s adherence to the gluten-free diet including anxiety, depression, difficulty in finding gluten-free foods, and the avoidance of gluten to avoid symptoms.  The findings showed the cost of gluten-free food and “…changes in mood and stress levels affected the ability to…follow the gluten-free diet.”  It said the solution was to provide patients with education and support group connections; patients who followed through were more likely to stick with the diet.

Shelley Gannon, wife of retired NFL quarterback Rich Gannon told me she agrees. “The information [members of the parents’ support group] shared was invaluable”.  She believes “…everyone should be a part of a group in some way.  There is no way one person could learn all the information [by] themselves.”  The Gannon family was a very early supporter of this group and groups like it after their daughter Danielle was diagnosed at a young age.

So what can you do right now if you are struggling to find a support group?
  • Find an online support group to get you started.  You can find one almost instantly using any search engine.  In an online support group, you will always find someone available to help you with questions until you find a traditional support group. 
  • Get into a traditional support group. If you attend a support group in person, you will likely find it to be a more personal and rewarding experience.  Building a personal network can strengthen your confidence in conquering this diet.
  • Be an Innovator!  If you still can’t find a group that is a good fit, Benkofske recommends starting your own, “…if you have the passion to help others while at the same time helping your own family, go for it!” 
So here’s to you being savvy, getting inspired and saving your sanity!  Become a gluten-free groupie!

Even just a few years ago, gluten-free shoppers were going to grocery stores with papers in hand, making sure they were reading ingredient lists correctly. In fact, in that first year after my daughter’s diagnosis, my average time at the grocery store doubled–and so did my bill.

But now, technology is making it a lot easier for us to navigate the aisles with more confidence and a lot less paper. I recently received a notification online that talked about an application for the iPhone that helps you access gluten-free ingredient lists.The software developer, Clan Thompson, also makes the software for Smartphones and pocket PCs. It is great for companies to seize on the need for easy access to gluten-free information and create software like this.

But dare I utter the words…Is the application worth it? You may be saying “how could it not be worth it? ”Well I’m personally not quite there yet. It’s not that I’m afraid of technology–although my husband might say I am. And it’s also not because I don’t have an iPhone or a Smartphone. It’s because I don’t understand why you need an application for something you can just find online using your cell phone with internet access.

I set out to get some answers. I checked in with my iPhone connections: my sister-in-law and my celiac brother. I asked them to check out the “app” –as the tech-savvy cal it– but I also gave one a link to a gluten-free ingredient list and another link to a forum that has an ongoing product list. How do they rate?

First thing they both said: “the application costs $24.99” and my sister-in-law Dani Kassner added “…which is a little spendy”. Clan Thompson developed the software, and says on its website it “…will provide new versions quarterly, but you must purchase them individually. ”From what I gather, you could be paying as much as $99.96/year for updated gluten-free lists on the iPhone.

Software for a SmartPhone is $29.95, but at least double that for a year subscription which includes updated information. No matter which one you buy, the application for the “Celiac Food Smartlist” says it “…makes it easy to find gluten information on over 18,669 products.” It is a good start. My brother, Dave Cook, who has celiac didn’t buy the application, but says in general he finds iPhone “apps” user-friendly.“If this app can put the gluten-free database at your finger tips, and make it easy to search, [we’ll probably] be buying it”, he said.

In comparison, what did my “guinea pigs” find when they checked out the regular web links I sent them? “The [ingredient] link…worked great for me…” my sister-in-law reported. My brother said the forum site with the product listings was “tedious” to get to, but it worked and he could read it.

Thankfully we live in a time when we can make the choice: pay extra for the “app”, or just stick with the good ol’ World Wide Web. What do you do? I would love to hear about your innovative ways of using technology to help you handle the gluten-free diet. As for me, I’m pretty old fashioned. I either look it up online before I leave the house or at a last resort, I print up a list and bring it with me to the store. I know…someone just get me a cane.

Over the past few weeks I have made two trips to Denver, CO—one to visit family—and the other for work.  During both trips to the Mile High City, I was pleasantly surprised to find that the knowledge of celiac disease and eating gluten-free is fairly prevalent. I always worry a bit before heading to a new location, or different part of the country/world, not knowing what the level of celiac awareness will be, but on these two particular ventures to Colorado I was very happy and excited with what I found!

In my opinion and from my experiences, I have found that eating out at perhaps more "up-scale" restaurants seems to be a safer bet vs. faster food or even take out. I don't mean this to sound "snobby" in any way, shape, or form, but it seems that higher-end restaurants want to get it right and take more care with their meal preparation—now, I realize that this is by no means a 100% guarantee for eating safely just because you are paying more for your food, but from my experiences I have found that wait staff and chefs seem to be much more educated when it comes to eating gluten-free, under these circumstances.

With that said, the two Italian restaurants that I visited in Denver, one for a lovely dinner with my brother and the other for a late lunch/dinner, were both terrific.  Truly, one of the highlights of this week's business trip to Denver was discovering the restaurant Panzano, in downtown Denver on 17th Street. At first I was a bit alarmed with the limited "bar menu" we had to choose from given the time of day, but I quickly learned that our server was very educated on eating gluten-free.  He guided me through the menu and went out of his way to create a gluten-free Caesar salad, and wonderful antipasti plate that was fabulous, but the best part of the experience was when our server asked if I would like my own basket of gluten-free focaccia bread! Uhhh, "what did you say?" I replied...I continued, "Are you SURE it's gluten-free and safe"...he responded "Yes, it is" and they do all the fresh gluten-free baking every day in their bakery that's designated for celiacs and not contaminated.  In that case I said, "PLEASE bring me some bread! And wow, was it delicious—I ordered two plates!

The other restaurant that I visited was in the downtown Theatre District, called Prima Ristorante. It was also very enjoyable, sans the focaccia bread! The restaurant is tucked inside the lovely Hotel Teatro on 14th Street and is well worth the visit, especially if you are looking for a safe and enjoyable dining experience. I had ordered a wonderful asparagus appetizer and a salmon entree that they specially prepared for me in a separate, gluten-free pan. Our European waitress was very aware and double-checked everything I put in my mouth, including reviewing every ingredient in the homemade sorbets that they serve. I felt very well taken care of, and therefore was able to fully enjoy a rare dinner with just my brother and me.

The next time any of you are in Denver, I encourage you to visit either or both of these great restaurants and enjoy all the delicious choices offered and care given to you during your meal.

Enjoy and safe travels!

With the holidays looming on the horizon, invitations to highly-anticipated dinner gatherings are arranged. I usually dreaded any environment involving food because, much to my dismay, the buffet tables arrayed with decadent dishes and gluttonous enticements are all gluten laden, and I realize I cannot even consume a morsel, and I’m ravenous! So, how do I avoid the drama of starvation or anti-socially concealing myself in a corner sipping water? I follow two guidelines to assure a pleasant social experience.

First:
Call the host in advance. Explain in simple terms your dietary restrictions. And when I mean simple, don’t verbally vomit medical terms and intimate, symptomatic details, but specifically list foods that you can and cannot eat. Even if the host appears to comprehend your situation, don’t expect them to accommodate or fully understand you. So then...

Second:
BYOD (Bring Your Own Dish): After my explanation, I always offer to bring my own food to relieve the cook from added labor (and to guarantee that my food isn’t cross-contaminated in spite of the cook’s good intentions). Yes, as I consume my "special dish" while others inhale turkey with stuffing, I may receive inquisitive stares and be bombarded with personal questions, but, as my husband says, it is what it is. At least I’m not dealing with a low-blood sugar episode!

After explaining to a friend the prescribed action for celiac disease or severe gluten intolerance—a lifetime avoidance of gluten from wheat, barley and rye—I am often met with the sympathetic reply, “that must be really difficult.”

 

As someone living with severe gluten sensitivity, I know that most days it’s not so bad, and only occasionally do I rush starving into a convenience store voracious, in search of any allowable snack.  Though ultimately, I, like most would still argue that living without gluten is much easier than living with it and all of its awful effects.

 

IBS, constipation, gas, bloating, brain-fog, acne, rosacea, dermatitis herpetiformis are all symptoms of celiac disease and gluten intolerance.  So is it easier to treat, accept and mask any one, or even all of these afflictions or to shop specifically for gluten free foods, cook more meals at home, order off the menu and read food and cosmetic labels?

 

Of course, I do occasionally long for the days when a lazy Friday evening dinner required no more than dialing up a pizza company.  But when I recall my life before going gluten free, the days during which I was 10 pounds heavier, fighting off unexplained acne breakouts, brain-fog and other digestive troubles, all of which required multiple medications and treatments, I can easily reply, “It’s really not so bad.”

Hello all you Celiacs,

I posted the article, "When Mistakes Happen, Focus on Comfort", with the best of intentions, but the feedback has been pretty controversial, taking me completely by surprise.  Obviously these recommendations are not going to help everyone.  Anyone who knows anything about Celiac Disease knows that the array of possible symptoms varies tremendously.  I am also unhappy that people seem to be trying to one-up each other on the misery scale, and that needs to stop, please.  We should all be trying to help and support each other, and part of that is to validate each person's suffering.  There are ways to decrease one's extreme sensitivity to things that offend our immune system.  Integrated Manual Therapy (IMT) is one that I hope people with severe gluten intolerance will try to explore, as I personally have received tremendous benefit from this therapy.
I was born and raised a Catholic, yet, upon my diagnosis with Celiac Disease, I began to question the theory of Karma, and whether or not it does in fact exist. In Eastern Religions, through the laws of Karma, the effects of all deeds actively create past, present, and future experiences, thus making one responsible for one’s own life, and the pain and joy it brings to them and others.  I have wondered many times - why me? Why do I have Celiac Disease? Then the answer smacks me directly in the face…why not you?

I was always the person at a restaurant who ordered with what I like to call "flair." I realize the server dreaded people like me; those who never order what is on the menu, but rather a variation of it. I was never the kid who longed for the burger with the special sauce, or the pickles, or the onions, or even ketchup with my French fries. I was the one who asked for no mayonnaise, sauces on the side, and hold any condiments that are runny or fragrant in any way.

Yes, I was a child who adults would refer to as "picky." I was the daughter who refused to eat meatloaf because of the way my Mom mashed it together with her hands. The dinner date that chose to pass on the salad because mayonnaise-based dressings were as unappetizing as the venison my Dad hunted in the mountains. Over the years I became adept at specifying how I wanted my meals cooked at restaurants, and sending it back when it was wrong. This is why I’ve thought that Karma has come back to haunt me. Many times, I even resorted to telling restaurant employees that I was allergic to mayonnaise, so that they would give me a new bun rather than just scraping off the original. I am not proud of my fib, yet it did prepare me for life with Celiac Disease. Anyone with gluten intolerance who has eaten at a restaurant, either by themselves or with a child or a spouse, has received a blank stare when they alert servers that they are allergic to gluten. I call it, “the deer in the headlights look”—it is that confused wide-eyed gaze that is occasionally followed by, “What?”

My immediate response is to inform them that I am unable to eat wheat, and cannot have anything with it touch my plate, or be cross-contaminated by it, on any cooking surface. I have sent salads back when a stray crouton has been found next to my sliced tomatoes. I’ve been chuckled at by teenagers who are unaware of how serious my condition is, and whose immediate response to something they don’t know is confused giggling. I have left a dinner party starving because the only item that was gluten-free was the carrot sticks. Like I said, it just might be Karma, coming back to haunt me.

Who would have thought that one day I would be wishing for just one of those hamburger buns that made my stomach churn upon seeing it slathered with ketchup? I never dreamed the day would arrive when I would be a difficult diner out of necessity, rather than motivated by sheer dislikes. I am now the woman who has to ensure that her French fries are not cooked in the same oil as breaded products, a traveler who carries along her own toaster so that her frozen waffles can be toasted without intestine-sacrificing bread crumbs...a mom who tells her children that they should try each thing on their plate, just because they are able to.

What have I learned since being diagnosed with Celiac Disease? Primarily, that eating is just plain difficult, and there is absolutely no way to get around the added worry, cost, and inconvenience of gluten intolerance. Yes, it is easier and more reassuring to eat at home where I can control exactly what foods I am consuming, but is that always feasible? With children in after-school activities, there are nights when we are forced to eat on the run. When we travel there are times that we must eat at restaurants. Then there are the evenings when my husband and I are lucky enough to hire a babysitter and go out for a nice dinner and have our meal prepared and our dishes cleaned for us.

Before eating out, I go online and do research, to ensure that I am only eating gluten-free foods. We choose restaurants where there is a specified gluten-free menu, which oftentimes is limited to a very few number of selections. When cooking at home, I attempt to stick to the basics; consuming primarily meat, dairy, fruits and vegetables. I praise whole food markets and grocery chains who have embraced a greater understanding of food intolerance and allergies, and offer alternative ingredients for cooking. Likewise, I have also found that by shopping gluten-free, I can easily double our family’s grocery bill for the month.

Do I really believe that Karma has come back to haunt me? No, not really. With the number of young children diagnosed with Celiac Disease, combined with all of the non-picky eaters out there, I suppose it is just a case of genetics, along with bad luck. I do look forward to the day when there will be more stores carrying gluten-free choices. As awareness increases, so do the chances of eating at a restaurant, and having an unlimited amount of dishes to choose from, as well as staff trained on food intolerance issues. I long for a day when a bag of gluten-free flour does not cost four times that of its wheat counterpart. When that day arrives, I know, Karma or not, that we have made it.
As a Celiac Disease/Gluten Intolerance Nurse/Educator,  I help people regain their health by learning to follow a gluten-free diet.  In doing so over time I have become so familiar with every manifestation of Celiac Disease and gluten sensitivity that I can often recognize symptoms in people at a glance.   Perhaps you can too.  You know, the fair-skinned Celtic or blond Nordic types, with a butterfly-rash on their faces, or dermatitis on their hands, elbows, or legs, a general puffiness in their appearance.   Sometimes you hear them complain about general stomach discomfort or bloating, or itchy skin, or aching joints.  These are not people I know well, but general acquaintances, like the cashier at the market, or the child of a friend of a friend whose mother is an MD. 

I am a highly intuitive person, and I often used my intuitive abilities as a nurse on a busy surgical floor.  When my inner wisdom told me what was going on with a patient, I never failed to listen, and advocate for what I felt was in the patient's best interest.  But, I'm not in that environment anymore, and John Q. Public is not one of my patients.  Still, sometimes I feel as if I ought to say something.  Do you think it is ever appropriate to do so?  Gluten Intolerance and Celiac Disease are still not part of the common vocabulary.  The people I counsel and that take my cooking classes have all navigated long, circuitous paths to finally get a diagnosis.  How great it would be to help steer someone in the right direction, maybe skipping years of frustration and ill health!  But, I am by nature a reserved person, brought up to respect the privacy of others.  Is there a graceful way to intervene and provide information on gluten sensitivity to relative strangers?  That is the question I pose, and I look forward to reading any responses.

My last visit to the salon left my hair dresser quite concerned. While combing out my wet hair for cutting, she noticed that several small red bumps had just popped up on the back of my scalp. The rash-like bumps were not there before my shampoo, which to me made perfect sense: gluten in the shampoo. But to her, was a new concept: sensitivities to hair products.

I did a quick investigation by recapping the ingredients in the shampoo and conditioner, and my suspicions were confirmed: these products contained gluten. Since going gluten-free late last year, I did begin to find that gluten containing shampoos and hair products caused small breakouts or red bumps along my hairline. And as stated by Dr. Kenneth Fine of EnteroLab: “Gluten sensitivity is a systemic immune reaction to gluten anywhere in the body.” Which means that my scalp is just as likely to react to gluten as my tummy.

Fortunately, the bumps disappeared a few hours later, after I had re-washed my hair with gluten-free products. Though the whole incident has me wondering; will those with gluten sensitivities have to start approaching a salon or cosmetics counter just as we would a food menu. Fortunately, more restaurants than not these days seem aware of food allergies and sensitivities. But educating our hair stylists and make-up artists will be a whole other challenge.

I have actually been able to find some amazingly effective, pure and gluten-free topical products to help maintain a gluten-free lifestyle inside and out. I suppose that those with celiac disease and gluten sensitivities will spread the word on topical gluten one hair stylist and make-up artist at a time, just as the word was spread to one chef or waiter at a time. And yes, the next time I visit the salon, I just may bring my own shampoo.

Finding effective and 100% natural products that perform up to my standards was already a challenge, so naturally, finding those products that are also gluten-free was no easy task. In the midst of all my searching, I wondered if I was simply being silly.  Since going gluten-free in my diet, my skin had vastly improved, my rosacea was hardly noticeable, and the annoying acne that had begun to plague my back and chest a few years prior was gone.

I did notice that gluten-containing shampoos and conditioners tended to cause breakouts around my hairline, but still I thought that for gluten to adversely affect me, it probably had to be eaten and pass through my digestive tract.  In the many gluten-free books I read, I found mention of gluten in the diet causing acne, rosacea, rashes, eczema, dermatitis herpetiformis.

Chronic dermatitis characterized by eruption of itching papules, vesicles, and lesions resembling hives typically in clusters, which is caused by gluten sensitivity, dermatitis herpetiformis, psoriasis, but nothing spoke of the effect of topical products containing gluten.

So I consulted the renowned Dr. Fine, creator of EnteroLab.com, whose site has helped scores of patients in accurately diagnosing food sensitivities such as gluten, cow’s milk, eggs and dietary yeast intolerances.  Here is what he had to say:
Gluten sensitivity is a systemic immune reaction to gluten anywhere in the body, not just that entering the body via the gut. Therefore, topically applied lotions, creams, shampoos, etc. containing gluten would indeed provide a source of gluten to the body, and we therefore recommend all such products be discontinued for optimal health.

Psoriasis, eczema, and dermatitis herpetiformis are the most classically associated, but many non-specific skin symptoms appear as well.
Considering that up to 60% of a product applied to the skin can be absorbed into the bloodstream, applying a product that I know contains gluten is a risk I am simply not willing to take. 
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