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Guest Blogger: @VDemetros Shares Her Story

Posted by Ken Scheer on May 19, 2012 | 0 comments

Valerie Demetros

Today is day 18 of 31 straight blog posts celebrating celiac awareness month and I would like to introduce you to Valerie Demetros. I connected with her on Twitter and met her in real life on one of my gluten-free foodie tours. She’s a pleasure to know, a huge advocate for living a gluten-free lifestyle and has some interesting things to share.

1. When were you diagnosed with celiac disease or gluten intolerance?

I have not been diagnosed with celiac or gluten intolerance by a doctor. Wait, wait…before scrolling down to the comment section to tell me that I should…I know many people say that everyone must be properly diagnosed, but in my situation, I just didn’t see the need. Here’s why: My mother was told to stop eating all gluten products about 30 years ago. She had very few issues then, but the doctor said he knew what the problem was. He thought she had Celiac and wanted her to stop eating gluten.

Fast forward 20 years- She did not listen to the first doctor, did not get tested, and developed RA, Lupus, fibromyalgia and Sjogren’s syndrome, all of which can be the result of undiagnosed Celiac. She could have avoided so much pain and discomfort had she listened to the first doctor. She finally went off all gluten about 10 years ago and was able to reduce her medications significantly and is living a much healthier and happier life.

About 7 years ago I realized that many of the symptoms my mother had first displayed 30 years ago were now plaguing me. After doing research, I realized that there was a very good chance that I had the same problem. And after talking to my siblings I saw a pattern of medical issues including skin problems, gout, stomach issues, weight, fogginess, hair loss, etc. I decided to try an experiment and stop eating gluten, “just to see what happened.” In that first week off gluten, I couldn’t believe what a difference it made. And I have never looked back, never cheated since. I know I can be tested, and I know I would have to eat gluten every day for weeks in order to do that, all to be told not to eat gluten. So 7 years later I am gluten free and healthier for it.

2. What was your reaction?

I don’t miss gluten at all. Yes, I wanted a slice of pizza when I was in New York, and I missed having a piece of cake at my niece’s wedding. But, the bottom line is that I know how terrible it would make me feel and it becomes less appetizing. I know now that things can be made pretty close to the real thing, and that’s good enough for me. I’ve been a vegetarian for 26 years, so I was used to checking the ingredients of everything I ate to make sure there was no hidden chicken fat, beef, etc. So, that part of eating gluten free is not a bother for me. I’m just looking for something additional on the list. My options at restaurants are pretty small, and even smaller now that I can’t have the pasta, but I realize that what I ‘can’ eat is usually the healthiest thing on the menu.

3. What resources have helped you the most with embracing this lifestyle?

The Internet is a fabulous education resource. I found a wonderful vegetarian/gluten free Yahoo group when I first started out and they were a great deal of help. It was a small group then and recipes and support were wonderful. I also joined the Phoenix Celiac Yahoo group and that helps me keep up to date on what’s happening in the valley. There were just a few blogs at the time, The Gluten Free Goddess, etc. Now there are so many wonderful blogs with recipes and information, it’s a demonstration of the good that the Internet can do.

Since I usually cook whole foods most of the time anyway, it was just a matter of finding a substitute for pasta or bread that really mattered. I love getting a heads up from Facebook or an email list that a new GF bread or pasta is available. Luckily, there are more and more GF products out there, making it easier to survive. I can’t imagine having to eat gluten free 20 or 30 years ago. When I started eating vegetarian so long ago, it was a mystery to most people and a risk every time I ate something I didn’t cook myself. Things are so much better now, although not perfect.

4. How are you helping friends and others that are recently diagnosed?

I started a blog a few years ago, Gluten Free in AZ, in response to so many people asking for the recipes for food I would bring to potlucks or serve at my home. I have always loved to cook and I love experimenting with new foods. The blog had a great response and I added a Facebook page. I love being able to learn from the people on the page, as well as answer questions and help them out. It’s like a small community of friends with the same goal-to eat healthier and gluten free.

The biggest challenge, in my world at least, is eating out. When I buy something, at least there is an ingredient list and I am cooking it in my own home under my own watchful eye. When eating out, it is a crapshoot every time. I just never know who is educated and who is just pretending. I’ve been the victim of cross contamination too many times, all at restaurants. And the longer I am away from gluten, the worse the reaction is when I do ingest it, which I hear is quite normal.

I was so happy to find Ken’s blog and GF Foodie Tour. Anyone who takes the time to check out restaurants up front and educate the industry about GF food is a winner in my book.

Thanks for the opportunity

Find Valerie

Link to Twitter is @VDemetros

Link to the blog is www.glutenfreeinaz.blogspot.com

Link to facebook page is www.facebook.com/glutenfreeinaz

Let’s Discuss Gluten-Free and Dating

Posted by Ken Scheer on May 18, 2012 | 7 comments

Today is day 18 of 31 straight blog posts celebrating celiac awareness month. Over the past couple of months I’ve been reading so many blogs that have really enlightened me. The gluten-free community has been an amazing resource for recipes, tips, discussions and general everyday information. Some of the blogs that I’ve read have peaked my interest because the topic of dating has come up in a lot them lately.

For example, I was talking to several different friends over the past couple of months and I even mentioned it in a blog post a while back about the fears that people have about opening up about their food allergies. Let’s face it, we’re dealing with a serious issue living a gluten-free lifestyle and sometimes our choices can be limited with restaurant options, eating at other people’s homes and just the fear of sharing them with others. In my research I’ve found out that some will even hide that they have food allergies because they’re afraid it would be a deal breaker. I used to think this was crazy but I’ve recently started some research and it seems to be a common fear. Since this has raised my curiosity, I would love to have your feedback with the following questions….

1. Does sharing with others that you have food allergies frighten you?

2. Are you willing to eat at places that you know you will get sick at instead of sharing with your date that you’re limited on restaurant establishments?

3. Do you think it would be easier to date someone that has food allergies?

4. Do you feel that sharing with him/her would be a deal breaker?

For those of you that have Celiac Disease or high levels of gluten sensitivities have you ever thought about getting cross contaminated from kissing? Have you thought about the cross-contamination issues with eating at his/her house if the relationship develops?

Please feel free to comment below.

Stay Healthy!!

Resources, They Are Closer Than You Think

Posted by Ken Scheer on May 17, 2012 | 2 comments

Uncle Joel and I

Today is day 17 of 31 straight blog posts celebrating Celiac Awareness Month. I would like to talk to you about the importance of resources. When anyone is first diagnosed with celiac disease or gluten-sensitivity it can be extremely challenging. The thought alone of having to eliminate foods, clean out pantries and buying new utensils and cookware is overwhelming but where do you go from here? Here are a few simple suggestions:

1. Go online and research celiac disease and gluten-sensitivity

2. Connect with the National Foundation for Celiac Awareness (NFCA)

3. Ask for help from friends that might know others with CD or gluten-sensitivity

4. If you’re on Twitter connect with others using the following hashtags:

a. #glutenfree

b. #gf

c. #gfree

d. #celiac

e. #celiacawareness

f. #foodallergies

5. Seek out bloggers that are discussing current issues in the industry

6. Search gluten-free on Facebook and like their pages so you can engage with the brands

7. On the right side of my website I have a list of gluten-free resources that can help you with recipes, new ideas and potential connections.

There is so much information out there now and it’s literally at your fingertips. I remember when I was diagnosed 17 years ago there wasn’t anything so I had to rely on my uncle who also has celiac disease. His name is Joel and he’s been living with celiac disease far longer than I have. I remember having a phone conversation with him about what I was experiencing. He told me he would support me in anyway that he could but the options were minimal. He mentioned a couple of breads that were available but they tasted like rocks. Everything had to be without the bun or all pastas had to be taken out of the equation.

He constantly told me that it was going to be difficult but he would help in anyway he could. Online resources that are now available are phenomenal and you can learn so much with today’s technology but don’t forget to ask those that are close to you. Sometimes reaching out to friends and family even if they don’t have CD or gluten-sensitivity can make all the difference in the world. Remember everybody knows somebody so you never know who you will meet along the way that could change your life and perspective immensely.

Love Spending Time With Him In NYC

Stay Healthy!!

You Have A Voice Help #DitchAmber

Posted by Ken Scheer on May 16, 2012 | 0 comments

Today is day 16 of 31 straight blog posts celebrating Celiac Awareness Month! I’m asking for your help because there is already enough confusion dealing with accepting gluten allergies but we need to make it as simple as possible. With all the discussion around Domino’s gluten-free pizza (or lack there of) we as a community have a chance to have our voices heard.

I’m a big supporter of The National Foundation of Celiac Awareness (NFCA) as they do a lot to raise awareness for the celiac and gluten sensitivity communities. But their Green vs. Amber Designations are confusing and after you read this post, I hope you sign the petition below to help strike out the confusing Amber Designation.

Green Designation – this means all systems go, they have approved the restaurant for cross-contamination issues, ingredient verification and comprehensive training.

Amber Designation – this means there are issues with kitchen practices, basic training and ingredient verification. Since it also has the word gluten-free in it, everyone thinks it’s safe and this is where the confusion starts.

I was recently on Jules Gluten Free Blog Talk Radio Show where she interviewed Alice Bast from the NFCA. During the show Alice says, “they would prefer not to have the amber designation” and urges the community to reach out . If you really want to learn more about the NFCA, I would highly recommend listening to the show.

In my honest opinion the Amber Designation needs to go because I get so many texts, emails and questions on my Facebook about what is safe to eat? Well, let’s take the speculation out! I want to urge all of you to help get rid of the confusing Amber Designation because for food to be 100% safe to buy or eat in a restaurant there shouldn’t be any questions or potential for confusion. The Green Designation is the only way to go, it has the highest standards and with our health in question it’s the only way to go.

So help strike out the Amber Designation by signing this PETITION which takes all of a minute.

Thanks for your support

Stay Healthy!!

A Milestone, 166 Days and Counting

Posted by Ken Scheer on May 14, 2012 | 8 comments

Today is day 15 of 31 straight blog posts celebrating Celiac Awareness Month and I’m pretty excited about what today is. Blogging everyday has been an interesting experience and I’ve enjoyed sharing different tips, experiences as well as sharing other’s stories. This community is strong and I feel we’re raising awareness everyday about a serious disease. So for now we’re half way through another month so let’s get this started.

I remember what it was like 17 years ago when I got very sick and was told I was allergic to gluten, dairy and soy. My feelings were crushed, I thought my life was going to end because I was in college and all I ate was food with gluten in it. Not to mention, there were no resources, blogs, social media, Internet information or support to reach out for. My primary focus was eating the cheapest food I could and drinking beer. We were all there, it was college and eating clean, expensive food wasn’t an option. I would honestly go back to that day compared to what I found out last November.

Throughout the month of October 2012 I was so sick and a lot of the symptoms were similar to those 17 years but much worse. My body started to reject everything I ate which lead to severe dehydration, feeling of low self worth, depression, anxiety and days where I couldn’t even get out of bed. My energy was low and honestly life didn’t really matter to me. After suffering for a month I reached out to a dear friend and realized that I couldn’t do this alone. I knew something was wrong but the mind is a very powerful thing so I asked for help. I saw an allergist, an internist, a gastro-intestinal doctor and a naturopath. Let me tell you, talk about contradictory information…..it was a headache. But the best option was the IgG Food Panel blood analysis, which tested me for 132 foods and 22 spices. The results were astounding.

Food Parameter Summary:

Highly Allergic – MUST AVOID

Buttermilk, Casein, Cheese, American, Cottage Cheese, Egg Whites, Goat’s Milk, Mozzarella Cheese, Swiss Cheese and Yogurt.

Moderately Allergic – COULD MAYBE TOLERATE EATING ONCE A WEEK

Asparagus, Barley, Kidney Bean, Brewer’s Yeast, Broccoli, Cashew Nut, Celery Stalk, Chinese Cabbage, Cilantro, Corn, Cow’s Milk, Horseradish, Kale, Mustard Seed, Onion, Orange, Parsley, Green Pea, Pistachio, Plum, White Potato, Pumpkin Seed, Soybean, Whey, and White Mushroom.

Low Allergies – DON’T BE SHOCKED THAT GLUTEN SHOWS UP HERE BECAUSE I NEVER EAT IT THAT’S WHY

Anise, Apple, Apricot, Avocado, Baker’s Yeast, Bay Leaf, Green Bean, Beef (should only eat grass fed), Bell Pepper, Cantaloupe, Caraway, Carrot, Chicken, Chili Pepper, Cinnamon, Cocoa Bean, Codfish, Coriander, Curry, Eggplant, Ginger, Gluten, Grapefruit, Honey, Iceberg Lettuce, Kiwi, Lamb, Lemon Balm, Lemon, Lobster, Mango, Millet, Oats, Oregano, Papaya, Paprika, Peach, Peanut, Pear, Black Pepper, Cayenne Pepper, Peppermint, Pineapple, Quinoa, Raspberry, Red Beet, Rice, Rosemary, Rye, Saffron, Sage, Salmon, Sesame Seed, Shrimp, Spinach, Strawberry, Tofu, Tomato, Turkey, Turmeric, Vanilla, Walnut, Watermelon, Wheat, Wild Rice and Zucchini.

Phewwwwwww, I’m done that’s not so bad right? I met with Kirstin Carey who owns my favorite local restaurant Nourish123, which is 100% gluten-free. They don’t even introduce gluten into the restaurant and she sat down with me to help encourage me on what was to become a 180-day elimination diet. I reached out to her because she had similar symptoms a while back and I new she could help. She put me on a very aggressive celiac gut-healing program, which included teas, probiotics and various other pills to help repair my gut. It was an aggressive program designed by her head chef who’s an herbalist. She did this because according to the results my intestinal barrier assessment was 908 IgG and anything above 650 was high. I had leaky gut and all the foods I ate went directly into my blood stream, which lead to malnourishment and subsequent other issues which I discussed before. She promised me this was the only way to do it and after her 180 days she got re-tested and was able to reintroduce certain foods back into her system.

Well as of today I’m 166 days into this and symptom free. I have two weeks left and have never felt better emotionally or physically. I’ve found plenty of foods that I can eat that are cleaner and healthier for me and my symptoms are gone. I will say that some days my energy is still lacking but nothing like what I experienced before. I find it ironic that I will end my 180 days right around the time when celiac awareness month is over but my awareness will always be high. I’m not sure if I will get re-tested or wait a little longer. Honestly, out of all of the highly allergic and moderately allergic foods that I miss the most is eggs. Cooking and eating without eggs has been the biggest challenge because so many gluten-free foods have eggs in them. So at this point, I’m not sure what I will do in two weeks other than celebrating a milestone but I can tell you that this process has been life changing and I’m thankful for all the support I received from family and friends.

Stay Healthy!!

Guest Blogger: @NourishedHealth Shares Her Powerful Story

Posted by Ken Scheer on May 14, 2012 | 21 comments

Katie Bauer

Today is day 14 of 31 straight blog posts celebrating Celiac Awareness Month! I would like to introduce you to Katie Bauer who I met on Twitter over a year ago. She’s extremely supportive and has quite a powerful story that she’s sharing with you. I hope you enjoy her story and can connect with her because she has a lot of insight and always has a positive outlook on life!

Jolted out of my slumber. Sitting straight up I look around. I start to panic. There is a man there watching me sleep. I yell at him and try to make myself feel big. I clumsily clamor for the knife I know I have hidden under my mattress somewhere. Somewhere… Where is it? I feel like I’m going to hyperventilate. What is he doing in my room? Why is he just sitting there? Why doesn’t he say anything? Questions…

I start to wake up more. I slow my breathing. I ground myself. I concentrate on the sound of my heartbeat that is pounding in my chest. It is so loud, I wonder if he can hear it. I take a deep breath. I stand up. I walk past the man, watching him as I walk past. He doesn’t watch me go. I ritualistically flip on the light as I leave the room and head for the bathroom. I come back and he is gone. I sit on my bed, clutching my knees to my chest. Rocking myself calm. Blurry eyes, moistened from tears of fear. Rocking.

“It was just a night terror. It wasn’t real.” I repeat to myself over and over. I climb back into my covers and eventually calm myself enough to sleep.

My whole life, I woke in the middle of the night and saw things as clear as awake that were not there. It is common for children to be scared of the “boogeyman” that hides in the closet or under the bed so it was not uncommon that I too jumped over my bed to avoid what was under it, that my closet doors had to be closed for me to fall asleep or that I slept with the blankets over my head so that I couldn’t see them—the monsters. The difference was that I actually saw them—my imaginary fears looked as real as my parents. But to everyone else, I was a normal child with normal fears.

As an adult, for a couple years I even became used to seeing “people” in my room—sort-of. I would wake with the normal jolt of panic, watch the person for a minute and then lazily fall back asleep. I slept with a knife and a flashlight, sometimes under the mattress, sometimes under my pillow and sometimes clutched in my hand because of these almost nightly encounters and my fear that someday it would be a real person that I would mistake for a “night terror”.

Had I ever been taken to a psychiatrist, I would have been labeled borderline schizophrenic, maybe hospitalized and definitely drugged. I never was taken to a doctor for it and as I had grown up with this condition I called “night terrors” I had grown somewhat accustomed to it and had learned to hide this “condition” from family, friends and lovers.

These “night terrors” persisted through grad school, through clinical herbalism school, through natural foods culinary school and into the beginning of holistic nutrition school. They were just a part of who I was—I didn’t consider them a health concern. Through all of my training and education I adopted a healthier lifestyle, was physically active and ate healthier. I found it fun and challenging to cook gluten free and vegan after culinary school, so I only actively consumed gluten when eating out. Even though my “night terrors” persisted, they were shorter in duration and what I saw would dissolve usually within a minute or so of shining my flashlight on it. I didn’t even have them every night anymore.

As part of the nutrition program I was in, I succumbed to doing a gluten elimination diet. I thought nothing of it, that it would have no effect, because I had no digestion problems and I consumed very little gluten. After a couple months of the elimination diet, I thought nothing had really changed. I very strongly remember that it was my favorite month of the year… February (in 2007) meant it was Stout Month at the Mountain Sun (a local brewery in Boulder). And so, happily that I had “passed” my elimination diet, I ordered a chocolate cherry stout and a grilled cheese, avocado and tomato sandwich on rye bread. I had no idea that, that meal would be my last drink of a good stout beer or that I would never taste rye again.

That night I had night terror after night terror after night terror. They persisted all night and even included tactile sensations. I’ve never been so scared in my life and have never had such a horrific experience as that night—too horrific of a memory for me to even share here.

It was gluten. Night terrors (aka schizophrenic hallucinations) were my symptom, not diarrhea, constipation, stomach cramps or bloating. For me, it was purely neurological. Well, that and later I discovered that I had developed Hashimoto’s thyroid antibodies (which are a result of your immune system being up-regulated and your system being inflamed, almost always as a result of the body attacking the thyroid, mistaking it for gluten). I also now notice brain fog when I experience gluten cross-contamination. Although recognizing gluten intolerance as the cause of my neurological symptoms was a strange realization, it was a happy one. Finally, I would have ongoing peaceful sleep lasting the entire night. Finally my adrenals would be given a break.

I never tested for celiac disease; I was unwilling to add gluten back into my diet for an extensive amount of time to test when the tests are so prone to false-negatives. Knowing whether I have celiac disease or not is not important to me. I am gluten intolerant. That’s all I need to know. I’ve been gluten intolerant my entire life…not schizophrenic and not able to see ghosts. I can’t have any amount of gluten, none. I was lucky because I had already learned to cook gluten free through culinary school and can order my own blood tests to confirm nutrient levels, antibody levels and such. Now, my goal is to spread that support to those that don’t have those options.

As a Nutrition Therapist and Clinical Herbalist, I test almost every client for celiac disease and non-celiac gluten intolerance (and often for other food intolerances too). I don’t have the blindfolds on that many in the medical profession do that pigeon hole their patients into an expectation of specific symptoms for a specific condition or that non-celiac gluten intolerance isn’t as dangerous as celiac disease. Through my personal experiences and those of my clients, I help educate people that celiac disease is just another symptom of gluten intolerance and that not having celiac disease is not a free pass to eat gluten if you are symptomatic. Whether ingesting gluten causes the body to attack the digestive system (as in celiac disease), the joints (as in autoimmune arthritis), the thyroid (as in Hashimoto’s and in Grave’s), the brain (as in autoimmune Alzheimer’s) or whether gluten is creating an inflammatory state with an upregulated immune system that taxes the adrenals and risks the development of an autoimmune disease or distracts the body from killing mutated cells in the body (as in cancer), causes anemia, osteoporosis or one of the other 200 or so different symptoms associated with BOTH celiac disease and non-celiac gluten intolerance, it doesn’t matter. Celiac disease is a symptom of gluten intolerance and it is awful, but people with non-celiac gluten intolerance can have to be just as gluten vigilant. We are all in this together.

As a healing foods chef, I only teach gluten free cooking classes (and usually grain free classes), because whether someone is gluten intolerant or not, we can all thrive more if we eat less grains and more nutrient-dense non-processed foods. The reason gluten intolerance is so prevalent is because gluten is not digestible, but is in everything and in this modern age when leaky gut syndrome is so prevalent, it is no surprise that gluten intolerance is so widespread. Those that are not gluten intolerant would do well to not “push their luck” and be mindful of their consumption of grains.

When I have any amount of cross-contamination, my sleep becomes disrupted, I have a very hard time falling asleep and the night terrors return. The intensity of the night terror corresponds with the level of cross-contamination I receive. Three nights ago I had a “night terror,” I saw a man watching me from the bathroom in my room. I sat up and watched him and as I watched him, strangely calmly, I thought through about what I had eaten that day, wracking my mind for where the cross-contamination in my day could have come from. He backed away. I went back to sleep. The next morning, I was in the bathroom and noticed that the screen was completely off the window. Possibly, a few nights ago, my fear came true and someone broke into my house but I thought it was only a night terror. I’ll never know. Vigilance.

Katie Bauer, MA, CNE, CH, Holistic Nutrition Therapist, Clinical Herbalist and Healing Foods Chef is a nationally recognized speaker and coach for more than a decade. She is the Director of Nourished Health Center, an integrative health center in Denver Colorado; the owner of Nourished Health Cooking School, an allergen-free cooking school in Denver; and is the owner of Nourished Health Consulting, providing health coaching and nutrition therapy via Skype or in person specializing in digestive health, food intolerances and fatigue.

Connect with Katie

Katie Bauer can be reached via:

Nourished Health Center

1740 Marion St., Denver CO 80218

Facebook: Nourished Health Center

Twitter: @nourishdhealth

Blog: Nourished Health

Websites: Nourished Health Center, Nourished Health Cooking School, Nourished Health Consulting

Stay Healthy!!

A Sunday Cider

Posted by Ken Scheer on May 13, 2012 | 0 comments

Strongbow

Today is day 13 of 31 straight blog posts celebrating Celiac Awareness Month! I’m going to be honest, I’ve really enjoyed blogging everyday along with the interactions but I’m not as huge of a fan of it on the weekends so since it’s Sunday we all deserve a break right? So, sit back and enjoy this…..

The other day I walked into The Skeptical Chymist which is a Irish Pub located in North Scottsdale and asked for my favorite gluten-free cider, Strongbow! The bartender said to me, “do you mind it out of the can?” I told him that’s the way I prefer it. Then he filled up a glass of ice and said how about having it on ice? I looked at him and said is that the appropriate way to do it? He said, “it’s how the proper English do it and it’s really good.” So who am I to refuse…..he was right, the Strongbow on ice was fantastic.