I had the honor and pleasure of being featured in a NABBW (National Association of Baby Boomer Women) teleseminar on celiac disease with Anne Holmes, the “Boomer-in-Chief” of the NABBW, National Association of Baby Boomer Women.
Follow the link below to have a listen or download the teleseminar as an MP3:
http://attendthisevent.com/?eventid=14823489
Enjoy!
Tina Turbin
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This video discusses everything from diagnosis, impact on adults and children, and helpful diet tips.
First of all thank you to Prometheus Labs for their help in funding this video and Warren Medical Center for their expertise. This video will help us understand celiac disease and give you a heck of a lot of informative information in an easy to understand manner: ( Defn of a term:Prometheus is a specialty pharmaceutical company committed to improving the lives of patients.)
Experts from UCSD’s Celiac Center discuss everything from diagnosis, impact on adults and children, and helpful diet tips.
Experts in this incredible video include: Martin Kagnoff MD, Kimberly Newton MD, and Susan Algert PhD, RD.
Please enjoy and I welcome your feedback.
Tina Turbin
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Cooking without gluten and dairy and all the other most common allergens can be a daunting experience, especially when dealing with an allergic child. The Super Allergy Girl Cookbook is an empowering book full of answers to your child’s or any allergic person’s needs, including the celiac’s.
This cookbook contains 132 pages of Lisa’s discoveries over the many years she spent raising three allergic children as well as in her personal experience as a child with an anaphylactic allergy to nuts of any kind as well as to coconut. With her daughter having well over ten food allergies, Lisa was forced to create recipes to accommodate a child’s palate with creativity, texture, and appeal. The recipes in this book are the successful results of many cooking attempts and errors. Lisa generously shares her recipes in this book and continues to help many chefs, celiac groups, and people learn to cook allergic-free meals.
There’s much more this book offers. With so many years of involvement in research in this area, Lisa shares near 150 pages of advice, the history of allergies, various well-known “allergic diet” options, food family charts, symptoms, effects of additives and preservatives, and much more.
There are many celiacs with additional food allergies, and still having symptoms as a result. With rice, tapioca, and potato being a staple in our gluten-free grain mix, Lisa points out that day after day consumption of a food can easily initiate the food allergy to the very food we depend on. She offers simple and logical solutions to avoiding allergies, in addition to handling them, in this book.
Leaving no stone unturned, Lisa provides additional recipes for play dough, finger paints, clay, stickers, homemade household cleaners, and laundry detergent.
This book is a book I highly recommend anyone read, allergy-ridden or not. Armed with the information in this book, anyone lacking the necessary information to help one’s child or oneself, can avoid allergy troubles. Lisa offers a lot of free helpful advice for consumers with health food issues on the website, www.thesuperallergycookbook.com.
HIGHLY recommended!
Tina Turbin
www.glutenfreehelp.info
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The Conference will provide opportunities for people to share and learn more about celiac disease and the gluten free lifestyle from experts. You will hear, see taste and experience quite a lot. You will not walk away displeased.
Over 50 vendors will showcase their gluten-free foods.
Again, Celiac Disease expert Peter H.R. Green, MD is flying in from New York and gluten-free diet expert Shelley Case, RD will be speaking among others. I am looking forward to seeing them both and many others. Read about her fabulous book, the Comprehensive resource Guide here.
Tina Turbin
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That’s right! It’s that time of year again…the Gluten Free Cooking Expo and Vendor Fair is coming! Jen Cafferty is at it again! Attracting participants from all around the country and Canada, this great event teaches gluten-free dieters how to make delicious and healthy GF foods and more!
April 17th and 18th – The Wyndham Hotel, Lisle, Illinois
Some of the events to look forward are two days of GF cooking demonstrations by acclaimed authors, chefs, and nutritionists; printed recipes for you to refer; and learning how to prepare each dish (with taste-testing, too!). Admission to the vendor fair is included in your Expo registration, and Gourmet Gluten Free lunch is provided as well as a gift bag of gluten-free goodies.
To find out more and sign up, check out the link below! For questions, contact Jen Cafferty at jen@gfreelife.com or 847-217-1317. Some tables are still available for vendors if you’d like to sample or sell your products. http://gfreelife.com
Tina Turbin
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Viitals Bakery
Ivan Nikolov- owner Viitals
Tampa, Fla. October 7, 2009 Viitals owner Ivan Nikolov announced the opening of his new retail storefront, which offers gluten-free healthy choices for those trying to live a healthier lifestyle. The bakery had been strictly wholesale until its grand opening.
This bakery offers gluten-free, hypoallergenic, high in protein, organic ingredients snacks, such as muffins, crackers, cake-bars, loafs, and more.
The Bulgarian bodybuilder, Ivan and NPC Tampa Bay Classic overall winner and his wife started this bakery to service the needs of the growing community with allergies, celiacs and the general public looking for higher protein and nutritious snacks.
The opening of his new storefront, Ivan said, now makes him not only a wholesaler, but also a retail gluten-free cafe.
Ivan states that his products are made in a dedicated gluten-free facility, and they are hypoallergenic, vegetarian or completely vegan, all-natural with many ingredients that are organic. He balances his products by adding protein, making them a complete meal.
Ivan said customers will be served gluten-free bread, cookies, brownies, cakes, VIITALS smoothies with organic fruit and protein, gluten-free sandwiches and gluten-free soups.
For more information about VIITALS Bakery visit:http://www.viitals.com
And their awesome menu they updated this month: http://www.viitals.com/VIITALS-Menu.pdf
Tina Turbin
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As you know, treating celiac disease with a gluten-free diet can be quite a challenge, as even just the smallest exposure to gluten can cause damage to the small intestine and make us celiac quite sick.
With this in mind, Dr. Ali Keshavarzian, vice chairman of medicine and gastroenterologist at Rush University Medical Center, has been looking into the effectiveness of mind/body techniques in the treatment of celiac disease.
Celiac patients who are enrolled into the celiac disease and mind/body study at Rush will be randomly assigned to two course assignments for a period of eight weeks. If you’d like to find out more information about the study or to enroll, you can contact Dr. Sunana Sohi at 312-942-1551 or Sunana_Sohi@rush.edu.
Tina Turbin
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Living Fullfilled: Adapting to Life Gluten-Free Name: Maureen L. Ellis, Ph.D.
I am originating and authorizing Tina Turbin to share this story with you.
Maureen has generously offered to share her continued story as time progresses. Check back for Part 3 or sign up for the RSS feed on the right hand column.(this means you will get updates sent to you in case you are not familiar with this feature) Read Part 1
“Here is my first tip to anyone going through a difficult diagnosis: go with your instincts and find a doctor who you trust, who is kind, compassionate and willing to listen to you as a person. Switching doctors saved my life – I have no doubt in my mind.”
Everyone has a story to tell and my journey toward living a healthy, gluten-free lifestyle is a unique story, one of which I hope will give other people hope for living a “ full” filled life after years of frustrations, tests, diagnosis and acceptance. From my personal experience, I can understand why someone would not feel fulfilled and would almost feel deprived being thrown into a situation where they can no longer eat the foods they have grown to love and share with their family and friends, but when the order was given for me to go gluten free, I was willing to do anything to feel better and bring a sense of normalcy and peace back into my life and that of my family. My name is Dr. Maureen Ellis, and I have Systemic Lupus Erythemtosus (SLE), which is a chronic autoimmune connective tissue disease that can affect any part of the body where the immune system attacks the body’s cells and tissue, resulting in inflammation and tissue damage. Lupus has affected my central nervous system, gastrointestinal tract, biliary tract and pancreas. Please join me in my adaptation to a “full” filling gluten-free lifestyle.
After my children were born I decided to get my master’s degree. I fell in love with higher education and decided to pursue my Ph.D. I successfully defended my dissertation the month before I turned 41 and started my first tenure-track position two months later at a research institution. I felt like everything in my life had fallen into place and it was finally time to enjoy the fruits of my labor. We had a beautiful home, two great kids, my husband loved his job and we were starting to make our new environment feel like home. In April 2005, I went in for my annual exam and my doctor found a lump in my left breast. Without delay I had numerous tests and ended up in a surgeon’s office who immediately scheduled me for a lumpectomy to remove the tumor. He was 95% sure that my lump was cancerous. Believe it or not, the tumor was benign, but something went terribly wrong during surgery; it appeared as if my computer had decided not to reboot because when I woke up on May 7, 2005, nothing in my life would ever be the same. Now that I have been fully diagnosed, the doctors believe that Lupus had been a sleeping giant waiting to be woken up and we have been able to go through my childhood and realize that the symptoms of gluten intolerance and GI disorders have been a part of my life since I was a small child.
Following the lumpectomy, I couldn’t keep food down, had constant diarrhea and eventually became dehydrated so I was admitted back into the hospital. They hooked me up to an IV and some good drugs then sent me home to recuperate, only to find myself readmitted twice in the next couple of weeks. The doctors in the hospital said it was time to get to a specialist that there was definitely something strange going on inside. One doctor mentioned Crones Disease and Colitis so next step was making an appointment with a gastroenterologist. I went in expecting to get help and start feeling better soon as I was teaching summer school and it was tough when I didn’t have any energy. Right away he was positive it was Crones Disease, which is an inflammatory bowel disease or Celiac Sprue, which is an autoimmune disorder of the small intestine causing a mal-absorption syndrome from the ingestion of gluten-containing foods . I had the usual battery of tests like a sigmoidoscopy, upper GI, several blood and stool tests, all of which came back negative, except I had exceptionally fast transit and was trans-absorbing nutrients, which meant that my food was moving through my GI tract so fast that I wasn’t able to absorb any of the nutrients so I was suffering from malnutrition. Since I was continuing to lose weight from the chronic diarrhea and I was losing my appetite for food, I started pushing the doctor for answers, especially since we were already into early August and I wanted to be well before the new school year started. Looking back now, that was such an unrealistic goal as it took four years to get a complete diagnosis. In the meantime, the doctor suggested we start eliminating lactose to see if that helped and sadly enough, getting rid of my morning latte did help some with the gas and bloating but diarrhea was still running my life. I knew that as soon as I ate, within 20 minutes I would head straight to the bathroom with severe cramping and watery diarrhea. My life was literally revolving around what I ate, when I ate and then my distance to a bathroom. I started to feel isolated and was afraid to go out in public for fear there wouldn’t be a bathroom close enough when the trots came on. I had severe debilitating pain in my upper-right quadrant to the point I felt like I was being stabbed by a knife. One night I lay in bed planning my funeral because I was afraid to wake my husband and tell him I thought I was dying.
About a week before the fall semester began I prepared and had my colonoscopy and an endoscopy. And yes its true, the prep is far worse than the actual procedure because I remember nothing. The problem was that I never recovered and started becoming very, very sick. The results were basically inconclusive for everything. He took several biopsies and said he could rule out Crones for now, but it could be Celiac, but for now he would go with Irritable Bowel Syndrome (IBS). When I woke up, I about went insane because I knew in my heart of hearts this was something more serious than IBS. This was not stress related or because of something I ate, but something had gone terribly wrong with that surgery and I needed someone who would get to the bottom of it. I felt very alone and scared. Unfortunately at this point I didn’t have any energy to fight this doctor. By the end of the weekend, I was too weak to get out of bed so my husband called the doctor’s office and thankfully, he was on vacation. This gave my husband the idea to call our former landlord who was a Gastroenterologist. He explained what was going on and said, “Maureen is dying can you do anything for her”. My new doctor rode in on his white horse with his white hat on and very gently took over my case. Here is my first tip to anyone going through a difficult diagnosis: go with your instincts and find a doctor who you trust, who is kind, compassionate and willing to listen to you as a person. Switching doctors saved my life – I have no doubt in my mind.
My new doctor put me on some meds to get me through the weekend and I went in to see him the next Monday. After looking at my medical history and test results, he said, I think I know what’s wrong with you but you’re going to have to trust me on this. And this is
the moment when my journey changed. The first step was to start pain killers for the abdominal pain, sleeping pills so I could get a decent night’s sleep because as he said, you can fight the pain when you are rested, and we started in with a new battery of tests to determine gallbladder function. After a trip to the ER and several tests later, in October my gallbladder became infected and inflamed, which had to be removed. After surgery I didn’t seem to improve and continued to decline in health. By this time my diet consisted of saltine crackers, soup and oatmeal. The doctor suspected I had developed Sphincter of Oddi Dysfunction, which affects the valves in the biliary tract. The sphincter of oddi is a muscular valve that controls the flow of bile and pancreatic juice through the bile tract (area from the liver, gallbladder and pancreas to the stomach) and flows into the first part of the small intestine. Sphincter of Oddi Dysfunction (SOD) happens when that valve doesn’t relax and causes severe spasms. This causes the bile juices to back up and causes episodes of severe abdominal pain.
Typically, doctors wait 90 days after gallbladder removal to perform an ERCP, which is a type of endoscopy, to measure sphincter pressure. Unfortunately, my body didn’t wait that long and the sphincter valve ruptured on its own sending me to the ER in excruciating pain. The doctor explained that that valve is held together with what appears to be rubber bands and I was feeling each rubber band snapping free. The doctor performed emergency surgery to repair the sphincter valve and pancreatic valve. Recovery went very slowly from the SOD surgery and the upper-right quadrant pain was still present, although not as bad as it was before the surgery. My gastrointestinal symptoms continued on through the spring and in early summer of 2006, my doctor repeated the ERCP to clean out scar tissue he thought was causing the continued pain. Since my GI symptoms failed to improve, he decided to do the capsule endoscopy to test for celiac damage. This procedure required me to swallow what looked like a capsule. There was a tiny camera implanted in the capsule so when I digested it, it took pictures of my digestive system. I also wore a contraption all day that logged the pictures being taken inside of me. I am a technology geek and I have to admit, I thought it was pretty high-tech and very interesting. Although the blood tests did not come back positive, the capsule endoscopy did indicate that I probably did have Celiac Disease or at least I had intestinal damage to support that diagnosis so he determined the best course of action would be to remove all gluten from my diet. Through elimination, we also determined it was best to eliminate lactose and egg yolks as well. Following the gallbladder surgery and Sphincter of Oddi surgery I have not been able to process much fat and by this time I had pretty much eliminated most meat and nuts because they caused too much pain and distress and my body just refused to digest them. With my new diet in hand; a trip or two to a registered dietician, in August 2006 I began my journey into living a fulfilled life without gluten, lactose, egg yolks, raw fruits and vegetables along with a low-fat diet.
To be continued….
Dr. Maureen Ellis, Ph.D.
Business and Information Technologies Education Department
East Carolina University
Thank you Mareen. Maureen has generously offered to share her continued story as time progresses. Check back for Part 2 or sign up for the RSS feed on the right hand column.(this means you will get updates sent to you in case you are not familiar with this feature) Read Part 1
Tina Turbin
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There are many ways we with celiac or gluten intolerance can help others. One way is to head a group. Jane is an exceptional woman with her story and running a group for many years now. Here is her story and a link to a news article about her and her experiences. Really worth reading. Janet has recently attended my GF taste testing party to assist in my Reviews. She is FUN!
Janet Heitler joined a pre-existing group (Tampa Bay celiac Support Group) in 1995 two weeks after she was discharged from the hospital with her celiac diagnosis. She had a long time of misdiagnosis and no diagnosis. Things did not look good up to that final day of being correctly diagnosed.
Two women initially founded the group and Janet ended up in the group after they resigned from being Co-chairs. A husband and wife team took it over and I wanted to contribute because everyone was so wonderful – so Janet said she would be the Treasurer, easy to do. Everything was fine until two months into their “reign” I got a call that they were moving to Nevada. Bam – she got in 1998 and I has had it ever since.
The meeting calendar was all over the chart and the first thing she did was announce to meet on the second Saturday of every other month – Feb/Apr/Jun/Aug/Oct and Dec. We meet at 1 – 3 PM at the Jimmy Keel Library on Bears Avenue in Tampa, unless a luncheon is arranged.
They have done 2 GF Beer and Pizza Parties, when Pei Wei first opened they had a luncheon, and a luncheon at Trang’s Viet-Nam Cuisine — 90% of the menu is GF – it is not a GF restaurant it just works out like that, she says.
There are 200 people on her mailing list, but the most she has ever had at meeting (Beer/Pizza luncheon) was 70 people yet normally there are 20-25 people attending.
According to Janet, a lot of times newbie’s come once and think they know everything there is then fall aside. Then she gets a call and they talk as they are in trouble. She reminds them of the meetings and she tells them the new things that are out there and having the emails has helped people to reconnect and stay connected.
Janet’s email – jchtbc42@tampabay.rr.com
Janet’s latest article: http://www2.newsadvance.com/lna/lifestyles/food_cooking/article/sifting_through_the_options/4033/
Thank you Janet! Tina Turbin
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ALLEGAN – Perrigo Co.’sannouncement Monday it will be the first manufacturer in the United States to label more than 200 of its over-the-counter drugs gluten free is drawing mixed reactions.
The problem is the Food and Drug Administration has not come out with a standard for what is considered gluten free, said Elaine Monarch, executive director of the Celiac Disease Foundation in Studio City, Calif.
“It’s not as cut and dry as people think it is,” she said, adding people can have different tolerances to even a small amount of gluten.
But two local allergists call the announcement a step in the right direction.
“When a patient is really looking at everything they are consuming, it’s nice to know that a product doesn’t have wheat in it,” said Dr. James Bishop, who treats respiratory and food allergies in his Holland practice. “I really applaud them for increasing awareness.
“You can argue both sides of it, but what harm is it in labeling it?”
Perrigo says its program is based on gluten thresholds of less than 20 parts per million, the same standard under consideration by the FDA.
The new initiative will include all of Perrigo’s best-selling categories, such as pain relievers, cold and allergy, and antacids. The company already has more than 200 dietary supplements that are part of a similar labeling program.
It’s not the medicine that’s the concern, but the filler, capsule or coating that might contain the gluten, said Dr. Sara Uekert, of Grand Rapids Allergy PC.
“The drawback is that until there is an awareness of what is an acceptable threshold, it’s a moot point,” Uekert said. “Just because it’s on the label doesn’t mean it might not be problematic for more sensitive individuals with lower thresholds.
“It’s Perrigo putting its own limits, but at least it is a step in the right direction.”
Perrigo spent almost three years working through its manufacturing process and supply chains to establish that the products met the new standard.
“It’s an assurance program,” said company spokesman Art Shannon.
Perrigo initiated the labeling program in response to an increasing market demand for gluten-free products. Consumer questions about the gluten content of Perrigo-manufactured products have recently ranked among the company’s top call center inquiries.
Perrigo supplies products carried by many retailers as store brands — although its name is not on the packaging.
“We are excited about the program,” Shannon said. “We believe we are the first manufacturer in the U.S. to do this.”
Gluten is a protein found in wheat, barley and rye. In this country, an estimated one in seven people have a gluten intolerance, and 3 million suffer from celiac disease. Those with the disease cannot eat gluten because it creates an immune-mediated toxic reaction that damages the small intestine and does not allow food to be properly absorbed, according to the foundation’s Web site.
Thank you Shandra. You can e mail Shandra at: smartinez@grpress.com
Tina Turbin
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It's ALL gluten-free!
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Tina Turbin became extremely interested and involved in the subjects of gluten free, gluten sensitive and celiac disease a number of years ago as a result of...
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