Last week I posted an entry regarding a wonderful doctor devoted to the research and sharing of his knowledge regarding celiac disease, gluten sensitivity and gluten intolerance. Dr. Peter Green is continuing to impress me even more with his invaluable research. One issue I feel I should share as I agree with him fully on this: why the heck is there not more research being done to CURE celiac disease since it is so greatly widespread.
Why do we only hear about diets, foods and substitution lists? If you look around, most national organizations for people with chronic diseases have large sums of money raised for them regularly. So, why isn’t this the case with all the many organizations for people with celiac disease? There is NO funding or money raised regularly to get to the bottom of this disease and get to a cure.
Dr. Green points out that the people with celiac disease are more interested in finding out what to eat, something as basic as that. The national celiac support groups keeping telling people what to eat and giving them their solutions. But the research and the many questions to answer about the disease are not really looked at in the way that your other chronic diseases are and truly should be with the amount of people who are diagnosed and the amount of people not even aware they are walking celiacs or gluten-sensitive or gluten intolerant.
Raising money for research is the KEY way to make doctors more aware of the diseases.
Many doctors are not even aware of some of the basic signs and need to be informed or better informed.
Please, share with me your views and any information you have about this very important subject.
If you’re like me, you’re probably alarmed to hear so much about the prevalence of “mental disorders,” particularly among children. It seems that every year there are more and more disorders are emerging, along with psychotropic medications to treat them. However, as the mother of three grown-up, mentally healthy children and with a strong background and experience in nutritional research, I counsel mothers to be careful before mistaking your children’s odd behavior with a mental illness. It turns out the symptoms of malnourishment and mental disorders are actually quite similar in children.
Even just the signs of a deficiency in B vitamins will sounds familiar to you as the symptoms of childhood mental disease. Deficiency in Vitamin B1 can result in fatigue, poor memory, irritability, and insomnia. A B2 deficiency can cause depression. Deficiencies of B3 may begin as depression, but untreated may progress to psychosis or even dementia. Deficiencies in Biotin may cause a variety of problems, including skin disorders and eczema, dandruff or hair loss, fatigue, depression, even hallucinations.
Children can also suffer from a classic case of low blood sugar. Studies show that breakfasts rich in protein keep the body’s blood sugar level higher and more stable than breakfasts such as, say, the American breakfast staple of sugar-packed cereals. Kids are bound to peak in the morning and then crash later in the day, exhibiting hyperactivity and lethargy during the school day.
The consequences of improperly diagnosing a mental illness instead of treating malnourishment in a child can be severe. If you care about your child and children in general, it is imperative that you and your child’s teachers learn the crucial difference between children’s mental disorders and inadequate nutrition.
Tina Turbin
Lauren is a gluten free teenager living in Canada, with a passion for good food and a care in her heart for those in Haiti! Lauren may be a teen but she is now deemed a humanitarian in my eyes as well as many others. As a children’s author, writer, humanitarian I do know how much time this must have taken to organize and get all this gathered to a completion. A lot!
Here is what Lauren has to share: “After all, that is what this is about: selling ebooks to donate money to Haiti. All proceeds will do to the Red Cross. The Canadian Red Cross that is. You see, I am Canadian so it only makes sense to donate to this one. Also, it has been in Haiti for many years, so they will be able to use the funds to help as in the best areas possible. And here’s the really important part: the Canadian Government will match all donations received by February 12th, that are marked for Haiti Relief (as I will be doing to these). They are matching donations made by individuals as well as those made from fundraisers for Haiti (like this ebook) by schools, businesses, social groups (that is what I believe we are, as blogging is a community of people, in this case coming together around food), etc.”
Going back in time, Lauren started this project in January 2010- ”I don’t know how long it will be, or how much work it will take, but it will happen. Relief is being sent there in bundles now, and in a few weeks, they will still need clean food and water. Medical support will still be saving lives. Currently, some of the “big” bloggers are getting together to make a cookbook, but I’m sixteen. With that said, if you’re a blogger, send me your favourite, most loved recipe that makes you feel at home with an email subject line of “Haiti Ebook” to mail at celiacteen. com. Please also include a picture! The recipe does not have to be gluten free. It can be a baked good, a meal, a breakfast, a treat, anything. Whatever it is though, make sure it makes you think of home. They lost theirs, so a comforting dish is the best way in my eyes!”
The project is complete- Help support Lauren’s Cause.
http://www.celiacteen.com/2010/02/haiti-ebook.html
Tina Turbin
Good news ! We have gluten-free options at Starbucks.
When Starbucks announced the cancellation of their cake via Twitter this started a petition to bring back the cake. They listened and acted upon this petition and the many calls they received.
All of the gluten-free items they now have offer a longer shelf life. This they hope will lead to less waste and less profit loss. For the full Starbucks gluten-free product list, check out Gluten-Free Philly’s post. There are nut free and dairy free options this time around too.
Starbucks has shared that after the discontinuation of their Valencia Orange cake the gluten-free consumers really expressed a desire for more healthy snacks so they decided to accommodate this need. Yay Starbucks!
It’s is a smart move for Starbucks to accommodate gluten-free, vegan and organic minded consumers with these new food options. Many people will enjoy these products.
I have stopped at a few Starbucks to check them out. I have found ones that do not have the GF items yet. I was told they are getting them, the one in Texas airport told me that it has to do with the heightened security on getting new products in and the one in Clearwater, Florida at Barnes and Noble just did not have them delivered as of yet.
Let me know what you guys find out and if they have Oats or not as I know that Lucy’s ( above) does have oats, be it gf oats though. I still prefer to stay off the oats as much as I can.
ENJOY! Tina Turbin
Websites to check:
http://www.scoliosis-world.com/old_polls.htm
Viitals Bakery
Ivan Nikolov
Tampa, Fla. October 7, 2009 Viitals owner, Ivan Nikolov announced the opening of its 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 Nikolov 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, Niklov 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
View their awesome menu they updated this month: http://www.viitals.com/VIITALS-Menu.pdf
Tina Turbin
Laura contacted me to ask to do a review on me and my site and of course we got into the conversation of celiac and gluten-free, some of my favorite subjects. I have a new friend who loves food as much as I do and she is a phenomenal reviewer and writer on foods and restaurants. We have so much in common.
She previously reviewed Deerfield Bakery in the Schaumburg, Illinois and it just so happens that I just had a terrific conversation with Tim Schmitt, the owner and will be reviewing his products and his 3 bakeries next month!
Laura wrote and published an article released today about me and my website http://GlutenFreeHelp.info , the article is entitled Entrepreneur spreads the word about wheat allergies.
You are even treated to my gluten-free flourless chocolate cake recipe!
Thanks you Laura!
Tina
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. Dr. Maureen Ellis
Maureen has generously offered to share her continued personal story. Check back for Part 2 or sign up for the RSS feed on this site on the right hand column. Read Part 1 now
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 dietitian, 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 3. Read Part 1 now
Tina Turbin Please visit this site for more information
There are many ways we with celiac or gluten intolerance can help others. One way is to head a group. Janet 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
