Mellow Mushroom – Pigeon Forge, TN

A person with celiac disease walking into a major chain pizza place can make them very nervous and apprehensive. We had seen the advertisements for the Mellow Mushroom gluten free pizza but thought that it may be taking too big of a risk due to the cross contamination issues. But we were on our quest to find the best gluten free places to eat near Gatlinburg, TN so we thought we would give them a chance to show what they have. We went to the Mellow Mushroom in Pigeon Forge, TN after our visit to the Wedding Bell Chapel.

Our waiter was Justin who was very familiar with the gluten free pizza options and he brought the manager over who assured us that even though their gluten free pizza was prepared in the same kitchen as all their other pizza, the staff takes certain steps when a gluten free pizza is ordered to avoid any cross contamination. The manager even suggested an appetizer, the hummus dip, which is gluten free, and served it with vegetables instead of the normal bread. The dip was great!gluten free gatlinburg tn

The gluten free pizza arrived quickly. The server that brought it to the table told us that the rest of the orders (there were 4 in our party) would be out soon but that they would not leave a gluten free pizza sitting in the back after it was prepared. Impressive!! The pizza, along with everyone else’s order was very good and we left there extremely satisfied and still gluten free!

I cannot speak for all of the other Mellow Mushroom locations but the one in Pigeon Forge, TN was on the ball when it came to protecting my spouse from the poison known as gluten.


Something Savory Bakery & Cafe – Maryville, TN

Something Savory Bakery & Cafe in Maryville, TN is located right on your way to the wonderful vacation areas of the Smoky Mountains in eastern Tennessee. On the first day of our trip to the mountains this year, my spouse started searching for her favotire gluten free dessert (cupcakes!) while we were driving. She came across Something Savory Bakery & Cafe in Maryville, Tn which was about an hour away from where we were. She called them and within a minute she had a dozen gluten free cupcakes ordered and waiting on us.

When we arrived we found out that the cafe had several gluten free dining options and even have their own gluten free bread! Wanda had the gluten free chili and I had the pimento cheese sandwich. Both were great! We also sampled several of their gluten free desserts, including the cupcakes. Everything that we tried there, including the gluten free bread, tasted great. Something Savory has now been added to our list of places that we will drive out of our way for.

Something Savory Bakery & Cafe is not a gluten free facility but they are very aware of the cross contamination issues and take every precaution to avoid them. We talked to several of their staff who were all aware of celiac disease and the dangers of cross contamination. They will also ship their gluten free goodies to you. You can contact them on Facebook or at 865-984-0550.

It’s been three days since we were there and we only have three cupcakes left. Sounds like we may be headed back to Something Savory to re-supply!

Something Savory Bakery Cafe


Celiac Genetic Tests

Celiac Genetic Tests Are Not All Equal and Some DQ2 Negatives May Not Be Completely Negative
By Dr. Scot Lewey

Genetic tests exist for Celiac disease and are highly accurate for determining the risk of the disease. When a complete genetic panel is performed the possibility that someone having or ever getting this autoimmune disease can be determined to an extremely high degree of certainty. Unfortunately, some tests are misleading because they do not include a portion of the genetic pattern that may be present that can predispose to this gluten sensitivity disease though the report may imply absence of increased risk.

Some genetic tests can be done without a doctor’s order. Insurance coverage for the Celiac genetics is highly variable. A couple of laboratories can run the tests on samples obtained from a mouth swab that is painless and well accepted by children. Genetic testing can be done at any age while blood tests for Celiac are not recommended before a year of age. Celiac genetic tests are not affected by eating gluten or not.

If you do not have the commonly recognized HLA genetic patterns DQ2 or DQ8 that are associated with Celiac disease you are believed to not be at risk for the full autoimmune disease. You don’t need to be periodically retested. However, you still could be intolerant or sensitive to gluten. Knowing your genetics can be very helpful if you have a family member with Celiac disease or they or you have other autoimmune diseases associated with a risk of Celiac.

HLA DQ2 and DQ8 are the simple designations for complex white blood cell patterns or types that are known to be associated with an increase risk of Celiac disease. The HLA term stands for human leukocyte antigen. Leukocytes are white blood cells. Antigens are proteins that serve or elicit an immune response by the body. So, the HLA system is a complex set of proteins on the surface of white blood cells. Everyone has two copies of a DQ protein pattern. You get one copy of DQ from your mom and one from your dad. Having at least one copy of either is necessary and sufficient to develop the disease. Having two copies of either or one of both increases the risk even more.

These protein patterns are inherited just like the red blood cell proteins that constitute what is commonly known your “blood type”. I, for example, am A positive blood type. This means I have a pattern of proteins designated A and Rh+ on the surface of my red blood cells. On the other hand I have a white blood cell type pattern DQ2/DQ7 inherited from my parents. My Dad gave me a DQ2 and my Mom the DQ7. You have two DQ patterns on your white blood cells that you received from your parents and you give one of your DQ types to each of your children.

Since only a single copy of either DQ2 or DQ8 can be associated with an increase risk of developing Celiac disease, most laboratories test for the presence of either and simply report their presence or absence. However, knowing if you have one or two copies not only provides additional information about degree of your risk. It also may predict the severity. It also provides information about your parents and your childrens’ risk of inheriting an at risk gene. If you have DQ2 and DQ8 we know your complete DQ pattern. We also known one of your parents had at least DQ2 and the other DQ8. All of your children will either get a DQ2 or a DQ8. So, both your parents and all of your children are at risk for Celiac in that situation. If you have only copy of DQ2 or DQ8 then we only know that at least one of your parents had one copy of the risk gene and each of your children will have a 50-50 chance of inheriting such a risk gene from you.

Other non-HLA genetic factors are involved in the risk of celiac disease. These are still being worked out. However, one poorly understood and little known fact to most doctors and almost all patients is that HLA DQ2 and DQ8 testing done by some laboratories does not include the full spectrum of at risk components of these patterns. DQ2 and DQ8 are a summary blood type designations or serotypes for the presence of several protein subunits. There are alpha and beta subunits to these protein patterns. The beta subunit is the most influential and important component. Most laboratories only test for and report the beta subunit. However, the alpha subunit does carry risk on its own, albeit much less than the presence of the beta subunit or the presence of both alpha and beta subunit.

The most commonly used laboratories for celiac disease genetic testing in the U.S. are Kimball Genetics, LabCorp, Quest, Prometheus, and Enterolab. The Laboratory at Bonfils in Denver not only provides testing directly but also does the testing for several hospitals, Quest and Enterolab. Bonfils only does beta subunit testing. They report results of DQ2 and DQ8 negative based on the absence of the beta subunits associated with DQ2 and DQ8. However this is somewhat misleading since someone could have only the alpha subunit and be “partially” DQ2.

Though the risk of being “half” DQ2 positive from only having the alpha subunit is low overall it is still there. Furthermore, there are people who may believe that they are DQ2 or DQ8 negative based on testing from Bonfils, Quest or Enterolab. These people and/or their doctor may exclude the possibility that they have or are at risk for ever getting Celiac disease when in fact this may or may not be true.

The existence of DQ2 and DQ8 negative Celiac disease has been debated. It is probably clouded to some degree by this confusion about the genetics. Most experts assert that the presence of DQ2 or DQ8 is a requirement to develop the disease and their absence excludes the possibility. However, reports of DQ2 and DQ8 negative Celiac disease persist.

I have a couple of patients who have the positive results for the specific blood tests for CD, endomysial or tissue transglutaminase antibody; and classic biopsy features but were reported DQ2 and DQ8 negative by laboratories who only test for the beta subunit. Ideally, they should be re-testing for alpha unit positive “half” DQ2 or DQ8 but this will depend on their insurance coverage. In the meantime, I am remain concerned that many patients and doctors may be lulled into a false sense of security by negative genetic tests incompletely done or that diagnoses of Celiac disease may be or have been withdrawn on some individuals based on incomplete genetic results.

This issue of DQ2 and DQ8 testing is further complicated by reviews on the subject that are incomplete or vague. The best reviews I have found are by Ludvig Sollid and Benedicte Lie of Oslo, Norway “Celiac Genetics: Current Concepts and Practical Applications” Clinical Gastroenterology and Hepatology 2005 and Bourgey’s 2007 review. In a recent update article by Victorien, there is a general review the genetics of celiac disease including the association of myosin IXB gene (MYO9B). However, it doesn’t explain the DQ2 or DQ8 typing well. They conclude that “To date, only HLA-DQ2 or HLA-DQ8 typing is clinically relevant…” but fail to point out that HLA DQ2 and DQ8 typing should include both alpha and beta subunits.

It is clear that both HLA and non-HLA genetic factors are important in the risk of Celiac disease. However, the absence of the high-risk genes does not preclude adverse reactions to gluten including leaky gut, skin, digestive and neurological symptoms. When genetic testing is used to try to assess the risk or exclude CD then I recommend that full testing including both alpha and beta subunit typing. Hopefully more research will better define the genetics of both Celiac disease as well as non-celiac gluten sensitivity or the so called “gluten syndrome”.

Selected References:

Bourgey, M et al. HLA related genetic risk for Coeliac disease. Gut 2007; 56:1054-1059.

Johnson, TC et al. Relationship of HLA-DQ8 and severity of Celiac disease: Comparison of New York and Parisian cohorts. Clin Gastroenterol Hep 2004; 2:888-894.

Kaukinen K. et al. HLA-DQ typing in the diagnosis of Celiac disease. Am J Gastroenterol 2002; 97(3): 695-699.

Lundin, KE. HLA-DQ8 as an Ir gene in Coeliac disease. Gut 2003; 52:7-8

Mazzarella G. et al. An immunodominant DQ8 restricted gliadin peptide activates small intestine immune response in in vitro cultured mucosa from HLA-DQ8 positive but not HLA-DQ8 negative Coeliac patients. Gut 2003; 52:57-62.

Sollid, LM and Lie, BA. Celiac disease genetics: Current concepts and practical applications. Clin Gastro Hep 2005; 3:843-851.

Wolters,VM and Wijenga C. Genetic background of celiac disease and its clinical applications. Am J Gastroenterol 2008; 103:190-195.

The Food Doc, Dr. Scot Lewey, is an expert medical doctor specializing in digestive diseases and food related illness, especially food allergies, celiac disease and colitis. Dr. Lewey in an expert in gastroenterology (diseases of the digestive tract), clinical researcher, author and speaker. For more information visit www.thefooddoc.com

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Pier 424 – New Orleans, LA

Pier 424 in New Orleans, LA is located right on Bourbon Street in the French Quarter. They have a menu posted outside and usually a hostess standing at the door. Pier 424 does not have a specific gluten free menu. Based on the items on the regular menu we felt that if the chef knew anything about gluten and cross contamination, modifications could be made to several of the items. After discussing this with the chef, the decision was made to try the crab leg steamer pot. Gluten free in New Orleans just got a little easier!This was an excellent choice! It was similar to a low country boil with crab legs added. The serving size was just right, eat until you are stuffed, then just a little more so you don’t feel like you have to carry it with you.

Eating gluten free in New Orleans is not impossible but you do have to do your research and pay close attention to cross contamination issues. Pier 424 was so good that we ate there three times during our week long stay. Each time the server was knowledgeable of our gluten free concerns and all of our questions were answered to our satisfaction. They have their menu listed on their website.

Pier 424 is definitely one of the restaurants on our list when looking for gluten free New Orleans!

Hospital Stay – Staying Safe With Celiac Disease

Hospital Stay – Staying Safe With Celiac Disease
By Kathi Jo Robinson

You’ve had enough time and experience now navigating the ins and outs of celiac disease to realize when you are out of control, your situation can rapidly deteriorate, especially with a trip to the hospital. Don’t ever let yourself assume because you are going to an institute of medical healing, you will automatically be safe. Your guard and hopefully an “enlisted” bodyguard has got to be diligent at all times to verify your safety.

Advance preparations before the actual event can go a long way in securing your safety. Follow down this checklist if the occasion for your stay will be a planned event.

  • Write up several copies of a guide detailing your situation and its limitations. Include specific suggestions and instructions about foods, medicines, toiletries and anything else you may use. Provide the products themselves if there is to be any question of availability. Confirm each of your doctors, the admission nurse, head floor nurses, all relevant departments (pharmacy, kitchen and dietitians, anesthesia, physical therapy, pre and post op nurses) also all receive a copy.
  • Request the front of your medical chart to be marked with LARGE bold, bright letters “Allergy”.
  • Make two signs, one for the hall door and one at your bed which states “CELIAC- GLUTEN FREE ONLY
  • Work with the kitchen dietitian in advance and pre-schedule your meals by determining the hospital’s capabilities to provide the foods which you need. If there will be a possible problem, request if you can bring your own food and can they supply a small refrigerator for storage.
  • Be sure your enlisted “bodyguard” understands your restrictions and they are willing to carry out your wishes while you are unable to care for yourself.
  • Get all of your prescriptions and any special foods in advance so everyone knows upon arrival these are the items to be used during your stay.
  • Make your own hospital wristband, marking it with big bold letters ALLERGY and be sure it stays placed right alongside the hospital wristband.
  • Wear some kind of medical ID bracelet or necklace at all times

In case this is an emergency situation, obviously most of these preparations will be impossible. But be sure, at your very first opportunity, either you or a designated family member contacts the kitchen dietitian and explains your circumstances. Never assume the message will get passed along by telling a nurse or aide. Many kitchen workers are not familiar with the circumstances which surrounds your allergy.

Then, after you have done everything you possibly can to ensure your safety, sit back and relax (but still remain watchful) and let them take care of your health so you can succeed in a safe hospital stay.

About The Author:Kathi Robinson
Education and proper safety protocols is your key to a long complication-free life with celiac disease. Start at http://www.allergyfreegarfreesnacks.com/

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Real Life With Celiac Disease

I came across this book, Real Life with Celiac Disease, while researching celiac information. After reading some excerpts and the table of contents, I plan on ordering the book. One of the authors is a dietitian who was diagnosed with celiac disease 20 years ago. Here is some information from the book’s website:

If you’ve already received a diagnosis of celiac disease or gluten sensitivity, this book could change your life. Real Life with Celiac Disease will help you understand:

  • Why you are still having symptoms, even though you’re eating gluten free
  • Easy ways to adjust to a gluten-free lifestyle
  • How to reverse the malnutrition caused by untreated celiac disease
  • How to optimize your nutritional health with fiber, vitamins, minerals, probiotics, and more
  • Where to look for hidden gluten and how to travel and dine out safely
  • Ways to support a friend or family member with celiac disease
  • Whether oats and wheat starch are safe to eat
  • How to eat healthy if you are a vegetarian, have diabetes, or want to lose weight
  • Which family members need to be tested for celiac disease
  • How untreated celiac disease can seriously damage your health, from malnutrition to cancer
  • How celiac disease should be monitored by your health care team throughout life

Real Life with Celiac Disease has three sections:

The first section of the book reviews the history of celiac disease,  where it is found, and how the disease announces itself. Chapters examine the various tests used to diagnose celiac disease, including  blood tests, endoscopy, and genetic testing. This will allow you to have  a good understanding of what celiac disease is and how it is diagnosed.

The second section explores gluten-free life. The gluten-free diet is the only treatment for celiac disease. Although the gluten-free diet can be well-balanced and healthy, making the dietary and lifestyle changes in a sustainable and optimal way can be tricky. This section addresses some of the most common questions and pitfalls that occur in adopting a gluten-free lifestyle.

The third section examines the obstacles you face. Celiac disease is one of the  diagnoses you can have! Individuals often feel much better after diagnosis and treatment than they have for years and go on to lead healthy lives. Yet, life can present obstacles. This section addresses some of the most common issues that people with celiac disease face and, wherever possible, suggests how to overcome them.

The authors, joined by more than 50 international experts, share stories of patients who have questions or problems related to celiac disease and gluten-related disorders. Find out the treatments recommended, the decisions and lifestyle changes made, and the outcomes. The broad, practical knowledge in this book will empower you and the people in your life to achieve the best possible health and well-being.