First; the surgery and then “Road Trip USA”; where you have a chance to share your stories about “road tripping” to ODC and can also win a $25.00 gift certificate! As many o…
First; the surgery and then “Road Trip USA”; where you have a chance to share your stories about “road tripping” to ODC and can also win a $25.00 gift certificate!
As many of you know, I have a major Achilles Tendon issue that really took me out back in May. I spent 7 weeks in a walking boot and many days off resting and icing it to try to get back up to speed. In addition to that, my orthopedic surgeon put me on a mega vitamin B1, B6 and Vitamin C course to help speed healing. We tried the conservative approach and I spent 6 weeks trying to walk on it in a normal fashion. It just made things worse.
I really need to get to a place where I have more good days than bad days. At this point I really don’t have a choice and I will be having surgery. I am set for Achilles Tendon Repair, removal of Haglund’s Deformity (bone) and bone spur removal. They need to detach my Achilles tendon in order to remove the bone. If the tendon is in good shape, they will re-anchor it to my heal using my own bone marrow from my hip. Bone marrow aides in the healing process via of all of those great stem cells. If the tendon is not in good enough shape, they will transfer a tendon from my foot to the Achilles.
The recovery is long… 9 months to one year. I will be in bed for at least two weeks. They will then remove sutures and if I am infection free..they will put me in a hard cast. I will not be able to put any weight on the leg for about 8 weeks or so. Then, I will graduate to a walking boot..and hopefully, by 6 months, I will have shoes on and be on my way to full recovery.
I am so confident in our wonderful staff and know that they will take great care of you; as usual! Dave, Susan, Holly, Jessica, Stephanie and Tevon will still be at the helm starting on August 22. I only ask three things of our customers. First, please remember that we still need you to come in and support us; even when I am out. Second, I ask for your prayers for a safe, successful surgery and speedy recovery. Lastly, I hope you will consider sharing your road trip stories about your ventures from afar to One Dish Cuisine Cafe, Deli and Bakery; this will make our upcoming newsletters easier for me to do and fun for everyone to be able to share their stories.
Road Trip USA; Share Your Stories: I am going to need some help doing newsletters while I am recovering from my surgery and that is where all of you come in! Many of you drive quite a distance to have a safe place for you or your children to eat. We all learn so much from each other and I thought this would be a great time to have a little fun and let all of you share your stories about your road trips to One Dish Cuisine and what else you do when you come into town. Please share your stories with me and get creative..you can include photos..make it fun. If I use your story in any of our upcoming newsletters you will win a $25.00 gift certificate to ODC. Email your story to me at firstname.lastname@example.org.
Thank you for your support and prayers; I will miss all of your smiling faces but have lots of busy work to keep me busy at home. I hope to be back in the cafe in Mid September; zipping around on my knee scooter!
Wow! According to an article in Reuter’s Health (July 29, 2016) written by Marilynn Larkin; a new study out of Spain by Dr Fernando Fernandez Banares found that a subset of patients with Non Celiac Gluten Sensitivity (NCGS) may actually have “Celiac Lite Disease”. A NCGS diagnosis is only given when a person is actively consuming gluten and test negative on Celiac Blood Panel and intestinal biopsy (showing normal villi..no damage or atrophy to the villi). If you have not had these specific tests done and just went off gluten, you don’t know if you are Celiac or not and that is dangerous..especially if you get minimum exposure to gluten via cross contamination!
As I was taking this all in, I thought about so many customers, friends and family members who are in this situation. I wanted to share this study with all of you who tested negative for Celiac and have NCGS, those of you who have not had genetic testing or have not had their skin rash biopsied for Dermatitis Herpeteformis (Celiac disease showing on skin only). I also share the results of my genetic testing for Celiac Disease.
- Study findings of Dr Banares:
“… these patients (the 91%) were characterized by gastrointestinal clinical symptoms within the clinical spectrum of celiac disease, presence of HLA-DQ2/8+, Marsh stage 1 lesion (increased intraepithelial lymphocytes but no villous atrophy), and a clinical and histological response to a gluten-free diet, the question remains as to whether this condition should be considered a ‘minor’ or ‘low-grade’ celiac disease (also called ‘celiac lite’ by some authors) or NCGS.”
Previous studies of celiac disease with (villous) atrophy have shown a permanent increase in IEL, even after a gluten-free diet, (suggesting) that this marker may provide a clue for celiac disease diagnosis and offering the possibility of identifying celiac disease patients when they are on a gluten-free diet, even when histological examination of the biopsy shows recovered mucosa.”
“This ‘proof of concept’ study suggests that there is a ‘minor’ form of celiac disease with negative celiac serology that should be taken into account in the differential diagnosis of NCGS. The presence of increased IEL count and/or TG2 deposits in the mucosa could be of help in the diagnosis of these patients. We are routinely using this diagnostic strategy in our outpatient clinic, and we think that the intraepithelial lymphogram study adds important information to the diagnostic work-up of these patients. Our recommendation is to use it in clinical practice”. Click Here for Full Article
2. GENES: This stuff is simply amazing and easy to understand! (Who should get genetic testing? See graphic at the end.)
In the study above they looked at those who have genes that predispose them to Celiac. Those genes are HLA-DQ2 and HLA-DQ8; found on Chromosome 6. (However, there are more than 40 genes that contribute to Celiac Disease via different versions of HLA DQ2 and HLA DQ8 genes). The risk is definitely lower but having a full Celiac genetic blood test ordered by a Gastroenterologist is something worth doing. Cheek swab testing is not capable of testing for this! The full Celiac Genetic Testing is a specific blood test that will look at all of the alleles/versions of DQ2 and DQ8 that you carry which contribute to the development of Celiac Disease. So, which genes are we talking about?
“Susceptibility to CD is linked to certain human leukocyte antigen (HLA) class II alleles, especially in the HLA-DQ region. HLA molecules are postulated to present gluten antigens to T-cells which in turn induce tissue damage.2 Approximately 95% of patients with CD have the HLA-DQ2 heterodimer encoded by the DQA1*05 and DQB1*02 alleles, while close to 5% have the HLA-DQ8 heterodimer encoded by theDQA1*03 and DQB1*0302 alleles.1 Rarely, patients will carry only one of the DQ2 alleles; ie, eitherDQA1*05 or DQB1*02.3 The HLA-DQ alleles are also found in 48% to 65% of first-degree relatives of patients with CD and up to 73% of patients with insulin-dependent diabetes mellitus; thus, these individuals are at increased risk of developing CD.1 Other high-risk groups include those with autoimmune thyroiditis; Down, Turner, or Williams syndrome; selective IgA deficiency; or individuals with symptoms of unexplained iron deficiency anemia or premature-onset osteoporosis.” Click here for Genetics Info
So, 95% of Celiacs have gene HLA DQ2. However, there are hundreds of different versions (alleles) of those genes. Meanwhile; 5% of Celiacs have different versions of those genes that can definitely lead to Celiac Disease; although the chances are smaller. As usual, I will use myself as an example and share my genetic test results below.
After my brief gluten challenge, I had positive intestinal biopsy (showing villous atrophy) and negative blood test for Celiac. I also have Hashimoto’s Disease (Autoimmune Thyroiditis that is most often found in those with HLA DQ2). I also had many severe vitamin deficiencies and other autoimmune diseases (many autoimmune diseases run in my family).
I was really curious about my own genetic makeup. Last month my gastroenterologist ordered the full Celiac Genetic Blood work. (Cheek swabs don’t do this type of work up..it can only be done via blood work). My long time doctor thought that I would definitely have both DQ2 and 8 based on my medical history. He was very shocked at the results when he called me!
In my case, I did not have the straight up HLA DQ2 or DQ8 genes, but I had other alleles (versions) of those genes that can lead to the development of Celiac Disease. When combined they can form the “perfect storm” scenario. Given the results of the genetic testing; I was confused, was I still a Celiac? The chances were smaller (it was 1 in 2,000) but it is likely, based on genetic testing and the versions of the genes that I carry. Along with a biopsy showing villous atrophy, clean biopsy two years later and autoimmune thyroiditis (seen in those with HLA DQ2) and other health issues that I have. Basically, a “perfect storm” has to form and I most likely formed it. My doctor and I will go over results in more detail when I see him next. You might ask, does it mean that I can go out and eat gluten…..absolutely not, I am still considered a Celiac! (My doctor thought I would carry both genes straight up but the full genetic work up made sense) See graphic below of those who should have HLA Genetic Testing Done.
3. DH: Your Celiac Diagnosis is hiding in a skin rash; often misdiagnosed as Eczema.
Often a person with DH (Dermatitis Herpeteformis) will test negative on blood tests and intestinal biopsy and nobody is looking at their skin rash! So many Celiacs get missed this way. Those who are tested have a skin biopsy that tests positive for the disease. If you have the skin manifestation of Celiac Disease (DH); which I had, the rash can be biopsied and tested for Celiac Disease. 15-25% of those with Celiac Disease also have the DH rash.
DH can show up anywhere..in the mouth, nose, scalp, arms, legs, face, abdomen, ankles, genitals, etc. I had a raging case of DH and the worst was on my scalp. I was sent to the top dermatolagist at NIH back in the early to mid 80’s and he could never figure it out. I took steroids, I applied steroid creams and nothing worked. He never took a biopsy of the rash and never considered food (gluten) being a cause.
Finally, when my gastroenterologist said the words “Celiac Sprue” and I went off of gluten..the rash went away..it took about 8 months for it to clear up. If I have an accidental glutening, it returns and takes 8 months to fully clear up. If I get glutened again I get 8 more months of this rash. It keeps piling on..so if someone keeps getting gluten in their system, the rash does not go away. For me, the severity of my DH depends on how much gluten I accidentally ingested. Currently they don’t know why some Celiacs only damage on their skin and not in their intestines and more research is needed in this area. See a gastroenterologist well versed in Celiac Disease first and they will refer you to someone who can do the biopsy correctly (it is very specific and must be done by someone who has done it before and knows what they are doing)! Click here for info on DH
Clearly, this shows that there is so much they still don’t know about Celiac Disease and Gluten Sensitivity. Please support those who are actively working towards solving the puzzle such as the Center for Celiac Research at Mass General! Click Here for Center for Celiac Research
There are three new developments that happened in the past week..one is great news and two are extremely upsetting for me. First; the good news and then the sad news.
- A well known food allergy advocate/writer is doing a story about us and would like to interview some customers who have food allergies (parent and/or child). Specifically; they would also like to talk with customers who drove a very long way just so they or their child could eat here. -If you would like to be interviewed for the article please email Maureen at email@example.com and please include your name, email address and phone number along with where you traveled from to eat at One Dish Cuisine Cafe, Deli and Bakery. They plan on doing the interviews this week, so the sooner you email me, the better.
- Children’s National Medical Center in Washington, DC is reeling with the news of the sudden death of Dr. John Snyder. He was the Chief of Gastroenterology, Hematology and Nutrition and also developed and led the Celiac Program. I will forever remember his kindness and warm smile. Dr Snyder truly cared about his patients and wanted the best for them. He was instrumental in having our food put in place for in-patient meals and cafeteria meals for those with Celiac Disease and Food Allergies. He loved our food and would say to me; “Maureen, if you are cooking; I am eating!” He will be greatly missed and I will be forever grateful to him for seeing that our meals were part of CNMC! I take solace in the fact that he was doing what he loved; cycling in France. Click Here for Obituary
- Historic Ellicott City is recovering from Flooding; on Saturday July 30th. Six and a half inches of rain fell in two and a half hours causing a deadly flood. Thankfully we are on a hill about 1 mile outside of historic downtown and we came through it all with no damage. However, the historic town took a beating and many buildings were destroyed. Roads are closed to traffic in downtown. -You can still get to us via Rt 95, Rt 100, Rt 70 and Rt 29, via Montgomery Rd and New Cut Road to Hillsborough. For those in Baltimore County/Catonsville who crossed over the Frederick Rd Bridge and came in through historic Ellicott City...you can use 95 and Rt 100 or you can take Frederick Rd to South Hilltop Road which turns into River Road and it will take you over the other bridge. (Yes; there is another bridge that crosses over the Patapsco River!) Once you cross the bridge it turns into Ilchester Rd. Make a right onto College Ave and a left onto Village Crest Drive into Taylor Village. You will see us at the intersection of Hillsborough and Village Crest Drive. If you would like; you can help the victims recover. Click Here to Give or Receive Help
A vaccine for celiac disease is set to start clinical trials in Victoria, Australia in the next few months. Nexvax2 is supposed to give those with celiac disease the ability to overcome their autoimmune response to gluten (the protein in wheat, rye and barley). It is thought that it will desensitize them to three peptides in gluten that actually trigger the autoimmune reaction. The US and Europe will also be participating in the larger phase two study which will assess how well it works. Wow, wouldn’t it be great? I am not sure how long the trials will last or how long it will take to have any answers.
So, every now and then we get menu mailers sent to our home from our local restaurants. I always study them and drool over stuff that I know I can’t have unless I make it myself. I know it is probably not a good thing to do; actually; it is depressing. I sarcastically refer to this habit as “Menu Hopping”! Yup folks, there is coupon clipping, bar hopping and for those with food allergies and/or Celiac Disease..there is menu hopping…where we can only look at the pictures. We just do this to ourselves sometimes.
This week we got one of these glossy menus from Grotto Pizza. If you are not familiar with them; this place is legendary. The original was Joe’s Grotto in Harvey’s Lake, PA. Dominick got his start working there (his brother in law’s place) and my x- husband grew up there. My kids loved Joe’s Grotto. Mike always got the mushroom and green pepper pizza and he will tell you it is not the same here as it is in Harvey’s Lake! Then they expanded to the Delaware Beaches, Ocean City, MD and then to Columbia and Gambrills, MD and there are a bunch in PA. After drooling, I looked for their Gluten Free (GF) or Allergen Free (AF) offerings. They are offering a gluten free pizza with no promises and no warnings about cross contact. On the back of the tri-fold menu it says:
“** Menu items and prices are subject to change. Warning: some menu items may contain peanut oil, peanuts, shellfish and or milk products…..” .
My thought was; “wow, that is not really saying anything”. I could not help but wonder how safe it might be for a Celiac or person with Food Allergies. So, I went to their website. There is nothing other than a spread sheet listing which of the top 8 allergens or gluten are present in each dish. Nothing about cross contact and how they might actually be able to keep the GF pizza GF! Nothing about how they handle allergens. I was surprised but know I am out of the loop because I am either here at the cafe, deli and bakery or at home. ( I know, I don’t have much of a life outside of here.)
To further inflict misery on myself, I decided to delve further to see how much a person would pay for a pizza that may not really be GF and there is no promise that it will be GF. To my surprise I found that we are cheaper!
Grotto’s Cheese GF Pizza 9″ Personal (63.58 sq inches) 12″ Regular (113.17 sq inches)
$10.99 (.17 inch) $15.99 (.14 inch)
ODC Cheese GF Pizza 12″x 9″ Small (108 sq inches) 12″x 16″ Large (192 sq inches)
$16.49 (.15 inch) $25.75 (.13 inch)
saving of 1.26 on this pizza saving $1.13 on this pizza
and you have leftovers! and you have leftovers!
How fun was this gang? ODC is making it taste better, making it safely and saving you money. What is not to like? I know I won’t say this often in my life; thanks Joe’s Grotto for making me drool and look good at the same time! I think I will try to do this once a month and call it “Monthly Menu Hopping”; what do you think gang? Also, do any of you do this to yourself?
So much progress is being made in the areas of public awareness/meal accommodations for those with food allergies and celiac disease. I am amazed when I meet people in our Cafe, Deli and Bakery who have gotten a food allergy diagnosis for their child and just assumed it would never get any easier when it comes to feeding their child. They just get the diagnosis, eat at home and look no further for support or information. They often assume that their child will never be able to go away to college. I always try to share with them how to safely advocate for themselves/child and bring them up to date on what is happening in food allergy advocacy.
When dining out I recommend having only one person advocating/talking to the servers or staff. In the case of a child, I suggest that only the child and 1 parent/primary caregiver do the talking because the child has to learn to advocate for themselves and the parent is there to be sure the child is communicating their allergies correctly. However, well meaning family and friends often chime in and it becomes very confusing. Quite often misinformation is given by friends or other family members who don’t really understand it all. This creates confusion and is dangerous when trying to deal with life threatening food allergies in a restaurant. I always encourage those with food allergies to carry their epi-pen and a food allergy card. Lastly, I give them information that will help them moving forward. The best place for that information is FARE (Food Allergy Research and Education).
If your child has Celiac or Food Allergies and is heading off to college in the next few years this information is for you because it shows you which colleges are taking Food Allergies seriously enough to put a program in place. You need this information because there is not a One Dish Cuisine Cafe, Deli and Bakery on every street corner.
Now there are 26 Colleges with Food Allergy Programs in place!
Last year I posted about this. In 2015; FARE (Food Allergy Research and Education) started a pilot program with 12 colleges in order to train them about the severity of food allergies, how to safely accommodate the dietary needs of these students. Also they helped with support groups for the students as well as in housing, dining, health, disability and emergency services too. The good news is that in 2016 they added 14 more colleges. The complete list is below:
- College of the Holy Cross (Worcester, Mass.)
- George Mason University (Fairfax, Va.)
- King’s College (Wilkes-Barre, Pa.)
- North Carolina State University
- Texas A&M University
- University of Arizona
- University of Chicago
- University of Michigan
- University of Northern Colorado
- University of Southern California
- Valparaiso University (Valparaiso, Ind.)
- Wesleyan University (Middletown, Conn.)
New in 2016:
- Brown University (Providence, Rhode Island)
- Colgate University (Hamilton, New York)
- Michigan State University (East Lansing, Michigan)
- North Dakota State College of Science (Wahpeton, North Dakota)
- Purdue University (West Lafayette, Indiana)
- Skidmore College (Saratoga Springs, New York)
- Stanford University (Stanford, California)
- The University of Iowa (Iowa City, Iowa)
- University of Colorado Colorado Springs (Colorado Springs, Colorado)
- University of Dayton (Dayton, Ohio)
- University of Illinois at Urbana-Champaign (Champaign, Illinois)
- University of New Hampshire (Durham, New Hampshire)
- University of St. Thomas (St. Paul, Minnesota)
- Worcester Polytechnic University (Worcester, Massachusetts)
PS: There are quite a few who have put in programs on their own.
I hope this information is helpful and you stay safe out there! For More Information visit FARE’s Website: Click Here