A Tribute to Melinda Siegel Frisch

We meet so many wonderful customers who become friends. I often say that because we are always at the restaurant; our customers become our friends and many are like family because we spend more time with them than we do our own families.

Melinda has been a fixture at One Dish Cuisine Cafe, Deli and Bakery since we opened the doors in September of 2012.  Her bright and cheerful disposition drew people to her. Many of you will recognize her, she was in several times a week to get her favorite dishes, usually a Reuben or our Spaghetti and Meatballs, but she loved just about everything we made.  We got to know her friends too. Sue was often a fixture accompanying Melinda to “her place”. We knew her wonderful family,  husband Mike and her children Hannah and Joel. Mike has given me permission to share Melinda’s story and write a tribute to her…he said, “she would love it”.

Melinda’s life was action packed. She was an IAYT Certified Yoga Therapist and taught Yoga at Body Balance and the Yoga Center of Columbia.  She was a former instructor at Loyola College of MD and Golden Heart Yoga. She had her Master of Science in Yoga Therapy and Master of Science in Nutrition and Integrative Health from Maryland University of Integrative Health.  In addition she had her master of Arts in Spanish form Middlebury College Spanish School in Madrid and Secondary and Elementary education in Spanish from Towson University.

Melinda had been diagnosed with Crohn’s/Colitis but was still struggling with GI issues and often expressed her frustration that her GI was not listening to her. She believed she had Celiac too, but was not tested for it. Melinda was having many issues and was really trying to manage her diet to help manage her symptoms. She always said, “something is not right”.  Finally, she had enough and went to see another doctor who listened to her and ran the right tests. I did not see her for a few weeks, so I knew something was up. She came in to see me and shared the news with me.

The diagnosis was Stage 4 Colon Cancer. She went through several rounds of chemo and always had such a positive attitude. The last few months were very difficult for her. She was not able to eat and was getting very dehydrated. When she was released from the hospital Mike would bring her here to eat. She would always order her Reuben and we would be so happy to see her eat just one bite. I would ask her what she could taste and she would say she could taste some chocolate and I would send her home with a few treats.

On the way out we would hug and cry and she would say that she was so scared. All I could do is hold her and tell her that I was praying for her and that I loved her so much and that I wished I could make it all go away. This scenario was repeated several times. After she left I would walk back into my office and cry and let out a lot of anger.

I never shared this with Melinda, because I wanted her to remain positive. I felt like I was reliving what happened to my best friend Carole; who had the exact same thing happen to her when she was only 33. Her doctor blamed it all on postpartum issues after the birth of her second child.  It was colon cancer. We buried her at 35 leaving a 3 year old and a 5 year old. I was angry at the doctors who were not listening to their patients. I was angry because this was so preventable!  Why don’t some doctors listen to the patient and run some tests instead of assuming their symptoms are in their heads?

For all of you reading this, I know this is what Melinda would say: “Please, if you do anything, take control of your health! If your doctor is not listening and invalidating you or your symptoms; please, please, please, find one who will listen and run the tests needed to make a proper diagnosis. It can save your life!” I know Melinda would never want to see anyone go through what she had to endure. Take control, see a new doctor and possibly save your life!

Melinda, you were a bright light in our lives and we are so thankful to have been a part of your life. I know I will see you again one day and I’ll be bringing the Reubens with me! I love you and am thankful for your friendship, your wisdom and for sharing so much of your life with us and so many others.  Godspeed Melinda Siegel Frisch…..

 

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New Info From the 2017 GF Education Day

On Sunday June 11,  I had the pleasure to attend and speak at the Washington DC Gluten Free Education Day again this year. Each year this great event is made possible by the Celiac Disease Program at Children’s National Medical Center. In addition, our bakers Emily and Jennifer did a cooking demonstration of our quick breads.  I spoke about the pitfalls of FALCPA (Food Allergen Labeling and Consumer Protection Act) and the GF Labeling Act and also gave some hints for easy weeknight meals.

This was a wonderful event for those who were newly diagnosed and those who are long time Celiacs got to learn what was new.  There were many activity sessions for children and so many well qualified speakers for adult sessions,  Unfortunately, I could not attend them all.  However, I was most impressed by the keynote presentation; The State of Celiac Disease- Current Research, Latest Advances and Mass Screening Protocols. Below are my notes from the session.

Dr Ivor Hill, Nationwide Celiac Disease Center Ohio; The Quintessential Autoimmune Disorder

-We know more about Celiac Disease than any other autoimmune disease! In 1888 Samuel Gee stated that diet would be the only cure. In 1950 William-Karel Dicke identified wheat, rye and barley as the problem.

-Factors in Celiac Disease are genetics, environmental factors, diet and other unknown triggers.

-Testing Recommendations are antibody blood testing, intestinal Biopsy and Genetic HLA Screening.

-Other grains that may be problematic for Celiacs are: Teff, Oats, Millet because they are in the same family! (Yup, they are a problem for me)

-Genetics; HLA and non HLA Genes found on chromosome 6, you can have DQ2 or DQ28 or both..they are necessary but not sufficient. There are many different versions of DQ2 and DQ8 genes with 40 different mutations associated. There is an autoimmune overlap.

-Trigger Factors; age, progression, prevalence, infections (rotovirus, adenovirus, stress, pregnancy and the Microbiome (lining of intestines) which is a trigger factor and is very different in those with Celiac.

-Research Treatments; Gluten Detox; grain modification is problematic due to the peptides in wheat. Glutenase; enzyme to relieve symptoms after gluten exposure is questionable because our stomach acid can destroy the enzyme.

-Peptide Transport Blockage; problematic…Lorazotide prevents opening of tight junctions in intestine that would let gluten in, but it only lasts about 90 minutes.

-Antibody Blockage or Nexvac 2 will only target those with gene HLA DQ 2.5.

-Future Research: He feels that the future will identify more genes involved in Celiac Disease. Right now half of all cases are cases of people who are asymptomatic.

Dr Edwin Lui, Colorado Children’s Hospital Celiac Disease Center; Is it Time for Mass Screening?

-Celiac Disease is not rare. Right now in the US the rate is 1.3%, Finland is 2% and Sweden is 3% (1984-1996 of all 12 year olds).

-Incidence of Celiac Disease is rising and more people are developing it.

-Who should we screen? Many have no symptoms. Those that are at risk are:

Those with: Type 1 Diabetes (3-12%), Autoimmune Thyroid Disease (7%), Liver Disease, Rheumatoid Arthritis, IgA Deficiency, Downs Syndrome, Turner Syndrome, Pancreatic Disease, Kidney Disease, Addison’s Disease, Parathyroid Disease, Growth Hormone Deficiency, Family History.

-40% of population is at risk of developing Celiac Disease because they have DQ2 or DQ8 genes.

-Following children in Denver study found that 3% developed Celiac by age 15 while 5% developed the antibodies.

Dr Benny Kerzner, Celiac Disease Program Children’s National Health, Wash, DC; Best Practices for Management of Celiac Disease

-Dr Snyder, Dr Liu, Dr Fasano, etc, got together to set guidance for physicians for the care of those with Celiac Disease. Here are a couple of interesting points that he made. Some of this is new information for many of us!

-Check newly diagnosed Celiac for Autoimmune Thyroid Disease, Liver (AST and ALT) and Hepatitis B. (30-70% of Celiacs are non responsive to the Hep B Vaccine if they got it before they started on GF Diet! So make sure you get this taken care of.)

-Vitamin Deficiencies usually correct on their own once following a strict GF Diet…so they don’t usually screen for them unless there are issues that warrant it.  The same for bone density, etc.

Children's National

 

 

 

 

 

My Doctor Has Celiac Disease Too!

Many of my customers ask me who my doctors are. The Gastroenterologist who diagnosed me with Celiac Disease is still practicing in Rockville, Md  and is retiring soon. I still see him for follow ups for Celiac and Barrett’s Esophagus.

However, my primary care physician and endocrinologist; whom I saw on a regular basis were not up to par when it came to Celiac Disease or it’s complications. One of my goals in 2016 was to find a primary care physician who truly understands Celiac Disease and who did not dismiss it as minimal or view it as not relevant to my overall health. To make it worse, I would wait for an hour or two to see the primary care doctor and then get 5 minutes of their time with no real understanding of Celiac Disease or how it affects other body organs. Neither doctor understood that Celiac Disease affected your whole body! I knew that I really needed to switch doctors. My goal was to not get the blank stare from my primary care physician and endocrinologist when I am dealing with other complications of Celiac Disease. We all know that look; kind of like this:

doctor-confused  The Clueless Look

At the same time, one  of our regular customers is a doctor, an Internist, who deals with the whole body system not just special parts of the body. She is practicing locally and has Celiac Disease; as does her young daughter. What was I waiting for or afraid of?

Finally, I made up my mind that I deserved a doctor who “gets it” and made the move to Dr. Polgar as my Primary Care Physician. This was by far the best decision that I made in 2016 when it comes to my health and well being.  She actually got all of my medical records from all of my specialists to understand the whole picture of my health! She was involved in pre-op for the other surgeries that I had to have last year. I decided to interview Dr Polgar and share her insight, perspective and information with all of you.

When did you know that you wanted to be a doctor?

My parents have been telling me stories about how as a young child I was hospitalized with asthma several times and, as soon as I felt better, I started nagging the nurses and doctors to let me help them. Since my father was also a physician, people always assumed that I was just simply following in his footsteps. However, my father was actually trying to talk me out of becoming a doctor, he thought it was too demanding. It was my experience as a patient that led me down this path.

Where did you go to medical school and where did you do your residency?

I was born and raised in Hungary and went to medical school there as well. After graduation, I finished a 5-year internal medicine residency program and worked as an internist for a few years, still in Hungary. I moved to the US about 15 years ago, initially to conduct cancer research at the National Institute of Health. As fascinating as cancer research is, I missed directly working with patients. So, in order to be able to practice here in the US, I did another 2 years of residency at Harbor Hospital in Baltimore.

What made you decide to specialize in internal medicine?

While I think that subspecialists play a very important role when it comes to patient care, I always wanted a field of medicine where I would deal with the whole person, not just a particular organ system. Being able to build a long term relationship with patients and get to really know them was also vital in my decision.

When and how were you diagnosed with Celiac Disease?

It was my then 7-year-old daughter who was first diagnosed. She had a very typical case with frequent abdominal pain, early satiety and eventually weight loss. It is recommended to screen the first degree relatives of anybody with confirmed celiac disease since there is an approximately 1:10 chance of having it. To be honest, I first had my husband tested because he was frequently complaining of gastrointestinal symptoms, while I was not. When his blood tests came back negative, I was tested and, lo and behold, very high antibody levels were found. Subsequently, a duodenum biopsy confirmed that I have had celiac disease for a long time, possibly my whole life.

Why do you think it is important for primary care physicians to understand Celiac Disease?

For a myriad of reasons. First of all, it is usually the primary care who first sees patients with any new symptom. Even when celiac disease presents itself with typical gastrointestinal symptoms, physicians still often do not think about testing for it.  Back in medical school, we were taught that it is a rare mostly childhood disease which, of course, now we know not to be the case. Another reason why it is very important for the primary care doctor to understand celiac disease is because it affects not only the GI system, but pretty much any organ you can you can think of, and seemingly unrelated symptoms could be due to either undiagnosed celiac disease, or gluten exposure in a previously diagnosed patient.

What have you learned about Celiac Disease that has surprised you?

The biggest surprise came through my own diagnosis, that a practically asymptomatic person can have “full-blown” celiac disease. This definitely led me down a path to learn as much as possible about this intriguing disease.

Why did you decide to leave Johns Hopkins and start your own practice?

I was growing more and more frustrated with what I call “assembly line medicine”. Decreasing insurance reimbursements force practices to compensate by seeing more patients. The only way to do that is to spend less time with one patient. I found myself not having time to do the things that I probably enjoy the most in medicine: educating patients and being able to thoroughly think through cases. As I mentioned previously, I like to look at the whole person not just concentrate on a single complaint. This cannot be done in 10-15 minutes.

How is your practice set up to give patients the individual attention that they need along with the best possible care?

My practice is based on a novel idea called Direct Primary Care (DPC). The name refers to the direct financial relationship between the patient and the doctor. By leaving the middle man (the insurance company) out, the distorted financial incentives disappear. This is the only model that I found where the interest of the patient is aligned with the interest of the physician. It allows for significantly longer visits (our new patient visits are scheduled in 90 minute slots), much more personalized care, better access to the doctor (we guarantee same or next day appointments, and my patients have my email and cell phone number in case they need to reach me outside of normal office hours). I could go on and on about the benefits of direct primary care.

How can patients reach you?

The practice is located at 8895 Centre Park Drive, Suite E, Columbia, MD 21045. Our main office number is (443) 864-5503. A lot more information about me and the practice can be found on our website: http://www.drpolgar.com Click Here