A Tribute to Super Hero Moms!

 

Mom-Superhero 2

Mother’s Day is here again and every year it gets me thinking about the mothers who are in my life.  The more I thought about it, the more I realized how different the mothers are that come into our cafe, deli & bakery. They are different by necessity. Each year on Mother’s Day we all acknowledge the mothers in our lives but a mother to a child with food allergies, celiac disease or autism is quite different because of the additional burden when it comes to caring for her child. A very big part of this care is safely feeding that child.

If you think about it, most families can go out to eat and celebrate mother’s day and they can go out to eat anytime and anywhere.  If invited to a BBQ; they can go  and relax and eat with friends and family, they can order take out for a quick meal at home, they can go to school or on vacation with no worries when it comes to eating. That is something that the parents who come here with their children are not able to do.

If you know (or are) a mom to a child with Food Allergies, Celiac Disease or Autism, then you know what I am talking about.  If you are not, I would like you to imagine your life and what it would be like if you had to inspect every morsel of food that your child or children ingest because of the fear of behavioral changes, severe sickness or the possible death of your child.

Imagine Yourself in the following situations:

-Your child with autism is not invited to birthday parties. What do you need to do every day to reassure this child that they are truly loved and special?

-Your child is invited to a birthday party and you have to bring every morsel of food with you to make sure that they are safe. You can’t just drop them off and then go out for coffee; you have to watch over them like a hawk to keep them safe from all of the unsafe food around them. What would that be like for you?

-Your family is invited to Christmas or a holiday meal and you still have to make your own safe meal to bring for your child. You never get a break, what would that be like for you?

-Imagine going on vacation and the additional weeks of prior planning required in order to  find stores where you may be able to find safe food and trying to find restaurants that could safely feed your child.  Imagine coming up empty handed and knowing that when you go on that vacation, you will need to drive rather than fly so you can bring all of your coolers full of safe food with you.

-Imagine not being able to eat out on vacation, you have to make every single meal at home. So, basic hotels are out of the question, you must rent a full house with a full kitchen. You never get a true vacation.

-Imagine planning that trip to the beach, renting that ocean front condo and you or your child can never step foot outside or onto that beach because they are selling dry roasted peanuts on the boardwalk right in front of your condo and the sand is littered with peanut shells.  All your child wanted was to go to the beach and you made that happen but your child could only look at that beach through the window!

-Imagine going to a restaurant that says that they can accommodate your child’s allergies and watching them get gravely ill after eating their first bite.  For many this includes administering epinephrine and an ambulance ride to the hospital and a several day stay in that hospital. You then feel guilty for trusting that restaurant or waiter or chef with your child’s life.

-Imagine reading and inspecting every food label, calling food manufacturing companies and being assured the food is safe.  You feed the food to your child and end up calling 911 because it was not safe after all.  How do you forgive yourself when you know it is not your fault, but you are there to protect your child…how do you process this and live with it?

-Imagine sending your child to school and panicking every hour of the day wondering if your child is safe, even when they are grown and in college!

-Imagine the hours spent educating family, teachers, nurses and other students at school about the seriousness of food allergies, celiac disease and autism.Or volunteering to mentor parents of those who are newly diagnosed.  Exhausting!  Then you still have to be nice to the doubters or those who don’t care how serious your child’s allergy is. Frustrating!

-Imagine telling  your family about your child’s shellfish allergy and a family member dangles a shrimp in front of the child’s face on Christmas Day.  Do you still talk to that family member?

-Imagine telling your family about your child’s Celiac Disease and they think that it is okay to give them “just a little bit” and they say things like “he/she does not look sick” or “are you sure it was the “gluten” making them sick?” (Like you and your child don’t know when they have ingested gluten…others know when they have a cold, the symptoms are easy to recognize each time you get a cold; the same is true with Celiac Disease and a gluten reaction.)

-Imagine trying to explain to your family or strangers that your child is not being a “brat”; and that he/she has autism and is having a difficult time adjusting to this new environment. Imagine dealing with the disapproving and incriminating stares from strangers and not ever being able to lose your composure.

-Imagine sitting across from your doctor and hearing him tell you that you have breast cancer and your first thought is “OMG, how will I safely feed my food allergic child while going through this?” (You know that well meaning neighbors and friends can’t bring meals that are safe for your child when you are going through chemo.)

These mother’s wear a halo and a cape that is invisible to many, but not to me. I see the invisible super hero emblem that you display proudly each time your child needs to eat. These mother’s are truly super heroes! I am not saying that these mom’s love their child more than other moms; what I am saying is that they spend more time actively loving, worrying and preventing tragedy than the average mother. These mothers and their children truly inspire me and I am thrilled to be able to allow them some time to relax and feel the difference when dining at One Dish Cuisine Cafe, Deli & Bakery. This is why I am committed to opening more safe havens for these children and their parents.

Mother’s Day would not be complete without honoring the other great mothers in my life. My mother-in-law, Pat, raised a wonderful son, David, who is committed to welcoming folks back to the table with me here at One Dish Cuisine.  Pat’s weekly presence and support mean so much to me and I am so grateful to have her love and support and to have her in my life.

Additionally, my daughter-in- laws are wonderful mother’s to my two grandsons! I am so thankful for their monetary sacrifices and the decisions they both made to stay home and be with their child and bringing them to the cafe so I can see them! Truly, incredible.

My ex mother-in-law, Emily, is still a support system to this day! She is still that safe port in the storm for me when I need to talk with someone and she always gives me the courage to stand up and dust myself off and move on when things go wrong. I am so grateful that we have maintained such a wonderful relationship and I have learned so much from her and am happy to still call her my friend.

For my sisters (and sister-in-laws) who each show their children the love and support that they need; unique to their own circumstances. Each of you inspires me with the challenges that you handle so well each and every day.  Thanks for being great moms and great sisters.

My mother, Vickie, who had seven children in eight years (no twins), buried two of them when they were young and still managed to pick herself up each day and  chose to see the “good” in her situation. Not only has she financially supported One Dish Cuisine but she taught me that loving and giving is the most important thing a person can do on this earth and when you combine that with following your passion; then you will feel complete. It took me quite a few years to get over the self induced “pity party” that I was having about my own situation, but thanks to my mom, I finally saw the light and understood that the food I was making for myself could also serve the needs of others.  I am happy to be able to live with passion, purpose and sleep well at night. I have never worked so hard or so many hours in my life and I don’t have any personal time for friends or family, but my mother taught me that this type of sacrifice is okay; knowing that what I am building here is so important for so many in need. I am so grateful that she taught me not to be afraid of challenges and that faith, love and giving are the most important gifts that I possess and that I have the ability to use these “gifts” every day and these gifts that I have don’t cost me anything when I give freely.  I am thankful for my mother never giving up on me, she is truly my hero.

Happy Mother’s Day to all of you great mothers, step mothers, caregivers, etc; you all are Super Heroes!

I publish this each year.

A Tribute to Super Hero Moms!

Mothers day cupcakes 2017

Mother’s Day is here again and it got me thinking about the mothers who are in my life.  The more I thought about it, the more I realized how different the mothers are that come into our cafe, deli & bakery. They are different by necessity. Each year on Mother’s Day we all acknowledge the mothers in our lives but a mother to a child with food allergies, celiac disease or autism is quite different because of the additional burden when it comes to caring for her child. A very big part of this care is safely feeding that child.

If you think about it, most families can go out to eat and celebrate mother’s day and they can go out to eat anytime and anywhere.  If invited to a BBQ; they can go  and relax and eat with friends and family, they can order take out for a quick meal at home, they can go to school or on vacation with no worries when it comes to eating. That is something that the parents who come here with their children are not able to do.

If you know (or are) a mom to a child with Food Allergies, Celiac Disease or Autism, then you know what I am talking about.  If you are not, I would like you to imagine your life and what it would be like if you had to inspect every morsel of food that your child or children ingest because of the fear of behavioral changes, severe sickness or the possible death of your child.

Imagine Yourself in the following situations:

-Your child with autism is not invited to birthday parties. What do you need to do every day to reassure this child that they are truly loved and special?

-Your child is invited to a birthday party and you have to bring every morsel of food with you to make sure that they are safe. You can’t just drop them off and then go out for coffee; you have to watch over them like a hawk to keep them safe from all of the unsafe food around them. What would that be like for you?

-Your family is invited to Christmas or a holiday meal and you still have to make your own safe meal to bring for your child. You never get a break, what would that be like for you?

-Imagine going on vacation and the additional weeks of prior planning required in order to  find stores where you may be able to find safe food and trying to find restaurants that could safely feed your child.  Imagine coming up empty handed and knowing that when you go on that vacation, you will need to drive rather than fly so you can bring all of your coolers full of safe food with you.

-Imagine not being able to eat out on vacation, you have to make every single meal at home. So, basic hotels are out of the question, you must rent a full house with a full kitchen. You never get a true vacation.

-Imagine planning that trip to the beach, renting that ocean front condo and you or your child can never step foot outside or onto that beach because they are selling dry roasted peanuts on the boardwalk right in front of your condo and the sand is littered with peanut shells.  All your child wanted was to go to the beach and you made that happen but your child could only look at that beach through the window!

-Imagine going to a restaurant that says that they can accommodate your child’s allergies and watching them get gravely ill after eating their first bite.  For many this includes administering epinephrine and an ambulance ride to the hospital and a several day stay in that hospital. You then feel guilty for trusting that restaurant or waiter or chef with your child’s life.

-Imagine reading and inspecting every food label, calling food manufacturing companies and being assured the food is safe.  You feed the food to your child and end up calling 911 because it was not safe after all.  How do you forgive yourself when you know it is not your fault, but you are there to protect your child…how do you process this and live with it?

-Imagine sending your child to school and panicking every hour of the day wondering if your child is safe, even when they are grown and in college!

-Imagine the hours spent educating family, teachers, nurses and other students at school about the seriousness of food allergies, celiac disease and autism.Or volunteering to mentor parents of those who are newly diagnosed.  Exhausting!  Then you still have to be nice to the doubters or those who don’t care how serious your child’s allergy is. Frustrating!

-Imagine telling  your family about your child’s shellfish allergy and a family member dangles a shrimp in front of the child’s face on Christmas Day.  Do you still talk to that family member?

-Imagine telling your family about your child’s Celiac Disease and they think that it is okay to give them “just a little bit” and they say things like “he/she does not look sick” or “are you sure it was the “gluten” making them sick?” (Like you and your child don’t know when they have ingested gluten…others know when they have a cold, the symptoms are easy to recognize each time you get a cold; the same is true with Celiac Disease and a gluten reaction.)

-Imagine trying to explain to your family or strangers that your child is not being a “brat”; and that he/she has autism and is having a difficult time adjusting to this new environment. Imagine dealing with the disapproving and incriminating stares from strangers and not ever being able to lose your composure.

-Imagine sitting across from your doctor and hearing him tell you that you have breast cancer and your first thought is “OMG, how will I safely feed my food allergic child while going through this?” (You know that well meaning neighbors and friends can’t bring meals that are safe for your child when you are going through chemo.)

These mother’s wear a halo and a cape that is invisible to many, but not to me. I see the invisible super hero emblem that you display proudly each time your child needs to eat. These mother’s are truly super heroes! I am not saying that these mom’s love their child more than other moms; what I am saying is that they spend more time actively loving, worrying and preventing tragedy than the average mother. These mothers and their children truly inspire me and I am thrilled to be able to allow them some time to relax and feel the difference when dining at One Dish Cuisine Cafe, Deli & Bakery. This is why I am committed to opening more safe havens for these children and their parents.

Mother’s Day would not be complete without honoring the other great mothers in my life. My mother-in-law, Pat, raised a wonderful son, David, who is committed to welcoming folks back to the table with me here at One Dish Cuisine.  Pat’s weekly presence and support mean so much to me and I am so grateful to have her love and support and to have her in my life.

Additionally, my daughter-in- laws are wonderful mother’s to my two grandsons! I am so thankful for their monetary sacrifices and the decisions they both made to stay home and be with their child and bringing them to the cafe so I can see them! Truly, incredible.

My ex mother-in-law, Emily, is still a support system to this day! She is still that safe port in the storm for me when I need to talk with someone and she always gives me the courage to stand up and dust myself off and move on when things go wrong. I am so grateful that we have maintained such a wonderful relationship and I have learned so much from her and am happy to still call her my friend.

For my sisters who each show their children the love and support that they need; unique to their own circumstances. Each of you inspires me with the challenges that you handle so well each and every day.  Thanks for being great moms and great sisters.

My mother, Vickie, who had seven children in eight years (no twins), buried two of them when they were young and still managed to pick herself up each day and  chose to see the “good” in her situation. Not only has she financially supported One Dish Cuisine but she taught me that loving and giving is the most important thing a person can do on this earth and when you combine that with following your passion; then you will feel complete. It took me quite a few years to get over the self induced “pity party” that I was having about my own situation, but thanks to my mom, I finally saw the light and understood that the food I was making for myself could also serve the needs of others.  I am happy to be able to live with passion, purpose and sleep well at night. I have never worked so hard or so many hours in my life and I don’t have any personal time for friends or family, but my mother taught me that this type of sacrifice is okay; knowing that what I am building here is so important for so many in need. I am so grateful that she taught me not to be afraid of challenges and that faith, love and giving are the most important gifts that I possess and that I have the ability to use these “gifts” every day and these gifts that I have don’t cost me anything when I give freely.  I am thankful for my mother never giving up on me, she is truly my hero.

Happy Mother’s Day to all of you great mothers, you all are Super Heroes!

I publish this each year.

A Tribute to Super Hero Moms!

Mom-Superhero 2

Mother’s Day is here again and it got me thinking about the mothers who are in my life.  The more I thought about it, the more I realized how different the mothers are that come into our cafe, deli & bakery. They are different by necessity. Each year on Mother’s Day we all acknowledge the mothers in our lives but a mother to a child with food allergies, celiac disease or autism is quite different because of the additional burden when it comes to caring for her child. A very big part of this care is safely feeding that child.

If you think about it, most families can go out to eat and celebrate mother’s day and they can go out to eat anytime and anywhere.  If invited to a BBQ; they can go  and relax and eat with friends and family, they can order take out for a quick meal at home, they can go to school or on vacation with no worries when it comes to eating. That is something that the parents who come here with their children are not able to do.

If you know (or are) a mom to a child with Food Allergies, Celiac Disease or Autism, then you know what I am talking about.  If you are not, I would like you to imagine your life and what it would be like if you had to inspect every morsel of food that your child or children ingest because of the fear of behavioral changes, severe sickness or the possible death of your child.

Imagine Yourself in the following situations:

-Your child with autism is not invited to birthday parties. What do you need to do every day to reassure this child that they are truly loved and special?

-Your child is invited to a birthday party and you have to bring every morsel of food with you to make sure that they are safe. You can’t just drop them off and then go out for coffee; you have to watch over them like a hawk to keep them safe from all of the unsafe food around them. What would that be like for you?

-Your family is invited to Christmas or a holiday meal and you still have to make your own safe meal to bring for your child. You never get a break, what would that be like for you?

-Imagine going on vacation and the additional weeks of prior planning required in order to  find stores where you may be able to find safe food and trying to find restaurants that could safely feed your child.  Imagine coming up empty handed and knowing that when you go on that vacation, you will need to drive rather than fly so you can bring all of your coolers full of safe food with you.

-Imagine not being able to eat out on vacation, you have to make every single meal at home. So, basic hotels are out of the question, you must rent a full house with a full kitchen. You never get a true vacation.

-Imagine planning that trip to the beach, renting that ocean front condo and you or your child can never step foot outside or onto that beach because they are selling dry roasted peanuts on the boardwalk right in front of your condo and the sand is littered with peanut shells.  All your child wanted was to go to the beach and you made that happen but your child could only look at that beach through the window!

-Imagine going to a restaurant that says that they can accommodate your child’s allergies and watching them get gravely ill after eating their first bite.  For many this includes administering epinephrine and an ambulance ride to the hospital and a several day stay in that hospital. You then feel guilty for trusting that restaurant or waiter or chef with your child’s life.

-Imagine reading and inspecting every food label, calling food manufacturing companies and being assured the food is safe.  You feed the food to your child and end up calling 911 because it was not safe after all.  How do you forgive yourself when you know it is not your fault, but you are there to protect your child…how do you process this and live with it?

-Imagine sending your child to school and panicking every hour of the day wondering if your child is safe, from food or from bullying; even when they are grown and in college!

-Imagine the hours spent educating family, teachers, nurses and other students at school about the seriousness of food allergies, celiac disease and autism.Or volunteering to mentor parents of those who are newly diagnosed.  Exhausting!  Then you still have to be nice to the doubters or those who don’t care how serious your child’s allergy is. Frustrating!

-Imagine telling  your family about your child’s shellfish allergy and a family member dangles a shrimp in front of the child’s face on Christmas Day.  Do you still talk to that family member?

-Imagine telling your family about your child’s Celiac Disease and they think that it is okay to give them “just a little bit” and they say things like “he/she does not look sick” or “are you sure it was the “gluten” making them sick?” (Like you and your child don’t know when they have ingested gluten…others know when they have a cold, the symptoms are easy to recognize each time you get a cold; the same is true with Celiac Disease and a gluten reaction.)

-Imagine trying to explain to your family or strangers that your child is not being a “brat”; and that he/she has autism and is having a difficult time adjusting to this new environment. Imagine dealing with the disapproving and incriminating stares from strangers and not ever being able to lose your composure.

-Imagine sitting across from your doctor and hearing him tell you that you have breast cancer and your first thought is “OMG, how will I safely feed my food allergic child while going through this?” (You know that well meaning neighbors and friends can’t bring meals that are safe for your child when you are going through chemo.)

These mother’s wear a halo and a cape that is invisible to many, but not to me. I see the invisible super hero emblem that you display proudly each time your child needs to eat. These mother’s are truly super heroes! I am not saying that these mom’s love their child more than other moms; what I am saying is that they spend more time actively loving, worrying and preventing tragedy than the average mother. These mothers and their children truly inspire me and I am thrilled to be able to allow them some time to relax and feel the difference when dining at One Dish Cuisine Cafe, Deli & Bakery. This is why I am committed to opening more safe havens for these children and their parents.

Mother’s Day would not be complete without honoring the other great mothers in my life. My mother-in-law, Pat, raised a wonderful son, David, who is committed to welcoming folks back to the table with me here at One Dish Cuisine.  Pat’s weekly presence and support mean so much to me and I am so grateful to have her love and support and to have her in my life.

Additionally, my daughter-in- laws are wonderful mother’s to my two grandsons! I am so thankful for their monetary sacrifices and the decisions they both made to stay home and be with their child and bringing them to the cafe so I can see them! Truly, incredible.

My ex mother-in-law, Emily, is still a support system to this day! She is still that safe port in the storm for me when I need to talk with someone and she always gives me the courage to stand up and dust myself off and move on when things go wrong. I am so grateful that we have maintained such a wonderful relationship and I have learned so much from her and am happy to still call her my friend.

For my sisters and sister-in-laws; who show their children the love and support that they need; unique to their own circumstances. Each of you inspires me with the challenges that you handle so well each and every day.  Thanks for being great moms and great sisters.

My mother, Vickie, who had seven children in eight years (no twins), buried two of them when they were young and still managed to pick herself up each day and  chose to see the “good” in her situation. Not only has she financially supported One Dish Cuisine but she taught me that loving and giving is the most important thing a person can do on this earth and when you combine that with following your passion; then you will feel complete. It took me quite a few years to get over the self induced “pity party” that I was having about my own situation, but thanks to my mom, I finally saw the light and understood that the food I was making for myself could also serve the needs of others.  I am happy to be able to live with passion, purpose and sleep well at night. I have never worked so hard or so many hours in my life and I don’t have any personal time for friends or family, but my mother taught me that this type of sacrifice is okay; knowing that what I am building here is so important for so many in need. I am so grateful that she taught me not to be afraid of challenges and that faith, love and giving are the most important gifts that I possess and that I have the ability to use these “gifts” every day; these gifts that I have don’t cost me anything when I give freely.  I am thankful for my mother never giving up on me, she is truly my hero.

Happy Mother’s Day to all of you great mothers, you all are Super Heroes!

I publish this each year.

 

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

 

Non Hybridized Wheat and Spelt

Okay, the subject on “non hybridized wheat and spelt” comes up time and time again so I thought I would set the record straight for all of you.  I had a good laugh last week.  At first it was not funny..I was actually concerned. So here is the story and I am going to use this as a learning experience for you all.

A customer came in saying she had to eat gluten-free (GF). She went on to say that she eats healthy GF breads made with Spelt; also known as Farro or Dinkel.  She wanted to make sure my breads contained this “healthy” Spelt in them.  I think she wanted to educated me about healthy GF eating. I explained to her that we are a GF Facility and that Spelt is NOT Gluten-Free and not allowed in my facility!  She  was stunned.  We were very busy and I was going to try to talk with her further but she just walked out. Maybe she was embarrassed because her husband looked stunned when I said Spelt was not GF.

A person with Celiac Disease (CD) or Gluten Sensitivity (GS) or Wheat Allergy cannot eat Spelt and cannot eat Non Hybridized Wheat when they are traveling in Europe!  I hear so much garbage about this from customers and people on the internet.

Spelt/Farro/Dinkel is gluten. Non Hybridized ancient grains are just as toxic to a Celiac as the modern grains! PERIOD.

There are nuns in Europe producing “GF” Communion Wafers with non-hybridized wheat that they are saying is Celiac Safe.  Wrong. It is testing at 80 ppm….it is not safe folks! There is a safe GF Host out there gang. If your church won’t get it, you can choose to abstain! (I have done several posts on this)

No, I don’t take communion at church and I think GOD is okay with that decision. I could take communion and be sick for ten days and not be able to supply safe meals to those with CD and Food Allergies.  OR    I can skip communion and continue helping others suffering from CD and FA)  Mmmmm, this decision is “no brainer” for me and I don’t think there is a GOD who would hold this against me.

Eating Ancient Grains in Europe: I have heard gluten sensitive people say they went to Europe and ate “ancient non-hybridized wheat” and drank beer and they were fine. Really?  A Celiac would not do this.  So, to the GS folks who do this; maybe you just felt great because the food is so much fresher and not filled with junk and preservatives like it is here so it can sit on a shelf or a sidewalk and remain unchanged for a year!

food-festivals

Modern Wheat Breeding Does Not Contribute to Gluten Toxicity! (ie, the breeding of modern wheat is not what is causing CD or GS or allergies)

-Stay safe and don’t believe everything you read on the internet.

-Don’t believe that GF Cheerios are really GF.

-If you have CD, GS, Wheat, Rye or Barley Allergies, you should not eat Spelt,  Ancient Grains, or “GF Cheerios”. Period! (lots of posts about Cheerios on my blog)

http://naturalsciencenews.com/2016/12/13/modern-wheat-breeding-practices-do-not-contribute-to-gluten-toxicity/

Father of 3 Food Allergy Kids Created App to Find Allergy Friendly Restaurants

AllergyEats is the leading web based guide to finding allergy-friendly restaurants nationwide. I had the pleasure of interviewing Paul Antico. He shares why he founded the site and how he handles dining out with three children with multiple different food allergies and how he feels mainstream restaurants respond to food allergic diners.

What inspired you to found the AllergyEats Website?

About 10 years ago, my wife and daughter were out of town, leaving me and my 2 food-allergic boys to enjoy a “guy’s weekend.”  I wasn’t as well-practiced in managing my kids’ food allergies as I am now, though I knew how to protect them (and, of course, how to use an epinephrine auto-injector).  On Saturday night, I took the boys out to eat around 7PM (first mistake – prime time).  We went to one of our “go-to” restaurants, but the wait was 75 minutes, so we moved on.  At our second “go-to,” the wait was about an hour.  Same as our third.  We didn’t want to wait that long anywhere.  Unfortunately, I had run out of “go-to” restaurants and realized that I wasn’t terribly comfortable determining on-the-fly if a restaurant could accommodate our boys or not.  We ended up driving for about 2 hours – the boys crying in the back of the car – until we ended up at a “greasy pizza joint” that had egg-free pasta and could serve both my kids.  But as I was driving, and reflecting on the many times my family has gone an hour or two trying to find a restaurant we’d be comfortable at – be it in a big city like New York or a smaller town like Lack Placid – I kept saying to myself “I wish there was a guide! I wish there was a guide!”  Being in the business world for 15 years, at that point, I realized there was an unmet need and a market of food-allergic diners and their families that really needed such a guide.  So 2 years later, when I left my job in the financial markets, I decided it was time to start AllergyEats and fill that void.

What allergies do your children have? 

I now have 5 children, 3 of whom have food allergies.  My 19-yo son has had a tree nut allergy his whole life, experiencing 2 anaphylactic events (not including the few we didn’t understand before he was diagnosed – we got lucky!).  My 16-yo daughter has no food allergies.  My 14-yo son currently has allergies to tree nuts and sesame.  He has outgrown eggs entirely – baked and raw – and even outgrew peanuts.  He also has EoE (eosinophilic esophagitis) that reacts to dairy.  My 9-yo son has no food allergies.  And my 7-yo daughter has had an egg allergy her whole life, with – so far – no sign of outgrowing it.

What is the main goal of the AllergyEats website and app?

There are two primary goals of AllergyEats.  The most important, of course, is to provide a valuable tool to the food allergy community that hopefully makes the dining out process easier and more comfortable by providing them with crowd-sourced information showing which restaurants have been better choices than others for food-allergic diners.  The secondary goal is to reward those restaurants that make the effort to properly accommodate our community and thus incent other restaurants to take the appropriate steps themselves.

What is the biggest challenge that you see facing people with food allergies who want to dine out?

The biggest problem is accepting that there is ALWAYS risk – no restaurant is perfect (though One Dish Cuisine may cause me to re-think that) – and making the decision about whether you can accept that or not.  It’s not easy – anaphylaxis can be terrifying, even when you know you have your epinephrine with you.  Of course, you want to minimize your risk by choosing an appropriate allergy-friendly restaurant, which is where the AllergyEats app and website come in.  And, most importantly, YOU have to do your part by: a) never dining out without epinephrine, b) ALWAYS disclosing all your allergies to your server (and possibly the manager or chef), and c) visually inspecting your food as best as possible before eating it.  I’ve found that the “bad events” that happen at restaurants usually involve a breakdown of responsibility by BOTH the restaurant and the diner.  We need to take care of our end of the bargain, so those 3 points above are critical.

Are mainstream restaurants taking food allergies more seriously than they have in the past?

Absolutely.  It’s becoming harder and harder to ignore with so many restaurant diners disclosing food allergies, and even the stingiest of restaurants/chains will eventually understand the spending power of the food allergy community and those they dine with.  I find that smaller, nimble chains seem to be on the front-end of the wave.  Many independents are there too.  The laggards tend to be larger chains, though that is by no means universal.  AllergyEats publishes a list of the Top 10 Allergy-Friendly Restaurants in America each year (coming at the end of February this year), and you can see that there are large chains that do “get it”, though the average score – from AllergyEats users themselves – is generally much higher for the smaller chains.

What are the biggest obstacles a restaurant has to overcome if they want to provide allergen safe meals?

The biggest obstacle is also the simplest – commitment.  It truly is that easy.  Whether the owner of an independent restaurant or the CEO of a chain, that individual’s attitude toward accommodating food-allergic diners will set the tone for all employees.  The training is easy.  The financial burden is minimal.  The disruption to operations in making appropriate changes is almost nil.  So it all comes down to commitment.  Find me an owner who cares about food allergies and I’ll show you an allergy-friendly restaurant.  The reverse is also true.  Find me a CEO who pooh-poohs food allergies and I’ll show you a chain that isn’t safe for our community.

Is there a way for mainstream restaurants to be trained in handling food allergies?

Absolutely.  There are very basic programs online that, while they won’t make a restaurant very allergy-friendly, they will incrementally increase the knowledge of a restaurant’s staff.  But there are also bigger, all-encompassing programs as well for those restaurants that are ready to make the all-in commitment.  The one that is making the most headway is AllerTrain.  AllerTrain does on-site training and well as train-the-trainer programs for larger chains.  They are training restaurants, colleges, entertainment venues, and more.  They do have online modules as well, but the most comprehensive training is provided face-to-face, generally onsite.  Outside of AllerTrain, there are independent trainers as well.  And many restaurants develop their own programs from the knowledge or experience of key employees.

How many times a week do you dine out with your allergic children?

We don’t shy away from dining out.  When we’re home, we usually go out about once every two weeks, though about once each week in the summer.  However, we travel a lot.  We have family in 4 different cities, we like to vacation, and our kids – like so many others – are involved in a ton of activities, some of which have us doing overnight travel.  We also now have to visit our oldest son in college!  When we travel, we eat out most nights.  So I guess my best estimation is that we eat at restaurants probably 50 times a year.  We probably order in another once per week.  And while we certainly have our “go-to” restaurants at home and in some of our destinations, we do like to explore and gain some variety where possible.  So, using AllergyEats of course, we find new favorites as we go.

How do you handle vacations with three of your five children having food allergies?

We’re old pros at this!  After 19 years, we’ve developed a routine.  Really, though, we generally do not have problems dining out.  Using AllergyEats, we do our homework in advance.  Sometimes we have to take a flyer on a restaurant that’s not yet rated on AllergyEats.  Either way, we periodically come across a restaurant that we just don’t feel comfortable can keep our kids safe and we politely leave before ordering.  But that’s rare and we no longer have to search for an hour or two to find a restaurant like we used to.  We find most restaurants want to accommodate our food-allergic kids, so we just have to work with them regarding what they have, what is safe, and how to prepare it safely in the kitchen.  I’m happy to say that in all our years of travel and dining out, “the system” (the dual responsibility of the restaurant and ourselves) has only broken down once, exposing my middle son to dairy.  And the mistake was 100% on our end.  Certainly, other restaurants have made mistakes, but not without either us or them catching the errors in time.  So think about it – our family has had hundreds of meals from restaurants without a single mistake on their part that hasn’t been caught!  Of course, our epinephrine auto-injectors are with us wherever we go and we usually have some basic food like soy nut butter and crackers in our room for a quick, safe snack.

How do you educate schools to keep your children safe?

Fortunately, I haven’t had to be a pro at this.  The primary/middle school my kids have attended from age 3 through 8th grade, Inly School in Scituate, MA, is extremely allergy-friendly.  They won an award from FAAN (Food Allergy and Anaphylaxis Network), one of the precursors to FARE (Food Allergy Research and Education), in 2011 for food allergy excellence.  All staff members are diligently trained and the processes and procedures in place are great.  The school has become known for this and actually brings in some students BECAUSE they are so allergy-friendly.  As the kids have moved onto High School and now College, we’ve found that these schools generally have a program and set of rules in place.  They aren’t as safe as Inly School, by any means, so our kids have to be smart about keeping their epinephrine with them, asking the right questions, taking proper precautions – basically, they have to do what they’ve learned and seen my wife and I do for all these years.  And so far, so good.

How do you handle it if there is an accident and one of your children needs to use their Epi-Pen?

Fortunately, in all these years, we have only had 2 incidents that needed an epinephrine injection.  The first was a tricky delayed onset reaction.  I say tricky because our kids react to many of their allergies without anaphylaxis, needing only Benadryl to ultimately feel better.  In this case, my oldest (with a tree nut allergy only) ate a chocolate ball at a nut-free event.  His throat started to itch, as it does when he has non-dangerous oral allergy syndrome from exposure to some fruits, but this one was a little worse.  Regardless, with us thinking the food was nut-free and the signs pointing to OAS, we went with Benadryl.  Unfortunately, the symptoms weren’t improving.  One could definitely say we should’ve used the auto-injector then (if not earlier), but we actually tried another dose of Benadryl.  Same result.  I prepared my son until he eventually made the decision for us.  “Hit me.”  Boom.  Immediately, he felt better.  (Turns out he had a biphasic reaction – a second anaphylactic event in the hospital – so we were very lucky we finally took the appropriate action.)  We believe, by the way, that the chocolate ball was cross-contamination with tree nuts.  A year later, while teaching at a farm camp, this same son thought he might have accidentally ingested something with tree nut residue in it.  He wasn’t sure, but was feeling symptoms.  Realizing how easily and quickly the epinephrine auto-injector worked the last time, he didn’t hesitate to use it himself.  In hindsight, and while we can’t be sure, I don’t think he was having an allergic reaction – I think anxiety symptoms made it hard to tell.  Yet, either way, he did the right thing.  When in doubt, use the epinephrine.  It is generally considered a very benign treatment that can rarely do any harm to you.  And do not wait as long as we did in that first event.  Anaphylaxis can spiral out of control quickly, even if delayed, and getting epinephrine in the body early is critical.

Do you blame yourself when an accident happens? What emotions do you go through?

Of course I do.  Isn’t that true when anything goes wrong with one’s kids?  In fact, forgetting food allergies for a second, I’m constantly wondering how ALL my past and current actions are affecting the lives of my kids.  (I hope that just makes me a good father and not a lunatic!)  However, I understand that I’m human and mistakes happen, so while I feel terrible and guilty, I apologize to my son or daughter and move on.  They understand that these things happen too.  It stinks, but it’s life – and we all need to accept it.

What would be the ideal dining out situation for you and your family and do you ever think you will feel totally comfortable dining anywhere.

Fortunately, we’ve had many, many very comfortable restaurant meals, but that is also a product of our long experience.  We’ve been doing this long enough to know the best questions to ask and to “read” the staff’s responses well (verbal and physical).  In the optimal case, we would find a restaurant known for their ability to accommodate food-allergic diners (yes, you know where we find them), have a conversation with the staff that shows a real proactive zeal for wanting to satisfy us, and have them proactively reaffirm all the steps they took when the bring the meal (separately or clearly marked) to our table.  That all said, we do still have some “on edge” experiences where we believe the restaurant can accommodate us, but we’re not entirely secure with their food allergy knowledge.  In those cases, we usually have to walk through their menu and their process in the kitchen step by step to ensure that – even if they don’t have broad food allergy knowledge – they will be able to make safe meals for our kids.  Our epinephrine is always with us!

Do you think the general public will ever have a thorough understanding and respect for the serious nature of food allergies?

I hope they never have to – because that would mean a cure is found before broad public acceptance has a chance to take place!  But realistically – because unfortunately we have to accept the fact that a cure is nowhere in sight – yes, I do think the general public will eventually have a healthy respect for the seriousness of food allergies, if not a broad understanding.  Let’s face it, most people in their 40’s and younger today probably know someone with food allergies.  And for the younger cohort in particular, once they actually get to know someone with food allergies, they tend to be compassionate and accept the seriousness of food allergies.  Further, recognize the surge in food allergies that has taken place in our kids over the past 20 years.  Logic would suggest that almost all people 20 years old or younger have grown up with or gotten to know friends with food allergies.  Our kids are more accepting than our older generations; thus, I think the trend is our friend and broader acceptance is taking place every day.

What do you see as the biggest obstacle to widespread respect and understanding of food allergies?

Time.  The younger generation gets it, and each day they become a larger part of the population.  The older generations are also coming into contact with food-allergic individuals more and more each day, with many of them accepting it as well.  I’ve seen the acceptance improve dramatically over my family’s 19 year journey.  It will continue.

What advice can you give to parents of a child with newly diagnosed food allergies?

Do your best not to panic by recognizing that millions and millions of parents have been in your shoes.  Yes, this can be terrifying – we all love our kids more than ourselves – and it can feel overwhelming, but as you start this journey you’ll soon learn that it’s manageable, even if not always (or ever!) comfortable.  Each step has it’s challenges – shopping for safe food, eating food made by a family member or friend, dining out, starting your child in school, going on vacation, having your kids eat out with friends, eventually going to college, etc. – but you take each of these steps one at a time.  Support groups like Kids With Food Allergies Foundation (www.kidswithfoodallergies.org) can be a big help in the beginning, as can local support groups, and online forums.  Of course, finding friends and acquaintances who have been down this path can be extremely helpful as well.  Realize too that, as you proceed down this path, you need to teach your kids all along the way, preparing them for their ultimate independence.  Of course, rule #1?  Never find yourself without epinephrine nearby.

What do you see in the future for AllergyEats?

For now, our focus continues to be on attracting new visitors to our app and website, and building our database of ratings.  A lot of people in this world aren’t online raters in general (I’m one of them), but we have to impress upon these individuals that our food allergy community is all in this together and that each new rating someone adds on AllergyEats makes the app and website even more valuable for future food-allergic diners.  (And yes, I AM a rater on AllergyEats, of course.)  Like many other small businesses in the food allergy space, we’re also trying to execute a business model that can generate a profit (or at least breakeven) since we’re not a non-profit and can’t attract grants and funds in the same way.  If we’re successful in doing so, the opportunity for AllergyEats to expand both vertically and horizontally is awesome.  Our platform lends itself to many, many other options.

I am so grateful that Paul has developed this site to help us find allergy friendly dining spots. Please check out the site!  Click Here for AllergyEats website

paul-antico

Cheeri-Oh-Nos, Not GF Says Canadian Celiac Association!

In the summer and fall of 2015, I spent a lot of time blogging about the sloppy processing and testing of General Mills “Gluten Free” (GF) Cheerios. Not only are they not using certified GF Oats, they are using sub-par testing methods to make their”GF” claim! Hence the nickname that I gave them; “Cheeri-Oh-Nos”! The Canadian Celiac Association has just advised those with Celiac Disease or Gluten Sensitivity not to eat them.

What happened and why have I been perpetually banging my head against the proverbial brick wall for over a year? How can this be so?  You just won’t believe it, so here is the re-cap and update.

Basically, the problem is that General Mills (GM) is using contaminated oats and “shaking” them in order to get off the offending wheat, rye and barley. Then they are using a testing method known as “means testing” to get their final ppm. A product must test below 20ppm to be called Gluten Free. So, if they make a batch of cheerios, they will  take out several samples…if one sample is 21pm, one is 80ppm and one is 5ppm..they would combine those to get the actual parts per million. Then they would keep adding in batches at lower ppm to get their 20ppm score. That is dangerous because in the end, you can mix them together over and over but there is still a high likelihood that some or many boxes will test higher than 20ppm.  The big problem is that they were not testing the final batch or boxes.

This practice resulted in many Celiacs getting sick and complaints to the FDA. Eventually GM had to recall 1.8 million boxes of GF Cheerios.  How can this be? Well, it is simple folks, the FDA does not mandate testing or a particular method for testing..they suggest that each company regulate themselves.  Yup, GM is NOT looking out for those with Celiac Disease or allergies to wheat, rye and barley!

A regular (celiac) customer came in last month and told me that his blood levels were elevated and he was having stomach problems and could not figure out why because everything he is eating is GF. He told me he would be going in for new endoscopy and biopsy in the next few weeks. I asked him, to tell me what he was eating for breakfast and he said “GF Cheerios”.   I asked when his issues started…he said around that time. He was shocked when I filled him in on the happenings. I directed him to my blog articles from last year and suggested he also do a google search and read what Gluten Free Watchdog has been saying and also suggested he remove the “GF” Cheerios and see how he does.

If you are a Celiac, Gluten Sensitive, or have an allergy to wheat, rye or barley; you are playing a game of Russian Roulette if you are eating GM’s GF Cereals.

Many of us have been outraged that the Celiac Associations in the US have not been more vocal about this. Last month the Canadian Celiac Association recommended that those with Celiac Disease or Gluten Sensitivity not eat them.  Gluten Free Living Magazine just wrote an article about this. Click Here to Read Article

bang head here

 

 

Study: Gluten Sensitivity; “Celiac Lite Disease”, My Genetic Testing & More

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.

  1. 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 have shown that the intraepithelial lymphocyte (IEL) count and/or the presence of anti-transglutaminase (TG2) deposits in the mucosa are biomarkers of celiac disease. In the present study, these tissue celiac markers were present in around 55% of patients at inclusion, despite their being on a gluten-free diet, suggesting a ‘celiac lite’ disease.”

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

HLA Testing graphic

 

10 Signs of Thyroid Problems

So many customers come in and ask me about my thyroid and if I have thyroid disease as well as Celiac. Well, it should not be a surprise that Thyroid Problems are often missed by doctors. Often for a Celiac, it is a double whammy…because often the Celiac and Hashimoto’s Thyroiditis go hand in hand and both are often missed…leaving a person miserably ill for a long time! If you are a Celiac and carry gene HLA DQ2, and have a thyroid issue, you most likely have Hashimoto’s Disease (autoimmune disease; under-active thyroid caused by the immune system attacking the thyroid).

Thyroid panels are not part of a normal CBC that are run by doctors.  Often, if a doctor runs a thyroid test, they don’t always run the tests that determine Hashimoto’s Disease; autoimmune thyroid disease.

I know first hand; I had both of the above issues and went un-diagnosed for far too long.  I was complaining of symptoms for about five years but my general practitioner never tested me.  Finally, after experiencing infertility and miscarriages, the reproductive endocrinologist ran the tests and it still took me 8 weeks to get into the specialist he referred me to.  I felt like I was slowly dying; and I was because the thyroid affects your entire system!

One of my favorite on-line docs is Doctor Amy Myers and she is all about the Thyroid.  She recently wrote an article about symptoms, what lab tests must be run and the average normal ranges as well as the need for the doctor to listen to the patient and how they are feeling. Boy did it ring true for me. Below is my story about my diagnosis and how long it took to get my thyroid up and running again and a link to Dr Myer’s article. I hope this is helpful to you or a loved one.

I got lucky, after going un-diagnosed for about 5 years, I was referred to a wonderful endocrinologist in Bethesda, MD, who listened to me after I was diagnosed.  I sat across from him on Christmas Eve 1998 barely functioning and told him that I felt like I was slowly dying. He said that he was stunned that I was even moving; my levels were so bad.  He said, that his instinct was to put me right in the hospital, but the treatment will still be the same, a little thyroid hormone at a time and it would take many months to get me up and level. He gave me the choice, admit me to the hospital or go home. I had my entire family coming in town from New England and did not want to be in the hospital. He told me that I needed to let my family members know that they should be tested for Hashimoto’s Disease and sent me home with the lowest dose of thyroid hormone; .25 for six weeks. (family members got checked and 1 has Hashimoto’s, two have under-active thyroid)

Leaving his office, I forgot to get my parking garage ticket validated and had no money to pay. I hurried back to the doctor’s office, but they were already gone. This was way before you could pay with a credit card. I had to beg the attendant to let me go and promised I would come back with the money.  I made it home; completely exhausted and my father braved the Christmas Eve traffic and went back to Bethesda from Brookeville to pay for my parking. It was only 14 miles but a 40 minute trip each way, on a good day.

It took over a year with testing every six weeks to get my thyroid levels up to normal.  The doctor would say “the numbers looks normal, but how do you feel?” and I said..”I can only stay awake and functioning until 11am”.  He increased the dose, warned me about symptoms of too much thyroid hormone, scheduled me for blood work and follow up in 6 weeks. I went back and he said “everything looks normal..but how are you feeling?”  I said. “the increased dose helped, now I can stay functioning until 1pm”. He said ok, “we will increase it again!” I got the warning again about symptoms of too much thyroid hormone and was on my way.  Again, six weeks later, I was back for my check up and he said, “Your levels look good, how are you feeling?”  I said; “great, now I can stay up until 4pm!”  This went on until I could stay awake and functioning until 11pm.

My final dose was .125. (the generic brand, Levothyroxine, does not contain milk or gluten; had to investigate and figure that out on my own after getting very ill while taking Synthroid). Finally, I could function all day and into the night and finally; my hair stopped falling out, my skin stopped cracking and peeling off me, the swelling in my feet went away and my memory got a lot better! I began to lose the weight that I had put on without any explanation.

I am so glad that my Endocrinologist, Dr. Robert Vigersky, listened to how I was feeling..not just the numbers! Unfortunately for me, he left private practice and went back to Walter Reed.  The patients at Walter Reed are lucky to have Dr Robert Vigersky as the head of the Diabetes Institute. He practices what Dr Amy Myers says; “you have to listen to the patient, not just the numbers”. Please advocate for yourself..and if your doctor does not listen to you, find one who does, I had almost all of the symptoms below.

10 Signs of an Underactive Thyroid:

1. Fatigue after sleeping 8 to 10 hours a night or needing to take a nap daily

2. Weight gain or the inability to lose weight

3. Mood issues such as mood swings, anxiety, or depression

4. Hormone imbalances such as PMS, irregular periods, infertility, and low sex drive

5. Muscle pain, joint pain, carpal tunnel syndrome, or tendonitis

6. Cold hands and feet, feeling cold when others are not, or having a body temperature consistently below 98.5

7. Dry or cracking skin, brittle nails and excessive hair loss

8. Constipation.

9. Mind issues such as brain fog, poor concentration, or poor memory

10. Neck swelling, snoring, or hoarse voice

To learn more about normal levels, tests that need to be run in order to diagnose Thyroid Disorders and Hashimoto’s Disease, Adrenal Glands, etc;  Click Here for More from Dr Amy Myers

Today Show Makes Fun of Nut Allergies & Epi-Pens

Well, considering that this is food allergy awareness week; I was even more horrified to see this clip from the Today Show. Matt and Al not only make fun of food allergies in this clip, they go so far as to bring in the Epi-Pen. I can’t help but wonder why they decided to make light of nut allergies and Epi-Pens.  They easily could have made fun of sugary or high carbohydrate items and then made light of the insulin that a diabetic needs.  Why is this happening? At the end of this post, I have symptoms and a great photo you can use to raise awareness.  See video clip below:

click here for short clip from Today Show

Quite frankly, I think this is happening because food allergies are not taken seriously and the same goes for Celiac Disease.  This is seen all the time when people make fun of the gluten free diet. This is the first time where I saw two grown men literally make fun of nut allergies and epi-pens. Everyone is entitled to free speech…and I defend that right, therefore, I don’t take this personally.  What Matt and Al said in this segment says more about them then it ever will about those with food allergies.  However, that being said, it is a bad example to set for others and I am worried that food allergies will continue to be marginalized. Is it because there was no sign on the buffet that said “contains gluten” and that is why they did not go after the gluten free diet? I have some insight into why I think this is happening.

In our gluten and allergen free cafe, I see people coming in every day claiming a gluten allergy and claiming food allergies.  It is work to try to figure out what we are really dealing with.  There are people who don’t like mustard so they declare it an allergy and have us shut down a kitchen line and keep everyone else waiting longer to be served. We serve them their meal without a pickle and we get an angry customer. It turns out that they just “don’t like” mustard and they wanted the pickle that is made with whole mustard seeds!  The difference is that we are equipped to deal with many allergies…mainstream restaurants are not. When I talk with other mainstream restaurant owners they say that just about every 5 tickets they are having an “allergy” flagged.  They don’t know which is an allergy and which is a sensitivity, so it causes many problems for them because they are not set up to deal with this on a regular basis.

The problem is that we have customers who come in for the first time who have minor food sensitivities or who are on an elimination diet and they claim an “allergy” too.  We have to determine what is what.  Our kitchen would need to be shut down and cleaned on every other order if we were not detectives at the front counter.  Trust me, we can usually tell the difference between food allergies and someone new with food sensitivities; but we still have to ask many questions to be sure what we are dealing with. Then, if needed,  we educate the customer about what we do and what is an allergy and what is a sensitivity.  Nothing makes us happier than when a customer comes in and says: “I may have food sensitivities and I am on an elimination diet and I need to avoid these foods right now”.  My thought bubble is : “great, and thank you for not faking a serious food allergy”.

On Mother’s Day I was talking to a nice couple from New Jersey and they said, “we knew nothing about food allergies until our child had a serious food reaction”. The awareness and the seriousness of food allergies is just not out there in the mainstream. My biggest fear is that this type of marginalization of food allergies will continue; making it harder for those with legitimate food allergies to be taken seriously.

We all have to do our part to raise awareness about the serious nature of food allergies.  We need to start in our own personal circles of influence via our facebook pages, twitter pages, schools, workplaces, etc.  Please join me and start spreading awareness today; let’s change the tide together! Below are signs and symptoms from FARE (Food Allergy Research and Education) for mild and severe symptoms. Also, it describes how a child might describe what they are feeling.

If you’re introducing a new food to your baby, keep an eye out for these symptoms:
  • Hives or welts.
  • Flushed skin or rash.
  • Face, tongue, or lip swelling.
  • Vomiting and/or diarrhea.
  • Coughing or wheezing.
  • Difficulty breathing.
  • Loss of consciousness.
  • Mild symptoms may include one or more of the following:
    • Hives (reddish, swollen, itchy areas on the skin)
    • Eczema (a persistent dry, itchy rash)
    • Redness of the skin or around the eyes
    • Itchy mouth or ear canal
    • Nausea or vomiting
    • Diarrhea
    • Stomach pain
    • Nasal congestion or a runny nose
    • Sneezing
    • Slight, dry cough
    • Odd taste in mouth
    • Uterine contractions

Severe symptoms may include one or more of the following:

  • Obstructive swelling of the lips, tongue, and/or throat
  • Trouble swallowing
  • Shortness of breath or wheezing
  • Turning blue
  • Drop in blood pressure (feeling faint, confused, weak, passing out)
  • Loss of consciousness
  • Chest pain
  • A weak or “thread” pulse
  • Sense of “impending doom”

Severe symptoms, alone or in combination with milder symptoms, may be signs of anaphylaxis and require immediate treatment.

How a Child Might Describe a Reaction

Children have unique ways of describing their experiences and perceptions, and allergic reactions are no exception. Precious time is lost when adults do not immediately recognize that a reaction is occurring or don’t understand what a child is telling them.
Some children, especially very young ones, put their hands in their mouths or pull or scratch at their tongues in response to a reaction. Also, children’s voices may change (e.g., become hoarse or squeaky), and they may slur their words.
The following are examples of the words a child might use to describe a reaction:
• “This food is too spicy.”
• “My tongue is hot [or burning].”
• “It feels like something’s poking my tongue.”
• “My tongue [or mouth] is tingling [or burning].”
• “My tongue [or mouth] itches.”
• “It [my tongue] feels like there is hair on it.”
• “My mouth feels funny.”
• “There’s a frog in my throat.”
• “There’s something stuck in my throat.”
• “My tongue feels full [or heavy].”
• “My lips feel tight.”
• “It feels like there are bugs in there.” (to describe itchy ears)
• “It [my throat] feels thick.”
• “It feels like a bump is on the back of my tongue [throat].”
If you suspect that your child is having an allergic reaction, follow
your doctor’s instructions and treat the reaction quickly.
Scroll down for a great poster you can copy and paste to your social media!
Learn more through FARE Click Here
child with food allergies