“No sex, age, tissue or organs are spared from effects of Celiac Disease”

This is the #1 thing you should listen to if you or someone you love has Celiac Disease or Gluten Sensitivity. If you have people in your life or even one of your doctors who doubt the serious nature of it, have them listen too! (link at bottom)

2/27/17: Dr Allessio Fasano from the Center for Celiac Research is interviewed by Dr Theresa Nacassio on her radio show.

He talks about Celiac Disease, Gluten Sensitivity, the Microbiome, Leaky Gut, neurological complications in the brain and Autism, ADHD, Dimentia, Depression, Skin (Dermatitis Herpeteformis), Probiotics, Fecal Transplants and more!  He even talks about the Non-hybridized wheat myth, GMO’s, pesticides and more.

“No sex, age, tissue or organs are spared from the effects of Celiac Disease….”

The interview starts at  4min and 55 seconds on the timer in the link. You can fast forward through commercials too.  Dr Nacassio also has lots of other links to Dr Fasano’s interviews and talks on Celiac Disease up on her site.

Click Here

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:

  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

 

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 8^th 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

Celiac Awareness Month: 300 Symptoms

The average time it takes to be diagnosed with Celiac Disease is 6-10 years!  Why is this so?  I believe it is because people (and many doctors) don’t know the 300 signs and symptoms. Another reason is that people are going on a GF Diet before getting a diagnosis and many just refuse to be tested. If you  have a family member or mother, father, brother, sister, grandparent, cousin, etc with Celiac Disease, you should be tested. Not everyone has the same symptoms.

Below are the 300 signs and symptoms of Celiac Disease. A celiac must be strict with their diet.  Just a crumb or a trace sets the immune system into havoc, which can lead to serious long term complications. Those who go on a GF Diet without Celiac Testing often assume that they are just gluten intolerant. They are at risk because they are not strict like a diagnosed Celiac would be. Therefore; they continually expose themselves to gluten via cross contamination and cheating. This leaves their immune system in attack mode and opens the person up to serious autoimmune complications!

The 300 Signs and Symptoms are courtesy of : “Recognizing Celiac Disease” by Cleo J. Libonati. (Gluten Free Works) way back in January of 2007. We have a copy of this book here in our library at our cafe, deli and bakery. (Link at bottom of list)

Blood System Symptoms

Abnormal levels of blood components and quality of blood cells and plasma, detected by blood studies ordered by a doctor.

• Anemia, Folic acid
• Anemia, Iron
• Anemia, Vitamin B12
• Anti-Endomysium Antibodies (EMA)
• Anti-Gliadin Antibodies (AGA)
• Anti-Tissue Transglutaminase Antibodies (tTG)
• Associated Autoimmune Antibodies
• Bone Alkaline Phosphatase Enzyme, Elevated
• Calcium, Low
• Cholesterol, Low (below 156)
• Coagulation Factors, Low
• Copper, Low
• Hemochromatosis
• Glucose, Low or elevated
• Homocysteine, Elevated
• Hyperprolactinemia (elevated prolactin hormone)
• Hypoprothrombinemia
• Idiopathic Thrombocytopenic Purpura
• Liver Enzymes, Elevated
• Macroamylasemia
• Macrocytosis
• Macrolipasemia
• Magnesium, Low
• Neutropenia
• Phosphorus, Low
• Plasma Proteins, Low
• Potassium, Low
• Prolonged Prothrombin Time
• Transient Erythroblastopenia
• Zinc, Low

Body Composition Symptoms

Disorders of the body as a whole.

• Anorexia (Poor appetite)
• Appetite, Increased
• Cachexia (Wasting of the body)
• Loss of Vitality
• Obesity
• Weight Gain, Unexplained
• Weight Loss, Unexplained

Cardiovascular System Symptoms

Disorders of the heart and blood vessels.

• Angina Pectoris
• Aortic Vasculitis
• Atherosclerosis
• Cardiomegaly
• Coronary Artery Disease
• Easy Bruising (Ecchymosis)
• Hypertension
• Idiopathic Dilated Cardiomyopathy
• Nosebleeds, Unexplained

Digestive System Symptoms

The following symptoms in this section may be present alone or in any combination in celiac disease.  They result from inflammation, damage,and interference with normal function caused by gluten exposure in the digestive tract itself and/or nutritional deficiencies.  As you see, problems can develop not only in the small intestine where inflammation can be intense, but also in other areas such as mucosal tissues of the mouth, esophagus, stomach and colon.

• Abdominal Distention (Bloating)
• Abdominal Pain
• Adenocarcinoma of the Small Intestine
• Aphthous Ulcers (Canker sores in mouth)
• Autoimmune Cholangitis
• Beta Casein Enteropathy (Cow’s dairy intolerance similar to celiac disease)
• Bleeding, Unexplained
• Cancer of the Esophagus
• Cancer of the Pharynx
• Candida Infections
• Carbohydrate Malabsorption
• Cheilosis (Red lips, cracking/ oozing at corners of mouth)
• Colitis, Collagenous
• Colitis, Lymphocytic
• Colitis, Ulcerative
• Colonic Volvulus (Loop of intestine twists causing strangulation of intestine)
• Constipation
• Constipation Alternating with Diarrhea
• Crohn’s Disease
• Defective Tooth Enamel (Yellow, white spots, missing enamel)
• Delayed Gastric Emptying (Early fullness after eating)
• Diarrhea, acute (Also called celiac crisis)
• Diarrhea, chronic
• Duodenal Erosions in the Second Part of Duodenum (Small ulcers)
• Dysphagia (Difficulty swallowing)
• Edema of Small Intestinal Lining
• Esophageal Small Cell Cancer
• Esophageal Motor Abnormalities (Poor muscle activity/coordination)
• Gas
• Gastric Ulcer (Stomach ulcers)
• Gastric Ulcerations
• Gastritis, Collagenous
• Gastritis, Lymphocytic
• Gastro-Esophageal Reflux Disease (GERD)
• Gastro-Intestinal Occult Bleeding (Blood in stool that is not visible to naked eye)
• Gluten Sensitive Enteritis
• Gums bleeding/ swollen (Purplish in adults/ red in children)
• Heartburn
• H. Pylori Bacter (Infection of the stomach)
• Impaired Gall Bladder Motility
• Irritable Bowel Syndrome
• Jejunitis, chronic
• Lactose Intolerance (Gas, bloating, loose stools from milk)
• Laryngospasm
• Leaky Gut Syndrome
• Lymphoma
• Malabsorption of Nutrients
• Maltose Intolerance (Gas, bloating, loose stools from maltose, a simple carbohydrate)
• Nausea
• Oral Mucosal Lesions (Mouth lesions)
• Plummer-Vinson Syndrome
• Post-cricoid Cancer
• Primary Biliary Cirrhosis (Bile backs up in liver)
• Primary Sclerosing Cholangitis (Scarring of bile ducts in liver)
• Small Bowel Intussusception (One loop of intestine slips into another)
• Small Intestinal Bacterial Overgrowth
• Steatorrhea (Pale, smelly, floating stool hard to flush or sticks to toilet)
• Sucrose Intolerance (Gas, bloating, mucous in stool from sugar)
• Tongue (Beefy, red, smooth, burning)
• Tongue (Fiery red, smooth, swollen, sore)
• Tongue (Magenta, swollen)
• Tongue (Pale, smooth, burning)
• Vomiting

Glandular System Symptoms

Disorders of the glands.

• Addison’s Disease (Adrenal gland failure)
• Autoimmune Hepatitis
• Autoimmune Thyroiditis (Hypothyroidism)
• Diabetes Mellitus Type I
• Diabetic Instability
• Gastro-Intestinal Complications of Type 1 Diabetes
• Grave’s Disease (Hyperthyroidism)
• Hepatic Granulomatous Disease
• Idiopathic Hypoparathyroidism
• Non-Alcoholic Fatty Liver Disease
• Pancreatic Insufficiency
• Parathyroid Carcinoma
• Primary Hyperparathyroidism
• Secondary Hypoparathyroidism

Immune System Symptoms

Disorders of antibody production.

• Allergic Rhinitis
• Antiphospholipid Syndrome
• Asthma
• Autoimmune Disorders in Celiac Disease
• Autoimmune Disorders in Dermatitis Herpetiformis
• Autoimmune Polyglandular Syndromes
• Common Variable Immunodeficiency
• Food Allergies, IgE and non-IgE Immune Responses
• IgA Deficiency
• Sarcoidosis
• Sjögrens Syndrome
• Systemic Lupus Erythematosus
• Urticaria, chronic (Hives)

Integumentary System Symptoms

Disorders of skin, hair, and nails.

• Alopecia Areata (Patches of hair loss)
• Alopecia, Diffuse (Balding)
• Cutaneous Vasculitis
• Cutis Laxa
• Dermatitis Herpetiformis
• Dermatomyositis
• Eczema
• Edema (Swelling)
• Eythema Elevatum Diutinum
• Erythema Nodosum
• Follicular Hyperkeratosis (Dry rough skin/ plugged hair follicles on body)
• Ichthyosis, Acquired
• Itchy Skin Rash
• Hangnail
• Koilonychia (Thin nails that flatten, ends progressively turning up instead of down)
• Melanoma
• Nails, Dry and brittle that chip, peel, crack or break easily
• Nails with Horizontal and Vertical Ridges/Fragile
• Nail with Rounded and Curved Down Ends, Dark, Dry
• Nails with White Spots
• Nails with Splinter Hemorrhages
• Pityriasis Rubra Pilaris
• Prurigo Nodularis (Hyde’s Prurigo)
• Psoriasis
• Scleroderma
• Seborrhea
• Thin hair
• Vitiligo

Lymphatic System Symptoms

Disorders of the lymphocytes (white blood cells), lymph nodes and spleen.

• B-cell non-Hodgkin’s Lymphoma
• Cryptic Intestinal T-cell Lymphoma (Refractory Sprue)
• Enteropathy Associated T-cell Lymphoma (EATL)
• Extraintestinal Lymphomas
• Intraepithelial Lymphocytosis in Small Bowel Samples
• Lymphadenopathy
• Mesenteric Lymph Node Cavitation
• Hyposplenism (Atrophy of spleen)

Muscular System Symptoms

Disorders of muscle structure and function.

• Hypokalemic Rhabdomyolysis (Acute, severe potassium deficiency)
• Muscle Pain and Tenderness
• Muscle Spasm and Cramps
• Muscle Wasting
• Muscle Weakness
• Osteomalacic Myopathy
• Polymyositis
• Tetany

Nervous System Symptoms

Disorders of nerves, brain and spinal cord structure and function.

• Anxiety
• Apathy
• Ataxia, Gait Disturbance
• Ataxia, Gluten
• Ataxia, Progressive Myoclonic
• Brain Atrophy
• Cerebral Perfusion Abnormalities (Poor blood flow)
• Chonic Fatigue Syndrome
• Chorea
• Cortical Calcifying Angiomatosis
• Dementia
• Depression
• Epilepsy
• Fatigue/ Lassitude
• Headache
• Inability to Concentrate
• Insomnia
• Irritability
• Migraine
• Multiple Sclerosis
• Nervous System Disorders
• Peripheral Neuropathy
• Progressive Multifocal Leukoencephalopathy
• Schizophrenic Spectrum Disorders
• Tremors
• Vasculitis of the Central Nervous System

Pulmonary System Symptoms

Disorders of lung tissue and broncheal tree structure and function.

• Bronchiectasis
• Bronchial Pneumonia
• Idiopathic Pulmonary Hemosiderosis
• Increased Pulmonary Permeability
• Increased Susceptibility to Tuberculosis
• Lung Cavities or Abcess
• Non-Response to Tuberculosis Treatment
• Pneumococcal Septicemia

Sensory System Symptoms

Disorders of sense organ structure and function.

• Bitot’s Spots (Foamy patches on whites of eye)
• Blepharitis
• Bloodshot Eyes
• Blurred Vision
• Cataracts
• Keratoconjunctivitis Sicca
• Keratomalacia
• Nightblindness
• Ocular Myopathy
• Smell, Loss of
• Taste, Loss of
• Uveitis, Bilateral
• Xerophthalmia

Skeletal System Symptoms

Disorders of bone, joints and teeth.

• Bone Fracture
• Bone Pain
• Enteropathic Arthritis
• Osteitis Fibrosa
• Osteomalacia
• Osteonecrosis
• Osteoporosis
• Psoriatic Arthritis
• Recurrent Monoarthritis

Urinary System Symptoms

Disorders of kidneys and urinaty tract structure and function.

• Hypocalciuria
• IgA Nephropathy
• Kidney Stones
• Urinary Tract Infection

Reproductive System Symptoms in Females

Disorders of organ structure and function.

• Amenorrhea (Absence of menstrual period)
• Early Menopause
• Infertility
• Late Menarche (Late start of menstrual periods)
• Premenstrual Syndrome
• Dysmenorrhea (Painful menstrual periods)
• Dyspareunia (Painful intercourse)
• Vaginitis

Reproductive System Symptoms in Males

Disorders of organ structure and function.

• Hypogonadism
• Impotence
• Infertility
• Sperm Abnormalities

Reproduction: Pregnancy, Labor & Delivery and Puerperium Symptoms

Disorders of childbearing.

• Severe Iron Deficiency Anemia in Pregnancy
• Short Duration of Breast Feeding
• Miscarriage
• Complications During Pregnancy, Labor and Delivery
• Complications After Childbirth

Zygote Development Symptoms

Disorders of chromosomes.

• Down Syndrome
• Turner’s Syndrome

Fetus Development Symptoms

Disorders of that occur before birth of the child.

• Congenital Anomalies
• Intrauterine Growth Retardation
• Cystic Fibrosis
• Spina Bifida

Child Development Symptoms

Disorders of children that occur after birth.

• Autism and Learning Disorders
• Attention Deficit  Hyperactive Disorder (ADHD)
• Cancer Predisposition in Children
• Chronic Bullous Dermatosis
• Delayed Puberty in Boys
• Delayed Puberty in Girls
• Dermatitis Herpetiformis
• Developmental Delay
• Failure to Thrive and Growth Retardation
• Fecal Occult Blood (Blood found in stool that is not visible to the naked eye)
• Glycogenic Acanthosis
• Hypotonia
• Juvenile Autoimmune Thyroid Disease
• Juvenile Diabetes Type 1
• Juvenile Idiopathic Arthritis
• Abnormal Blood Studies
• Latent Anemia in Enzymopathies of Small Intestine (Lack of enzymes produced by villi)
• Penicilllin V Impaired Absorption
• Refractory Anemia (Unresponsive to iron therapy)
• Osteopenia
• Rickets
• Short Staure
• Stroke in Childhood

Here are some other ways to look at various symptoms :

Behavioral Symptoms

• Aloofness
• Hyperactivity
• Irritability (Common in children with celiac disease)
• Impatience
• Lack of Desire to Get Things Done
• Lack of Feeling
• Restlessness
• Timid Behavior
• Violent Behavior

Neurological Issues

• Anxiety
• Apathy
• Bipolar disorder
• Depression
• Difficulty Making Friendships
• Easy Frustration and Anger
• Nervousness
• Panic Attacks
• Sense of Worthlessness
• Overly Self-critical
• Hysteria
• Hypochondria

Cognitive (Thinking) Symptoms

• Confused/ Faulty Thinking
• Confabulation
• Delusions
• Dementia
• Disorientation
• Faulty Learning
• Hallucination
• Inattentiveness
• Loss of Memory
• Loss of Immediate Memory
• Poor Memory
• Reduced Learning
• Slow Thinking
• Scattered Thinking

click here for Gluten Free Works if you would like more information

Things That Make You Go Hmmmm!

Funny Story #1: We all have those times when we hear something and can’t believe we heard it.  Then, we have no choice but to assume that the person is kidding.  Then, if that is not the case, you just play along and are left shaking your head. Our line-cook, Kendall, had just that type of experience last week. I hope this one makes you laugh too!

Kendall was working the front counter when a customer and a friend came in to eat.  The customer is gluten sensitive, and the friend had never been here before. He had no food restrictions whatsoever.  So, Kendall explained the menu to the friend (who was in his late 20’s or early 30’s), we will just call him “Tom”.  Tom decided on our Cheese Steak Sub. Kendall went over condiment choices with him and he rattled off everything he wanted on his cheese steak:

Tom: “Mayo, Lettuce, Tomato, Sauteed Onions…and can I get gluten on it too?”

Kendall: “No, I am sorry; as I explained before, the facility is free of gluten.”

Tom: “Yeah, I know; but I CAN have Gluten, can’t you just add it to mine?”

Kendall: “No, I can’t. I am sorry.”

Kendall shared a glance with the regular customer and a smile.  Kendall later told me that she could not believe it, she thought he was kidding. However, the look on Tom’s friend’s face definitely said that he was not kidding.

So, this is definitely the first time we have had a customer who thought Gluten was a condiment that you can add to a sandwich!  We all laughed until our faces hurt.  But, this is a great reminder of how little the general public knows about Gluten.

Serious Story #2:  Labeling Disaster at our Local Giant Food

A member recently posted on the Chesapeake Celiac Support Facebook page about Bourbon BBQ Sauce made by Giant…it makes a gluten free claim on the front of the label, but clearly has wheat as an ingredient in the soy sauce in it. The other issue is the Bourbon!  This is not allowed under the FDA Labeling. The law is that no ingredient that actually contains wheat, rye or barley can be used in a product bearing a GF Label, even if it contains less than 20ppm!  Hence, Gluten removed beers can no longer claim them to be GF because they can’t validate with testing that the Barley has been removed! (Schar products use a product called “codex wheat starch” that is processed to remove the wheat, so it is allowed, but they still have to say “contains codex wheat starch processed to remove wheat”.) So, you may be asking “how can this happen?”

There is no federal oversight; people can just do what they want until they get caught!  Pure ignorance on Giant’s part.  Here is the response Giant Food gave to the person who bought the product and inquired:

” Irene, thanks for raising the question about this product. Our Own Brand’s Quality Team provided this explanation. Gluten is a general name for the proteins found in wheat, rye, barley and triticale. Thus, all products with wheat, contain some gluten. The Banjo BBQ Sauce contains soy sauce, which has wheat as a sub-ingredient. The wheat that is in the soy sauce, does contain gluten, but only a very, very small amount.

FDA mandates gluten-free labeling. In order for a product to be labeled “gluten-free”, it must have <20 ppm of gluten. This product has been tested for gluten, and not only does it meet the <20ppm threshold, but it actually contains <5ppm of gluten. Thus, we can guarantee that the product meets the standard to label the product “gluten-free”, even though it does contain very trace amounts of gluten.

We understand that this could be confusing to customers, and thus, in order to be 100% transparent, the supplier is working to reformulate the product to remove soy sauce. Post-reformulation, there will be no wheat listed in the ingredient statement and should reduce customer confusion. I hope this explanation helps. Should you have other questions about any of our Own Brand products please feel free to call the toll free number and our representatives will be glad to help.”

Oh, please!  That was a big lie.  So, if this is really true, why would they be reformulating it to remove the soy sauce?  Oh, and isn’t Bourbon made with Rye? Bourbon is 51% corn and the remainder is usually malted barley comprised of rye or wheat. There is no safe way to remove the rye, or at least verify that the rye has been removed.  So, the problem is the wheat in the soy sauce and possibly rye or wheat in the bourbon.  Those are my red flags.

Basically, Giant Food is telling their customers with Wheat Allergies and Celiac Disease that they don’t care enough about you to do it right.  They are also saying that when you catch us lying to you, we are still going to lie to you when trying to explain ourselves. They brazenly assumed that we all are stupid.

You still need to be vigilant out there and you need to understand the labeling laws yourself because there is no FDA oversight because the GF Labeling Law is VOLUNTARY not mandatory!

I won’t be supporting my local Giant Food any longer.  We had this issue a few years ago with a bourbon chicken that they were selling and claiming that all of their Deli Meats were gluten free.  They did not care then and they don’t care now.  This incident has been reported to Gluten Free Watchdog.

Great job Irene. Stay Vigilant Folks!

Drink the “Drano”; Dining Out Part 2

Last week I told you all about the anxiety I was going through prior to meeting an elementary school teacher and classmates out for dinner in Annapolis.  In this post I will tell you all how I handled the situation and then touch on the stigma that we all live with when it comes to Celiac Disease, Gluten Sensitivity, or Food Allergies and how we can get the message across about how serious our illness is to the “doubters”. (We get to the “Drano” which is a blue liquid, toxic, drain de-colgger at the end)

I arrived early at the Thai Restaurant and talked with the waitress. I told her about my experience a couple of years ago.  She said they get a lot of requests for GF meals and that they use clean pans and utensils but can’t make any guarantee that my meal will be GF. Then she added that she has been there for a year and a half and has never been told that they got anyone sick.  I asked her if they see many people with Celiac Disease and she said that the majority are just making a “dietary choice” and not Celiac. I explained that I have Celiac and I did get sick last year and that a person who is just making a “dietary choice” probably would not know if they were exposed to gluten or not.  I told her that I appreciated her honesty but could not take a chance dining there. She clearly understood me and the seriousness of my situation.

My friends arrived and we enjoyed some wine. When it came time to order I just explained that I have Celiac Disease and it is not safe for me to eat there and that I planned ahead and ate at home.  Everyone understood, one “teared up” and I explained that it is no problem for me and I just want to enjoy everyone’s company. That was the end of that and we all had a great time.

I thought about how lucky I was that this went so smoothly and was so thankful that I did not hear any of the nonsense that we all have heard from family and friends at one time or another. We have all heard the term “drink the Koolaide”.  Well, I have my own term “Drink the Drano”. Below are the insane things we often hear from doubters followed by my standard answer that I give. Many of you have heard me say this in my restaurant and in previous articles. People are very “visual” I have seriously considered carrying a little plastic container of blue dish soap with me. It would be my prop of “Drano” and would come in handy in every situation. (see photos at bottom)

“Just a little won’t hurt you” – “Really? Drink this Drano first and let me know if it hurts you”

“What is the worst thing that can happen?” – “Drink this Drano and find out”

 “It won’t kill you”– “Drink this Drano and let’s see how you make out”

“I am a vegetarian; I know how you feel”– “Drink this Drano and let me know if this is how you feel when you don’t stick to your vegetarian diet”

“Are you trying to lose weight?” – “Drink this Drano and tell me if it would be worth avoiding at all costs”

“I heard that is a FAD.” – “Drink this Drano and let me know if avoiding it will be a FAD or a way to avoid illness for you”

“I read on the internet that you can have sourdough bread and wheat grown in Germany” – “Drink this Drano and let me know if you want to buy into that nonsense”

“How can you survive without bread” – “Drink this Drano and you will see why not eating bread is the only way I can survive”

“It is gluten free; there is no wheat in it.” (Chef to Celiac who was questioning why there is Barley Soup on the GF Menu..yes; it was real barley in the soup). – Run to the nearest exit!

I chose to make a stand for myself and for all of those with Celiac Disease and Food Allergies by telling the waitress that it was not safe for me to eat there!

What are your thoughts? Will you make a stand? Would the “Drano Challenge” help you when your Celiac/Food Allergies or Gluten Sensitivity are not being taken seriously?  Feel free to leave comments here on the blog.

 

 

Who in My Family Should be Tested for Celiac Disease?

NFCA, (National Foundations for Celiac Awareness) has launched a campaign to urge family members of those with Celiac Disease to be tested by launching a new campaign, ‘Seriously Celiac Disease” to urge those diagnosed to have a one on one conversation with relatives. They have a video and information to help you have this conversation (see link at the bottom).

Who should get tested?

–First-degree relatives: parents, children, and siblings. (even if they have no symptoms)

-Second-degree relatives: grandparents, grandchildren, aunts and uncles, nieces and nephews and half-siblings. (even if they have no symptoms)

Why should they be tested?

-Celiac Disease is the most variable and diversely presenting diseases you will ever come across. (Dr. Hilary Jericho, a pediatrician and celiac disease researcher at the University of Chicago’s Comer Children’s Hospital)

–“Celiac Disease has a whole variety of symptoms and can be serious if mismanaged or untreated.” (Alice Bast, NFCA)

-Celiac Disease has more than 300 signs and symptoms! (Maureen Burke) see link below.

PS: Only two of my family members have been tested.  Some said their doctors refused to test them because they had no classic symptoms. Newsflash, some people have no symptoms at all! 

http://www.celiaccentral.org/seriouslyceliacdisease/

http://www.recognizingceliacdisease.com/21.html