Where in the World is Elisabeth, the Tender Foodie?

A Note from a Tender Friend

Hi There!

My name is Sue Chaitin, a friend of the Tender Foodie, Elisabeth Veltman. Some of you know her as "Beth." You may have noticed that there haven't been many posts on this blog for awhile, and there is a reason for that. The video above is a clip from Elisabeth's past life as an opera singer. It was her last concert. The story below is about what has happened to her since then, and why we all need to become more educated about it. 

The Tender Foodie, was the start of a larger, unique business plan to help people navigate the increasingly complex road of food and disease - starting with celiac disease and multiple food allergies, and then expanding into other un-researched, but growing health issues which seem to inter-relate. Behind the blog was a business plan for "The Tender Palate" to help us more quickly get the information we need about health, exercise and the immune system, and food (like this recipe for Old Beau Steaks), and to speed up the healing journey so we all can thrive. She had to stop these plans for health reasons of her own, and before this vision was realized. She also hadn't made her personal story public, because she wanted this blog to be about the rare and wonderful experts in each area, not her specific issues alone.  She also wanted to do it without advertising, so the focus could be as objective as possible.

But now she needs our help. Here is Elisabeth's story, as written on a Go Fund Me page that I set up for her. It also has a video of her singing in her last concert. This was the first time I heard her sing, and I was absolutely floored.

I hope you will find the story helpful, and if you are able and moved by it, or have appreciated the information in this blog over the past few years, help her with some overwhelming medical expenses -- and bring her back to life.

She has told me that she will start blogging about her experience and what she is learning soon, to help thank those who are being so generous to help her. Since she can't possibly pay it back, she is determined to pay it forward as best she can.

Sincerely,

Sue

Read the original story & updates directly on Go Fund Me

Elisabeth's Story, told by Sue "Chef" Chaitin

This is my friend Beth. I met her 4 years ago through work.  At the time I didn’t know much about her.  All I really knew was that she had an amazing career as an opera singer in New York City and is now a successful writer.  She struck me right away as an honest, smart and fun person with whom I knew I would get along. She is superbly intelligent and witty. I love being with her because she never judges, she is warm, gregarious, curious, loving, and the best friend anyone could ask for.

 As time went on, I noticed some peculiar absences in our communication and I wondered why. We would call or text regularly, and then she would just drop of the face of the earth for weeks. As time went on and as she and I became closer, I learned that Beth was keeping a secret. Many of you reading this, who know Beth, may not realize the secret, because she is very good at disguising it.

My friend Beth has suffered from complications from Lyme disease for over 20 years. In fact it was so severe she could no longer perform and had to abandon the years of hard work, study and practice; and end her accomplished singing career.

Beth has been reluctant to tell her story for fear of being judged or labeled! You see, not much is understood about Lyme disease, and her story started out with many misdiagnoses: from M.S. to tumours, to the flu, to "its all in your head, sweetheart." It took enormous will and courage for Beth to fight back against the medical apathy she encountered and to continue to hunt for the reasons why her body was failing her. She went from doctor to doctor, getting sicker and sicker, until a friend encouraged her to go directly to an immunologist / infectious disease specialist.  She was so ill, she could hardly walk and almost didn't make it to the cab, let alone her appointment.  The immunologist was the first to understand the severity of her condition, and knew what to test for. The physician asked her to sit down because there would be bad news. Beth found out that she had an infection in the central nervous system which could kill her within a couple of weeks. She might survive if she took some immediate steps.  She took those steps, fought to stay on this planet, and had to radically change her life to do so. We now know that this infection is often related to Lyme Disease - the two diseases can work in tandem by suppressing the immune system, and the CNS infection most likely opened the door for the Lyme. She had loved to hike, and at some point must have been bitten by a tick, but didn't know it. This frustrating medical journey has led to long debilitating periods where she could hardly lift her head, and which still rob Beth of the ability to function on a daily basis in a way that we all take for granted.

As I have educated myself about Lyme Disease, I cannot imagine how Beth continues to soldier on as she does. While many can recover from Lyme with immediate intervention, some people end up with a chronic, devastating illness, with sometimes invisible, but far reaching complications.

If you want to get a good feel for what it’s like to live with chronic Lyme disease I suggest you watch the following video journal of another person who suffered in a similar way: https://youtu.be/So2K68r8pOY

The fact is, Lyme disease is as serious as cancer or heart disease, but it is not taken seriously by much of the medical community nor by insurance companies.

Beth’s complications continue to worsen. She is reacting to most foods, and can't be in the room with even a trace of certain perfumes, air fresheners or detergents because she has developed serious allergies to chemicals in them. Right now, she is getting necessary IV and supplemental treatment that is helping her function until she can get more comprehensive testing and accurately targeted treatment. Without any treatment, or if she has to skip them because of lack of funds,  she has episodes where she cannot get out of bed for weeks with terrifying symptoms. She has been temporarily and partially blind and paralyzed; has had weakness in the muscles that difficult or impossible to walk, and can get muscle spasms so terrible it stops her breathing; her heart and lungs get distressed, she has tremors, palpitations, nausea, fever, fatigue, body aches and pains that make even rolling over or normal movement feel impossible. It has cost Beth between $20,000 and $40,000, depending upon the severity, just for out-of-pocket medical expenses every year. This has been financially and emotionally, as well as physically devastating. Beth is not a victim. This has been a convergence of very difficult circumstances that are simply overwhelming.

You can read more about some of the complications of misdiagnosis here: http://www.forbes.com/sites/judystone/2015/09/04/lyme-deaths-from-heart-inflammation-likely-worse-than-we-thought/#db29d6e4d81b


There is good news, however. There has been advancement in treatment for Lyme Disease and its companion infections, thanks to a rare group of physicians who have the right mix of skills and passion to help this overlooked community of patients. With the right medical testing and treatment, she can go into remission, help her immune system heal, and become strong and fully herself again. With the help of an expert physician in this complex disease, Beth still has a chance to have a very full life, and with proper management, never have to suffer like this again. However, she cannot let this disease progress any further and needs this help as soon as possible.

Insurance will not cover any of Beth’s medical bills because they consider Lyme to be difficult to catch, but easy to treat. As a result, they will only cover 30 days of Lyme Disease treatment (antibiotics), which will not work for someone who has been misdiagnosed for as long as she has been. There are multiple co-infections and complications from a missed Lyme diagnosis that can be life threatening, especially as the immune system breaks down. And her immune system is breaking down. I would hate for Beth to die because of lack of money and the humiliation she feels from this disease.  Therefore I have encouraged her to allow me to tell her story and to ask for your help.

I'm afraid if Beth continues in this way and does not get the medical attention that she needs, she will die.

 Although she has had help from a couple of wonderful physicians in the past, there are very few physicians with the training and knowlege for difficult Lyme cases. They are quite rare. Physicians need to be experts in infectious disease, as well as Lyme, and understand how antibiotics/drugs work with each type of infection - and how they don't work, and what to do about it. They need to understand how the delicate immune system is altered and how to bring it back into balance. They need to know exactly what to test for and how to read the symptoms for each co-infection, and there are a lot of those to choose from. The physician needs experience to know that the infections, some of which are similar to malaria, can get into every system in the body, including muscles, nerves,  joints, organs, heart, brain and gut - if left unchecked. Beth hasn't been able to find one of these experts local to her in Michigan. But, after much research and evaluation, she has found a physician/M.D. who can help. The medical facility is in Albany, New York, and is called the Stram Center for Integrative Medicine. It specializes in Lyme Disease and has proven to be a success with patients with long-term, complex issues who have suffered like Beth. Treatment is expected to be $32,000 over a two-four month period. Adding in her travel and temporary housing expenses, Beth will need $50,000 to make it feasible. Anything over that amount will be put toward future maintenance treatments that are  out-of-pocket for her. She had enough funding to make her first appointment on May 31, and is very positive about the help she will be receiving there.

Note: She originally had an appointment with another great doctor in Florida, but since the campaign began, heard many success stories about the protocol that this center was using so when an appointment with Dr Stram, M.D. opened up, she grabbed it. For updates on her progress, visit her GofundMe page.

Beth tends to focus on the needs of others, rather than her own. She also has a lot of pride, and does not want to ask for your money.  So I will! Please give whatever you can . . . if you can, to help Beth. Please help save a kind, loving, and talented woman who has so much to give.

CLICK TO CONTRIBUTE TO THE GO FUND ME CAMPAIGN

Dr. Fasano on New Gut & Autoimmune Research, Autism, & Clearing Up the Gluten Confusion with His New Book

Interview by Elisabeth Veltman

Alessio Fasano, MDIt was a true privilege to once again speak with Dr. Alessio Fasano, a pioneer in the research and treatment of celiac disease, other gluten related disorders, and autoimmunity. Dr. Fasano is the Chief of Pediatric Gastroenterology and Nutrition at Massachusetts General Hospital, and is the Director of the Center for Celiac Research, which he founded in 1996. He is also one of the most beloved figures in the gluten-free and celiac community. His passion for his work and his love for people are absolutely palpable. He is tireless and uses a rare combination of science and art in the way he approaches his research. He can break down a very complex subject into picturesque language, and is an absolute joy to interview.

 

THE IMPORTANCE OF DR. FASANO’S RESEARCH

My first interview with Dr. Fasano was in December of 2011, after he and his research team discovered a “new food allergy” called gluten sensitivity in April of that year. During the interview, one of the most interesting and shocking facts he discussed was that no one has the ability to digest “gluten,” a term that was just becoming a household word at the time. In that interview, he offered some of the reasons why so many people are affected by the “gliadin” class of proteins found in gluten-based grains like wheat, rye, barley, and other grains within the grass genus Triticum (read more). Dr. Fasano became recognized around the world when he published a study on the dramatic rise of celiac disease in the 2003 Annals of Medicine, and even before this when he discovered “zonulin”, a protein in the human body that regulates the permeability of the body’s tissues, including the intestine. Zonulin causes the intestinal wall to open and close as required by the body to keep nutrients in and harmful stuff out. Too much zonulin seems to cause the intestinal walls to stay open, allowing other allergens and substances into the body, alerting the immune system, and giving credence to the term, “leaky gut.” This discovery led researchers to an interesting pattern: people in the acute stages of celiac disease have increased zonulin levels. His research links increased zonulin levels to the development of celiac as well as other autoimmune diseases. Additionally, since celiac disease is the only autoimmune disease where a clear trigger (gluten) is known, Dr. Fasano’s research will benefit all autoimmune research, as it will help scientists find the triggers to diseases like type 1 diabetes, multiple sclerosis, and rheumatoid arthritis and could pave the way to a cure.

Read about his new study here: How to predict the onset of celiac disease & how gut bacteria influences autoimmunity.

HIS NEW BOOK

Dr. Fasano has been interviewed and quoted in hundreds of publications including The New York Times, The Washington Post, NPR, Bloomberg News, and the The Los Angeles Times; and has been featured on television on shows like “Good Morning America.”

I was very excited to learn about his new book called, “Gluten Freedom” which was published this week, and authored with the help of writer Susie Flaherty. His book will help dispel some of the myths that have arisen around gluten related disorders. These myths and misunderstandings have caused quite a stir (in other words: argument) in the gluten-free community and in the media, so it will be very interesting to see what Dr. Fasano has to say. The book will also discuss some of the exciting research that he and his team have done and are doing, including studies on the microbiome in the gut and how that protects us from disease, and the gut’s relationship to the brain. The book is available now on amazon.com.

THE INTERVIEW

Our interview helps answer some of the questions and concerns that The Tender Foodie receives from readers about the confusion in celiac diagnosis, the importance of early diagnosis, a new term called “the gluten sensitivity spectrum”, the dangers of cheating on your diet, the relationship between gluten and autism, and the propensity for developing autoimmune disease because of gluten sensitivity or celiac disease. He also gives a few more highlights into the delicious morsels of information that we can find in his book.

Celiac Testing

TENDER FOODIE: When we last spoke two and a half years ago, we discussed how to get tested for celiac disease. You had mentioned that 4 out of 5 markers is the new standard for a celiac diagnosis, and that following this standard might help avoid a biopsy. Has anything changed since then?


DR. FASANO: At that time we were discussing a proposal to the medical community that we change the existing criteria to the 4 out of 5 marker algorithm.

We had decided that we needed to invent an algorithm that addressed patients who were exceptions in the celiac community. In reality, 80% of patients will fulfill the old criteria, but there were many patients who fell through the cracks when it came to diagnosis. One year after we spoke last, this new algorithm (the 4 out of 5 markers) became official in the European community and is now accepted worldwide. The method has been reviewed using an evidence-based method by the medical community at large.

NOTE: The method has been reviewed by: European Society of Pediatric Gastroenterology, Hepatology and Nutrition

TENDER FOODIE: Many of my readers are confused when they hear that the small intestinal biopsy is the “gold standard” for celiac diagnosis. They often ask – can there be a false negative? Can surgeons miss the part of the small intestine that is diseased, and therefore misdiagnose a patient?

DR. FASANO: We don’t call the biopsy the “gold standard” anymore. In fact, it is not the silver standard, nor even the copper standard! One main reason is that someone with celiac disease may have no damage to the small intestine. Not yet.

Two years ago, we didn’t have the strong screening tests that we do now.

NOTE: Watch this page for updates on testing for celiac disease and other food allergies and sensitivities.

TENDER FOODIE: Is celiac disease the only disease that can destroy the small intestine? If not, what else can?

DR. FASANO:  Infections, viruses, and other inflammation can destroy the villi in the small intestine, too. In fact, for some of the people who have it, the AIDS virus can be quite devastating to the small intestine. Radiation from cancer treatments can also destroy the villi in the small intestine.

Young kids can have a list of diseases that can affect the gut, as well, damaging the small intestine, such as Cow’s milk (lactose) intolerance, parasitic infections, rotovirus, and autoimmune enteropathy.

CAN THE SMALL INTESTINE HEAL?

TENDER FOODIE:  You’ve mentioned in past interviews that the small intestine can regenerate itself. Is there ever a point of no return? A point where the small intestine can no longer regenerate?

DR. FASANO: It takes 3-5 days for the small intestine to regenerate itself because within the blood system, we have the capability to continually regenerate. Intestinal cells constantly have to replace themselves, so this is a natural process that continually is happening.

There is no “point of no return.” The regenerative stem cells are in what we call “the crypts.” These are depressions in the small intestine where the stem cells live. These crypts actually expand themselves in people who have untreated celiac in order to create more regenerative cells. The crypts can get overwhelmed with demand in people who have untreated celiac.

In other words, it’s normal to have 100 cells die, and 100 cells regenerate on a regular basis. With celiac disease, cells die early, and stem cells can’t keep up with the regeneration process, so the crypts where the stem cells live expand to try to keep up with the need for new cells.

NOTE: In other words, if a person with celiac disease is not on a gluten-free diet, the crypts keep expanding to try to keep up with the die off of the villi, but cannot, so the destruction of the villi continues, and more damage to the small intestine occurs.

KEY DIFFERENCE BETWEEN CELIAC DISEASE & GLUTEN SENSITIVITY

TENDER FOODIE: In our last interview, you had mentioned that, “We don’t know all of the necessary genes to develop Celiac Disease; however, HLA DQ2 and/or DQ8 are absolutely necessary to develop the disease.”

How common is it to have a negative celiac panel, but a positive biopsy of the small intestine? And simply to clarify again, can you have a diagnosis of celiac disease without the aforementioned genes?

DR. FASANO:  It is very rare to have celiac disease without these genes. That is why we have developed the 4 out of 5 markers. I mentioned before that the biopsy of the small intestine is no longer the gold standard, and can be avoided if the other 4 markers are present. But, if you have symptoms and a positive serology (antibodies are showing up in your blood test) in view of a negative HLA, you cannot avoid a biopsy, because at this point, we don’t know if the patient has gluten sensitivity or celiac disease.  For instance, a negative serology (zero antibodies in the blood) plus symptoms (you get sick from consuming gluten) plus a negative HLA (the DQ2 / DQ8 genes are not present) is most likely gluten sensitivity and not celiac disease.

TENDER FOODIE: What about antibodies to the small intestine itself?

DR. FASANO: Positive or negative serology is just a test for the autoantibodies against tTG. There is an anti-enterocyte antibody test that is available that measures antibodies against your small intestine. However, it is not routinely performed and not widely available in labs. This condition is extremely rare.

CAN YOU CHEAT ON YOUR GLUTEN-FREE DIET?

TENDER FOODIE: Here is one of the most common questions that I receive often. Some readers who have been diagnosed with gluten sensitivity and even those with celiac disease have mentioned that they “cheat” on their diets and once in a while eat their favorite gluten-filled foods.  I always shudder when I hear this. Can you tell us the rules on diet for both celiac and gluten sensitivity?

DR. FASANO: For people with celiac disease, cheating is an absolute NO-NO. it is like diabetes. If a diabetic skips insulin he/she will be in big trouble. The same for those with celiac disease, cheating is not an option.

For people with gluten sensitivity, we don’t know yet what cheating will do to the body. People appear to have different thresholds. Some people who are gluten sensitive (not celiac) can’t tolerate even a trace of gluten. Others people with gluten sensitivity (again, not celiac) can tolerate it occasionally. There appears to be a spectrum of tolerance for those with gluten sensitivity, so, unlike celiac, you need to be as strict as your body requires.


TENDER FOODIE: There are a lot of mom’s with celiac disease or with the disease in their families who would like to know if gluten can be transferred through breast milk?

DR. FASANO: Yes, gluten can be transferred via breast milk.

CELIAC, GLUTEN SENSITIVITY  & OTHER AUTOIMMUNE DISEASES

TENDER FOODIE: Can you develop other autoimmune diseases either from untreated celiac disease or untreated gluten sensitivity?   Also, have researchers gathered the statistics on whether or not DQ8 celiacs have a greater number of other autoimmune diseases than DQ2 or vice versa?

DR. FASANO: There are two schools of thought. Here are a couple of examples.

The first school says that if you have X number of genes that put you at risk for celiac, but are also born with Y # of genes for Hashimotos (a thyroid condition), for instance, then you are likely to get Hashimotos.

The 2nd school of thought says that untreated celiac disease leads to other autoimmune diseases, but you might reduce this risk of other autoimmune diseases if the celiac disease is caught early.

TENDER FOODIE: Do the celiac genes need to be expressed or triggered in order to develop other autoimmune diseases?

DR. FASANO: Here is another way to put it: Again, if you develop celiac disease and have complications from other autoimmune disorders, by default the celiac genes are expressed. So if you believe that other autoimmune disorders are due to untreated celiac disease, the answer would be yes, the genes must be triggered.

Here are some of the statistics for those with celiac disease who are at risk for other types of autoimmune diseases: 

15/20% of celiacs are at risk for Hashimotos (A thyroid disease)
7-10%  of celiacs are at risk for Diabetes
5% at risk for Auto Immune Hepatities Herpetiformas (A serious skin rash)
2-3% at risk for Sjögren's syndrome

For both of these schools of thought, you can’t make a celiac diagnosis without discovering intestinal damage. However, progressive thinkers say it doesn’t matter if the celiac is activated, or if the intestines are damaged or not, the person still could have celiac disease now and damage later in life. We need a third option where a diagnosis should come before the onset of celiac disease. We are more focused on prevention now than we have been in the past.

A study of children under the age of 2 in Sweden showed that the intestines of the celiac children who went on a gluten-free diet went back to normal, but those who were untreated -- almost all of these kids’ intestines had damage. The study suggests that there is an opportunity for early prevention because of early diagnosis.

Read about Dr. Fasano's new study on early diagnosis.

TENDER FOODIE: What about gluten sensitivity? Is that a precursor to autoimmune disease as well?

DR. FASANO: Gluten sensitivity is not an autoimmune disease, but I would not be shocked if we eventually find a link between it and autoimmune diseases.

NOTE: After the interview I followed up on this statement, "I would not be shocked to find a link between gluten sensitivity and autoimmune disease", as it is quite a powerful one, to confirm that this was exactly what he said. Dr. Fasano verified this statement.

WHAT IF YOU DON’T GET BETTER ON A GLUTEN-FREE DIET?

TENDER FOODIE: There are some people with celiac disease who do not seem to get better even when strictly adhering to a gluten-free diet. Could you talk about why?

DR. FASANO: Yes. There are some people who don’t respond to a gluten-free diet. This is a condition called Refractory Sprue. Refractory Sprue is defined by a persistent or recurrent malabsorptive symptoms and villous atrophy despite strict adherence to a gluten-free diet*. Most people with celiac disease do well on a gluten-free diet, but this is a small group who does not respond to strict adherence to it, and continue to have gut damage and symptoms. The immune system doesn’t even need to be instigated by gluten anymore in these patients. We also refer to these patients as “non-responsive celiacs” and this condition needs to be studied more carefully.

NOTE: In plain language, “malabsorption” refers to the inability of the small intestine to absorb nutrients because of damage to the villi. “Villous atrophy” simply means that the part of the small intestine that absorbs the nutrients (the intestinal villi) is being eroded or destroyed.

TENDER FOODIE: I’ve heard that you have a new diet that is successful for non-responsive celiac patients?

DR. FASANO: Yes! It’s called the Fasano Diet, although I wish they didn’t call it that!


TENDER FOODIE:  Why not?

DR. FASANO: Oh, it was a team effort. It is a diet for everyone and not for me!


TENDER FOODIE: That’s funny, I love it! Tell me a little about this Fasano diet.

DR. FASANO: The patient is on the diet for 3-6 months only so that the immune system can have time to recalibrate itself, and calm down.


TENDER FOODIE: is this similar to GAPS or the Specific Carbohydrate Diet? And what is your opinion on these diets?

DR. FASANO: I don’t have an opinion either way on these diets. The bottom line is to be in favor of the quality of life of the patient. The difference is that the diet we’ve created allows all fish, vegetables, olive oil, and only one grain: rice.  Rice is the only grain that is completely gluten-free. We are going back to the way our grand parents used to eat, and the ingredients allowed in the diet are all whole, unprocessed foods that are naturally gluten-free.

INFLAMMATION, GLUTEN SENSITIVITY & THE THYROID, GALLBLADDER & BRAIN

TENDER FOODIE: How does inflammation factor into the immune response for gluten sensitivity? Can you review how this works for readers who do not have celiac, but are reacting to gluten?

DR. FASANO: You need to make a clear distinction between celiac disease and the immune system’s attack on other tissues, like the thyroid. Gluten (or more specifically, “gliadin”) is inflammatory because it cannot be digested by any human (read more here). If gluten is ingested, it causes a leaky gut**. If the gut doesn’t heal after ingestion of the gluten, it starts a war that has collateral damage of some kind. If that war is confined to the intestine, then the distress is in the function of the intestine.

However, sometimes the immune cells, or the soldiers in the war, leave the intestine and then attack other types of tissues, like those in the gallbladder, thyroid, and brain. Inflammation because of gluten can even be a factor in diseases like autism and schizophrenia.

NOTE: "Leaky Gut" is where too much zonulin (see first paragraph) actually opens the normally tight junctures of the small intestine letting undigested particles that are too large to be absorbed properly, into the system.

GLUTEN & AUTISM

TENDER FOODIE: Many people ask about a gluten-free diet for kids with autism.  Since we are on that subject, can you address the effectiveness of a gluten-free diet as a tactic?

DR. FASANO: This is a controversial field and has been looked at by researchers for many years. The paradigm of celiac and autism does not really fit: there is another Swedish study has found no link between celiac disease and autism. However, there may be other types of gluten reactions that could be at play. We don’t know whether this is part of the general rise in gluten sensitivity throughout the population, or not. The real issue is that autism is very complex. Researchers are starting to accept that autism can have different causes, including genes, toxins, vaccines, or food intolerance like gluten sensitivity. There is no single magic bullet, and the approach to each case must be customized. Twenty out of 100 autistic kids respond to a gluten-free diet, but if you can identify the cause and the triggers of any complex disease, and isolate the biomarkers associated, this is a much better approach. We are just scratching the surface, but this gives us a lot of food for thought.


TENDER FOODIE: This is really fascinating and very helpful, thank you. I have to ask, although I know you don’t have all of the answers to this as this is not specifically part of your research, I’d love your opinion. Have you found any link between the “new” pesticide producing GMO’s and the rise of gluten-related disorders?

DR. FASANO: We don’t know enough to make that determination. But I don’t think they are driving the rise in celiac disease because celiac disease has increased dramatically in many countries, including the European countries who ban these GMO’s. We still have not found the cause of the rise in gluten-related disorders.

NOTE: After our interview, I ran across a proposal for a study from research scientists at the Massachusetts Institute of Technology (MIT). This was forwarded to Dr. Fasano’s team for comment at a later date, should it be appropriate.
 
STUDY ABSTRACT (PARTIAL): Europe provides disturbing confirmation that glyphosate residues are prevalent in the Western diet (Hoppe, 2013). This study involved exclusively city dwellers, who are unlikely to be exposed to glyphosate except through food sources. Despite Europe’s more aggressive campaign against GMO foods than that in the Americas, 44% of the urine samples contained quantifiable amounts of glyphosate. Diet seems to be the main source of exposure. One can predict that, if a study were undertaken in the U.S., the percentage of the affected population would be much larger.

Source: http://www.intertox.sav.sk/ITX_pdf/06_04_2013/10102-Volume6_Issue_4-01_paper.pdf

MORE ON THE BOOK & NEW RESEARCH

TENDER FOODIE: Let’s talk about your book. Will you tell us a little more about it and why you wrote it?

DR. FASANO: Yes! We are very excited. The book summarizes our seventeen years of experience in research and how we’ve had to shift the paradigm. At first, no one was interested. Now, the subjects of gluten and celiac disease are very popular, and the facts are getting distorted. The book will help dispel some myths and clarify the facts, as we know them now.


TENDER FOODIE:  What is some of the newest research that people can find in the book?

DR. FASANO: There is an entire section devoted to the brain. We’ve learned so much about the brain in recent years that is very interesting. We’ve also done new research on the gut and the microbiome and the cross talk between our genes and the gut bacteria. We may be born with a certain gene for a particular disease, but our gut bacteria may influence whether or not that gene gets triggered. We would like to see if we are able to locate a single biomarker before the gene gets triggered, and therefore prevent the disease from occurring. We published a paper on this, I'll have someone send it to you, it is a very ground breaking area of research.

Here is the paper: Pathophysiology of the Intestinal Paracellular Pathway

TENDER FOODIE: Oh terrific, thank you. And thank you so very much for working through these reader questions with me, Dr. Fasano. It has been such a privilege to be able to speak to you again.

DR. FASANO:  You are most welcome.

MORE FROM DR. FASANO

If you would like to learn more about Dr. Fasano's work, here are a few other great articles that you will enjoy and find very educational.

RHR: Pioneering Researcher Alessio Fasano M.D. on Gluten, Autoimmunity & Leaky Gut, by Chris Kresser

Dr. Fasano's Guidance on Probiotics from Autism Speaks

And here are the other interviews that I did with Dr. Fasano on Tender Foodie in 2011:

Should Anyone Eat Gluten?

How To Get Tested for Celiac Disease

Gluten Sensitivity, A New Food Allergy

A special thanks to Susie Flaherty for her help in getting the details necessary for these interviews. You are greatly appreciated!

About the Author of This Article

 Writer, owner of Blue Pearl Strategies, and lover of all culinary delights, Elisabeth started The Tender Palate & Tender Foodie, for people with food allergies, sensitivities and intolerance. She believes that everyone should live deliciously and have a healthy seat at the table.

The Most Surprising Places for Hidden Gluten

 

The Way We've "Always" Done It

For years, food processors have gotten used to procuring, milling, making, packaging, and shipping our food in a certain way.  Marketing, science, operations have all jumped on board to make modern processes more efficient, food more "palatable" (sometimes more addictive), and shelf- and shipping- life longer. 

Progress.  It's a natural human response to ... progress.  However, in solving our business problems, we've forgotten the human equation. That wonderful, natural symbiosis of land, plant, animal, atmosphere, mind, body, and spirit is lost in the needs of mass production. It isn't the way we've "always done it".  It's new, and what affects our food supply affects us.

Take gluten, for instance.  Sometimes it's simply how something is made - with wheat, rye, or barley.  But often, we've added gluten as a thickener and a preservative.  We've floured our gargantuan machines with it so the coffee beans don't stick. We process wheat products along with other foods that have nothing to do with grain.  We've increased (genetically engineered) by 14% the protein content of gliadin, one of the proteins in the gluten grains we farm without realizing that human beings don't have the enzyme to digest it.  It's true. 

Read what a leading expert says about this.

So here we are, the food consumer, with health problems. Celiac disease has increased 4-fold (at least) within the last 50 years, and 90% don't know they have it.  A new food allergy called "gluten sensitivity" is affecting over 25 million people. Gluten is thought to trigger behavioral issues and increase symptoms of many other diseases.  There are several credible theories as to why, and all of them probably hold a great deal of water.  One of these theories is that we have more gluten in our food than our bodies can handle.

I use this list in different talks that I give to help illustrate the surprising places you can find a significant amount of gluten. Significant, meaning, it will make you sick. People ask me to put this list on the blog, so here you go.  I'll keep adding to the list and put it on a more permanently accessible place on the site as well.  In the end, it all comes down to reading the label and knowing your brands... and listening to you intuition and your body, as well as to the experts.

Read more about the labeling differences between the USDA & the FDA. 

The Surprising List

Add your own in the comments section and help other Tenders out! 

• Chicken/Beef/Vegetable Broth (thickener) - Make your own, see beef broth recipe here... and chicken broth/general recipe here.
• The Bulk Bin: any item that you find in bulk has a high risk of cross contamination - either during processing before it reaches the store, or at the store, as customers use, mix, and re-use the scoops.
• Tomato Paste & Condiments like catsup and mustard (thickener) - I like Annie's ketchup & mustards
  
• Soy Sauce (ingredient - get gluten-free tamari (like San-J), or gluten-free soy, or gluten-free coconut aminos, like Coconut Secret)
• Nuts (if processed w/ grains.  Blue Diamond almonds are generally accepted in the GF community as gluten-free)
• Dried Fruit (often processed w/ grains - I LOVE Made In Nature dried fruits)
• Flax/chia seeds (often processed w/ grains)
• Corn flour, tortilla, corn chips (often processed w/ grains.... flour cross contaminates easily and abundantly in factories)
• Rice Noodles (can be processed w/ gluten grains)
• Potato Puffs (sometimes coated with corn flour that can be processed with gluten)
• Hot dogs/ Bratwurst (as a filler)
• Processed hamburger patties (as a filler)
• Coffee (large processors often use a gluten-containing white powder to flour their machines, although this practice is changing, processors aren't talking...  get to know your local roasters.  Smaller roasters do not need this powder - read more here.)
• Commercial chicken & turkey (some use gluten solution as a "plumper")
• Cold Cuts (as a filler)
• Oats (processed w/ gluten grains... also some people react to a compound in oats... if you can eat them, get gluten-free oats)
• Pickles & Olives (malt vinegar is often made from barley)
• Smoke Flavoring (often derived from barley malt, or other gluten-grains)
• Caramel Coloring (can be derived from barley, although in the U.S. it is usually derived from corn - read the label, but it is best to be safe and avoid caramel coloring)
• Vanilla and all other extracts (distilled, grain-based alcohols are used in extracts... some people do react to distlled grain alcohols and vinegars. Also, some extracts contain caramel coloring derived from barley)
• Spices - especially spice blends (McCormick pure spices are gluten-free and generally accepted by the GF community.  McCormick spice blends, however, can contain gluten ingredients - so read your labels)
• MSG: read more about MSG here.
  
• Salad dressing - often contains gluten as a thickener and/or has grain-derived vinegars (malt vinegar especially). Many react to wheat/barley derived vinegars.
  
  
• Flavored potato chips (some non-flavored potato chips) - double check the label of anything that has a flavor coating or additive
• Low Fat Dairy: yep, can be thickened with gluten.
• Bacon: if it is made w/ smoke flavoring, the flavoring can be derived from various sources of gluten (including barley, and brewer's yeast. Brewer's yeast is a by product of beer.)  A clue to safe bacon is that which is local, apple or hickory smoked - but call the manufacturer to double check.
  
  
• Personal Care Products & Toothpaste: Read more here
• Mouthwath
  
• Toothpaste & Flavored Dental Floss: Many toothpastes contain gluten, but there are gluten-free toothpastes, like Desert Essence, which I love. Minted or flavored dental floss are suspected of containing gluten as well, and I'm researching this further as it became clear that I was reacting to something in it. Unflavored is a much safer bet.  Here is a list of companies that are starting to claim a gluten-free status:
  • Oral B Dental Floss
  • Oral B Stages Toothpaste (does not say anything about other toothpaste lines)
• Dental gloves,  Polishing paste, Flouride, Topical Anesthetic: The gloves that your dentist uses? Make sure they are not powdered. They can be powdered wtih starch, usually starch that contains wheat or could be corn starch cross contaminated. Gluten is hiding in many common dental products, such as toothpaste and the flavored polishing paste, topical anesthetic and even the fluoride commonly used in many dentist offices. Check with your dentist before your next visit to see if they know if the products they use include gluten - it might not appear in the ingredients, since by law it does not have to. If they aren't able to or won't properly research the ingredients, ask for alternatives (or find a new dentist).
• Orthodontic Retainers & Dentures:  Really. Some plastics (many, actually) are made with gluten.  Read more.
• Surgical Implants: Intra-ocular implants to replace the lens in the eye, bone cement, dental implants, are often made from Poly(methyl methacrylate) (PMMA), and this substance can contain gluten. So have your surgeon double check that the materials they are using for any implants do not contain gluten.
• Cosmetic Surgery: fluids used to reduce the appearance of wrinkles or scars can also be made from PMMA, which can contain gluten. Check w/ your surgeon/doctor to be sure they are able to use a non-gluten material.
• Beauty Products: Read more here
  
• Medications & Supplement:  Read more here
• Cough Syrups
  
• Envelope glue UPDATE: Dr. Alessio Fasano had his team investigate this in his book, Gluten Freedom, and found that envelope glue does not contain gluten, but is corn starch-based (so if you are allergic to corn, take note.) This is according to the Envelope Manufacturers Association based in Alexandria, Virginia.
• Powdered / Confectioners Sugar: many (if not most) powdered sugars are mixed with a wheat or corn-based starch (and corn starch can also be cross contamintaed with gluten).
• Charcoal Briquets: Becky, from a local Celiac Support Center here in Grand Rapids, let me know about this. Many charcoals have a form of starch, usually wheat-based (but also could be corn, rice, or potato), that holds the charcaol in the briquette form, and allows a controlled burn. There is a risk that the gluten from the briquette could be inhaled, as well as get on the food cooked over it and digested. Your best bet is to use an all wood charcoal (lump charcoal) that can be found at major hardware stores chains and some grocery stores.
• Laundry Detergent
• Window Cleaner
• Kitty Litter (esp. the "natural" kind)
• Playdoh - & molding clays: contain wheat and can cross contaminate on hands, and easily get into a child's mouth or eyes from the hands.

A Note on Distilled Alcohols & Vinegars

There is a debate in the gluten-free community upon whether or not distillation removes all of the proteins from a grain-based alcohol or vinegar.  There are respected leaders in the community that say that all distillation removes all gluten proteins so that all vinegars, spirits, and alcohols are "safe" for the gluten-free, even if derived from a grain.  I have a great deal of respect for the research these leaders have done, but I've never heard them say, "we've tested this and the protein content is zilch."  I've also heard them say, "if you are really sensitive to gluten, like an allergy, then avoid gluten-based alcohols."  This is very confusing. Also, there are food processors, who pay close attention to the vinegars in mustard, for instance, and I wonder, if they are testing and using non-gluten vinegars and alcohols, why others do not.  These processors either test for the presence of gluten, or use vinegars that are derived from non-gluten sources.

I've also seen and received comments that gluten-free Tender Foodies DO REACT to distilled vinegars, spirits, and alcohols that are dervied from grains, but DO NOT react to vodkas, for instance, that are purely derived from potato; or to pure rum, or to pure tequilla (for example).  I am one of them, and it took me a long time, and great discomfot before I figured this out. There are many reasons to react to alcohol (yeast, sulfites, just plain drinking too much etc), but grains could be one of those reasons, and to me, experimenting is not worth the risk. There are some great, non-grain options out there, and even some beer that has been tested for gluten, but dervied from barley.  Confusing?  Yep. So the questions, creativity and debate continues. Please pay attention to your body and intuition as much as you do labels and experts.

I'll be doing more research on this and may come up with my tail between my legs.  However, I would like you to be aware of your options and possible pitfalls; and throw your opinonated hat in the ring in the comments below!  I'd love to hear about your experience. 

Do you react to distilled, gluten-based alcohols?

What are some of the most surprising place where you have found gluten?

Reader Question: What Does "No Hormones Added" Mean?

Photo courtesy of Emiliana Vineyards, a Biodynamic vineyard and farm

A reader wrote to me and asked:

What do you think "No hormones added**" means? Saw this on chicken and at first was happy there were no hormones. Then I thought, "wait a minute!" The asterisks made me nervous. Should I be?

There are a lot of details involved in raising poultry and livestock of all kinds, which is one reason I (Elisabeth) do my own personal best to get to know the farmers, either directly, or through reputation.  Shopping local is one of the best ways to do this, or by researching other farms who are doing something cool and interesting, like biodynamic practices.

But here is what I do know: the USDA prohits the use of added hormones in Pork and Poultry while allowing the practice in beef and lamb.

The "**" (asterisks) the reader mentioned will refer to something else that is on the label of that particular product - usually the explanation will be at the bottom. My guess is that it will be this language: "Federal regulations prohibit the use of hormones" since "no hormones added" cannot be used without this companion statement by law for pork or poultry.

Hormones CAN be used in beef or lamb to increase milk production and as growth promoters, which is crazy. So it's best if you can, to find a farmer whose feed and husbandry practices are well known and respected esp. for beef/lamb.

The term "no hormones administered" may be approved for use on the label of beef products if sufficient documentation is provided to the Agency by the producer showing no hormones have been used in raising the animals.

Please feel free to help this reader and all of us out with your knowledge and experience about hormones in meat/poutry production! 

... or ask your own question here.