Archive for ‘Education’

August 1, 2017

A Bite of Regret

Before you have a taste of that beautiful cake, remember you could be taking a bite of regret. One of my friends is in pain. She isn’t complaining too much because she knows why. A couple of months ago she went on vacation. There was cake. After three years of feeling good on a gluten-free diet, she thought it probably wouldn’t hurt to just take one tiny bite of cake.
While we know the research says one bite of gluten is enough to trigger an immune response that causes damage which can take a year to repair in someone with celiac disease, we don’t really know if that one bite of cake caused my friend’s problem. Why? Because she didn’t stop with that bite.

A few days later, there was pizza. She had half a piece. A bite of fried chicken here and a taste of a dinner roll there, pretty soon she was a few weeks down the road of regret and couldn’t deny how bad she was feeling. Now she realizes she’s in for a long haul in getting back to where she was before that fateful first bite.

I know it’s tempting to think that reducing gluten does much the same as eliminating it. That’s seductive because it sounds like you can periodically reward yourself with a doughnut and not suffer any ill effects. If you have an autoimmune response to gluten, reducing gluten will not work effectively. You must eliminate it entirely and forever to avoid continuing damage to your body.

The message from the medical community is sometimes confusing. Without definitive test results, your doctor may put you on an elimination diet for a few weeks then have you add back gluten to see if it affects you. Unfortunately, the results can be misleading. If you have gluten-sensitive enteropathy, you may not feel worse from adding back gluten after a few weeks because your body has not had time to heal the damage that’s already done.

Just like the gradual regret my friend recently experienced, symptoms may compound incrementally in a way that causes us to normalize our gradually increasing discomfort. It may only be after months of living gluten-free that we suddenly realize we no longer feel tight in our skin or our shoulder doesn’t ache or we can again lift a large cast iron skillet without difficulty. Questionnaires are so often focused on gastrointestinal discomfort that symptomatic patients may report having no symptoms.

In general, there seems to be a reluctance to diagnose celiac disease so it still often takes years of symptoms to get a diagnosis. I don’t know why this reluctance exists. I am hoping it will lessen in light of new research that indicates diet may be effective in treating conditions not commonly associated with dietary risk such as multiple sclerosis and depression.

If you have been diagnosed with celiac disease and know gluten is harmful to you, it is important to consistently and continually eliminate it from your diet. Failing to do so puts you at a higher risk of death (1). That’s something to keep in mind before you take that tempting bite! Make sure it’s not a bite of regret.
(1)Though still modest in absolute terms, risk of mortality increased by 75% for patients with mild inflammation of the small intestine at a median follow-up of 7.2 years (95% CI 1.64 to 1.79), and by 35% for patients with latent celiac disease (defined as gluten sensitivity) at median follow-up of 6.7 years (95% CI 1.14 to 1.58), according to a report in the Sept. 16 Journal of the American Medical Association.

June 14, 2017

Has Gluten-Free Living Gotten Easier?

Has gluten-free living gotten easier as awareness has increased? When I learned gluten-free living was a necessity for me, it took an average of 11 years to get a diagnosis of celiac disease, gluten-free products were limited and only available in specialty stores, and few restaurants offered gluten-free menus. That was 13 years ago. What has changed?
gf pie crust
Access to information has increased

Over the past decade, the internet and smart devices have increased our access to information exponentially. Want to know if the Knorr Vegetable Recipe Mix your friend used in the spinach dip she brought to a party is gluten-free? Just grab your phone and find out. Want to find gluten-free pizza nearby? A digital assistant can find it and give you driving directions. Need to make sure a restaurant choice will be easy for you? Preview the menu on the website. Interested in current research? Much of the information is just a click away. Want to find a gluten-free partner or friend? Try Advances in technology have brought the most changes by far.

Restaurants are more informed

The term gluten-free is now widely recognized. Chances are that the waiter at your favorite restaurant is familiar with the term. That restaurant may offer a separate gluten-free menu or have certain items designated gluten-friendly. Many national chains publish allergen information online.

Major supermarkets have gluten-free selections

You can now find a selection of gluten-free convenience food at every major supermarket. In fact, the top-selling breakfast cereal in the USA is gluten-free Honey Nut Cheerios. Other commonly stocked gluten-free labeled foods are crackers, pretzels, pasta, cake mix, flour blends, cookies, frozen pizza, and frozen waffles. Even convenience stores keep a selection of high protein gluten-free snacks on hand.

Specialty bakeries exist

wedding cakeDedicated gluten-free bakeries that eliminate the possibility of cross-contact with gluten containing ingredients now dot the country. Not only can you choose from cookies, brownies, cheesecake, pie, and doughnuts, beautifully decorated gluten-free wedding and birthday cakes are available in cities across the US. Many specialty bakeries also offer dairy-free, nut-free, and vegan options.

Gluten-free labeling now has a standard in the US

Prior to 2014, a gluten-free label didn’t necessarily mean the product was free of gluten because there was no labeling standard in place. As of August 5, 2014, FDA-regulated packaged foods bearing a gluten-free claim must meet the following requirements: the food either must be inherently gluten-free; or shall not contain an ingredient that is: 1) a gluten-containing grain (e.g., spelt wheat); 2) derived from a gluten-containing grain that has not been processed to remove gluten (e.g., wheat flour); or 3) derived from a gluten-containing grain that has been processed to remove gluten (e.g., wheat starch), if the use of that ingredient results in the presence of 20 parts per million (ppm) or more gluten in the food. Also, any unavoidable presence of gluten in the food must be less than 20 ppm. This rule does not apply to USDA (meat, poultry, some egg products) or TTB (alcoholic beverages) regulated foods.

Testing for celiac disease has increased

Doctors are more likely to test for celiac disease now than they were in 2004. The average length of diagnosis from onset of symptoms currently ranges from 6 – 10 years in the US. New screening tests are in development that may increase test rates in the future.

Experimental treatment is being tested

Research at Walter and Eliza Hall Institute of Medical Research in Australia has led to the development of Nexvan2®, a product that aims to retrain the immune system to tolerate gluten. This treatment is currently being studied in clinical trials led by ImmusanT of Cambridge, MA. A Phase 2 study is scheduled to begin this year. If you would like to participate in ImmusanT studies, visit

Looks like quite a few things have changed for the better in the gluten-free world! On balance, there are still things that can be improved.

More information can lead to confusion

When the mountain looks overwhelming, it’s difficult to start climbing. The sheer volume of information available can sometimes make things seem more confusing and difficult. Determining whether sources are reliable, recipes have been tested before publication, or a gluten-free pizza crust is being topped and baked in a kitchen where flour fills the air still requires time and energy. Well-meaning friends may pass along incomplete or incorrect information obtained online. The ingredients list on a favorite product you previously researched may unexpectedly change. In real life, it’s never quite as simple as 1-2-3.

Your server may not really know what gluten-free means

While most waiters have now heard the term gluten-free, they may not have a clear understanding of what it means. This sometimes makes communication a bit more awkward. They may also have served people who jumped on the gluten-free bandwagon as a fad and who cheat whenever they want a piece of cake. This makes it harder for those of us who must be gluten-free to be taken seriously.

Gluten-free processed food is still processed food

There seems to be a never-ending parade of less than delightful, expensive products coming and going from store shelves. At one point, these were grouped together in sections marked gluten-free. Now, they’ve been reintegrated into the regular product shelves where they’re more difficult to locate. Some packaged convenience products taste good. Many do not. And even though they may be gluten-free, they’re still processed food.

It’s harder to find gluten-free lists

Now that there’s a labeling standard, some companies have stopped publishing lists of gluten-free products online and have substituted a “read the label” statement. This makes it harder to research things like acceptable Halloween candy in advance.

The rate of diagnosis still takes 6 – 10 years

While doctors may test for celiac more frequently, it can still take 10 years to receive a diagnosis and over 90% of those with the disease remain undiagnosed. That doesn’t feel like much progress. That means over 2.25 million in the US are living with a nearly 4-fold increased risk of death and do not know it.*

According to the Celiac Support Association:
Untreated celiac disease increases the risk of cancer 200-300%.
Untreated celiac disease increases the risk of miscarriage 800-900%.
66% of those with celiac disease have osteopenia or osteoporosis.
51.4% of those with celiac disease have neurologic disorders
Healthcare costs per untreated celiac in the US: $5,000 – $12,000 annually.
Total US healthcare cost for all untreated celiacs: $14.5 – $34.8 billion annually.

BD PartyAnd if you really want to experience how little things have changed…
Visit a few weddings, baby showers, football watching parties, funeral luncheons, law school receptions, fundraising events, committee meetings, festivals, coffee houses, concession stands, hotel breakfast buffets, and neighborhood potlucks. While there are now some exceptions, the pre-eat or carry your own food rule still frequently applies. Ingredient information is not typically available in these settings and options are often limited.

Progress has been made

Things have gotten easier on many fronts. I am grateful for those. When I discover things that have become more difficult, I feel frustrated, but I stay the course because it’s worth it to me to feel good. And all things considered, living gluten-free is not that difficult. It simply requires commitment and planning.

Is a gluten-free lifestyle worth it

Yes!!!! Even if nothing had changed in the past 13 years, living a gluten-free lifestyle is absolutely worth any inconvenience for me. Having a chance to feel my best and be my healthiest is always worth it because how I feel affects my quality of life every minute of every day. Being my healthiest also makes it possible for me to potentially enjoy more years of living a full life. I can’t think of any reason I wouldn’t want that.

Disclosure of Material Connection: I have not received any compensation for writing this post. I have no material connection to the brands, products, or services that I have mentioned. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”

May 1, 2017

Hold the Natamycin, Please

I’ll have sharp cheddar, and hold the Natamycin, please. Over the past few years, I’ve noticed that my hands sometimes break out after eating cheese dip, my cheeks turn bright red after an eye exam or when I use eye drops, and recently, I felt achy and uncomfortable for several days after eating shredded Parmesan cheese. Those sound like fairly random, unrelated events…are they?
I don’t like feeling tight, achy, antsy, itchy, or uncomfortable. I also don’t like looking like this photo that was taken after my last eye exam. I began to keep track of what happened just before I noticed these reactions. The emerging picture is, my system doesn’t like Polyene Antimycotics. And it’s not just my system. It seems my sister has been having similar reactions to the same list of products.

What are Polyene Antimycotics?

Polyene Antimycotics, also known as Polyene Antibiotics are a class of antimicrobial compounds that target fungi – think of them as antifungal agents. They are a subgroup of Macrolides which are natural products with a certain chemical makeup that fall in the Polyketide class. Polyene Antimycotics are most commonly derived from Streptomyces bacteria. Because they have antimicrobial or antibiotic properties, they are often used in pharmaceuticals.

What are they in?

Nystatin sold as Nilstat, Mycostatin, and Bio-Statin; and Amphotericin B sold as AmBisome, Amphocin, Amphotec, and Fungizone are examples of polyene class pharmaceuticals. Natamycin sometimes sold as Pimaricin, is another example. Natamycin is active against yeasts and molds.
moldy cheese
Not only is Natamycin used to treat eye infections, it’s increasingly used to inhibit mold in cheese, yogurt, and bread in the US. It’s also used to preserve crops like oranges. I understand the economic benefit of increased shelf life for food corporations. Having once pulled out and bitten a moldy sandwich from my school lunch bag (thanks, Mom), I even understand the aesthetic benefit.

Nonetheless, for obvious reasons, I don’t want this substance in my food. Whole Foods agrees with me. Since 2003, they have not sold products containing Natamycin. Unfortunately, the World Health Organization and the FDA consider it safe. Current research is on their side, but I wonder whether the safety studies, as designed, would have determined there was a connection between my reaction and Natamycin? Maybe not, it took me a few years to figure it out.

Are we the only ones who experience detrimental effects?

Even if my sister and I are the only two people on earth experiencing adverse effects, that’s enough reason for me to make a choice contrary to what the research indicates. I’m not willing to endure the side effects I experience when I consume Natamycin even if it’s deemed “safe”. Based on the evidence, it’s still not healthy for me. Of course, I wonder whether my sister and I are only two among thousands who suffer effects, but haven’t yet made the connection to polyene ingestion. In time, we may find out.

In the meantime, I’ll be searching for new brands of cheese. Last week, two of my regular selections for over 15 years contained a new list of ingredients that included Natamycin. Not only was it listed as an ingredient, it was presented as a “natural” substance. While that’s technically true, it seems a bit misleading. I don’t think most people expect a natural product that’s also used as a pharmaceutical to be included in their food. I feel disappointed by that presentation and the fact that I must find new options, but I’m a dedicated label reader so at least I noticed this ingredient change before I consumed the cheese.

I am increasingly concerned about the possibility that the cheeses used by my favorite restaurants have also undergone this change. Without the advantage of seeing the label, I could easily accidentally ingest Natamycin.

On behalf of my sister, myself, and anyone else who may be detrimentally affected by polyenes, I’d like to say to* Kraft Heinz – owners of Kraft® Brand Cheese Products & Snack Trios, Nestlé – owners of Buitoni® Brand Products, Saputo – owners of Frigo® & Stella® Brand Products, and all other food companies out there: “I don’t want to have to say, hold the cheese. I just want to say, hold the Natamycin, please.” To the WHO and FDA, and researchers everywhere, “I hope you’ll investigate further.” To anyone whose very real reactions have been dismissed by a medical professional, “I’m so sorry. There’s nothing more discouraging and crazy-making.”

Luckily, it is easier than ever to share information that allows us to make better and better food choices. For that, I am grateful.

*This is not a comprehensive list. These companies also own other brands that may contain Natamycin and other companies may include it in their products as well. This list was compiled based on recent personal experience only. Please read the label before consuming any product.

Disclosure of Material Connection: I have not received any compensation for writing this post. I have no material connection to the brands, products, or services that I have mentioned. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”

April 18, 2017

The Best Supplement May Be A Grain of Salt

When it comes to your health, the best supplement may be a grain of salt. I’m currently participating in a pilot program at the local medical school in which patients meet with researchers to learn about the research process and how we can participate beyond being research subjects. The program is fascinating. It gives us a glimpse into current trends in medical thought, and it makes us highly aware of the limits that plague medical research, the most frequent being time and money.
Limited time and/or money usually lead(s) to smaller studies. Smaller studies are less representative of the population as a whole and thereby less definitive. Studies get published in medical journals, and along the way some ideas take hold in the medical community. Sometimes these ideas are incorporated into standard medical care even when there’s little evidence to support their clinical relevance.

A recent example of this is the practice of testing vitamin D levels when patients report malaise, fatigue or other nonspecific complaints. According to the CDC, the number of blood tests for vitamin D among Medicare recipients increased 83-fold from 2000-2010 and 2.5-fold from 2009-2014 for those with commercial insurance. At the same time, labs performing these tests started reporting normal levels of 20 to 30 nanograms vitamin D per milliliter of blood as insufficient.(1) As a result, many healthy people began to believe they had a deficiency.
fish oil
When numerous studies over the past decade linked low levels of vitamin D to cancer, heart disease, and diabetes, the millions who believed themselves to be deficient began, or were advised, to consume vitamin D supplements. I am one of those who received such advice after routine blood work. The problem is that the existing studies do not provide widely accepted evidence that vitamin D is helpful in preventing or treating these diseases. In fact, current evidence suggests that the main beneficial effects of vitamin D supplements relate to conditions of the muscles, bones, and joints.

And the vitamin D deficiency movement isn’t the first physician advanced idea based on insufficient evidence. Last year, newly issued dietary guidelines removed the restriction on cholesterol consumption because “it is now acknowledged that the original studies purporting to show a linear relation between cholesterol intake and coronary heart disease (CHD) may have contained fundamental study design flaws, including conflated cholesterol and saturated fat consumption rates and inaccurately assessed actual dietary intake of fats by study subjects.”(2)

And the possibly well-intentioned, oft repeated advice to add multivitamins to your regimen because they will make you healthier turns out to be false as well. A growing body of evidence suggests that multivitamins offer little to no health benefits. A study published in the December 17, 2013 issue of the journal Annals of Internal Medicine found that multivitamin and mineral supplements did not work any better than placebo pills.
test tube
We tend to regard science as infallible or research as indisputable. It’s not. We only know as much as we know in this moment. Our knowledge base will always be growing. Today’s theories will sometimes be proven wrong. Some studies will be statistically significant, but clinically irrelevant. Many studies will have too narrow a focus, too small a sample, or too short a term for the results to be taken as definitive on their own.

As patients, we are vulnerable to misinformation bombarding us from corporations that create supplements, food, and medications. Unfortunately, we are also vulnerable to imperfect science and bias within the medical community. To some degree this is unavoidable. This is where a grain of salt can come in handy. Skepticism can lead you to seek additional information.

If you are not medically trained, you cannot assume you know more than your doctor. You can, however, recognize that you have the final word regarding your healthcare. You have every right to ask questions with the expectation of a well-supported, forthright answer. You have the right to your health records. You have the right to seek a second opinion or a third. A second doctor may interpret your test results in a different manner than the first.

And barring an emergency situation, I’ll posit that you have a responsibility to yourself to remain skeptical regarding treatment recommendations until you become well-informed. That being said, the best supplement available for healthcare may be a grain of salt.

Disclosure of Material Connection: I have not received any compensation for writing this post. I have no material connection to the brands, products, or services that I have mentioned. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”