Archive for ‘Education’

September 26, 2017

Food or Feud

In my family, it can be food or feud. The simple solution is for us to eat on time. But what happens when things aren’t simple?food or fuedI am sitting in 3000 square feet of emptiness looking up at the ducts on the ceiling 22′ above me. My head is hurting. I planned to be here until 1pm. Now the heat & air installers say it may be 4pm. I am hungry for more than the cheese and crackers I brought to tide me over until 1. It may be fall, but it is hot!

Hot, hungry, and tired with a headache that won’t quit can be a recipe for a family feud or at least a lot of misunderstanding! When someone in my family starts to become easily annoyed, we immediately look for food. We know that we’re grumpy when we’re hungry. Because of this, we’re pretty good planners and we always have a snack handy, but the unexpected can still sometimes catch us unprepared.

If you’re one of those folks who can go all day without a meal, you’ll have no idea why this is significant. If, on the other hand, you begin to feel shaky, confused, sweaty, and sick if you don’t eat on time, you’ll understand why I’m writing this.It’s hard to count the number of times I’ve told a travel companion that I’m hungry only to have them stall me for 3 or 4 hours. Long before that time is up, I feel like I’m going to throw up my guts. I physically hurt. I cannot think straight enough to tell you what I want to eat.

What I’m describing has happened to me all of my life. It also happens to my son. It probably happened to my grandfather who could not tolerate sugar. He never ate cake, pie, cobbler, or cereal with added sugar. He would occasionally eat chocolate covered cherries. I don’t remember, but I’m guessing he ate those after a meal when they would have less effect.
I say this because that’s my experience with sugar. I can tolerate some after a meal, but feed me pancakes with syrup or a glazed doughnut for breakfast and I will be puking them up in 5 minutes. I will feel a horrible sinking sensation, then wretchedly nauseous.

My grandfather and his sisters who shared this sugar sensitivity were never diagnosed with a condition or disease. I have had blood work done just after two of these episodes. It is always in the normal range. My body may struggle to break down sugars because of celiac disease, but no one has been able to tell me that with any certainty.

That’s the thing sometimes. You know how you’re feeling isn’t normal, but whatever you have isn’t showing up, isn’t being tested for, or falls in the “normal” range. That can feel really frustrating. But life goes on. You learn to recognize when you’re approaching critical and do your best to stay ahead of the problem.

But when a plan suddenly changes, things run late, or there is an unexpected problem, what I most need is for you to believe me when I say I need to eat. I may say it matter-of-factly and without drama, but I need for you to understand that it will soon be more than I can do to remain calm if you ignore repeated requests to stop at the next place we come to.

I know that you may be trying to get to a better restaurant 10 miles down the road, but what I need for you to get is that once I hit a certain point, I do not care whether the food will taste good, I just need it in my tummy. Telling me to hang on because there’s a great restaurant in the next town is like telling me you’re going to break my arm. If I respond as though that’s what you’ve said, it is because that is how it feels to me.

When I am using my energy to stay calm, ask politely, and try not to puke or cry, it is overwhelming to ask me to choose a restaurant, name what I want, or really to communicate at all. Keep in mind that I will have attempted to address the oncoming problem I am sensing before I get to this point. If you did not recognize that those attempts were important, you may not recognize that I want to cooperate, but am feeling as though my situation is dire. Boom! Argument, misunderstanding, or meltdown may be imminent.

While I may get into a situation in which grabbing a handful of crackers from the table is tempting, since becoming gluten-free I have never made that choice. And that adds a second layer of distress when communication becomes difficult.
Today, when I began to feel vague hunger pangs, I ate some cheese and crackers. An hour later, I was getting seriously hungry. About that time, I received the news that my stay would be extended several hours past what I had planned for. I recognized that it was important to either stop the crew and go get food, or find a way to get some brought to me.

I did not wait until I could no longer think straight. I made a short list of people who could help, decided what I would request they do, and proceeded to call the list. Before the next hour was up, I had eaten lunch and no longer had a headache.
plate
Today, things worked out well. Other times, they have not. Most often those have been times that I was accommodating a group or an individual with little insight or empathy. Occasionally it has been at times that I was forced to deal with a person who simply can’t be reasoned with or does not value how I feel.

What’s the best plan in those instances?

Recognize that not everyone you come into contact with has your best interest at heart. If there are people in your life who are routinely difficult and make it hard to take care of yourself, avoid situations that make you dependent on dealing with them. Take a separate car. Choose a different work group. Volunteer for a different committee. Say no if you have to.
Know that you will never be able to make an unreasonable person be reasonable. They must come to a point where they choose to see their contribution to a situation that distresses you before you can reach them. How you feel can be communicated and cooperation can be requested, but it is helpful to know that you cannot force understanding.

You will never be able to make crazy behavior make sense. It is not necessarily important to understand why someone does something. If they exhibit a pattern of behavior that is detrimental to you, it is enough to know they do it and that it is not acceptable to you.

Once you determine that, you have many choices for what to do next:
Set and enforce better boundaries.
Minimize your exposure.
Leave behind friendships, romantic relationships, jobs, or distant relatives that hurt you.
Become realistic about your contribution to any friction in a relationship and apologize for your part in a misunderstanding.
Refuse to be lured into apologizing for taking care of yourself so long as you have managed to remain calm and kind and have tried your best not to inconvenience anyone else. You cannot control every circumstance.
pork roast
On the flip side, you also have choices about how you view another’s actions:
Extend the benefit of the doubt. Some people mean you no harm, but will inadvertently hurt you anyway.
Be present. We are all less likely to hurt each other when we are fully aware of the effect we’re having in the moment.
Allow yourself to see and feel the discomfort of someone else’s distress. Being attuned to subtle signs will change how you respond. Isn’t this what we want from others?

I wish for a partner who understands my physical limitation to the extent that in a pinch he is willing to voluntarily bring me something to eat that doesn’t take much energy to digest – a banana, a glass of milk, or some Greek yogurt. It sounds so simple. I’m sure any man who has failed to do so would read this and say, “I would do that.”

Of course you would if it seemed important at the time. But what if you got distracted by a work call or the kids throwing a fit or trying to figure out how we’re going to pay for replacing a heat & air system we haven’t budgeted for? What if you felt annoyed when I repeated a request for food when you’re planning to EVENTUALLY honor that request? What if you were in the mood for a really good meal and thought I’d be ruining my appetite by eating before our 9pm reservation? What if your mother believes I am trying to avoid eating the meal that’s taking extra time to prepare because she’s making it gluten-free for me? What if you simply don’t believe how sick I feel because you’ve never experienced it and my test results are normal?

We all like to see ourselves as reflected only by our best moments. In real life, we’re experienced by those around us as a sum of our level of presence, our tolerance for vulnerability, our priority in the moment, our insight, our ability to empathize, our reliability, our helpfulness, kindness, and thoughtfulness, our flexibility, stability, and mindfulness, our willingness to entertain different points of view, our truthfulness, genuineness, respect for others, and our courage to make the difficult choice. Other’s experience of us may not match up with what we believe about ourselves.

So what?

We are surrounded by evidence that many of us have difficulty taking care of ourselves. If we were consistently receiving the message that we matter, we are important, we are valued, others wish us well, and our loved ones are willing to help us, would we have a rapidly increasing number of pervasive, preventable, chronic health problems? Would we ignore simple lifestyle changes that can give us the ability to live longer, more productive, more comfortable, and more joyous lives? I don’t think so. I think part of the struggle to eat in a manner that maximizes our health comes from the messages we receive on a daily basis.

Why does that matter?

Only you know how significant, painful, overwhelming, exhausting, or stressful something is to you. You may communicate that clearly and still find yourself without assistance. That does not mean there is something wrong with you, that you should not take care of yourself, or that you do not deserve help. It could mean you need a better communication strategy, or it could mean that you are surrounded by relationships that need to be reexamined.

For my family, it’s food or feud, so there are repeated opportunities to observe, examine, and improve our interactions. Most of us accept each other’s limitations and work together to take care of each other. We also accept that some family members will choose to make things more difficult and that we have many options for dealing with this. Those options may not be easy choices and may require some self-sacrifice to maintain a relationship. We accept that at some point a relationship could become be too harmful to continue. At that point, we can choose to let it go.

Eating on time may not be a feuding issue for your family. Your point of contention could center around eating gluten-free or vegetarian It could be that a battle breaks out every time you try to convince your sister that your diabetic mother doesn’t need carbs. It could that no one but you lives near Grandma, but the rest of the family condemns you for wanting to put her in long-term care.

The specific issue may vary. The importance of expressions of empathy, kindness, helpfulness, thoughtfulness, care and concern, and acceptance for ourselves and each other cannot be overstated. These expressions are critical to our health, our families, our communities, and our nation. They make a difference. They can make THE difference, especially when things don’t go according to plan.

https://www.niddk.nih.gov/health-information/diabetes/overview/diet-eating-physical-activity

http://www.webmd.com/diabetes/tc/hypoglycemia-low-blood-sugar-in-people-without-diabetes-topic-overview#1

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.
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.

http://emedicine.medscape.com/article/932104-clinical
https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-017-0791-y
http://www.cbsnews.com/news/multiple-sclerosis-mediterranean-diet-to-counter-effects-study/
https://www.medpagetoday.com/allergyimmunology/allergy/15972
https://www.medpagetoday.com/allergyimmunology/allergy/15972
(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 http://glutenfreesingles.com/. 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 http://www.immusant.com/patient-resources/learn-more.php.

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.

https://www.fda.gov/Food/GuidanceRegulation/GuidanceDocumentsRegulatoryInformation/Allergens/ucm362880.htm
https://www.beyondceliac.org/celiac-disease/facts-and-figures/
https://www.csaceliacs.org/diagnosis_of_celiac_disease_fact_sheet.jsp
https://www.wehi.edu.au/research-diseases/immune-disorders/coeliac-disease
http://www.immusant.com/patient-resources/clinical-trials.php
http://lilacpatisserie.com/wedding-cakes
http://www.dempseybakery.com/
https://www.tu-lusbakery.com/menus/picture-gallery/
*http://www.sciencedirect.com/science/article/pii/S001650850900523X

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?
reaction
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.”


https://www.drugs.com/drug-class/polyenes.html

http://www.natamycin.com/usage

http://www.wholefoodsmarket.com/about-our-products/quality-standards/food-ingredient

http://www.kraftrecipes.com/products/productmain.aspx

http://www.nestleusa.com/brands/culinary

http://www.saputo.com/en/Our-Products