Posts tagged ‘Celiac Disease’

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.”

July 18, 2016

Dehydration Can Increase Gastrointestinal Symptoms and Joint Pain

treeDehydration can increase gastrointestinal symptoms and joint pain. Today it’s 97º with a heat index of 105º. I’ve been without power for the past 4 days since a tree took down my electric lines in a storm. The air is back on now, but it still feels hot in my house. Even minor activity like wiping out the refrigerator I had emptied early in the outage causes me to break a sweat…inside…in the air conditioning. I keep drinking water, but I feel like I can’t get ahead.

With the constant heat and humidity, it’s a continual battle here to drink enough water in the summer. If you’re not careful, it’s easy to become dehydrated. And for someone like me who has digestive issues, dehydration can make them worse.

One of the early warning signs of dehydration is pain ranging from heartburn to gastroesophageal reflux disorder (GERD). If you have Celiac Disease or are gluten intolerant, this pain can be mistaken for a response to an accidental gluten ingestion.

Another indicator is joint pain. The cartilage in your joints is composed mainly of water and, lacking blood vessels, is dependent on water to deliver the nutrients required for maintenance and repair. Dehydration contributes to abrasive damage that happens when cartilage surfaces glide over each other when you bend your arms or knees. Since the inflammation experienced by those of us who suffer from autoimmune disorders often experience joint pain, this too can be mistaken for a problem other than dehydration.

If you feel extra tired or depressed, it can be a reflection of a lack of sufficient hydration. All I wanted to do this afternoon was sleep. I’m certain this was a result of all the hours I’ve spent in extreme heat the past few days without managing to drink as much water as needed. I have functioned through sheer force of will which is absolutely not the healthiest way to function.

When I get too hot, I don’t notice that I feel hungry or thirsty. Sometimes, I have to stop what I’m doing and eat something salty to trick myself into drinking more water.
water
So, how much water is enough?

Of course there’s no easy answer. It depends on size, weight, environment, and activity level. Some experts recommend between one-half and one ounce of water for each pound you weigh every day. That’s 9.375 eight ounce glasses per day on the low end and 18.75 eight ounce glasses or 2.34 gallons per day on the high end for a 150 lb person. Hardly any of us drink 2.3 gallons of water each day!

If you notice that your urine is dark, you have a headache, you’re overly tired or experience the other symptoms mentioned above, increase your water intake and see if the symptoms improve.

Also keep in mind that many fruits or vegetables contain a significant amount of water and are refreshing when served chilled. Watermelon, cantaloupe, honeydew, pineapple, raspberries, grapes, cucumbers, zucchini, and spinach are all high in water content. A chilled wedge salad or a cup of gazpacho can fill you up and hydrate you at the same time.

As summer moves toward its peak, we’ll all have plenty of opportunity to be reminded to hydrate. For those of us who struggle with gastrointestinal or joint pain, a little extra water may bring us some unexpected relief.

Bottoms up!

https://www.healthambition.com/how-much-water-do-you-need-daily/

http://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/water/art-20044256

http://nutritioninfo.tripod.com/id19.html

April 25, 2016

I Can See Clearly Now

Luckily, I can see clearly now – even when I play 2048 obsessively on my phone. In the years just prior to adopting a gluten-free diet, I suffered from many symptoms. One of those was dry eyes. When I woke up each morning, it felt like I had gravel in my eyes. I could no longer command my eyes to water at will. I sometimes asked a colleague in my office to tell me a sad story so I could cry and make my eyes feel better.
fingerglasses
I tried every over-the-counter eye drop I could find. Some didn’t work at all. I was allergic to others. My opthalmologist explained to me that my eyelids were sticking to my eyes and causing little abrasions. That sounded bad and felt awful. She insisted I use RESTASIS®. I complied.

As I struggled to get a diagnosis for my constant aching, itchy rashes, tummy pain, diarrhea, and weakness, I began to include dry eye in my research. I discovered Sjogren’s Syndrome. This autoimmune disease affects an estimated 1 in 10 dry eye patients.

It often occurs alone, but can also occur along with other autoimmune diseases like celiac, lupus, rheumatoid arthritis, or scleroderma. As I began my gluten-free experiment, I was curious whether healing my gut would have a positive effect on my dry eye. My opthalmologist and I designed a plan to wean me off RESTASIS® so I could find out.

Like the itchy rashes caused by my dermatitis herpetiformis, the improvement in my eyes on a gluten-free diet has followed a much slower and sporadic path than the quick reduction in muscle pain & weakness, stomach pain, and other intestinal symptoms I experienced. My increased use of electronic devices hasn’t helped. While my eyes are still on the dry side, they are much improved as evidenced both by the way they feel and by my optometrist’s observation during yearly exams.
water
What I’ve discovered along the way is that overall hydration is important. When I drink too much tea or not enough water, I notice a difference. Wearing mascara of any sort results in drier eyes. And I’ve learned that I can supplement the eyes’ self-cleaning action by using eye wash once or twice a day. By making choices to support eye hydration, I had reached a level of adequate hydration with only occasional annoyance, but I can see more clearly now.

Recently, I found an eye cleansing yoga routine and decided to give it a try. It’s a simple set of eye movement exercises plus a period of time breathing while staring at a candle flame or small object about 24 inches in front of the eyes. As I stare and try not to blink, my eyes begin to water in the same manner I was previously able to command them to water at will.

After a few of days of this practice, I decided to try the staring technique while working. I stopped what I was doing, stared at an icon on my computer screen, and boom-bada-boom, it worked. My eyes began to water. I’m thrilled to have another simple solution at my disposal. I can see clearly now, can you?


http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/definition/con-20020275

http://www.healthandyoga.com/html/news/meditation/trataka.aspx

January 27, 2016

Cut It Up Into Bite Size Pieces

This week when I made chicken soup for my 95-year-old cousin (isn’t she cute!),
CEI cut the chicken up into bite size pieces. It was really more like chicken stew – thick and full of carrots, celery, potatoes, black eyed peas, and rice. Until I cut up the boneless, skinless chicken thighs I included, it was impossible to take a bite that contained vegetables, broth, AND chicken. In fact, the full size chicken thighs were an obstacle that made it difficult to even get s spoon down to the vegetables and broth. Breaking that obstacle up into small pieces resulted in a uniform consistency and full flavor in each and every bite!

When I started the soup, I didn’t spend much time thinking about what it would look like when I was done. I just knew I didn’t want to have to clean another cutting board right then, so I didn’t bother to cut up the chicken before it was cooked. Once I was ready to eat the first bowl, I felt frustrated by the large pieces of meat I had to deal with. Obviously, that was low level frustration. It was only soup and I knew exactly how to fix the problem in a matter of minutes.
soup
But let’s say it hadn’t been soup. What if I were feeling frustrated by the idea that committing to a gluten-free diet means I’ll never have my favorite rolls again AND I’ll have to read labels or ask questions before ordering food. I won’t be able to drink my favorite beer. I may have to eat before parties or carry food with me. I’ll have to figure out a system for keeping my food separate from the rest of the family’s. I’ll have to explain to my grandmother why I can’t eat her scrumptious strudel. It will be harder to eat fast food for dinner or doughnuts at the office. It just seems like way too much trouble.

Most of the gluten-free community has walked down that road at one time or another. I managed to get my mind around the obstacles, make the commitment, and stick to the diet only to find myself a couple of years later on a business trip, really hungry and standing in the cracker aisle of a grocery store…pouting. Seriously, I was pouting like a small child. I eventually grabbed a banana and some nuts and was fine, but I had that moment of, “Do I really have to do this?” Of course, by the time I was pouting, I also knew how much better I feel when I’m gluten-free so I wasn’t really tempted to cheat.

If you suffer from any of the following symptoms, you could have gluten-intolerance or celiac disease and, after testing, your doctor may recommend a gluten-free diet. If the idea of making such a significant change feels overwhelming to you, perhaps you can take the chicken soup approach – figure out your biggest obstacle and break it down into easily digestible pieces then proceed with a plan. As you have success, it will build upon itself and the process will become easier and the routine more uniform.

Symptoms:
General
Vague abdominal pain
Diarrhea
Weight loss
Malabsorption (Abnormality in digestion or absorption of food nutrients in the GI tract.)
Steatorrhea (Formation of non-solid feces.)
Behavioral changes
Fatigue or malaise
Growth delay

Hematological
Anemia
Hematologic diathesis
Skin/Mucous Membrane
Dermatitis Herpetiformis (Skin manifestation of celiac disease.)
Alopecia (Baldness – both universalis (from the entire skin) and areata (diffuse hair loss))
Aphthous ulcers (canker sores)
Abdominal or generalized swelling
Epistaxis (nose bleeds)
Easy bruisability
Cheilosis (Scaling at the corners of the mouth.)
Keratoconjunctivitis sicca (Chronic dry eye.)
Stomatitis (Inflammation of the mucous tissue of the mouth.)
Scaly dermatitis (Inflammation of the skin.)

Musculoskeletal
Non-specific bone pain
Joint pain(8)
Osteopenia (Low bone mineral density. Possible precursor to osteoperosis.)
Tetany (A combination of signs and symptoms due to unusually low calcium levels.)
Hyperreflexia (Overactive neurological reflexes.)
Carpopedal spasm (Spasms of the hands and feet.)
Cramps
Laryngospasm (Spasm of the larynx, the voice box.)

Neurological
Ataxia (coordination problems)
Epilepsy
Myelopathy (Damage to white matter that carries motor signals to and from the brain.)
Peripheral neuropathy (Numbness and pain in hands and feet described as tingling or burning.)
Seizures

Gastrointestinal
Abdominal pain
Anorexia (poor appetite)
Bloating
Constipation
Cramps
Diarrhea
Dyspepsia (Recurrent discomfort or pain in the upper abdomen.)
Flatulence, distention
Foul-smelling or grayish stools that may be fatty or oily
Hepatic disease (liver disease)
Hypoglycemia (low blood sugar)
Steatorrhea (Formation of non-solid feces.)
Stomach upset
Malabsorption-Related
Bowel is less able to absorb nutrients, minerals, and the fat-soluble vitamins A,D,E, and K.
Abnormal coagulation
Anemia (Lack of healthy red blood cells.)
Bacterial overgrowth of the small intestine
Failure to thrive (Poor weight gain and physical growth failure over an extended period of time in infancy.)
Fatigue
Growth Failure
Hyposplenism (small and under active spleen)
Hyperparathyroidism (Excessive production of parathyroid hormone because of low calcium levels.)
Bone deformities
Broken bones
Swollen joins
Iron deficiency anemia
Malnutrition
Megaloblastic anemia
Muscle Wasting
Osteopenia
Osteoporosis
Pubertal delay
Vitamin K deficiency
Weight loss

Miscellaneous
Depression
IgA deficiency (Means you’re 10 times more likely to develop celiac disease, AND gives a false negative on screening.)
Increased risk of infections
Irritability
Autoimmune disorders:
Sjogren’s syndrome
Thyroid disease
Diabetes mellitus type 1
Autoimmune thyroiditis
Primary biliary cirrhosis
Microscopic colitis
Infertility
Miscarriage

When you consider the time and energy you lose to pain, fatigue, doctor’s visits, and managing symptoms, it will soon become clear that removing those obstacles will result in plenty of time and energy to pursue lifestyle changes. And unlike using pharmaceuticals, removing gluten from your diet has no deleterious side effects or long-term health dangers. You can eat a healthy, balanced diet without the artificially fortified grain-based products that predominate our grocery stores and television ads.

If you feel you just can’t give up fast food, don’t. That doesn’t mean you’ll be able to eat all of your favorites, but a quick review of the nutrition facts on convenient fast food restaurants’ websites will give you options that you can rely on when you’re pressed for time or want to join your kids in an occasional outing.

If you travel to rural areas for business, throw a Kind bar in your bag so you feel confident that you won’t get too hungry while searching for a local steak and potato restaurant. I sometimes carry a cooler bag with a couple of peeled & salted boiled eggs and some baby carrots along with a banana. That’s enough for a meal if I run out of restaurant options. And never assume that you won’t be able to find anything in a convenience store. I recently saw Glutino pretzels and gluten-free fruit snacks at the gas station in a small town.
pretzels
While I failed to do this when making soup this week, the process is always easier when you visualize what things will look like in the end, so imagine what it will look like when you no longer feel sick, tired, and grumpy. Holding that vision in your head helps you break overwhelming ideas down into tiny, bite size momentary decisions that aren’t hard to make. And really, that’s all it takes.

I remain gluten-free with lots of very simple decisions every day: ordering grilled chicken rather than fried, no croutons on my salad, no gravy on my potatoes, befriending a waiter who will help me communicate with the kitchen, reading the labels on packaged food, hosting meetings at my house, and saying no when I need to say no. And I don’t think I’ve felt like pouting in the past 9 years!

It’s natural to feel some fear and temporary depression when making significant change. The good news is that these feelings soon dissipate just like the sore muscles you get when you start lifting weights and no matter how you feel right now, improvement will result from the small, gradual, and consistent positive steps you make over time. Perhaps we should call it a Gluten-Free Practice.