support

Why do I care what gluten is?

For the most part, you don't really need to know.  However, being aware to what gluten is, is the first step in being supportive to your gluten intolerant friends and family.

How do I be supportive to my gluten intolerant loved ones?

Here are some suggestions, but please know the fact you're here reading this blog proves you're already supportive! Living with these gluten issues comes with a lot of trial and error.  Don't feel bad when you slip up, that's proof you're trying!

Ten Tips for Being Gluten-Free Supportive

1. Every time you see a product or recipe that looks good and is "Gluten-Free" take a minute to forward the link or send a picture to your gluten-free loved one.
2. Ask your friend what gluten free food they've had recently that they enjoyed.
3. Give your friend encouragement during the holiday season, when it's the most frustrating to overcome.
4. If you're hosting a potluck, send a list of the top known food allergens to your guests.  Ask your guests to put a small label on their food if it includes one of the allergens.
5. When you're invited to a potluck, bring a dish that doesn't include any of the common food allergens.  Or consider making a dish that the guests will know is clearly gluten free.  Encourage any friends attending with you to do the same.
6. When inviting someone to eat with you for the first time, ask them if they have any food allergies.
7. When inviting someone gluten-free, research briefly beforehand.  Are there any restaurants in the area know to be entirely gluten-free?  If so, this would be the best first choice.  If not, consider a restaurant that has a separate gluten-free menu or has gluten-free items clearly marked on the menu.
8. Don't offer your gluten-free friend food unless you're confident it will be safe for them.  
9. When you visit a restaurant and notice they're gluten-free friendly (such as having a whole menu dedicated to gluten-free), let your GF friend know.
10. Avoid cross contamination.

What is "Cross Contamination"?

Strength of sensitivities to gluten differ on the individual. Some people are so sensitive that they can have a reaction that lasts day due to the smallest amount of cross contamination.  Here are some tips for avoiding cross contamination:

• Place gluten-free items above gluten-containing items in the pantry and refrigerator, so gluten particles don't fall or settle into gluten-free foods.
• Identify gluten-free foods with an indelible pen or stickers.
• Thoroughly clean all dishes, pots, pans and utensils between uses.
• Purchase a second, gluten-free toaster.  Buy a separate waffle maker or bread maker if the one the family uses doesn’t have parts that can be disassembled and placed in the dishwasher.
• Have two sets of condiment jars or a squeezable condiment container, reducing the risk of contaminated spoons getting dipped into your mustard, jam or peanut butter.
• Don’t use wooden spoons or cutting boards that also are used to prepare gluten-containing foods because the spoons and boards can harbor residual gluten and bacteria. Metal or plastic are better options.  Use a separate set of cutting boards for gluten-free food prep.
• Cover shared grilling surfaces when barbequing because unless the grill reaches 500˚F or higher for 30 minutes or longer, grilling won’t eliminate any residual gluten.
• When planning parties at home, prepare a buffet of foods that are 100% gluten free to prevent accidental cross-contamination among family members and guests.
• In supermarkets, don’t buy unpackaged foods stored in bins. The scoops used to place the foods in bags or containers may have been previously used on nearby gluten-containing foods and may not have been sufficiently cleaned.
• Use different colored stickers to distinguish between gluten-containing and gluten-free products in the pantry and fridge.
• Purchase a colander in a different color for gluten-free foods so it doesn’t get mixed up with the colander used for gluten-containing foods.
• Buy gluten-free grains that are certified gluten free to ensure cross-contamination didn’t take place during processing.
• Buy gluten-free flours marked as gluten free from reputable companies that are more likely to test for gluten.
• Avoid purchasing imported foods. Other countries may not abide by the same gluten-free standards as the United States.
• When dining out, always ask
• The food be in its own separate and thoroughly washed pot or pan.
• The cutting boards and utensils be separate and thoroughly cleaned.
• That the food handlers change their gloves.

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a diagnosis

Our society isn't perfect.  I learned during my period of illness that it is hard to find support when your illness doesn't have a name.  If you'd like to read about what life is like being undiagnosed, this short post is very accurate for my experience.  I found that when I started listing all my symptoms, it made it easier for others to understand.  But who wants to go around listing all their miseries?!

After 1-2 years of declining health, thousands of dollars spent in healthcare, over 50 doctor appointments, hospitalizations, I think I may have my diagnosis now.  My allergy skin test this morning revealed I'm allergic to pork, cow's milk (not the same as lactose thankfully!), onions, and almonds.  I didn't react to the wheat, so he suspects I'm only intolerant to wheat. When I eliminated wheat from my diet, I started feeling better, but not healthy.  These unknown and undiagnosed other food allergies could be the cause.  He thinks once I stop eating all 4 foods I'm allergic to, and wheat that I'm intolerant too, that I should see my immune system improve.

With my many doctors visits, I've been given answers before, and we discovered they weren't correct.  Here's to hoping I'm done searching! .. and I'm excited by this diagnosis! But why, Rachel?! Having to eliminate these 5 foods from your diet will be a hassle.  I want to tell you why, and I want you to never forget.
Never under appreciate when your illness has a treatment.
I've learned so much about autoimmune diseases and chronic illness recently. I've personally experienced how hard life can be when you can't do anything to control your body. I know having surgery, taking medications, or eliminating food from your diet for life as a treatment can be a hassle.  The other (and not discussed enough in our society option) is to not get better.

I guarantee the strongest people you know are the silent warriors fighting chronic illness. The following are some of my favorite quotes from some of these warriors.  Here is the post with all 25 quotes if you'd like to learn more.

“I’m not lazy. I’m in pain, exhausted and quite possibly depressed because I feel useless and cannot make others understand what I go through on a daily basis.” —Jodie Farber Brubacher

 “When I’m pushing through… I’m really pushing myself too hard.” —Debra Declue

“I live a double life. What you see when I am at work: someone who is well put together, always dependable, smiling, will always tell you she is doing fine. My reality: I’m a mess, in so much pain, my smiles are forced, sometimes I have to find a quiet place to cry. But it’s much easier for me to fake it because coworkers don’t want to hear my truth day after day.” —Amber Weller

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Peanut Butter M&Ms

Yesterday Nate and I woke up to Memphis's first snow fall.  I decided to embrace the day, skip work, use a vacation day and hang out all day with Nate.  He made coffee and gluten free Mac and Cheese.  Then we played games, took Polaroid photos of the cats and the snow, watched movies, and took an unscheduled couch nap. When we woke up around 5pm, we decided to embrace our day of laziness.  We walked over to Walgreens and picked up frozen food, 5 hour energy, Swedish fish, and peanut butter M&M's.  Everything we purchased appeared to be gluten free via ingredient list inspection.

At 10:30pm I began to feel nauseous so I laid on the bed and watched Nate play Grand Theft Auto V. Within 30 minutes, my abdomen started to feel uncomfortable, full, bloated.  It quickly looked like I was in my 3rd trimester of a pregnancy.  The bloating made me so uncomfortable that I couldn't lay comfortably.  I took a gas-x in the hope that it would help my bloating.  The effect is usually minimal. I finally decided to let warm water soothe me until I was sleepy, and sat in the shower for an hour.

During my shower, I started the investigation.  It was time to determine what poisoned me. I start first by looking at the time line.  Bloating reliably appears 4-6 hours after I've ate gluten.  If I was cross-contaminated, bloating is the only symptom I'll really notice.  The items that fit into the time line were: swedish fish, Amy's frozen gluten free meal, and peanut butter m&ms.  Since I've ate 2 of the items many times without a reaction, I determined it was the peanut butter m&ms.  The final step of my investigation is to search celiac forums and see if other reacted too.  Even though Mars says their peanut butter m&m's are gluten free, the celiac forums didn't seems to agree. I wish ingredient list inspecting was all I had to worry about.  But to be healthy I have to ingredient list inspect daily, question cooks, explain to wait staffs, turn down restaurants, skip eating at pot lucks, google foods on celiac forums, and pay almost twice as much as others for my food.

Waking up the morning after being glutened is the worst.  If I ingested enough gluten, I'll wake up with a killer migraine.  Regardless. I always sleep as hard as a rock and for 12 hours.  When I woke up at noon, I felt so drowsy I spent 15 minutes trying to open my eyes, speak, and clear out my sinuses.

Too bad being glutened isn't just a 12 hour reaction.  The rest of today I'll be fighting nausea, bloating, full body aches, and extreme exhaustion. I'm very confident I'll have to take a 2-3 hours nap, and I'll be back asleep at 9pm.  The bloating will last up to a week, and the aches and exhaustion for at least 3 more days.

How can you plan your week? When your body makes the calls?

Update 4 days later: My body is still bloated, still tired, still nauseous, and I've had hives sprouting up since the incident.  I awoke the next morning with a puffy face covered in hives.  Not only are they uncomfortable, unsightly, but they're also unpredictable.

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Medical Conditions

What are the most common conditions that cause people to eat "Gluten Free"?

• Wheat Allergy
• People with a wheat allergy have an immediate immune reaction to any of the hundreds of proteins found in wheat. Gluten is a mix of proteins in wheat.  So someone with a wheat allergy could have a gluten allergy or could not.
• Only 4% of adult Americans have a food allergy, so the likelihood that you'll meet someone with a wheat allergy is very low.
• Reaction
• The reaction can be caused by ingesting wheat or the person's skin coming into contact with wheat.
• The immune system reacts very fast (within minutes to a few hours) and can involve a range of symptoms from nausea, abdominal pain, itching, swelling of the lips and tongue, hives, to trouble breathing, or anaphylaxis (a life-threatening reaction).
• Luckily 65% of children out-grow the allergy, but adults with the allergy have it for life.
• Test
• An allergist can do a skin prick test for a wheat allergy.

• Celiac Autoimmune Disease
• Celiac is a genetic autoimmune disorder that causes a whole body immune reaction when gluten is ingested. I like to refer to my "gluten episodes"(times where I accidentally ingest gluten) as "the gluten flu" since it lasts 3-5 days for me and feels very similar to having the flu.
• Only 1% of Americans are estimated to have Celiac.
• Reaction
• When gluten is ingested it causes damage to the cells that line the small intestine.  This can lead to malabsorption of nutrients. There are over 300 identified symptoms of Celiac.
• Some common symptoms: anemia, anxiety, bloating, gas, constipation, delayed growth, depression, diarrhea, discolored teeth, fatigue, migraines, infertility, irritability, joint pain, mouth sores, thin bones, and tingling and numbness.
• Some of my own personal symptoms: lifelong severe allergies (I'm talking- had all carpet in the house removed, slept on a water bed, often slept with a dust mask on, would have asthma attacks if I went in a house where someone used to own a cat), lifelong asthma, broken bones, infertility/no menstruation, thyroid level issues, tonsil issues, depression, anxiety, irritability, acid reflux, IBS, migraines, carpal tunnel syndrome, my week long hospitalization for dehydration, ADHD, hot flashes, stomach pain, bloating, vomiting, bathroom issues, and I'm sure more.
• Test
• There are many tests that can be used to test for Celiac including: blood tests, intestinal and stomach biopsies, and DNA profiling.
• Very important notes: 
• No one test is very accurate.  Many of the tests have high false positive rates, as high as 50%!  This means a person can take the test, have Celiac, and there's still a 50% chance the test will tell them they do not have the disease.  Therefore, most doctors will do many tests before they make a diagnosis. 

• Duhring's Disease = Dermatitis Herpetiformis = Gluten Rash = Celiac Rash
• 15-25% of individuals with Celiac disease experience an itchy, stinging skin condition that is often difficult to diagnose.  (.25% of Americans!)
• Reaction
• Skin contact with gluten-containing foods and products has not been shown to cause outbreaks.
• The rash usually occurs around time periods of gluten ingestion and appears on the elbows, knees, and buttocks and it is typically symmetrical (meaning it appears on both sides of the body).  The rash goes away spontaneously after a week or many months.  When it disappears it can leave brown or pale marks on the skin where pigmentation is lost.
• Test
• A skin biopsy of one of the blisters is the only way to test for this disease

• Non Celiac Gluten Sensitivity = Gluten Sensitivity = Gluten Intolerant
• Gluten Sensitivity is still in the earliest stages of understanding.  It was thought that people with this condition only experienced discomfort symptoms and did not have any internal long-term damage, but it has been proven recently that NCGS does and is similar to Celiac.  Currently research has not confirmed that gluten is the culprit, but symptoms improve on a gluten-free diet.
• The majority of people you meet who have a gluten food sensitivity will have this condition. It's the most commonly occurring and estimated to affect up to 6% of Americans.
• Reaction
• “foggy mind”, depression, ADHD-like behavior, abdominal pain, bloating, diarrhea, constipation, headaches, bone or joint pain, and chronic fatigue
• 
  
• Test
• There are no definite tests or biomarkers.  Diagnosis is currently determined by ruling out Celiac Disease and Wheat Allergy, and determining if improvement is seen on a gluten-free diet.

• Preference / Diet
• Some people adopt a gluten-free life as a way to lose weight and be healthier.  The gluten-free diet is healthier for people with gluten related food sensitivities.  Others may find the diet makes them feel better, but this may be attributed to the fact that they also incidentally increase their meat and veggie intake. Gluten-free baked goods designed to be similar to popular baked goods frequently have twice as many calories as the original gluten version.

How do they treat these types of food hypersensitivities?

Diet changes are the only known way to treat these issues with gluten/wheat.  This is both good and bad.  Good:  The individuals don't have to take medicine.   At least there is a treatment! Celiac individuals should feel lucky! Other autoimmune diseases have no known treatments.  Bad: Unless the individuals only eat food they've prepared, they won't always have control of their situation. Those who are very sensitive can say no to pot lucks, fast food, and frequently dining out. Go ahead and introduce yourself now to some frequently asked questions, your diet restrictions will unfortunately come up often now.

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being SICK (34 lessons learned by being chronically ill)

Since the middle of the summer of 2016, I've been SICK.  I use all caps to refer to this time, because all lower case just doesn't seem to describe it accurately.  After my Christmas visit to my family, I decided to start a list of what I've learned by being SICK.  I know as I start feeling better, I may forget some of the struggles I encountered.

“Miraculously recover or die. That's the extent of our cultural bandwidth for chronic illness.” 
― S. Kelley Harrell

1. The accuracy of "The Spoon Theory"

2. Seasons come and go before you can blink. You spend all your energy on everyday tasks and never get to spend time enjoying the seasons. So they disappear before you've even greeted them. 

3. The chronically ill warriors spend multiple spoons every day just to appear fine. They aren't. 

4. The people who ask you how you are doing, then stop and wait to really hear, are the rare beautiful gems of friends. Especially when they end it with a hug.

5. Something you've always enjoyed can become your biggest daily obstacle you have to overcome.

6. It is hard to teach awareness without passing over into annoying. 

7. Some people may distance themselves but it isn't always your fault or theirs. Some people may become distanced from you simply because you no longer have the energy to do the activities you used to do with them.

8. It takes an unexpectedly large amount of energy to work, eat, clean yourself, keep your home  manageable, and it's stressful picking outfits is when you're frequently hit sudden bloating. 

9. Family close to help you in your hardest moments is something to be thankful for. Friends who volunteer to take on that role deserve medals.

10. When someone gracefully accepts your RSVP withdrawal, it can be the biggest stress reliever that day.

11. Your body can make you feel unbelievably hopeless and out of control.

12.  When someone sends me a recipe or article about my new gluten-free life, it touches me more than they probably realize.

13. It's crucial to have a strong bond with your partner when you become so sick you have to rely on them to keep you alive. (I wish I was exaggerating.)

14. A a supportive employer, boss, and coworker team can reduce your stress. Weekly doctor appointments, in and out of hospitals, new symptoms every other day for 6 months, can take a toll on you.  It's a great gift to not feel as if you have to hide your illness from your work.

15. That no one should ever feel bad for trying and failing. Every person that has tried to make me feel comforted and safe has truly made me feel so touched. It's okay to slip up and offer me a cupcake or accidentally cross contaminate me. Gluten-free has a big learning curve.

16. Everyone has their own struggles. Many are unspoken but not any less.

17.  It's not easy to empathize when you've never experienced something similar.

18. Understanding and being inclusive of others is a skill that's underrated.

19. Why don't more potluck events consider special diets? Why can't we label our dishes "dairy free", "gluten free", "vegetarian", "vegan", etc?

20. Seeing a psychologist regularly is worth the cost.

21. You can feel immense levels of guilt by being sick. You can't meet everyone's expectations of you when you can't control your body.

22. Health care is expensive.  I quickly realized researching my medical issues extensively was very important.  (Who cares if others accuse you of using google as your doctor if it helps you.)

23. There is a deep constant desire to be understood when you have an undiagnosed illness.  People have a hard time being supportive when it's a long list of symptoms and there's no label on your illness.

24. You have to learn to fight for yourself when you see doctors.  In my 6 months of true illness, I found only one doctor who didn't want to push me out the door with a diagnosis of another symptom and not the cause.

25. What you eat plays a bigger role in your life than you realize.

26. My life has possibly been more difficult because I was undiagnosed for 28 years.  What opportunities did I miss by not knowing sooner?

27. Mental illness symptoms can be caused by underlying diseases.  

28. You can be so tired you don't want to eat.  

29. It is far too easy to unintentionally push people away from you by sharing just a small portion of your medical issues with them. It doesn't take long for them to start feeling dragged down.  Sharing your illness with others can be a burden on them.

30. Having at least one person in your life who always answers your tear-filled phone calls is a blessing.

31.  Exercise can be missed.  I bought a brand new road bike in the beginning of my illness.  I've only had the energy or health to ride it twice.  For months I wished I could ride it without feeling miserable.  I often had to stop and rest if I did a flight of stairs.  Frequently when I got home from work, my only option was to nap.

32. That when you are SICK, your priorities change drastically.  I never thought school would drop so low on my list. 

33. I never realized that listening to friends' problems and providing support would cost a "spoon."

34. You can't overcome being SICK with willpower. You learn quickly that you have no option but to listen to what your body tells you to do.

(This list may be updated as time passes. The order is simply the order I came to think of them.)

If you've ever experienced something like this and would like to make a suggestion to my list, please comment!

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Glue

Gluten (from Latin for "glue") is a mixture of proteins found in wheat, barley, rye, some oats. It is truly like glue for baked goods. It holds the final product together, keeps the product from being crumbly, and gives the product it's airy texture and elasticity. Without gluten, it is exponentially harder to make baked goods that taste good, aren't as dense as a rock, don’t have double the calories, and don't crumble into a million pieces.

Gluten has recently become my biggest fear. The daily activity of eating used to be one of the highlights of my day. Currently I consider it a chore and one I dread. I’m confident it’ll get easier as time passes. Today, I am too scared to dine out. Not only do I have to explain to the staff what gluten is, but also how to avoid cross contamination. So far the majority of my dining out experiences have resulted with “gluten flu” as I call it. It’ll get easier. Right?

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