Tag Archives: celiac disease

What’s the difference between gluten intolerant, sensitivity, and celiac?

Gluten free

*The following post isn’t meant to diagnose or treat any medical condition. It is 100% necessary and encouraged to see your doctor if you have any concerns about your own body.*

With the holidays merely hours away, our little family has three family dinners to attend this week. For each meal I have been lovingly contacted about concerns regarding gluten-free food; as a family member living with celiac disease, it’s hard having me over for dinner. With this in mind, I thought it might be helpful to break down what celiac disease is and how it differs from gluten sensitivity and intolerance.

What is gluten?

Gluten is a protein found in wheat, barley, and rye. Most people are familiar with wheat, and often people will say something like, “Oh, so you can’t have bread or pasta?” Exactly, along with about 1, 552 other things, like beer (which is fine with me, blech), most processed food, baked goods, and sauces, soups, and dressings. Gluten isn’t normally listed as “gluten” on a package; gluten is found in ingredients that are derivatives of wheat, barely, and rye. For example, “modified food starch” is often code for gluten.

What is gluten intolerance?

Gluten intolerance means the body has a negative, physiological response when it reads gluten in the digestive process. Intolerance can be broken down into two main categories:

  1. Gluten sensitivity
  2. Celiac disease

What’s confusing is these are two totally different conditions with similar symptoms.

  1. Gluten sensitivity:

Your  body is sensitive to gluten when it reads gluten as a foreign substance and tries to get rid of the gluten for you.  It’s analogous to when you get something in your eye. When there’s a object in your eye, something that shouldn’t be there, your eye starts to hurt and water, which is your body’s response in trying to push the object out. It’s uncomfortable and painful, but once it’s out, you feel better.

When your body is “gluten-sensitive,” your body reads gluten as something that shouldn’t be there and tries to expel it from you. Symptoms can include (but aren’t limited to) gas, bloating, diarrhea, fatigue, headache, stomach ache, and nausea. Some people may vomit (this is a protective response your body activates to get rid of the contaminant).

Just like you aren’t allergic to the pebble or eyelash you got in your eye, you aren’t necessarily allergic to gluten, but your body has a serious reaction nonetheless. It’s talking to you, letting you know something isn’t right. Gluten-sensitivity isn’t trendy. It’s important to listen to your body and be careful to limit or avoid gluten intake.

    2. Celiac Disease

Sick womanThis is a gastrointestinal disease wherein the body attacks itself, specifically the villi in the small intestine, when it reads gluten. Villi are little finger-like extensions that line the intestinal wall and help absorb the nutrients in food. When the villi are damaged and/or destroyed, the intestinal wall becomes analogous to a glass surface, where nutrients essentially slide on by rather than becoming absorbed.

Because the body attacks itself, celiac disease is classified as an auto-immune disorder. It’s genetic and sometimes won’t present itself until well into the adult years. I was finally diagnosed when I was 33 years old, though I had many symptoms for years before I was finally tested. In addition to constant stomach upset, as l listed in the gluten sensitivity section, I also battled skin rashes, interstitial cystitis (fancy name for painful, irritable bladder syndrome– essentially feels like a monthly bladder infection), headaches, and fatigue.

After getting negative results from food-allergy tests, my allergist had a “big picture” moment where we looked at all my medical conditions and symptoms as a comprehensive landscape, and he said, “Let’s test for celiac.” Bada-bing-bada-boom, the blood test revealed anti-gliadin IgA antibodies10 times higher than normal. In addition, I went to a dermatologist to have my skin rashes biopsied. Bada-bing-bada-boom, results came back as dermatitis herpetiformis. This is a fancy name for celiac disease manifested through the skin and confirmatory evidence that I officially have celiac disease.

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Celiac disease is not trendy. Because the body can’t properly absorb nutrients, called malabsorbtion, serious medical issues can occur including (and not limited to) infertility, miscarriages, depression, and severe weight loss.

A gluten-free diet is only the first step and it isn’t easy. I can’t tell you how many times people said to me, “Oh, gluten free is SO easy now!” No. It isn’t. Celiac disease causes gut damage, which means there is a healing process that needs to happen in addition to avoiding more damage. Additionally, there are certain foods the body simply may not be able to process or read properly any more. For me, it took about a year of constant illness before I learned that I am severely sensitive to corn, almonds, cow’s milk, and casein. I also have to be very careful with eggs. It’s imperative for me to read every single ingredient list even when a giant “GLUTEN FREE!” is plastered all over the front of the package.

Cross-contamination is serious matter. The kitchen in which my food is prepared and the other foods surrounding my food have to be gluten free and other-food-allergy-free. I am just shy of being two years past my initial celiac diagnosis and I still get sick, mostly from cross-contamination.

Hence the reason why it’s hard to have me over for dinner. 🙂 Not impossible, just hard.

Each body is different. Every celiac case looks different. Every sensitivity is different. Gluten free dieting is a trendy cultural movement; it’s important to note that gluten isn’t necessarily evil. A lot of people can eat gluten and be just fine, and others can’t. That’s okay. Listen to and know your own body and feed it accordingly.

 

Bird seed and porta-potties and grocery lists, oh my!

Grocery-list-making face.

Grocery-list-making face.

Husband: “Hey, hon? I know you are going to hate what I am about to ask you, but I have three coupons for the grocery store that are going to expire. Can you make a grocery list?”

Ugh. This request seems innocent enough, but for me making a grocery list is like riding a bike uphill for miles in the blazing heat. I’d rather clean the porta-potties on the route. But seeing as I am the gluten-free, corn-free, dairy-free, soy-free, nut-free, anorexic-celiac-friendly chef of the household, all meal planning and grocery-list making falls to me.

We’re kind of desperate over here. My kids have eaten hot dogs for dinner three nights this past week. My husband and I basically eat the same thing every night: some sort of grilled meat or fish with a side of veggie and starch (either sweet potato or rice). That is the extent of our  menu these days.

Thank God my husband enjoys the shopping. I can’t walk into a grocery store alone without going into a panic attack. Literally. Braving Whole Foods the other day on my own, I had teetered on the edge of a full-blown attack; I had to sniff soap to calm my nerves before I could make it through the check-out line with my single box of quinoa hot cereal.

Here’s why:

After I spent the entirety of July feeling physically ill and having multiple food reactions, it seemed perhaps a food sensitivity test would be the logical next step in figuring out why my gluten-dairy-corn-soy-free lifestyle wasn’t solving my intestinal distress.

100% celiac-friendly. About 45% everything-else-friendly. Everything in the upper-left quadrant , with the exception of the tea and Domata flour, is off limits now.

100% celiac-friendly. About 45% everything-else-friendly. Everything in the upper-left quadrant , with the exception of the tea and Domata flour, is off limits now.

The results were surprising as it revealed that most of the foods that had become safe and staple elements in my restricted, leaky-gut- and-celiac-friendly diet were indeed NOT safe. Almonds and anything almond-based, like almond butter, almond flour, and almond milk had become the anchor-source of safe and calorically dense nutrition. Turns out my system is off-the-charts sensitive to almonds. And also all other nuts. Adding “nut-free” to my growing list of dietary restrictions, I also learned many basic produce that I eat every day, such as bananas, lemons, mushrooms, zucchini, asparagus, and lettuce were also big no-nos.

As for the basic celiac-friendly grains, my body rejects aramanth, brown rice (another basic staple), lentils, and oats (even the gluten free version). While we’re at it, I may as well  mention egg whites, cinnamon, mustard, plums and white beans all cause bodily discontentment.

The good news: Lima beans are a no-go! That news was like finding $100 bill in a pile of wet poo.

So what in the world is a busy anorexic-celiac writermama of two hungry munchkins and wife of an athletic husband supposed to eat and feed her family?

photodune-1029451-agaporni-xs

“Hey, are you going to eat that?”

I don’t know. Hence the panic attack in Whole Foods the other day.  I went in to simply to purchase millet–one of three grains I can eat. What’s millet you ask? You might recognize it as the main ingredient in–wait for it– bird seed.

Yup. My diet has been reduced down to the mere culinary delicacies for birds. Rabbit food would be a five-star treat at this point. 🙂

Meal planning and grocery shopping are like picking a bouquet of wildflowers in a radioactive minefield. There is a multitude of brilliant foods that look so colorful, fresh, and nutritiously rich to choose from, yet these days, anything I pick is contaminated with ingredients that are unsafe for me. One misstep and BOOM! I experience a physical reaction that will make me ill for four to seven days. Believe me when I say, I have become a good label reader, but most products I pick up I must put back; most recipes that catch my eye need a customized overhaul. I haven’t yet gained good knowledge of the safe and delicious substitutions to create a new dietary landscape for my household.

I digress. You can see why making a grocery list isn’t something I can just whip up. I found myself pacing and wringing my hands together, trying to figure out where to start. I would need to look at recipes–maybe paleo recipes and then adjust accordingly? It seemed so hard, and I wanted to cry. Enter my friend Nikki who was scheduled to come over for coffee (decaf, Swiss-water processed coffee, of course).

I poured out my plights and heard myself plead, “Will you help me make my list?”

Nikki was so happy to help! “Let’s come up with five meals,”  she suggested. That seemed doable to me. She sat with my food sensitivity test next to her and within five minutes she helped me come up with 10 meal ideas based on the foods I could eat! Whoa! We spent the next hour online researching recipes for each dish that would be easy to make and easy to make substitutions. Nikki helped me think of fresh ideas. For example, I cannot have lemons or limes, but we found a great pineapple-mango salsa recipe that is great for fish!

Grocerylist

Completed list! Rough draft–have to rewrite so hubby can actually shop from it. 🙂

When our list was complete–we celebrated. I’m talking high-fives and happy dancing! It felt amazing to have the list done, and I had that glorious relief feeling–like the feeling you get when you’ve finally popped your taxes in the mail knowing you are getting a fat refund. All the tedious hard work is done and there is great reward to come. Thank you, Lord, for Nikki!

Then I crashed. I was so exhausted and had quite the headache, as if I really did just ride for miles uphill in the heat. While having Nikki by my side made this task achievable, the anxiety that burdens me around anything food-related still built up inside–only this time it didn’t explode into tears, panic or self-loathing. It stayed dormant until the task was complete. I was too elated to dwell on the hardness of the task. Instead I curled up and took a nap–resting in my accomplishment.

Someday this will all seem so clear.

Someday this will all seem so clear.

For the first time, I allowed myself to be okay with the weirdness that making a grocery list is really hard and exhausting for me. Meal planning and grocery shopping are the most basic of tasks for any stay-at-home mama, but for this mama it is a dizzying challenge; it all makes my mind spin. I am confident this won’t always be the case, (and I won’t always rather clean porta-potties) but for right now, I have to allow myself to take this journey one list and one meal at a time.

Upcoming Meal Plan (with links to the recipes I’ll be modifying)

Chili (a modified version of the one I usually make)

Cherry Chicken

Mango-Coconut Rice w/Chicken

Spaghetti Squash ‘n’ Meatballs

Fish w/Mango-Pineapple Salsa

Crock-pot Cornish Hen w/Grapes

Asian Pork w/sweet potatoes

Shrimp Creole

Salmon Patties w/millet-quinoa broccoli medley

Turkey w/cauliflower rice

 

 

Whispers and Prayers

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Her voice is usually soothing. Comforting and cooing me to lean into hunger:

Hunger is safe; it’s familiar–you have all the control. You have no reason to worry because the pang of hunger slims your body, makes you more acceptable. 

I want to give in to her because I want to be acceptable and comfortable, yet I find my heart seeking wisdom in the midst of uncertainty and fear that something isn’t right.  Praying, I ask to hear my Father’s voice. It’s hard to hear in Him with distractions of triggers all around me.

I nearly cried at dinner the other night; my in-laws peppered with questions about celiac and food, my anxiety growing like a heavy thicket of thorns in my gut. I could hardly get down what little I manged to eat. It wasn’t their fault. They are curious and they love me. They want and need to know how to better serve me when I come over for dinner. Innocent enough, but they don’t know they pull a dangerous trigger.

Her voice comes back, sneering.

See? Food is nothing but a nuisance. Why do you even bother? Can you not control yourself? You said yourself it makes you ill if you aren’t careful, so be careful. Put your fork down and walk away. You aren’t hungry anyway. 

It was time to go swimming. Everyone was so excited, putting on their suits and grabbing towels. I put on my suit and analyzed my body–alone in the bathroom. It’s dangerous for me to be alone with her.

Puffy gut. Turn to the side. You are definitely gaining weight. And look at those legs. Celiac has certainly done a number on your skin, huh? Look at all the skin damage on those thighs–which by the way, they seem a bit larger. You should be running more. You aren’t thin enough, Leanne. Less food tomorrow, okay? 

The thorny thicket of anxiety squeezed my gut and reached for my heart. I put clothes over my swimsuit, opened my bedroom door and pasted a smile to my face. “Ready to go,” I said. My heart was in a panic and I prayed–Lord, please take my hand and silence this voice. I adore you and seek only You. I love you, Father and you love me. None of this is true. Help me believe.

Looking around the pool, she got nasty.

Look at all the skinny girls. Yep. You are so fat. Out of control, aren’t you? You aren’t even half as small as that girl. Did you even bother brushing your hair? You are ugly and stupid for even coming down here. You should have stayed back. Ha! SPF 50 on those grotesque legs–can’t seem to manage that delightful golden color that everyone else seems to get. Get skinnier and stay that way. You’ll have something going for you then. 

SurroundedbyGod

Surrounded by God; burdened inside.

Father God, it isn’t true. You see me as a beautiful queen. This horrid voice spews lies. You love me and I am glorious in your eyes. Silence this voice–I confess I desire to be skinny but my greater desire is to honor you–I lay my life before you, Father. Only what you desire matters.

This push and pull between Ana’s voice and my prayers took place all weekend.
Constant and tense and difficult. Eating here and pulling back there. Immersing myself in the wonder of God’s beauty one minute, doing push-ups alone in my bedroom the next minute. A constant battle.

I woke up this morning to Ana’s whispers seeping into my mind. My belly growled in hunger. My body ached from the weekend’s tension.

I grabbed my Bible desperate for His comforting Word.  Lord God, let You be the only one I hear this morning. Please, I beg you. I was led to my two favorite passages–the ones I always turn to in my mind, but rarely anymore in my Bible because I know them well:

Psalm 25 4-5:

Show me your ways, Lord,
    teach me your paths.
Guide me in your truth and teach me,
    for you are God my Savior,
    and my hope is in you all day long.

Proverbs 3: 7-8

Do not be wise in your own eyes;
    fear the Lord and shun evil.
This will bring health to your body
    and nourishment to your bones.

Ana’s voice is evil–the enemy manifested in a way that seeks to destroy me and 20140810_082817worse, my connection with God. I shun her today. I am reminded of the wisdom I seek–the wisdom to live wisely in my diseases, which requires that I stay in God’s Loving Word for me. I do not ask for healing of my woes because they keep me pursuing God and yearning for His teaching of his truth and ultimate Love–for me and for the beautiful hearts who also battle anorexia. I pray for humility and a wise heart in this battle. My Father loves me in a way I cannot even express because it is incomprehensible.

In the name of Jesus Christ, Ana is quiet today. Thank you, Father.

Coming back from where I've been

I miss writing–the tappita-tap rhythm of the letters under my fingers forming the words I see appearing on my page. I love the feeling of discovery as I unpack my heart, hear it in my mind, and see it all materialize before me in prose.

July was a rough month. I’ve been trying to stay positive and keep things in perspective because millions of people experience much harsher circumstances and situations and illnesses than I do. Every time I had even a spare slit of time to write, I couldn’t bring myself to do it  because what was living inside me was dark–as evidenced by the post I wrote on July 10. But man–I finally just had to acknowledge that what I am going through was and is really hard for me.

So, I’m writing about it because I am a writer–that is who and what God made me to be.

I was sick in July. The whole month. In addition to managing my day-to-day normalcies like, raising my children, loving my husband, managing my household, and editing manuscripts, I was battling my diseases. Celiac disease and anorexia.

Celiac disease is an autoimmune disorder wherein my body literally attacks itself (specifically the small intestine) when it encounters gluten. The attack permanently damages the villi lining the intestine. These little hair-like “thingys” are what allow my body to absorb nutrients from food. No villi, no nutrients–no easy way to thrive.

Celiac disease is not part of the gluten-free fad our country is experiencing. It falls under the umbrella of “gluten intolerance,” but it is a damaging, life-long (incurable) disease that can be serious if not managed well. Fortunately, it’s a disease that can be managed through a gluten-free diet–which isn’t as easy as it sounds (at least not at first) especially because my diagnoses also comes with “leaky gut.” In addition to gluten free, I’ve had to go dairy-free, corn-free, and soy-free. I’ve had to be extremely careful with even the naked-est and natural-est of foods.

I also battle anorexia, so living with a restricted diet isn’t new to me. In a jacked up kind of way, celiac disease actually soothes my anorexic mind while wreaking havoc on my physical body. However, this last month, in my effort actually live well and find a state of peaceful health, the two diseases clashed.  While trying to feed my body–safe nourishing, whole foods my mind didn’t fear–my body was literally rejecting most everything I ate, and I was in constant pain. Not surprisingly, I dropped a little weight.

The last two weeks I have been slowly getting better. With the help of my health coach, I adjusted my supplements and my diet and it has helped my body get back on track to feeling well again. Feeling ill while trying to engage normal life is hard. Simple as that.

As I reflect back on the the harshness of July, though, I cannot help but notice some really cool things that happened in the midst of my dis-ease.

~July 5, I fell ill. In the midst of horrid stomach pain and severe nausea, I had an entire date-day with God. He bought me flowers (more on this soon).

~ July 6th, I bought my first guitar and have been teaching myself to play every Learning Guitar
single day. I’ve learned five chords so far! I love guitar because the sound is so moving and pleasant to my soul. My dad was instrumental (pun intended) in helping me pick the perfect guitar for me and I will treasure the experience forever (more on this soon).

~July 9, I joined a women’s Bible study at my church called Saying Yes to God. All I can say right now is God is calling me out (I think) and has asked me to do something big and uncomfortable. I am gathering the courage to say “yes.”

~July 12 (two days after posting my confessional piece), my best friend came over unexpectedly with flowers and a moving profession of her sister-love for me. She loved and cared about me so much that she had inquired with a crisis center to learn how she could reach out and help me. It was a tough conversation but so reaffirming of our 15-year friendship. My husband and I followed through on her concern, and I had an over-the-phone assessment of my state of  mind and health. I was deemed okay to continue my current mental health treatment without inpatient care.

~July 14, I finished editing the memoir of a woman whose husband was miraculously healed of his terminal illness only to tragically lose her precious little daughter, who was conceived with the intent to be a living testimony of God’s healing. The stories of her husband and daughter are interwoven to reveal a moving message about God’s divine healing and gift of grief. I won’t ever look at death the same again.

~July 19, my son turned 8. I celebrated my 8-year mama-versary. There is no greater gift than God entrusting us as parents and caregivers with his youngest treasures.  I love being a mother!

~July 23, I finished editing a 250,000 word sci-fi novel (797 pages of story). It Theendtook me 12 weeks. Biggest and most challenging project I’ve ever edited.

~July 27, I finished editing a memoir of a woman who tells her story of the bright sides of battling breast cancer. I still don’t want cancer, but I am inspired to fight a good fight if I ever become diagnosed.

~July 28, I finally (after searching for over a year) met a doctor I trust who is willing to take me seriously. She’s collecting all the information from all my specialists, learning my case, and investing in me. I feel secure and hopeful.

Today, August 1, I feel like I am coming out of a fog. My stomach feels good, my energy is returning, and I feel like I can breathe again. I am tired, yet I am filled to the brim with introspection. I’ve simply given you an outline of what happened in July, but I carry within me a book’s-worth of  stories, insight, and learning. I am itching to write it all down and discover what it all means. 🙂

 

Confessions of an anorexic mind–A bad day

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My fingers shake trying to type these letters in order. The cloud in my mind casts doubt on the message I am trying to convey. My nerves are frayed and angry at the sound of my children’s voices– siblings tense with each other, yet my babies tentatively seeking my attention. I react unkindly and I feel terrible–tears threaten to overtake me, the buzz of hunger is pulsing through my body and I cannot control it. Not today.

I search the current for the trigger.

Sick again within the hour of waking, I gave up today. The condition of my gut is out of control. Celiac and leaky gut symptoms are wreaking havoc on my body these days. I’ve done everything I can–doctors and labs have resulted in botched tests and delays. Sincere yet uncertain efforts to eat well are not working, and today I was too afraid–too tired–to try again. Frustrated with food and certain it simply cannot be trusted. Intellectually I know my tools to cope with the temptation and triggers, but today I allowed the free-fall into starvation. It’s so much easier and comforting. In a fit of justification, I balled up small problems into a giant, heavy clump of excuses so I could give up on food and lapse into something soothing. Hunger. Control. I chose not to allow food to pass my lips– only enough to take the edge off fainting–yet it wasn’t long before my body rejected even that.

With every hour of hunger came the inability to handle manageable triggers–high-maintenance neighbor kid, laundry, client-work, and the constant stream of needs from my little ones. All the strings I manage to pull on a normal day became heavy ropes, chaffing my mind and burdening my emotional strength, yet I didn’t care. Hunger feeds my mind in a morbid and weird way–it’s depleting yet satisfying all at the same time.

I drove my children to dinner. My hunger buzz racing to my eyes and brain–trying to focus on traffic lights and stop signs. Please don’t faint right now. Threatening to shut down, I grip the steering wheel–forcing my brain to concentrate. I pulled into Chipotle. Is this safe? You must eat something. In practical terror I ask the girl–is your meat clean of gluten? I plead,  did you prepare it in a clean space? I order brown rice and pork. Like a thirsty man in the middle of the desert my body is desperate for what it needs. I need carbs and protein. I need food. My brain needs it but I don’t want it. A daily conflict that today overwhelms me.

I oblige my son’s request to eat at the restaurant because I am too buzzed to drive.

I take a few bites but can hardly stomach the food. I’m scared and starved. My daughter watches me–inside I am weeping at what I know she can sense, outside I lovingly indulge her request for a bite. It’s really good and so good for you I say to her, trying to hear the words for myself.

Upon arriving home my only desire is to drink– a single glass of wine inside my empty belly will pull my body and mind to sleep, where I don’t have to think, don’t have to worry, don’t have to feel the rejection of food. I feel disconnected yet in total control of what is most definitely out of control–today.

Tonight I’ll relinquish my control through flowing tears in the arms of my patient and worried husband before falling asleep. I’ll rest and start over again tomorrow. Today was a bad day–that’s the reality. Tomorrow will be better if I choose, and that is just as real.