I’m writing this blog post mainly for my records to help me solve this mystery as I put pieces together in the future.
Last night, I had an extreme food reaction. It’s the third time in 2018 this has happened.
It came on suddenly about 20 minutes after I ate dinner. The best way to describe how I react is to imagine having food poisoning. It’s extremely painful, unrelenting and intense. In addition to the vomiting and diarrhea, I feel like I have hot coals in my digestive system.
Now, here’s the mystery. Last night and the time before that, it occurred after eating gluten free food I had prepared for myself in my own home. We barely have any gluten in our home, and my family knows what precautions they need to take when eating gluten to keep me safe. Everyone in the family ate the same meal, and no one else got sick.
This is the type of food reaction that I only have had in the past from accidentally ingesting gluten. There was nothing in common about the two meals that made me sick. Last night, I ate some foods that I don’t regularly eat, but have eaten before: Gluten free pasta and gluten free spaghetti sauce. I know that it’s a risk for me to eat those foods because they make me feel “not great,” but I was starving and sometimes eating something is better than eating nothing.
I know what type of reaction I can have to pasta made with gluten free grains or the tomatoes in spaghetti sauce. But this was a “Let’s try to pull Emily’s small intestine out of her body through her esophagus” type of feeling, not a “my tummy hurts” kind of sick.
I’ve been mentally reviewing everything I ate yesterday, pulling containers out of the garbage can just to be sure I didn’t miss anything on the labels. I’ve actually been hoping that I could find a gluten reference that I missed. Without that, I’m just praying that at some point, someone in the family accidentally touched some gluten that got on my food.
I’m hoping that because the alternative is worse. The other option is that I had a reaction that severe to eating random foods. The other option is that I reacted that severely to something other than gluten, and I don’t know what that “something” was.
I’ve been working really hard this year to add foods back into my life after being on a very restrictive diet for an entire year. I’ve been surprised at how much I have struggled with the fear of food. You might think that I’m dying to eat many of the foods that I have eliminated for so long… things like eggs, nuts, tomatoes, chocolate and coffee. But it’s actually been a challenge to convince myself to take the risk of eating things that might disrupt my system and knock me down again.
When I have instances like last night, it definitely doesn’t help me overcome my fear of food.
So, I’ll be taking it easy today. I’m wiped out in the way you feel the day after you have the flu.
It snowed again last night. My poor daffodils are wilting under their blanket of ice. This isn’t supposed to happen in the second half of April. But the cold weather will end today, and hopefully, my daffodils and I will both spring back to life.
By this afternoon, I’m hoping to have some energy back after a difficult night. I’m going to rehydrate myself, get some good nutrition and move forward.
Happy Thursday, friends!
A few days ago, I was talking to a friend of mine who is a fellow autoimmune disease warrior. She was explaining to me a physical symptom that she has been experiencing the past few weeks, which causes her entire body to itch. She pushed up the sleeve on her cute top to reveal pink welts forming around her elbow.
The more we talked about it, the more uncomfortable the itching became. She couldn’t stop rubbing her arm. I noticed that the welts were changing from a dull pink to a brighter red. I couldn’t believe that even as we talked about everyday topics, my beautiful, out-going, kind friend was being silently tortured by her body’s never-ending reaction to the environment.
I knew better than to say the words we’ve both heard so many times.
“But you don’t look sick!”
I’m guessing that most people who carry a chronic illness have mastered the art of not looking sick. I try hard to smile and laugh even when I’m secretly dealing with major digestive woes, painful heartburn, joint pain, fatigue or a foggy brain. This week, I’ve been dealing with the symptoms that I dread the most and the ones that are the most difficult to admit: anxiety and depression.
I know how important it is for me to keep my life in balance so I can be as healthy as possible. This means eating clean, getting plenty of rest and managing my stress level. I feel like my body is now fragile. Even a minor disruption can push me into an unhealthy place.
The past six weeks or so, I’ve let my stress get out of control and with that, I haven’t been sleeping well. I knew that Sunday would be the first chance for me to play catch up, and I guess my body also knew that was when it would be OK to crash.
I slept almost the entire day. During the few hours that I was awake, I binged on Netflix, unable to work up the motivation to even clean up the dishes or cook a meal. At one point, I decided it was time to get out of bed, and I know that doing something creative always helps me when I’m down. I imported my photos from the baby shower and edited them. I posted them on Facebook, and then regretted it a few hours later and deleted them. I felt like such a fraud making my life look so perfect.
Monday morning came and our backyard was covered in several inches of snow. Even by Chicago standards, that much snow in the middle of April felt like a smack in the face. Still, it was a fitting portrait of the heaviness that was settling over me. I struggled with the darkness that covered me like a heavy blanket. My anxiety was spinning out of control, reminding me of all of my failures in life.
“Why do you even try?” the anxiety whispers. “You’ve screwed up as a parent. You suck at your job. No one cares about you.”
Thankfully, I’ve been in and out of this state enough now to be able to recognize what it is.
I tried reaching out to a few friends with a text message. I know that thinking of others can pull me out of the darkness.
I debated whether to talk to my husband about it. It would be easier not to make him worry. I know how to pretend I’m all good for the few hours that he’s home in the evening before bedtime. I know how to not look sick.
It’s embarrassing to admit the truth, but I matter-of-factly explained what was going on.
“My anxiety is going crazy today. I’ve been too depressed to do more than what was absolutely necessary.”
I thought about searching the Internet for some herbal tea remedy or a magic fruit that might give some relief. Instead, I knew that this was as much a spiritual battle as a physical one. I prayed and asked God to lift the darkness.
By Tuesday morning, I could feel my hope returning. The snow had melted. The sun was shining. I ran an errand to get something that was just for me.
Today, I’ve given myself permission to ignore the house and not start a to-do list. I’m taking some time off work this week, so I had planned to organize my house. Instead, I took a nap at 9 a.m. (NOT KIDDING!) and then went for a long walk to soak up some Vitamin D and long overdue warmer temps.
I’m thankful today for my bouts with anxiety and depression. I know that some people get buried much deeper than I do and for far longer.
A friend of mine reached out today and shared his own struggle with anxiety. There was something so comforting about knowing that I’m not alone. He reminded me that God is in control of the details and I don’t need to worry about begin good enough. It was helpful for someone else to give me permission to stay in bed, to rest or do whatever I needed to do to deal with it. I was thankful not to hear those words:
“But you don’t look sick!”
Maybe we all carry an unseen weight that’s hard to admit. Maybe we’re all covering up our own form of endless itching, digestive issues or anxiety, even when everyone around us looks so happy and healthy. It feels way too vulnerable to even push the “publish” button on this today, but it helped to write it… And maybe someone else needs to know they aren’t alone.
In the past, when I thought of people who ate a “healthy” plant-based diet, I assumed that their life consisted of lots and lots of salad.
But one thing I discovered very quickly when I completely changed the way I eat one year ago is that I do not like eating salad. I don’t really enjoy eating cold food, in general. I especially don’t like eating a bowl full of cold, crunchy lettuce.
Salad makes me angry.
Salad has even made me cry a few times.
In fact, the only time I DO like eating salad is when it’s topped with something warm, like taco meat. I don’t eat most salad dressings or croutons or cheese, which are all of the things that WOULD make a salad bearable.
So, what’s a girl to do when she is trying to eat one to two pounds of veggies every day? What’s a girl to do when she loves warm comfort foods? How does she go from waking up most mornings to a piping hot bowl of oatmeal to trying to figure out how to make veggies feel like breakfast?
Well, it’s taken me most of the year to answer these questions, but I’ve finally discovered the golden ticket. SOUP!
Soup makes an amazing breakfast, lunch or dinner. It can be warm and creamy to fill that need for comfort food. And when you make it with lots of veggies, it’s packed with flavor and nutrition.
Think about it this way. It’s perfectly normal to throw a bunch of fruits and vegetables in a blender with liquid and eat a smoothie for breakfast. Soup is basically the same concept, but it’s hot. We can just call it a hot smoothie if that makes it more appealing.
The last few months, I got my soup making down to a science, so I thought I would share my formula. I usually make several soups a week and store them in the freezer in mason jars. This makes it super easy to grab one when I’m headed to work or any place food will be served (since I usually have to bring my own food).
Another crazy thing that has happened to me in the past year is that I get “cravings” for foods I’ve never eaten before. Recently, I knew without a doubt that I MUST have some beet soup ASAP even though I wasn’t even sure if beet soup was a real thing. I’ve loaded my cart at various times with lots of little-known fruits and veggies: jack fruit, jicama, delicata squash, plantains, parsnips and white yams, to name a few.
This week, the same thing happened, but this time with Celeriac (also known as celery root).
I have not ever in my life eaten celery root, and yet it seemed to be calling to me from the produce section. Celery root is delicious, by the way. It has the tang of celery, but the crisp, starchy consistency of a potato.
So, I will share my soup making formula, using celery root soup as an example. This method applies to any “cream” soup since those are my favorite and feel most like breakfast to me.
Step 1: I always start with one 32 ounce container of chicken stock. I buy mine at Costco because it’s gluten free and has the best ingredients of any I’ve found. Pour this in your electric pressure cooker.
Step 2: Add veggies. In this case, I sautéed in olive oil:
- several cloves of garlic and
- two leeks
I added those to the pressure cooker, along with:
- two celery roots, peeled and sliced
- two parsnips, peeled and sliced
- one green apple, peeled and sliced
- 1 tsp sea salt, plus any other herbs or spices that would work well with the veggies you’ve chosen
Step 3: Cook for 18 minutes. My pressure cooker has a “soup” setting, so I press this button and then adjust the time to 18 minutes. Why 18 minutes and not 15 or 20? I have no idea. I just made up the time. But trust me. It works.
Allow the steam to naturally release.
Step 4: Put the cooked veggie mixture in the blender. Puree until smooth.
Step 5: Return everything to the pressure cooker. Stir in one cup of full fat coconut milk.
I’ve done this in tons of different variations.
As I mentioned earlier, I recently made a beet soup using the formula above, meaning 32 ounces of chicken stock at the beginning and one cup of coconut milk at the end. The creamy red soup was amazing. The veggies I used were:
- 3 beets, peeled and sliced
- 1/4 head of red cabbage, sliced
- 1 sweet potato, peeled and sliced
- 2 carrots, peeled and sliced
- 1 onion, peeled and sliced
The vibrant color of the beet soup inspired me to make a purple soup. This one used the same formula, but the veggies were:
- 1/2 head of red cabbage
- 1 sweet potato, peeled and sliced
- 2 carrots
- 1 onion
- 1 large clove of garlic
- about 1 inch section of ginger root, peeled and sliced
Another one of my favorites is carrot pumpkin soup. Again, it’s the same formula, but the veggies are:
- six carrots
- one 15 once can of pumpkin puree
- 1 inch slice of ginger root
I’ve also done this with two heads of broccoli, which is amazing.
And I’ve just randomly thrown in a selection of whatever veggies I have on hand. You really can’t go wrong! Add a sweet potato if you want the soup to be sweet. Add cauliflower to make it more creamy.
Oh… so I should give you the verdict on the celery root soup. I feel like the parsnips overwhelmed the celery root in this batch. I think I’ll try again next time with carrots instead of parsnips or maybe a sweet potato. I really love any type of cream soup, so I enjoyed it. But just a warning that the parsnips have a very strong flavor!
I would love to hear from you. Do you love soup? Do you like salad? Could you eat soup for breakfast?
I spent most of my morning waiting.
It was our first day back into a routine after 17 days of Christmas break, and I had a long mental list of things I needed to do. But I couldn’t move.
I couldn’t get out of bed to tell my older kids good-bye as they rushed off to school. Thankfully, the youngest had a sore throat so I could call the school and them know she was sick without getting up myself.
I knew all I could do was wait.
My lower back was in extreme pain. My head was throbbing. My brain was foggy. And I was overcome by such a weight of exhaustion that I couldn’t think about standing up.
I laid there wrestling my range of emotions. Anger. Frustration. Worry. Anger again.
This is what my life looks like the morning after I’ve been exposed to gluten. I’m not talking about eating a piece of bread or enjoying pizza or cheating with a cookie. I’m talking about accidentally ingesting a tiny, imperceptible, invisible trace of gluten.
I decided to write about it because: 1.) I think most of the time my life looks like all I do is dance from one creative endeavor to the next without a care in the world, 2.) I’m not going to post this on Facebook, which means about three people will ever read it, 3.) I just need to let it out.
The gluten hit my system surprisingly fast. I’ve only had a few incidents like this one during the past year. But it’s scary to me how much harder it hits me each time.
I was talking to a friend at a party when my head started feeling like it was going to explode. My stomach was starting to feel uneasy. And I suddenly felt very hot. My friend told me that my face was red.
It took me a minute to process what was going on. Even as careful as I am about asking questions and making sure food will be safe for me, could I still have gotten some gluten?
The illness was coming over me like a wave now, and I knew I had to get home before it hit my stomach and intestines. I knew what was coming. I knew I needed to be in my own home to handle this. And I knew once it hit, there was no way I would be able to drive home.
The first few hours are definitely the worst as my body goes into overdrive to try to eliminate everything in my system as quickly as possible. If you’ve ever had food poisoning, that’s the best comparison.
The thing that makes it worse is the feeling I’m going to explode. My digestive tract is burning hot from the acid reflux in my throat to the burning in my stomach to the flame in my intestines.
A few hours later, the intense pain in my lower back set in. That pain took me back to the first month when I discovered I had Celiac Disease. I lived with that pain on a constant basis. I couldn’t believe it was back. It feels like I should at least have had the joy of eating a piece of pizza first if I was going to be in THAT much pain!
Once all of the physical symptoms subsided, that’s when I started dealing with all of the mental and emotional junk.
- How will I live like this for the rest of my life?
- How can I live in a society that is covered in gluten?
- What will happen when I’m older and I have an attack like this one?
- How long will it take for me to return to normal?
- Should I tell anyone about this? I’m pretty sure everyone is tired of hearing about it so I should just endure it in isolation.
- What kind of mother am I that I can’t even get out of bed on my kids’ first day back at school?
- How much damage did this do to my system?
I have worked so hard to stick to my super strict diet the past year. I know that my intestines have been healing because I can eat more foods. I’ve even been exercising the past few weeks, which is a huge improvement. I’ve struggled so much with anemia the past few months that it had been hard to even go for a walk. Lately, I’ve been running on my treadmill. What will happen now?
I know that when my body encounters gluten, my immune system goes into overdrive, attacking my small intestine. I wonder how much damage it will do before the gluten is removed. How long will it take for those antibodies to settle down again?
Sometimes I wish I could have a “normal” disease. One that people could understand. One that I could take a pill for or get some kind of treatment. Maybe even one that is curable. I realize that’s just weird to want to trade in this disease for another one. Most of my thoughts are irrational at this point.
Finally, my system has been cleared out after a very painful 16 hours or so. I’m ready to carefully try to find something to eat to start to restore my energy.
I vow not to let this happen again. I try to convince myself it’s not my fault. Then, I tell myself how stupid I am that I took such a risk. Eating food at a party. Geez! How could you do such a thing?
I’m ready to re-enter the world as if this never happened.
I’m ready to start filling in this week’s to-do list.
I’m ready to do something other than wait.
A few months ago, I was contacted by Autoimmune Wellness to share my story as part of their series called, “Stories of Recovery.” The web site has been a huge source of help to me since I began my autoimmune journey more than a year ago. I faithfully read their blog, use their resources and have listened to every episode of their podcast.
By the time the deadline rolled around a few weeks ago to submit my story, I was feeling less than adequate to write a “Story of Recovery.” The autoimmune journey can be a roller coaster, and I’ve been at a low point the past month or so. I’ve been struggling with some recurring issues, and even trying to sort through some new symptoms.
The editor of the blog encouraged me to write my story anyway, so here it is. It’s my hope, as always, that perhaps by sharing my journey I might be able to help someone going through something similar.
If you are new to my blog, here are some links to the back story on my journey with autoimmune disease:
The mystery of Celiac
When the news is difficult to hear
Part One: A new view of food
Part Two: The start of my journey
Part Three: Malnourished in America
Part Four: Solving the gluten free puzzle
Part Five: The Isolation of autoimmune disease
Part Six: From Whole 30 to Paleo AIP
Part Seven: What do we eat?
Part Eight: A year later
My journey: From “impressive” to “beyond awesome”
Listen to my story on the Energy Edge podcast
Thank you for stopping by! I would love to know you were here. Please leave me a comment to say, “Hello”!