My journey: A year later

by everydayMOM | May 12, 2017 | Celiac Disease, Uncategorized

This is Part Eight of my story. If you are just starting to read, please go back and start with:

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

**

A few months ago, I got into a battle of wills with a muffin.

I had been making a big batch of gluten free muffins each week for my kids to eat for breakfast as they ran out the door for school. The muffins contained gluten free grain, milk, eggs and chocolate chips. I don’t know if I have a sensitivity to any of these foods, but they are all ingredients that I don’t eat on the AIP diet.

I have gotten to the point that most of the time I’m fine around food I can’t have. It’s like I have a switch in my brain that I turn off, and I don’t even consider eating so many of the foods around me.

This time was different.

“You could eat that a year ago, and you were fine,” I told myself. “Come on! You would have considered this ‘healthy’ in the past.”

“No one will even know… you don’t have to tell your family… it smells so good.”

I couldn’t take it.

I ate the muffin.

I knew almost immediately that I had made a terrible choice. My digestive system started hurting. The symptoms grew worse during the next few days. I was sick for almost a week afterward. The worst part is that because the muffin contained so many ingredients that I have eliminated, I didn’t know which one had caused the problem. This is what NOT to do when reintroducing foods.

It was a good reminder to me how much of this journey with food is really in my head. All of the choices I make about what to eat are just that… choices. I don’t have to be on this extreme anti-inflammatory diet. I can veer off course “once in a while.” But I’m also the only person who has to deal with the consequences. I can choose to eat food that will make me feel my best. Or I can choose to eat what sounds good in the moment.

It’s up to me.

**

It’s been a year almost to the day since I crashed. I guess it’s fitting that on the anniversary of the start of this journey, I’m heading to the Celiac Center at the University of Chicago today to see a specialist.

Here’s what I know going into the appointment:

• My celiac antibodies are still much higher than they should be for someone on a gluten free diet.
• My recent endoscopy showed that I still have a lot of inflammation in my intestines and esophagus.
• My acid reflux has gotten worse, and I now have an ulcer in my stomach.
• The good news is that the villi that were wiped out in my intestines are growing back! This is super exciting to me because it means I can absorb nutrients from my food.

I guess I’m a bit of a mystery to my GI doctor. His analysis of these mixed findings is that he doesn’t know how to interpret them. He wants me to go to the Celiac Center to get advice from the specialists there.

**

Even though it’s weird to hear my doctor say he doesn’t know how to interpret my test results, I do know how far I’ve come in the last year. A year ago, both my husband and I collapsed on the exact same day. He was in the emergency room getting an ultrasound because he suddenly was experiencing double vision, an extreme headache and eventually reduced vision in one eye. We found out after a week of tests that he has a very rare condition that causes bleeding in his retina.

I was so focused on taking care of him, that I ignored my growing GI distress. I assumed that my diarrhea, exhaustion and fatigue that all started the same day were caused by the stress of his eye problem.

When I look back at all that has happened since then, I’m so thankful for how far we’ve come. My husband’s vision hasn’t returned completely, but his retina problem is under control. I have an amazing GI doctor and dietician who have helped me so much this year. My family has been a huge support to me. I know that tons of people are praying for me.

I get to eat an incredibly healthy diet. Before I got sick, I could go weeks without eating a fruit or vegetable. I basically lived on bread, pasta, cereal, oatmeal, yogurt and a list of other foods that I don’t even touch these days. It’s strange that during a time when I’ve been so “unhealthy,” I’m also the most healthy that I’ve ever been.

**

I’ve also learned so much about taking care of myself. I know now that it’s more than just food that I have to watch. There are so many other factors that will keep me operating at my best. Managing my stress level and getting enough sleep are key. I have found that when my stress is low and I’m getting plenty of sleep, I can be more flexible with my eating. When I’m eating perfectly, I can handle stress better or lack of sleep.

My spiritual life and being part of a community are essential. When I feel wiped out and just want to hide in bed, it’s better for me to get outside, do something creative or have a conversation with someone.

These are all simple choices, but they can seem so difficult in the moment.

**

How do I feel a year later? I haven’t felt great most of 2017, but the last 10 days I’ve been symptom free. I know that I can have a “flare” even when I’m doing my best to do everything right. So, I have learned to enjoy every good day.

When I wrote this blog post a few weeks ago, I will admit that I was feeling crushed. Now that a few weeks have gone by, I would describe myself as hopeful.

I have my moments when the desire to eat a muffin feels so intense that I convince myself I don’t have a choice. But I know now that the choices I make every day have a major impact on how I will feel.

**

I went for a walk early this morning as the sun was rising and thanked God for the past year. It’s definitely been a journey, but as the sun came up I felt the hope and promise of a new day.

**

Thanks so much for reading! Leave me a comment and let me know you stopped by!

My journey: What do we eat?

by everydayMOM | May 11, 2017 | Celiac Disease, Uncategorized

This is Part Seven of my story. If you are just starting to read, please go back and start with:

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

Since I transitioned to the Paleo AIP diet in February, the biggest questions I get from people are, “What do you eat?” and, “What do you feed your family?”

This has been a major transition during the past year. Planning meals for our family of six has always felt like a daunting task. Add in some major food restrictions and it seemed overwhelming at first.

Back when I went gluten free, I continued to cook normal Standard American Diet (SAD) meals for my family, and I would make something gluten free for myself. That was when I thought it would be too expensive to feed my whole family gluten free because I was still thinking about food in terms of a SAD diet. In other words, I would try to replicate a normal meal by substituting commercially packaged gluten free foods, which are expensive.

Our meals have changed dramatically since then. Now that I’m doing the Paleo Autoimmune Protocol diet, we all eat basically the same thing for dinner with a few exceptions. Keep in mind the list of eliminations: NO grains, sugar, dairy, soy, legumes, eggs, nuts, seeds, chocolate, processed food or nightshades, which include potatoes, tomatoes, peppers, eggplant and the spices made from those (paprika, chili powder and several varieties of pepper).

What I CAN eat is easier to remember: meat, produce and healthy fat.

**

I start each meal with protein. Most days, I cook dinner in my electric pressure cooker. I often cook a whole chicken, chicken drumsticks, pork loin, pork chops, or pot roast. I cook meat loaf or salmon in the oven. Depending on the protein, I throw in carrots, onions, celery or possibly cabbage or rutabaga. (These all cook well in the electric pressure cooker.) I’ve been learning how to change up the herbs and spices to create different variations. I often use sea salt, thyme, rosemary, garlic, sage, basil or oregano to give a different flavor.

Next, I start chopping veggies. I usually roast one or two pans of veggies in the oven with olive oil and sea salt. We love Brussel sprouts, carrots, cauliflower rice, broccoli, or cabbage steaks. Sometimes, I’ll do something more unusual like bok choy, okra, radishes or beets.

If we need some added starch, I’ll cook sweet potatoes or butternut squash in my second electric pressure cooker. Once in a while, I’ll do rice for my family. (I don’t eat grains.)

On days when I want to keep things simple, we’ll go back to some of our SAD favorites. I will make the kids gluten free pasta with meat sauce and parmesan cheese. I can’t have grains, tomatoes or dairy, so I’ll do spaghetti squash or “zoodles” with “nomato” sauce (which is made from beets, carrots and other veggies) and meat.

Tacos are another great gluten free meal. I can’t have the seasoning, taco shells (corn), cheese or sour cream, so I will eat unseasoned ground beef with lettuce, olives, guacamole and plantain chips.

Breakfast was the biggest adjustment. Without grains, dairy, nuts or eggs, it’s hard to find food that “feels” like a standard American breakfast. I usually eat leftovers from the night before. But I’ve also learned to make a warm porridge using butternut squash or spaghetti squash mixed with dates, shredded coconut and coconut milk.

I’ve also learned to make something like “pancakes” out of plantains or butternut squash.

My snacks are usually fruit, dried fruit or guacamole with plantain chips.

**

What does my family think?

A few days ago, we were eating one of my AIP meals together as a family, and I asked the kids if they missed our old way of eating.

“The thing is, Mom,” my 12-year-old daughter said, “after I eat your food, I just feel so… healthy!”

I was surprised to hear her answer, but it’s so true. The diet that I’m on is meant to reduce inflammation, and it honestly makes me feel great! In the past, just as I equated healthy with thin, I thought “diet” meant “hungry.” I actually eat a lot more than I ever ate before. I pile my plate full at each meal and never think about how much I eat.

My husband and oldest son both decided to jump on the gluten free/Paleo bandwagon on their own. My husband eats about 90 percent Paleo and our 16-year-old is completely gluten free. They have both experienced great health benefits from the change.

I’m not on this diet to lose weight. However, if you are wanting to lose weight, I highly recommend the regular Paleo eating plan (as opposed to Paleo AIP, which is far more restrictive). Paleo teaches you to eat protein, veggies and healthy fat. You are never hungry, and it makes you feel great!

**

Another question people ask me is how long do I plan to eat this way?

I’ve been in the elimination stage of the diet since February, and I’m planning to continue a strict AIP diet for six more months. Hopefully, by that time, my gut will have healed to a point that I can begin adding foods back in one by one. It will probably taken a year to do the reintroductions.

I know that a lot of people with autoimmune disease are never able to reintroduce many foods, so this is probably close to how I will eat for the rest of my life. However, I’m hopeful that I will be able to reintroduce a few things. Eggs and almond butter are at the top of my wish list!

**

What’s the hardest part about eating this way?

After four months, I’m really to the point that I prefer to eat this way. The biggest adjustment has been trying to navigate celebrations. It’s nearly impossible to eat in a restaurant, unless I want to eat a bowl full of plain lettuce (which I don’t)!

On my birthday a few weeks ago, my husband was trying to think of something he could do to make my day special.

“I don’t know how to do this,” he said, lamenting that he couldn’t take me to a restaurant or bake me a birthday cake. “I’m just not sure how to celebrate.”

That was sad for me. We are learning to find other ways to spend time together as a family or come up with special treats that won’t take me too far off my eating plan. It’s been a new challenge, but I’ve learned that it’s worth it at this point to stick to the foods that make me feel my best.

I’m so thankful for my family and their great attitudes with all of the adjustments we’ve had to make. I am truly blessed.

**

Thank you for reading! Please feel free to leave a comment below.

I’ll wrap this up tomorrow with a post on what I’ve learned since I crashed almost exactly a year ago.

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: The isolation of an autoimmune disease

by everydayMOM | May 6, 2017 | Celiac Disease, Uncategorized

This is Part Five of my story. If you are just starting to read, please go back and start with:

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

**

The day that scared me most during this journey came in mid-September. I was sitting in a meeting at work when my ankle started to hurt. I remember leaning down to rub my ankle throughout the meeting.

The day before, I had been working on our landscaping, and I had spent some time digging. It didn’t surprise me that my right ankle would be sore from pushing down on the shovel.

The meeting lasted one hour, and during that time, the pain kept building. By the time the meeting ended, I couldn’t put any weight on my ankle. I took off my wedge sandals and hobbled to a couch in the long hallway on the opposite side of the building from my office. That was as far as I could walk.

I called my co-worker and told her about my predicament.

“I’m stuck out here on the couch, and I can’t make it to the office,” I explained, totally overwhelmed with embarrassment.

She brought me some pain killers and kept me company while I waited for the drugs to kick in.

By the time I got home, my foot and ankle had swollen up with a huge goose egg on the side. When my son got home from school, he said it looked just like his ankle looked when he had sprained it playing basketball. He ended up on crutches for two weeks with that injury.

The only problem was, I had not sprained my ankle.

And this wasn’t the only joint that was painful and swollen.

**

About two weeks earlier, I had severe pain in my right shoulder. For several days, I could barely use my shoulder.

That pain subsided, but then it moved to my right wrist. I had to wrap my wrist in a bandage because it hurt so much. I couldn’t lift anything with my right hand or do simple things like open a jar or package.

Now, it was my ankle. I couldn’t walk for about three days after that. It took a couple of weeks for it to get back to normal.

I was angry and freaked out and scared.

**

I had read that people who get an autoimmune disease in their 40s are far more likely to develop other autoimmune diseases. In fact, people with celiac disease are likely to develop another autoimmune disease every 10 years. I knew that this type of joint pain and inflammation were symptoms of celiac disease. But I had never experienced it to this level. Joint pain and swelling also are the major symptoms of some conditions that I didn’t want to think about.

The joint pain and swelling continued moving through the right side of my body for about a month after that. The hardest part was not knowing where it might pop up or what joint might be affected.

In fact, this whole dimension of “not knowing” has been the hardest part of having an autoimmune disease.

I love hosting social gatherings and making plans with people. In fact, we host more than 30 people at our house every other Saturday for our church Growth Group. I still try to do as much of this as possible, but I’m always aware that I might have a “flare” on the day I’m supposed to do something that will derail my plans.

**

When I do get a “flare” from celiac disease, I often feel an overwhelming sense of hopelessness. Sometimes, my digestive system is so messed up and I have so little energy that I feel like I’m 90 years old.

“How will I possibly live another 30 years if I can’t perform one of life’s most basic functions — digesting food?!”

“How will I be able to get enough nutrition to survive when I feel this way?”

These feelings of hopelessness are wrapped up in isolation because I don’t want to tell anyone how bad I feel.

“How can I tell people that I’m sick? AGAIN.”

“How can I tell my family that I don’t have the energy to do what they need me to do?”

“How can I let my husband down by becoming such a sickly person?”

“How can I even talk about this?”

**

Maybe you can relate. As I’ve shared this story, I’m amazed how many people have approached me to tell me about a friend, a family member or their own related struggle. Feel free to leave me a comment or send me an e-mail.

Tomorrow, I’m going to start talking about the diet that has helped me through this journey and how I radically changed what I eat!