Life with celiac disease

When the news is difficult to hear

It’s been almost a year since I started this journey with autoimmune disease. I was hoping to check in Friday on my birthday with an amazing story of restored health and awesome lab reports. Instead, this has been a hard week.

Each time I face a new hurdle on this health journey, my husband reminds me that this will be one of those defining moments I will remember when I get to that place where life is starting to feel more normal. I actually feel farther away than ever with more questions than I even had a year ago.

But I find that writing it down might at least helps me process the information and give me a reference someday when I’m trying to remember all of the key events on this journey. Although it’s kind of weird to write about my health in such a public way, I also hope it might help someone else walking a similar path. So, here goes…

**

I visited my gastroenterologist on Thursday as a follow-up visit to review my routine blood tests. I have been on a strict gluten-free diet for about 10 months now, so my celiac blood panels should have returned to normal. In other words, my body should no longer be flooded with antibodies, showing that my immune system is trying to defend against the gluten in my system.

Instead, my antibodies were very high. They looked more like that of a person with celiac disease who is eating gluten on a regular basis. This means that my immune system is still working hard to destroy my intestines in its mixed-up effort to try to fight off what it thinks is a dangerous invader. My blood work also showed that I’m still low in important vitamins and minerals because of my inability to absorb nutrition from my food.

This answered some big questions for me such as why I have continued to feel sick for nearly a year, despite removing gluten from my diet. Since the beginning of the year, I’ve been on a much more highly restrictive “healing diet” that is designed to help my gut recover from the damage of celiac disease. For most of 2017, I haven’t eaten grains, dairy, soy, legumes, sugar, processed food, eggs, nuts, seeds, nightshades, chocolate, alcohol or coffee.

I don’t eat in restaurants, and 98 percent of the time, I only eat food prepared in my kitchen by me. And yet, I’m still experiencing autoimmune symptoms.

**

My doctor gave me two possible explanations for why this is happening. The first one came in his office.

Most people with celiac disease need to strictly avoid ingesting gluten, which includes even trace amounts that can come through cross contamination, especially in restaurants. However, in my case, perhaps I can’t even touch bread. He instructed me to avoid even the smell of bread. If I can smell bread, it means the gluten has been aerosolized, and I could be contaminated, he explained.

In other words, no more making PB&J sandwiches in the morning for my daughter’s lunch box (even with the extreme hand-washing that I do afterward). No more mixing up birthday cakes for my kids that could release flour into the air as I operate the hand mixer. No more baking a pizza in my oven, which fills my kitchen with the smell of baking crust.

While my family has been extremely careful to help me avoid cross contamination when they eat bread, crackers or baked goods, the doctor said all six of us should eat gluten free at home because of my extreme sensitivity. Perhaps this doesn’t sound too hard to accomplish. My son and husband have already gone gluten free, so that only leaves three more who need to make a big diet change.

However, this actually stresses me out more than my own dietary needs. I regularly cook gluten-free dinners for the whole family. But eliminating all of the gluten-filled cereals and toast at breakfast and replacing all of the quick sandwiches that go in lunch boxes is going to add even more planning to my already full life.

My doctor also referred me to a celiac clinic in Chicago to get more specialized help because my sensitivity is so severe. I actually didn’t expect to even hear from him again when he sent me on my way.

**

The next morning (my birthday, by the way), he gave me a call. He said he had been so interested in my condition that he did more research on it. He discovered a form of celiac disease that doesn’t improve with a gluten-free diet. It’s called refractory celiac disease, and it affects about 1 percent of people with the disease.

He asked if we could repeat my endoscopy to do some more testing and determine if I have this condition. I was amazed that he would care enough about my situation that he would take the extra time to do this research. His office called me a little later, and we set up the procedure for Monday morning!

If I do have refractory celiac disease, it could mean going on an even more extreme liquid diet to try to pinpoint everything that is causing problems for me. It also could mean adding some drugs to my treatment plan, which scares me. (I tend to do a lot of reading about immune suppressing drugs, and they don’t sound like a good long-term solution.)

At this point, I guess all of the options seem scary. It’s hard to imagine that I have such an extreme sensitivity to gluten that I need to avoid even smelling bread. Even with all of the lifestyle changes I’ve already made, the treatment options with refractory celiac disease sound extreme.

**

Life with celiac disease

To wrap this up, I guess I’ll tell a story about my birthday. The ladies I work with all make a point of celebrating each other’s birthday by going out to lunch or doing something fun together. Since I can’t eat in a restaurant, I asked them if they would come to my house to eat “Emily food.”

I prepared for them an entire meal of my favorite dishes made only of the foods that I can eat (meat, veggies, fruit and healthy fat). I loved preparing this meal for them, and started getting emotional as I waited for them to arrive. For the past year, I usually feel excluded in food situations. It’s a constant exercise in self control to stay away from the growing list of foods that I can’t have.

For this one meal, I was surrounded by people who were eating like me. They had chosen to enter into my world and walk beside me. I often feel so isolated because of my inability to take part in the celebrations of life by going to restaurants to meet friends, taking my kids out to ice cream or eating birthday cake. For this one meal, I felt so included.

It made me realize how I can be better at entering into someone else’s world. Giving up my way of doing something to show compassion or support for another person’s situation can be such a remarkable way to demonstrate love. I hope that I will be more compelled to do that for someone after experiencing it myself.

You might be doing that for me right now by reading my story. If that’s the case, I want to tell you thank you! I would love it if you would leave me a comment to let me know you stopped by!

 

40 Responses

  1. Emily

    Happy birthday! I can’t imagine how frustrating this week must have been, to feel like all the hard work and discipline was for nothing! Thank you for sharing. And you do have some pretty great co-workers!

  2. Catherine

    Em, this post made me cry. 😓I’m so so sorry. What a frustratingly overwhelming year. What a supportive fam you have to walk with you and in it together. ❤️ And your friends who are Emily Food. 😊 Gifts, all of them.

  3. Kim

    Aww, Emily. So frustrating, when doing everything right still seems “not enough”. I would eat gluten free with you anytime. Doctors and nurses are so happy to help someone as compliant as you are with your diet. It doesn’t surprise me that the Dr. went the extra mile for you. There will be an answer for you. Can’t wait till you’re feeling better🌈

  4. Susie

    First, I want to say thank you. Thank you for sharing your journey – your sorrows and your joys.
    My heart was breaking for you as I read this. You amaze & inspire me with the way you have been learning and living your “new normal”.

    I am so glad our boys became friends, and through that friendship I met you!!

    1. Thank you, Susie! I feel the exact same way about you and your family. I’ve realized that we are really on a journey TOGETHER with other parents as we try to figure out these teenage years. It’s such a relief to find other families who have instilled good values in their kids… I’m so thankful for Matthew and Dominic’s friendship, and so thankful for you. Thank you for caring about me!
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  5. Laurel

    Happy Birthday! It sounds like you have some great friends! Also sounds like you have a good doctor too willing to help you get the answers you need. Hope you can find them soon… wishing you health…

  6. Ann VerSchave

    Happy belated!read your blog for the first time today. Thanks for sharing! I have been diagnosed with gastroparesis for about 3 years now & still the most daunting tasks I’ve faced in my life. Especially figuring out the diet. Would love to delve deeper into your blog, as I’m often inspired from the stories of fellow GI’rs.

    1. Hi Ann! Thank you for reading. I’m so sorry to hear about your condition. This GI thing is definitely a whole new world, and like you, I’m always thankful to find people who “get it.” I’m planning to post my story in greater detail, maybe next week. I started writing it a few months ago, but sometimes it’s just hard to hit the “publish” button. 🙂
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  7. Beth Daghfal

    Dear friend… I didn’t realize what an ordeal you’ve gone through this year. I can identify on a very small scale, from when I struggled with an autoimmune (RA) back in 2008 and 2010). I am so sorry you’re going through all of this. I wanted to cry thinking of you not fixing sandwiches for your kids. Such small things we take for granted. I will be praying for clear results from your test Monday and for a flood of peace and joy and assurance that the Lord is NOT surprised and has you in His good hands as you continue to walk this journey. Love and miss you :).

    1. Beth, I’ve thought of you many times as I’ve learned more about autoimmune disease and remembered your journey with RA. I went through a few months this fall when my joints were so swollen and inflamed that I sometimes had trouble walking or using my shoulder and wrist. I have wondered if you ever experimented with diet as you worked toward healing. I read a blog by a woman who has used diet to control her RA… http://phoenixhelix.com

      Thank you for the continued friendship and prayers. Miss you tons!
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  8. Katharine Allen

    Wow, I had no idea, Emily! So sorry it was so overwhelming on your birthday.. What a blessing – the lunch with your friends, though! Thanks for sharing your story. Happy belated birthday!

  9. Holly

    HBD, albeit a bit late! My oldest kiddo is seriously dating a girl with celiac. I am sorry you are going through this, even as it ministers to me to read your journey. The gf is visiting here in May, so I would appreciate your best (EASIEST) recipes/ideas. I am super worried about cross contamination and making her sick.

    1. Holly, I often think about how hard it would be to eat gluten free in college. My oldest has experienced dramatic health benefits without gluten and I’m trying to prepare him for what that will look like when he leaves home! My philosophy on eating gluten free is to eat foods that are naturally gluten free. (As opposed to buying “gluten free” packaged foods.) For example… use corn tortillas or corn taco shells instead of flour. Make lettuce wraps in place of bread. Use potatoes (if she can have those) with sloppy joe. You do have to pay CLOSE attention to seasoning, especially seasoning mixes. I can tell you what I would use if that helps. The cross contamination is a BIG deal. Make sure you are always using clean serving utensils and knives… Don’t put gluten free bread in your regular toaster. Sometimes people try hard to do things for me to “be nice,” but for me, I would prefer to prepare my own food. It’s just not worth the risk of getting sick and also putting someone else in a position where they have made me sick. I hope it goes well! I’m happy to give more specific advice… I have a gluten free board on Pinterest and I also have a “celiac disease” board, which contains recipes for the AIP diet that I’m on now.
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  10. Nora

    Emily, as we walk and we talk about this journey of yours, I realize I haven’t ever said how much I admire you. Because you always have such a positive attitude, I often fail to grasp just how hard this must be for you. I think you are an amazing woman, you are strong, you have a great family that supports you and you will conquer this! I volunteer for sandwich packing any day!

  11. Hey there. I am so sorry. My heart was breaking for you as I read about your doctors appointment. I know how hard you have worked this past year and cannot imagine how disappointing the results were. I am going to pray that Monday provides clear results for you. Please keep us posted. You are one of the strongest women I know! Seriously, you have handled all of this was such courage and discipline. You are a wonderful role model for all of us. 💜

  12. Karen Ashbrook

    Emily – Wow…so difficult. Thank you for sharing. I am always interested in hearing what is going on with you. I will be praying for extra grace for you and that you would know that the Lord is with you every step of the way. So sorry to hear this. Love to you and your family.

  13. joe and opal wilkerson

    Emily,
    Thanks so much for bringing us up to date. We are praying constantly for the best news from the doctor and for complete healing.
    We love you so much. We want to come at your convenience to eat your kind of food. Please let us know when is best for you.
    Love,Dad

  14. Linda

    Thank you for sharing about this difficult road you and your family are on! Praying for you and please keep letting us know how to walk with you in your world.

  15. Cindy

    Emily,
    I am utterly in awe of you. My life is so hectic since I’ve begun to work full time that I feel overwhelmed by it. I can’t imagine going through what you have been on top of it all!! You are so strong. I’m sure there are many times when it is not easy, but gosh!! What a role model you are for your family and friends, and me!! I truly admire how you are coping with this and am humbled at how I can learn from you. I’ll be praying that you get some answers in the nearby future. Love you friend❤️

  16. Susan

    Wow, Emily, I love that your doctor took the time to do extra research to help you, though I’m sad his findings might have you in that 1%! Not the way a person wants to be exceptional. It touched my heart that your birthday meal with coworkers helped you not to feel so isolated; it is so hard eating differently than other people. I’ll pray for you on Monday. Thanks for sharing your experience and your heart.

  17. Carla

    I read it, Emily. Thanks for being vulnerable and giving voice to something more and more of us are are facing. I really do get it. I’m sorry you still have so many unaswered questions after all the change and diligence. That’s frustrating.

  18. Jennifer

    Emily, I am genuinely saddened to read about these health challenges, and will be thinking of and praying for relief. I’m so glad you have so many loving, supportive people in your life, and such a concerned doctor.

  19. I am absolutely bowled over by the whole potentially even smelling bread thing! It’s an honor to be allowed to follow you on this journey. Can you post your special Emily Bday Menu?
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    1. Sues, it literally took me a few days just to process that thought. I came home from the doctor’s appointment and my son had made a grilled cheese. The kitchen was full of the smell of bread. I was just standing there thinking, “How do I possibly NOT smell this?” I thought about posting the birthday menu! I hope to do that at some point. Thanks for being interested! 🙂
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  20. I’m praying for you Emily. Our culture does revolve around food. Sending my kids to birthday parties with full bellies and begging them to not eat off limit food while they are there, avoiding sports team food gatherings sometimes or else having to bring a TON Of food myself for them, and other similar situations make me relate a little bit. Hang in there. God is good and you will get through this.

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