AIP Stories of Recovery: Grace’s Recovery from Celiac Disease

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AIP Stories of Recovery is a success story series about regular people from the Autoimmune Protocol community who are changing their lives using the protocol. Each month a new person is featured and readers have the opportunity to discover all the different health challenges that are being overcome by folks just like themselves on the same path. At Autoimmune Paleo we hope you’ll be inspired by, empathize with, and learn from these stories. If you are interested in sharing your story, please let us know by filling out our interest form.

Grace smiling in a car happy to finally have her celiac disease diagnosed

 

Grace spent years with symptoms that doctors couldn’t diagnose – fatigue, headaches, low mood, dizziness. Doctors told her these were just physical manifestations of poor mental health. Since she wanted to get better, she followed their advice and took the medication they prescribed, only to find out later that a lot of it actually hurt her health. It wasn’t until she started vomiting uncontrollably on a morning walk and went to see 11 different doctors, that Grace finally received a Celiac Disease diagnosis that started her on her journey to recovery. 

What health issues are you dealing with, when did they begin, and how long did it take to get a diagnosis?

A few months ago I was diagnosed with celiac disease after nearly ten years of symptoms. I contracted Epstein Barr when I was fifteen which stayed active in my system for a good few years after my initial blood tests. So, whenever I had long bouts of fatigue, headaches and low mood, I chalked it up to EBV being reactivated. Regardless, I still went to my doctor regularly. I remember saying countless times ‘I don’t know exactly what it is but I really don’t feel good’. They always veered the conversation into mental health territory and told me I was dealing with the physical symptoms of depression. As I got a bit older, I got better at advocating for myself and asked them to do some blood tests just in case. They came back with extremely low Vitamin D, Iron, B12 and Folic Acid every time. I had repeat prescriptions for supplements and medication for years, but I never felt better.

Fast forward to late 2019, it was the worst I’d ever been both physically and mentally. I constantly felt weak, dizzy, exhausted and panicky. I had headaches every few days and started to develop agoraphobia. I was so worried about passing out or being sick in public, just getting to work every morning was a struggle. I went to my doctor in January 2020, they did bloods which came back with all the usual deficiencies, but I was labeled ‘fit and healthy’, diagnosed with panic disorder and prescribed Citalopram. I took one pill and my whole body freaked out. It was the scariest thing I’d ever experienced and I knew something wasn’t right. I threw the rest of the prescription away and vowed to find something else that could work for me.

It was early 2021 when the GI symptoms really started to kick in. I was going for walks every morning and couldn’t help but notice how faint and nauseous I felt. But again, because I’d spent years being told it was all a mental health issue, I thought it was anxiety. So, I kept pushing myself to get out more and to ‘face my fears’ until one morning I started throwing up, and it just didn’t stop. Over the space of two months, I saw eleven different doctors. From anxiety to indigestion to IBS – they all had a new label to give me. I was even treated for a kidney infection that didn’t exist. They pumped me full of different kinds of antibiotics, painkillers, proton pump inhibitors and antiemetics but nothing worked. I was eventually referred to a gastroenterologist who ordered ultrasounds, new bloods, and an endoscopy. My liver enzymes and c-reactive protein were through the roof, my TTG was 138, and my biopsy showed my villi were almost completely flattened. Once I knew what I was dealing with, everything about the ten years prior made complete sense.

Describe what the lowest point on your health journey was like.

There was one night, a few weeks into being violently ill, that really will stay with me forever. I’d been sick so many times, it felt like my body was shutting down. I lost feeling down the right side of my body and my speech was completely slurred. I was delirious. Knowing what I know now, these are key neurological symptoms of celiac, but in that moment the weight of the unknown was so heavy. My whole body kept convulsing, so my brother called the emergency services and they told him it might be something wrong with my brain and we needed to get to the hospital immediately. I remember I kept asking my brother over and over ‘what’s happening to me?’ Nothing can prepare you for feeling that helpless.

What challenges influenced you to look for a solution? Basically, what was the tipping point?

My tipping point really was the onset of my GI symptoms and how sick I became seemingly overnight. It makes me so sad now to look back on every time I was told it was all in my head. That does something to you on a spiritual level. It undermines your trust in your own intuition and sense of self. I tried so hard just to hold on to the truth of my reality – my pain was real, so if nobody else was going to listen properly or help me, then I needed to help myself.

Moody image of Grace walking down the street contemplating her celiac disease diagnosis

When you found a protocol to help you heal, what was it and what was your first indication that it was working?

With celiac disease obviously the first step is to completely remove gluten from your diet. But I quickly learned that it’s not always that simple, especially if you’ve had the condition for a long time undiagnosed. I knew the damage to my body was extensive so I also removed any other potential irritants – dairy, eggs (which cross-react with EBV anyway), refined sugar and grains. It made a huge difference. I still have some lingering symptoms but I’m slowly starting to feel like a functioning human again. Supplementation is key for me too – especially sublingual vitamins for easier absorption. I also started weekly hyperbaric oxygen therapy and frequency-specific microcurrent to help reduce the inflammation and pain in my body which has been amazing.

What resources have you used on your healing journey so far and how did you find them?

Jennifer Esposito’s books have been really inspiring to me. The fact she was so ill for so long and endured the experiences she did only to reclaim her health and thrive just goes to show how much resilience lives within all of us. Obviously, AutoImmune Wellness has been huge too! It’s so lovely to find a community of people that understand the reality of living with a chronic illness as it’s a tricky thing to explain to others. I also work with a functional medicine practitioner and nutritionist who is amazing. It helps to feel like you have a little team around you, whether it’s in traditional medicine or alternative.

Did your doctors suggest any treatments that you rejected and if so, why did you choose to try other methods?

The tough thing is, I really trusted the doctors initially. I just wanted to feel better so when I was prescribed all these different medications, I did take them. Looking back, it’s very frustrating because in light of my diagnosis, everything they prescribed me was completely wrong and only made things worse. That’s why I ended up finding a holistic practitioner. I was tired of hospitals and people that only had five minutes to spend with me. It’s definitely made me a bit skeptical of the traditional system.

Grace looking to the right at a restaurant where she eats according to her celiac diagnosis

It can seem like our lives are consumed by a chronic illness, but there is so much beyond those struggles. What brings you true joy right now?

That’s a great question. What brings me joy right now is the opportunity to look after myself in a whole new way. As hard as chronic illness is to live with, it has made me kinder to myself. If I accidentally get glutened, of course it’s frustrating and I will feel horrible, but beating myself up about it will only make it worse. If I wake up one morning and my symptoms are barely noticeable, I wholeheartedly embrace the gift of that day for what it is and I feel very grateful for it. Equally, if I’m in the middle of a painful flare-up, I know that the best way through it is to be gentle with myself and give my body the care that it deserves. When you have a chronic illness, you don’t take anything for granted.

You can learn more about Grace’s healing journey on Instagram.  

Would you like to share your Story of Recovery? Let us know by filling out our interest form.

About Grace Heerman

Grace Heerman is a writer and website designer from Minneapolis. Through her business Said with Grace, she helps coaches clarify their message and create authentic websites that actually bring in business. Here at Autoimmune Wellness, Grace writes book reviews, manages blog content, and organizes Facebook publishing. She is an avid traveler and loves spending winters in Asia. You can connect with Grace and learn more about her writing and design work on her website, Said with Grace.

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