My journey: From “impressive” to “beyond awesome”

I always feel a little weird writing about my health situation on my blog. But now that I’ve put it all out there, and so many people have been asking me for an update, I feel like I need to share some of the significant things that have happened lately.

A few weeks ago, I went to see a functional medicine doctor for the first time. I had been on a waiting list for four months to get into this doctor who specializes in patients with autoimmune disease.

I handed her a thick folder full of my medical journey from the past year. As she flipped through each page, she kept repeating the same reaction: “Impressive.”

After a few minutes, I had to interrupt. “Why do you keep saying ‘impressive’? I get the feeling you don’t mean, ‘Wow! This is awesome!’ ”

Well… she explained. First, you are the first patient I’ve seen whose antibodies were so high on every test that was taken. (In other words, my overachiever immune system has been working super hard to destroy my own body.)

It’s also impressive to see your level of malabsorption. (I knew I had been struggling to absorb the nutrition that I need from my food, but she was actually impressed by just how bad I actually was! Go, me!!)

Finally, she said, “You have had really amazing medical care. It’s impressive.”

My journey with autoimmune disease: From "Impressive" to "beyond awesome"

Happiness in a cup: My bullet dandelion tea

I thought about all I’ve been through in the last year. It’s true. I’ve been to four different doctors in the past year, including three specialists. I’ve also seen a dietician, who has been an “impressive” part of my journey. I’ve had a colonoscopy, two endoscopies and an MRI to understand what’s going on inside my body. And I’ve had a crazy amount of blood work done. It really has been impressive.

She sent me away with an order to have 10 more vials of blood drawn before I came back to see her in two weeks. I had that appointment on Thursday.

When I walked in, she immediately started asking me what I thought about an immune modulating drug she had recommended at my last appointment.

“Have you seen my lab results?” I asked. “I really think we should look at those first before we discuss treatment.”

She pulled up my 20 or so test results on her computer, and this time I had moved beyond, “Impressive.”

“This is awesome,” she said. “You are beyond awesome.”

Here are a few of the amazing things that she saw in that report:

All of my Celiac antibodies are now negative! This is a huge answer to prayer and it shows how well my body is responding to my diet, especially compared to a few months ago when my other doctor was so concerned that I wasn’t responding to a gluten free diet.

“You are healing, and you are beating Celiac disease,” she said.

I’ve also quintupled my Ferritin level, which indicates my body’s ability to store iron. This has been a major problem for me during the past year. A year ago, my Ferritin was a 3 on a scale of 11-291. Now, I’m at 15, which means, I’m actually IN the normal range! I’m finally not anemic, which has made a huge improvement in my health the past few months. I’m still in the low range of normal, so I am going to try a new iron supplement to help with that. But, hey. I’m so much better!

All of my other vitamins and minerals also were in the range of normal. I’m going to add some new supplements to help with things like vitamin B, D, magnesium and a few others, but I am getting there.

My doctor still had quite a few concerns from my blood tests.

  • One of my worst ongoing symptoms is acid reflux. The only test result that had gotten worse was one that looked at my esophagus. This is a bit of a mystery.
  • I tested positive for Crohn’s disease for the second time. I’ve already had a colonoscopy and MRI to rule out Crohn’s disease, but for some reason my body is still producing antibodies that would indicate I have it. Again, another mystery.
  • My thyroid antibodies also are higher than normal. She is doing some additional testing for that. It is super common for people with Celiac disease to have another autoimmune disease that affects the thyroid (Hashimoto’s), so I’m glad she is looking at that.
  • I’m also hypoglycemic. Again, I wasn’t surprised at all by this. I’ve suspected I have some insulin issues because of my need to eat every two hours.

So, lots of fun stuff… but overall, I still see that I am moving forward and making good progress. I’m going to start on a new drug that is supposed to help moderate my immune system, and I’m adding some supplements to help with my nutrition level.

I’m also working on reintroducing new foods into my diet. This is easier said than done. I’ve really grown accustomed to my diet, and it’s hard for me to step out into the unknown by adding new foods. I’ve had some negative reactions to some of the foods I’ve tried, which knock me down again, so it’s scary each time I try something new.

Thank you so much to everyone who has prayed for me and all of the continued support. Feel free to leave me a comment!

**

If you are just catching up, you can read the rest of my story here:

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

1 Response

  1. Interesting! It does make sense that you’re working with a functional medicine doctor now. Yay, for the good news about celiac! Praying that the new medicine, plus the supplements starts making an even more noticeable difference in your health.

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