Everyday Eating with Celiac Disease

Living with Celiac Disease

Day 2 at Mayo– testing day August 20, 2014

Today was testing day. I had to start fasting at 8pm last night. With my hypothyroidism (Hashimoto’s) I’m pretty use to doing fasting blood draws. However, I had a lot of blood drawn this morning—15 vials! That’s a record for me. I think the most I’ve had drawn was 7. I felt like a blood bank.

 

From there, I went straight to Nuclear Medicine for my gastric emptying scintigraphy. This test determines how fast (or in my case, how slow) it takes for food to digest and move on to the small intestines. I’ve not had this test done before, but I’ve learned it’s the gold standard for testing for gastroparesis. It’s also a test that many hospitals don’t have the technology to do. It’s not invasive, but I can’t say I actually enjoyed the experience.

 

At 9am, I was given breakfast laced with radioactive isotopes. It was 2 eggs, gluten-free toast and a half pint of milk. (funny sidebar- I grew up in Mount Joy, PA, a few miles from Three Mile Island and my family evacuated during the 1979 accident.  I’ve joked about being radioactive from time to time). I don’t normally eat breakfast, simply because I don’t feel hungry and I get sick every time I eat. I had to eat this breakfast in 10 minutes. The amount I had to eat in 10 minutes, was more than what I typically eat during the course of the day. So, I knew I wasn’t going to be feeling great for much of the day.

 

After I ate breakfast, I got scanned. I had to get scanned every hour for 3 hours. Then, it was time for lunch. Ugh! I really didn’t want to eat any more. But, I had to as part of the test. Again, the lunch was laced with radioactive isotopes. Lunch was 2 slices of gluten free bread, 5 ounces of deli-sliced turkey breast, Jello, and 12 ounces of water. I was getting nauseas just looking at what I had to eat. Fortunately, I had about 30 minutes to eat it all. It took all I had to finish it and I absolutely did not feel well—mainly stomach pain. I got scanned again 2 more times. In total, this study lasted 7 hours. Oh, I couldn’t eat or drink ANYTHING but what was given. I was eager to get back to my hotel room and lay down.

 

That was my day. I’ve been in bed for the past 5 hours and I’m feeling better. I’m excited to go to my appointments tomorrow and see what my doctors say.

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Challenges in Living with Autoimmune Diseases June 14, 2014

Filed under: Everyday Living with Celiac Disease — Michelle @ 12:13 am
Tags: ,

So, it’s been a while since I’ve chatted.  I want to share with you some challenges in living with autoimmune diseases.  I was diagnosed with Celiac Disease about 6 years ago.  I also have Hashimoto’s which I’ve had for a while.  Both are autoimmune diseases and both are quite manageable– gluten free diet and medication for the hypothyroidism.  My oldest daughter also has both diseases.

 

We’ve been told that if you have one autoimmune disease, you’re susceptible to other autoimmune diseases.  I’m now struggling with this issue.  For the past 6 months I’ve had pretty bad GI issues, joint stiffness, muscle pain, extreme fatigue and sensitivity to the sun. After a lot of blood work and specialists, I learned I have Systemic Lupus.  I see a rheumatologist and right now my only treatment is for the joint stiffness and pain. I’m taking a B-12 nasal spray to help with my energy.  Other than that, I’m still feeling crappy. I can’t be out in the sun and I have to limit my physical activity so that I don’t overexert myself.  Grrrr!!!!  I had to give up tennis!! I need to take breaks, often naps.  However, I’m so glad that I have my own business.  I’m not able to work a scheduled 8-9 hour job every day.

 

My GI issues are the most problematic.  It makes me weak and I’m losing weight. I’ve seen my GI doctor and he’s concerned it may be one of 3 conditions– Crohn’s Disease, Colitis, or Lymphoma. Here are my thoughts on this:

Crohn’s– Well, that would just be a cruel trick of nature to have both Celiac and Crohn’s.  So not cool! However, it doesn’t appear that it’s common to have these three together.

Colitis– Still not cool!  It’s common in Systemic Lupus. Treatment is typically corticosteroids. I’m not sure about how I feel about that since I have a bad reaction with steroids.

Lymphoma– Seriously not good!  My doc’s concern with this is two-fold.  I’m “clustering” autoimmune diseases which seem to indicate something seriously wrong with my immune system.  Also, he’s concerned that I had Celiac untreated for so long that it may have stirred up some malignant craziness in my intestines.

 

So, I’m guessing the lesser of those evils may be Colitis? Anyway, this has been on my mind.  I’m getting “scoped” June 30.  Yep, this 36-year-old is getting her first endoscopy and colonoscopy at the same time! Pure joy! I’m reaching out to my Celiac/Autoimmune Disease friends for thoughts and experiences.

 

 

 
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