August 2017: So it has been 4 months since my diagnosis. How am I feeling? So much better. Not 100%, but definitely better!
First thing, I gained some weight. Probably about 10 pounds. And I’ll be honest…it’s hard to gain weight that quickly. But, I keep telling myself that it’s a good thing though because it means that my body is absorbing nutrients again!
The first thing that I noticed since going gluten-free is that I have not had heartburn AT ALL! It was so bad before and it literally disappeared as soon as I stopped eating that “poison”. I also continue to have some tummy issues, nothing like it was before, but not back to normal. And these pesky tongue sores are still coming and going. I have been so diligent and careful with my eating that I was having a hard time believing that it could still be from getting “glutened”. One other symptom I started having was horrible joint pain in my knees, feet, wrists, sometimes shoulders. It’s been hard time getting up and down off the floor with the kids and it takes me a few minutes to kind of warm-up in the morning. Maybe I’m just getting old??
I went back to my primary doctor to make sure something else isn’t going on. She tested just about everything under the sun: Lyme Disease, Lupus, Rheumatoid Arthritis, as well as all of my nutrients to check for deficiencies, thyroid issues, and some other inflammation markers. Everything came back normal (great!) except for my Lupus antibodies. They were just slightly above normal, so I was referred to a rheumatologist.
I met with the rheumatologist and did some other tests for lupus and associated disorders. At my appointment he said that he thinks my joint pain is related to my Celiac diagnosis and all the inflammation it causes and not lupus. It is also unlikely that I would be diagnosed with two separate auto-immune diseases at basically the same exact time. He also said that I am in really good shape symptom wise compared to some of the patients he sees. So that was reassuring! All of my tests came back normal!
I then had an appointment with a gastroenterologist. After my diagnostic endoscopy in March, I was only given a double-sided sheet of paper that explained what Celiac Disease is and a phone call from the gastroenterologist saying these exact words, “You can’t eat gluten for the rest of your life. We don’t need to see you ever again. Goodbye”. Ok, so I’m exaggerating slightly but you get the idea. It wasn’t much. I didn’t feel the need to see another gastroenterologist when I was diagnosed because my college degree is in nutrition, Brian LOVES to research and become the expert on everything and I felt like I could find what I needed to on the internet. And I did!
The gastroenterologist I met with this time re-checked my Celiac antibodies as well as some other things. When I was diagnosed in March, my IgG antibody level was 22; a normal level is 0-3, 3-4 being borderline. When I told him my symptoms I am still experiencing his first thought was that I was somehow still getting gluten. I don’t know how that possibly could be because I rarely eat out and I am so super diligent in my gluten-free eating at home. He wants me to meet with a dietitian and then also have a DEXA scan to check for osteoporosis.
Results are in…
My IgG antibodies are down to 2!!! Yay me!! Whatever I’m doing, it’s working. I couldn’t be happier! My Celiac antibodies are at a great level and I don’t have Lupus or Lyme disease or Rheumatoid Arthritis. I did have a DEXA scan which shows osteopenia (lower bone density that isn’t yet to osteoporosis) so I need to figure out what next steps are to help keep this from progressing to osteoporosis. Exercise perhaps? What’s that? 😉
I am so glad that my hard work has been paying off. It has been a lifestyle change and it is a lot of work, but it has also been fun. We are cooking more at home and choosing healthier options. Follow me on Instagram at @minneceliac to see my adventures so far!