Two years ago. It feels like a lifetime now, but it's only been two years, officially, with Celiac Disease. A quick update and a reflection on my journey.
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Healing Takes Time.
It's been two years and I can honestly say, I feel so much better since my celiac diagnosis but between antibody levels and low bone mass, there were still some questions in the air. Healing that much damage takes time.
Celiac Antibodies and Upper Endoscopy
There are two antibody levels monitored for celiac disease. The good news is my Deaminated Gliadin Antibody (DGP IgG) level has normalized... woohoo!
Unfortunately, the Tissue Transglutaminase (tTG IgA) result is being a bit more stubborn. While it has come down quite a bit, it is still elevated. While I know this is out of my control, it is truly frustrating considering how strict I am with my diet. Since I'm at the two-year mark and I still have this elevation, my doctor advised repeating the endoscopy (EDG) to make sure things are healing.
I had the scope done and the good news is I have normal villous architecture! This means my villi (the fingerlike projections in your small intestine that are damaged from celiac disease) are back and looking good! My doctor noted that based on the biopsy results, I am responding well to the gluten-free diet. This is a relief to me not only because that elevated antibody was making me question everything but also because even though I feel better, I really had no idea what was actually happening inside my body. So yay! Good news!
Speaking of that scope, I don't know if it's just me, the way I react to the sedation, or what but both times I've had the EDG done, I have had a strange experience. During the procedure, I have the feeling that I'm half awake and gagging and I can hear voices talking. What I recall of it now, just feels like a dream. It's a very strange feeling after the fact, but I assume this is normal? I wonder if anyone else has this experience as well.
Low Bone Mass
According to my last bone scan, I still have low bone mass. I'm trying my best to consume all. the. dairy. in hopes of improving that but in full honesty, I could probably do a better job. I am scheduled for another scan and check-up with that specialist this summer. In the meantime, trying to stock up on dairy! If you see me, please offer a glass of milk. ?
Unwanted Side Effects of Healing... weight gain.
Oh, the ole weight gain. I feel like I am slowly, slowly, slowly, constantly, constantly, constantly gaining weight! It's annoying because well... I don't eat that much! I try to stay in an exercise routine and even when I am in a pretty solid work-out pattern, I still. gain. weight. What gives?! I know, I know... a little thing called intestinal absorption. But still... frustrating.
Then there's the Food
I've gotten more confident in dining compared to last year. I'm not as afraid to eat out but I still seek out restaurants that are almost or entirely gluten-free or have well known gluten-free protocols. I still fear a glutening because that does not sound like a great time, let alone worth it.
When it comes to family functions or parties with food, I've gotten to the point where I tell people not to even worry about food for me. It makes everyone's life a lot easier. If they still choose to make something, I can decide if I feel comfortable eating and not feel bad about it if I don't. I tend to eat before any type of function or bring snacks.
We went to a wedding recently where I knew there would be nothing I could eat. I snuck a bite to eat between the ceremony and reception and still had a good time! It is a little awkward sitting there while everyone else eats but really that's the best time to use the bathroom! No lines!
That's it, Happy Gluten Anti-versary to me! Want to read more about my celiac disease journey? Check out my diagnosis story or my one-year update.
Kristina
How are you doing now 2 years further on? I am celiac and have also gone dairy free.
Kathy
It’s been quite a journey and you traveled it well! ❤️ Nice work!