When I was diagnosed with Celiac Disease in 2008, I honestly thought that would be my only diagnosis. Little did I know my body had other plans for me and boy would they be a doozy.
For the past 6-8 months I have been having numerous health issues. Ok I lied, probably for more than that. Years would be more accurate. But as a Mom, sometimes we tend to put ourselves last. I did just that because I had one little still at home and wanted to enjoy every single second of my time with him before he started Kindergarten this past August. After he started school I promised myself I would go see the Doctor and get to the bottom of all of these new issues.
I was started to have these wicked reactions to certain foods, choking on foods to the point I would vomit, food was getting stuck in my throat, lots of hiccups and horrible heartburn no matter what I ate. Foods that normally didn’t bother me started to cause an anaphylactic type of response, one time I almost felt like I was having a heart attack after eating a peach. A peach?!? Benadryl was my best friend and I had Tums on me at all times.
Then I started feeling fuller than usual after I would eat or drink. I thought how is this happening I have only eaten a couple bites of food. On my son’s birthday this past September , 30 mins prior to everyone showing up for his party my stomach started bloating so bad and the pain that followed was horrific. I told my Husband I had to lay down and something was wrong. In all my years that I have been married I have never missed an event that I hosted no matter how shitty I’ve felt, but this one I just could not stand up the pain was so bad and I was so nauseated. I knew it wasn’t gluten because like I’ve said before our house is 100% and I know I had in no way shape or form been in contact with gluten.
Two weeks later I got into my GP, who ordered a bunch of lab work and gave me Carafate to coat my throat and started me on Nexium until I could get into a new gastro since my former one retired. I honest to goodness thought I would see the gastro, he would tell me I just had GERD, tell me to avoid certain foods and I would be on my way. I was in for a huge surprise.
Prior to my gastro appointment I did my research as to what I could possibly have. I know, never Google. It’s the worst thing you can do to yourself sometimes, other times it proves to be quite useful. I was talking with another Celiac GFF whose own son had just been diagnosed with EOE and I told her for some reason I feel like that’s what I may have. Call it a gut instinct.
When I saw the gastro the first thing he asked was if I was ever diagnosed or told I had EOE. I told him no I was only diagnosed with Celiac in 2008 via biopsy and blood work, and that was the only thing I was told that I had. He told me that after reviewing all of my records he found that on the same biopsy it showed that I also had EOE, directly under the celiac disease diagnosis. How did my former gastro miss this? How did the gastro after that miss this? 6 years went by that I had EOE (possibly even longer) and no one ever told me? That same visit the Doctor also felt I had gastroparesis based on my symptoms . During my exam he shook my belly up after a good 3 hours after I had yogurt and it was still sitting in there sloshing away.Undigested. We left the office setting up yet another endoscopy where I would also be dilated due to the EoE and constant choking episodes, and orders for the HIDA scan & gastric emptying study.
I sat in my van after we left the office just in awe. I just wanted to leave with GERD and be on my way. Not have all of this fall on my lap. I cried to my husband all the way home. I was mad, I was upset, I was pissed off at the world, so many emotions flooded me. Frustrated the former gastro never told me I had EoE, the possibility I may have gastroparesis, and a gallbladder that may not be functioning. After that day I had no idea what I was in for. Never once did I think my life would be flipped upside down completely after that day.
I had the gastric emptying study done, my stomach didn’t empty after 4 hours. Shocker. I had the HIDA scan done, my gallbladder didn’t behave either. Again, shocker.
I had the endoscopy done. It showed my celiac is not responding to a gluten-free diet, but the blood work I had proved otherwise as no antibodies showed up.
Since that day, I have taken each day in stride. I have good days, I have bad days, and I have horrible days where I feel like this is all a dream and I will wake up not sick. This is a whole new world to me, just as the celiac was when I was first diagnosed. I am now not only gluten-free but dairy free, egg free, soy free and nut free. People tell me all the time I don’t look sick, just as they have with celiac. I call them the invisible trio! What people don’t know is I’ve lost 28 lbs since September , still losing weekly as I struggle to get my full caloric intake in each day , and always feel nauseated with or without food and small bites of food leave me instantly feeling full, when I know I am far from it. Water even causes pain and instant feelings of satiety.
Yesterday I saw a surgeon for a consult regarding my gallbladder to see if I needed to be taken out. He agrees that my gallbladder is not the problem and would not be beneficial to take it out, in doing so it would cause a new set of issues and pain.
Part 2 of my diagnosis will come soon after I proceed to the next step in my journey to normal again. After the new year I will get the ball rolling on that, as of right now I just want to enjoy Christmas Break while my kiddos are home, give them a wonderful Christmas and fun filled break! I will be going to Shands here in Florida for a consult regarding care and management of my gastroparesis as well as the Celiac Disease.
If you have gastroparesis do you have any tips or tricks you use? What are your favorite ways to help with the nausea & vomiting? I am currently taking Bentyl, Zofran, and ginger chews.