I tumbled upon this as I am researching into the disease.
This is a story of a mother who has a daughter diagnosed with Collagenous Gastritis (CG).
It all started in August, 2019. My daughter who is 12 now, started complaining that she is dizzy and tired. She has not been eating well for past few months, but we told ourselves that was because she is not hungry. She said she felt full all the time. She did look pale and lost weight which made us take her to the pediatrician. Regular blood work revealed Hemoglobin at 4 and iron at 10 which resulted in ER visit for blood transfusion. Since then she had many iron infusions (after a while we lost count). Iron levels never sustained and based on her weight the infusion dosage was never sufficient. Any oral medicines she took gave her rashes. During an iron infusion we learnt she is allergic to Ferrous Sulfate . We were at hospital for infusions 3 days a week. She took it all as a champ, went home with IVs. On 3rd day IV wouldn’t work. Finding a vein for IV is always a challenge.
Gastroenterologist ruled out any GI problems with endoscopy and colonoscopy.
At this point, we started looking to genetical testing which also came out normal. It was frustrating for us to not know what the problem is but keep on with iron infusions every 2-3 weeks.
I probably never mentioned, she has never been picky eater, her diet is nutritious.
By early 2021, after we exhausted all possible causes, we thought of hitting a reset button as she had put on some weight and with regular infusions seemed healthy but only her body never made the iron needed. Hematologist suggested we go back for GI evaluation and so we chose a different doctor than before for a second eye and yet another endoscopy and colonoscopy. This is when the GI found collagen build up, inflammation and bleeding. Pathology tests revealed the reason and so diagnosed with CG.
She is been on Pantoprazole 40mg twice a day since 4 months and that has helped stable blood count. As I write this, it’s been 6 weeks she had iron infusion and we are monitoring to see how far we can go.
However, she has fatigue, headaches, shortness of breath and chest pains with physical activity. My dance loving girl has not been able to dance to heart’s content since 2019. She is pushing it through what she can 5 min at a time.
Now we are checking from Cardiology and Pulmonology perspective while I wonder if this is because of CG.
She just mentioned she hears constant noise and I didn’t think much of it until I read one of the cases of CG had that too. Now that I think I am not completely sure if rashes were due to iron supplement. They were a lot more when she took supplements though. She still gets them occasionally usually at nights. She also seems to be sleep walking/talking which was never there before.
I don’t know what is related to CG and what is not anymore.
I am thankful she is not in pain.
Thank you for creating the website. I am sure there are more like us and will find this place to tell the stories and give/get suggestions and support.
My name is Seraphina, the author of this website. Throughout my teenage years, I noticed something wasn’t right.I had a tendency to always feel under the weather. I was always tired, I had stomach aches and had a ton of brain fog.I saw many doctors and the only thing they could find in the beginning was iron deficient anemia(this was later treated by an iron infusion in the summer of 2020).
Eventually by the summer of 2020, I became very ill.I was debilitated with symptoms.Extreme dizziness( like I am on a boat), weakness, nausea,extreme fatigue,brain fog,abdominal pain (hunger pangs) ,blurry vision,nausea,indigestion,fast heart rate,fainting,weakness,ringing and blocking of the ears,muscle and joint pain,rashes,flu-like symptoms,loss of vision,bloating,migraines,chest pain,shortness of breath,night sweats and weight loss in a burst.
Many ER visits,and still no one knew what was going on. I was not able to start the school year in September 2020 because we still had no answers and I was not well. By December 2020, my biopsies came back and I was finally diagnosed with collagenous gastritis.At that point, I started a course of prednisone.When I first started steroids, I had a very hard time adjusting.My heart rate was very high, I often felt very confused, I had an increase in sleep hallucination, I always felt very tired and weak.A few months in, I started to adjust and feel better. My abdominal pain started to improve slowly.Midway through my course of steroids, I started 100mg of Imuran(aka azathioprine).That also further decreased my abdominal pain.
Although I had a decrease in abdominal discomfort from the Imuran(I still have chronic bloating and daily stomach aches but it is much more bearable than before), my chronic dizziness, migraines, fatigue and brain fog never went away. In an attempt to alleviate those symptoms, I started 20mg of amitriptyline. This has helped a bit with the migraines and brain fog but I still have chronic dizziness as well as chronic fatigue.
Day to day, I still struggle with nausea, bloating, some abdominal discomfort, dizziness,fatigue,headaches, and occasional weakness but I am a lot better than where I was a year ago.I have been journaling daily to try and figure out the reason behind my dizziness and fatigue.My hope is that one day I will be almost 100 % better, to the point of where my symptoms will no longer get in the way of my life.
If anyone has a similar experience and has helpful tips for me to get better, please let me know.I am also very excited for the Recommendations page to be in use, as we can learn from each other.I cannot wait to hear the rest of your stories!