Collagenous Gastritis

@emlozano01 - I moved your post here to where you can talk to others talking about collagenous gastritis:

- Collagenous Gastritis https://connect.mayoclinic.org/discussion/collagenous-gastritis/

Hoping you can meet members such as @luft80 @jlharsh @mickidc and others who can speak to your ongoing symptoms after starting omeprazole.

How are you feeling today?

@lisalucier
Thank you. I am feeling better today, though I do have stomach pain.

Thanks for the tag @lisalucier
If I have this correct, @emlozano01 you had an upper endoscopy then your doctor prescribed omeprazole to help your inflamed stomach, diarrhea and unintended weight loss.

I feel your pain and am familiar with your symptoms. Unfortunately, it probably will take time to let the medication work.

It sounds like you have been taking this new medication for a couple weeks now and it has not solved your problems. I am not surprised. I started a proton pump inhibitor (PPI) 6 months ago, checking in with my doctor at 3 months and was able to drop my dosage. My symptoms similar to yours have been improving but certainly not the first 2 weeks I took the drug. In addition to the drug I eat food my body likes and exercise every day to keep my GI working. I try to do everything I can to help the medicine work as quickly as possible.

- You mention calling your doctor to discuss your issues. Have you yet, and if not will you come back and comment as to how you are doing?
- How long have been struggling before getting your endoscopy?
- Have you noticed any change at all in the frequency of your symptoms, or perhaps new ones since starting your new medication, has it changed anything, for the worse or the better?

Took budesonide for a few months. Caused a lot of tooth decay. Five cavities and one tooth has to be pulled!

Trying VSL#3 now.

This is a debilitating disease to say the least!

N

Hello Everyone, I am a caregiver to a child recently diagnosed with collagenous gastritis. She just had her second endoscopy yesterday and it looks like her condition has worsened. I am here to gain insight on what her life might be like moving forward and understand how others have become successful managing their symptoms.

Patient is female, 13, bone age of 11, 4'11" 72 pounds (1% BMI) anemic, weak but trying her best. Has been on PPI for 4 months with no improvements (it actually got significantly worse).
The current plan is to switch to a long term steroid, but she is so young I'm terrified of the possible side effects.

Im thankful I found this group and I am hopeful that I will find answers and comfort here.

@ebrousseau Hi, We live in CT. I would be interested in hearing more about your journey with CG. My daughter was diagnosed this year and it seems to be progressing quickly.

@ad8809ct
I am followed in Montreal by specialists who concluded this is an «orphan disease». I am currently taking weekly Dupixent and daily high doses of Budesonide (Entocort) opening the caplets for it to try to act higher in the digestive tract).

This unfortunately seems to be a bandaid on the condition, which nobody understands yet. It does not heal or cure anything, it barely controls the symptoms and I feel that as soon as I’ll stop it might come back worse. Further, stuff like Budesonide (Entocort) are damageable on the long term... (bone density namely).

FYI: I was tested in basically all fields at this stage (in our free public Canadian health care system) and we concluded that it’s not auto-immune issue, it’s not allergic, it’s not a known genetic issue, it’s not rhumatological, it’s not ENT, it’s not neurological, it’s not haematological… what is it then? Where does it come from? Where is it going?

An internist is following me, team work with my gastroenterologist.

In parallel I got a retinal detachment, unilateral hearing loss, and an ICT (mini stroke) at 39 yo.

Honestly I don’t know where this will lead me. This nightmare appeared during the Covid 19.

@ebrousseau I'm interested to hear about the symptoms that led you to seeing a doctor and getting the diagnosis. Last summer, my daughter was doubled over in pain, vomiting and shaking uncontrollably, We noticed at her yearly physical that she had lost weight, and was very pale. She also has ADHD, and now she is showing less signs of that, meaning she is much less hyperactive mentally and physically, and now is presenting with more "typical" autistic tendency's (shaking hands, rocking, fixation on one object). She is also very tired or lethargic all the time. Thank you for being so open about your experience. The more I can learn the better.

It started like this: I had increasing difficulties eating, feeling rapidly full halfway into meals, vomiting saliva or reflux-like after dinner, feeling like a punch in the stomach after drinking a glass of water, namely. Generally speaking, I was pale and loosing weight. I felt less intelligent, looking for the right word all the time, and I started feeling more and more weak.

In retrospect all this was due to the stomach’s sickness, with a collagen-thick band colonizing it. My colon is similarly affected. This of course caused severe malabsorption and various carences (lacking iron, B12, D and other blood anomalies). All I ate wasn’t properly absorbed and my daily quantities were getting smaller, I was incapable of eating more.

The initial blood work and the first gastroscopy with pathology analysis were the first key steps/tests to identify « the problem ».

Hi @ad8809ct, and welcome to Mayo Clinic Connect! You mention being a caregiver of a child recently diagnosed with collagenous gastritis, and am so glad to see you begin connecting. You have found a great place to learn and encourage.

You may have already been reviewing more of this discussion as well as others related. This one has a considerable amount of comments, so I thought I’d specifically tagging a few members that have discussed pediatric collagenous gastritis (here and elsewhere)., hoping they have experiences to share: @rose715 @wendyt2018 @wendy2001 @jonnavalentina.

I thought you may be interested to watch a video from the Mayo Clinic GI blog for a straightforward overview.

-Mayo Clinic’s ongoing research to better understand causes of collagenous gastritis (2017)
https://connect.mayoclinic.org/blog/gastroenterology-and-gi-surgery/newsfeed-post/collagenous-gastritis-searching-for-answers/
Also, an overview of a treatment summary Mayo Clinic provides that may give you some background of their experience treating patients. It looks like they me a place to consider consultation.

- Collagenous Gastritis: Characteristics and Response to Topical Budesonide
https://mayoclinic.elsevierpure.com/en/publications/collagenous-gastritis-characteristics-and-response-to-topical-bud/
You can contact Mayo Clinic here to explore an appointment: http://mayocl.in/1mtmR63

What are your next steps?