Collagenous Gastritis

Hello,
My daughter is 12 and has been diagnosed with Collagenous Gastritis 4 months ago (at 11 yrs old). Before diagnosis, she had suffered from anemia since 2019. Had to give a blood transfusion once and iron infusions very regularly as she was small and the doses were limited. As regularly as once a week to bring her ferritin and hemoglobin up. GI doctor initially could not find anything and it took a year and a half and 2 endoscopies/colonoscopies to find out the reason. I also got a second opinion on her pathology to confirm diagnosis.
She has been on PANTOPROZOLE for last 4 months, her hemoglobin and iron levels seem to be stable for last 6 weeks.

However, she gets extremely tired (shortness of breath) and complains of pounding headache and chest pain with physical activity, so much as few minutes of it. Just playing with her friends makes her tired. The symptoms pass after few minutes of rest. We have seen cardiologist completed echo cardiogram , EKG with no issues.

At the moment we are at the point of stress testing and getting appointments with pulmonologist. List of specialists never seems to end.

Did anyone else experience this? Would there be any improvement?

I am struggling to find information. She loves to dance and now not able to. Although she pushes herself to some extent.

As I found the group and read the comments, I realized I am not alone and there are others struggling.

Thank you all for suggestions and comments.

RJM

Hello @rjm and welcome to Mayo Clinic Connect. I am glad that you found this patient support forum. As you probably know, Connect, is made up of patients and we are not medical professionals. We do, however, have other members who have discussed this disorder and I hope that some of them will respond to your questions.

I applaud you for wanting to have as much information as you can. As you probably know Collagenous Gastritis is a rare disorder, which probably explains the difficulty in getting a diagnosis for your daughter's health problems. I am glad to hear that her blood work is showing improvement.

To help you in your search for more information, here is a link to a Mayo Clinic video talking more about this rare condition. Just click on this link, https://www.youtube.com/watch?v=XY-0Fsv20sw.

Here is some information from the National Institute of Health website that might be helpful as well, https://rarediseases.info.nih.gov/diseases/10961/collagenous-gastritis/

From what you say your main concern right now is your daughter's energy level and stamina. Is that correct?

Hello Teresa.
Thank you for the reply . Yes her energy levels and stamina are the main concern at the moment.

@rjm, Does your doctor give you an indication as to whether or not this lack of stamina will be temporary?

No not really … we don’t even know the reason for her fatigue. And doctor did not connect it to CG. We are ruling out other issues at the moment. Like cardiology and pulmonology …

The "ruling out" process does take time, @rjm. I do hope that an answer is found soon. Fatigue has to be difficult for a young person.

How is your daughter coping with this change in stamina? Will you keep in touch and let us know how the process is going?

Biopsies during a recent colonoscopy revealed collagenous (microscopic) colitis. My doctor has recommended several weeks of taking Budesonide. My "gut" issues are multiple and have at times consumed me. This new diagnosis gives me hope that this can be part of or all of my problem. Anyone have any history of collagenous collitis?

I too have been diagnosed with collagenous colitis, a miserable condition. None of the oral medications have given me any relief so the specialist wants to start infusion therapy (waiting on approval from Medicare). My weight has gone from 170 lbs to 121. It has changed my life and made me almost a recluse due to frequent trips to the bathroom and many accidents. Let me know how the medication works for you.

@fdixon63 - I was diagnosed with collagenous colitis 13 years ago. I was initially treated with Methotrexate injections that stopped the non- stop diarrhea. Budesonide should also work.
It is an autoimmune condition- - a trigger, such as a medicine, was never found.
The autoimmune intestinal condition returned, but without the continuous diarrhea. I was later treated with more immunosuppressive medication.
In your case, I would try the Budesonide. It is safer than Prednisone because it’s not absorbed by the body

Morning. Thanks so much for your experience with this type colitis. Let me understand what you're saying. Is it somewhat a temporary fix and symptoms return? I did not know it was an autoimmune condition. I also have lichen planus and have been able to detect certain triggers with it but a "surprise" sometimes will pop up. Guess that is also the case with colitis. Gut issues can be quite a mystery to diagnosis and treat. I've been on the medication for 7 days and so it is a little early to determine any results. Again, thanks. Hope some others will give some input. Take care.