Collagenous Gastritis

Hi Mindi, Yes, Lanreotide(Somatuline) or Octreotide (Sandostatin) (two different manufacturers) was developed to treat acromegaly, however, it was discovered to shrink capillaries in the stomach area and has been used for stomach surgeries to stop bleeds and other off-label uses. Her gastroenterologist prescribes the drug which is delivered every month in a cooler on ice. My daughter had such severe bleeds when she was 14 years old, we were afraid to travel because she ended up multiple times in the hospital requiring several blood transfusions. Our gastroenterologist contacted the best experts in the country including Dr. Winter in Boston, who apparently was one of the first to diagnose CG. From these conversations, he came to the decision to use the Lanreotide. However, we had a bit of a "fight" with our insurance company because it was an off-label use, i.e., other than for acromegaly. We finally got approval, and this drug has been amazing. She is on the lowest dose made. Like any drug, it has potential side-effects, but it was the best choice for her and is allowing her to get through college. She is a junior in nursing school and has decided to try to ween herself off the drug by stretching out the dosing to every 2 months instead of 1 month. It makes me nervous, but I'm honoring her wishes. FYI after her shot, she notices a feeling of hypoglycemia, so she makes sure she has eaten something to bring her blood sugar up (that is one of the side effects). She gives herself the shot now but used to get it done at the doctor's office. For Octreotide I believe the dosing is 10, 20, & 30 mg. For the Lanreotide it's 60, 90, & 120 mg. We've tried both drugs, the insurance company required us to switch from Octreotide to Lanreotide, but both have been effective in their lowest doses. I hope this answers your questions. Let me know if you have any other questions for me or my daughter. My prayer is that she outgrows CG and is able to get off meds.

Hello Emewood
Thank you for reply and all that information about Lanreotide. I was not aware of it but have now found a few articles online about it with bleeding in stomach.
What an excellent Gastroenterologist your daughter has. Is impressive that he/she contacted other leading specialists for input on how to treat.

I have been taking Budesonide and Omeprazole for some years.
Side effects of these drugs a worry.
How does the Arnica Montana 30C work? Is that something she takes regularly or just if feeling of a stomach bleed?
Thank you.

I have been diagnosed in July ‘19 with Collagenous Gastritis. My second endoscopy in November reconfirmed the diagnosis. Initially, steroids specific for the gut and Protonix was prescribed. Now I am on Protonix. Due to the rarity of this disease, there is not a standardized protocol for treatment. My GI doctor suggested I receive a second opinion for treatment. Good luck finding a facility who specializes in CG. I was wondering, is there another patient out there with treatment modalities that have worked for them besides Protonix and a gluten free diet? Thanks.

Hi @jmn, welcome to Connect. You'll find many members, like @astaingegerdm @oakbourne @motherkat @mindi @adri55 @kaliwebster @epvb and @emewood talking about CG in this discussion:

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

Jmn, while we wait for others to join in, can you share how you're treatment protocol of Protonix and a gluten free diet is working for you? Have you tried other treatments?

Are you connected to the collagenous gastritis discussion group on Facebook? Lots of good info there. My daughter has CG. She's 20 years old and a Junior in college, doing well. She has changed her diet (no gluten) and takes a low dose of omeprazole (10 mg). When her stomach doesn't "feel right," she takes Arnica Montana, 30C homeopathic drug. It seems to help keep blood where it belongs. (Maybe a placebo affected but it has worked last two times she suspected a bleed while in college. She spent many days in the hospital with transfusions when she was 14 and 15 years old. Stress management also seems to help. Hope this helps.

My only help has been with the Miscroscopic Colitis Support group. Diet is the only answer.

Thank you so much for your suggestions. I do believe that stress plays a large contribution of this disease. Mine was caused by long-term, excessive use of over-the-counter Aleve, Excedrin and the like for migraines. It blew out my stomach. A lifestyle change is certainly in order for me. Yoga, tai chi, and quiet meditation are on the list. It sounds like your daughter has been battling this disease from an early age. I am 60 but was misdiagnosed with GERD for a number of years. So I unfortunately kept up my daily “cocktail” of headache meds. I will keep your daughter in my prayers.

I only have experience with Collagenous Colitis. I was treated with immunosuppressive medication for a month. This was my first episode of autoimmune colitis. Future biopsies did not show collagenous colitis but nonspecific inflammation. Finally clear with more immunosuppressive treatment. As I understand it, collagenous gastritis is different and tough to treat.

Thank you. Praying for all of you with CG. There are worse things to battle, but this is by no means a picnic. Thankful for the prayers of many.

Yes, CG is a bit different than C Colitis yet the same treatments are the protocol. The first challenge was being able to eat. I got down to 103 pounds. Now I have gained weight to 113. There is no cure for Collagenous Gastritis. I was so malnourished since my stomach was not absorbing nutrients of the small amounts I could eat. I have developed Osteoporosis as a result. The Protonix concerns me regarding life long use possible resulting in the side effect of bone fractures. It is like on disease creates another. For now, I am simply thankful that I can eat. I appreciate your support and reaching out. May I ask what immunosuppressive medication was prescribed for you? Thank you