Collagenous Gastritis

She takes omeprazole daily and has regular blood tests and iron infusions to deal with the side effects of the omeprazole. This does seem to have stabilized her. They talked about topical steroid taken orally but didn't feel it was needed. 🙂

It sounds like she has improved considerably, @alison486. That must be a relief for you. In my opinion, a mother's heart is more touched by her child's pain than even her own pain. Will you keep in touch?

yes please, hopefully i will be able to talk to others in the same situation. What makes her case even more scary is she experiences no pain whatsoever and so we have no warning. Diagnosed through biopsies. Thank you Teresa.

Hi! There is a facebook group called Collagenous gastritis that you might want to join. I have a 17 yr old with it.

Hello @wendy2001. Would you like to share with @alison486 something about your 17-year-old's diagnosis, symptoms, treatments, etc.? I'm sure it would be helpful to her if your are comfortable doing so.

Hi i am in the UK and my daughter was diagnosed with this when she was 13. We don't know of any other uk paediatric cases and even our doctors haven't met any adults even with it (we are lucky enough to attend one of the best in the uk). Do any of you have children with this please who would like to share information? Thank you Alison.

Hi @alison486,

As Teresa @hopeful33250 suggested, I moved your discussion to this existing conversation on collagenous gastritis. I'm tagging @wendyt2018 @jdav @kellye5 @elsanio @buckeyeliz @jwicks @wendy2001 @kacolton @motherkat as all of them have kids who are also struggling with this condition; I'm certain they will return to share more information with you.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

@alison486, has your daughter made any significant changes to her diet? Elsewhere in this discussion, members have shared the benefits of a GAPS diet which was derived from the Specific Carbohydrate Diet (SCD). I'd encourage you to view this Gastroenterology & GI Surgery Page on Connect, https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed/specific-carbohydrate-diet-for-pediatric-ibd-1/ where you can see Mayo Clinic experts talk about diets and other coping strategies.

There is also a facebook group called collagenous gastritis

Hello @alison486
I am sorry to hear about your daughter.
I have CG too I had my first large bleed 14 years of age and was rushed to hospital at that time. I am young adult now.
I suffered with gastric pain, especially when or after eating, most of my childhood years.

After my first bleed I had quite a few endoscopies before they properly diagnosed C.G.
Since then, I have been on Budesonide and Omeprazole. I also have regular iron infusions.
My medical team have not pushed me to make changes to my diet but I have read some sufferers say gluten free helps. Gluten free is often advised for auto immune disorders.
Not enough is being done, in the way of research, into this condition.
This is frustrating.

I wish your daughter well.

It is good there is a Facebook Page to direct us to, to connect with other sufferers.
However, I would like to encourage other members CG Page to keep posting here too.
There are some who do not wish to be on FB.
Please keep posting here on Mayo Support too.
Thank you.