Collagenous Gastritis

After having lost 30 pounds and suffering from severe stomach cramping and unable to eat much, I had a gastric emptying procedure and diagnosed with gastroparesis. Have had for about 6 months now. My gastroenterologist prescribed a medication, (not FDA approved, so I get from Canada) 50mg domperidone. I take before I eat and 1 before bedtime. The excruciating pain is gone, but still have the discomfort of feeling full all the time, but no more pain. Weight stabilized and haven't lost anymore but haven't gained any back. I'm told I will always have this. No cause (possible virus), no cure, and now I do sleep. Hope this is helpful to someone

I feel so sorry for you I also have both GP and CC sometimes not sure is worse when I was vomiting 30 or times a day with the GP or now in a bad flare with the CC and pooping 20 or mores times a day. Hope the meds work for you. Good Luck

Two years ago when my son was diagnosed there was hardly anything on CG. Now if you google - info is coming up!!

Just read a study. There is CG pediatric onset and CG adult onset. Pediatric comes by itself. Adult onset usually comes with collagenous collitis. My feeling is that they all have the same root cause - just different in look/symptom. My feeling is also that these are auto-immune. Once you get one auto-immune, not unusual to develop another over time. Doesn't hurt to follow collagenous collitis studies to see what is helping. As of January 2018 - Seattle Children's put together a research study of 10 medical centers in the US looking at SCD diet to see if it helps as much as meds or reduces need for multiple meds. It is for Crohn's/collitis pediatric patients only. Study locations include Stanford, Atlanta, Kansas City, etc.

@hklet1941 .. I have tried domperidone with no success, because of its side effects for me. It can be gotten at USA compounding pharmacies with no problem. I think it was pricey. Hard to remember back 5 years.

Hi. It has been Almost 6 weeks since our 12 day Mayo, MN visit. This Friday my son Jacob, diagnosed with advanced CG, will finally see out SC internist who has been in touch with Dr. Cartee and will start his protocol. It has been a rough ride....I expect it to continue to be so but he is a trooper. Nausea continues daily, e exhaustion and leg and chest pain. Indigestion etc.He takes anti nausea medication often but life is not as it should be for a 24 year young man. Just a quick follow up. Hope you all are hanging in. You are in the best hands!

@kellye5 Thank You for keeping us updated. So sorry about what Jacob is going through. I agree this isn't what life is all about. Maybe you will finally be able to get some relief with proper treatments and diet changes.
I had horrible acid reflex which ended up being severe Gerd. It took me literally months to get it under control. Learning to change my eating habits and adjust to a new life style.
Hang in there. Please check back, and let us know Jacobs process..
I wish you both the best..
Jackie

This Mayo Clinic group has been so helpful to me I would like to participate in return.
Since you mentioned dietary issues I am dropping this note into the chain. You may take it for what it is worth or simply delete. If you would like more information I can explain what I did (lots of phone calls and food logs ); you may write me directly if you want any of the back story.
My Symptoms – vomiting, nausea, achy stomach, bloat, weakness. Trouble talking, thinking, listening. All symptoms started slowly and slowly resolved after vomiting at the three to four hour mark. Had asthma as a child. Recent problems started 3 – 4 years ago. I am in very late middle age. Average weight. Y symptoms are almost completely under control now and I can look back and figure what I did wrong and remember for next time.
Medical - Had “every test.” GI doctor finally told me to just “avoid trigger foods.”
Problem: Couldn’t figure out what trigger foods were. Turned out the problem for me was the preservatives IN the food
Solution: avoid preservatives, especially sulphites which are rarely labeled. This is NOT easy
What I Can Eat
Beef, organic chicken, eggs, food after removing skins (apple, avocado, watermelon, etc) canned tuna, maybe lamb. Salad bar items not otherwise excluded. Also yogurt, milk, cheese, fresh fruits and veggies, ice cream (yay). Also cookies, cake – all that stuff you want to keep away from. One – two tablespoons of just about anything, most food in Europe or Africa. TV dinners – Swanson’s Hungry Man, Amy’s Organic. Always small meals and snacks. I am never hungry and amazingly have lost some weight.
What I Can NOT Eat
Marinated beef, NON organic chicken, PORK!, most seafood. Canned or frozen or otherwise preserved fruits or veggies or potatoes. Eggs that pour from a carton. Cruciferous vegetables (sort of figured this out) – even fresh. Any of these things that come in a package (note: this is a simple question to ask in a restaurant –“is ______fresh or does it come to you in a bag or is it frozen from another location?) Canned food (except tuna), boil in bag rice, large meals, Worcester Sauce (the worst!). Meal kits (specifically Blue Apron). Spicy or fried foods. My list could be much longer; I have enough food to satisfy me with my “Can Eat” list. You will want to make you own list.
Again, you may write me directly if you want any of the back story.

@marlaxyz Thank You for sharing. I understand that very well. And not eating certain foods is easier said than done.
Achy, Bloated Severe Stomach Pains. I AM RAISING MY HANDS OVER HERE.. Been through all of that.
Dr telling me to eat small meals, don't eat that food if you feel sick afterwards.
I don't think the medical industry can honestly answer us about food? You are about my age too.. It has gotten worse after I was diagnosed 2 years ago with H -Pylori, and Severe Gerd.
When I was young, I would starve myself a lot when my stomach started to swell and ache. After a a day of not eating it would calm down. That gets harder to do the older you get. Blood sugar gets low.
Everything I eat is boring and bland. Eating out typically makes me sick.
I eat chicken cause I can process it, and I hate it with a passion.
I think a lot of the changes in our food chain has something to do with the issues we have. All the preservatives and added ingredients we never heard of. But that is just my opinion. I cannot eat anything processed. I seriously feel sick afterwards too.
When my kids were babies, I made all their baby foods from scratch. I was afraid the processed foods would make them sick? Today my boys cannot eat processed foods.
It is hard for my husband to understand too. He wants to order a spicy pizza, and I go well just order me soup and salad. It is like my body cannot process certain foods. Anything with cream is brutal on my system..
We could spend hours talking about this.
I would love to see your list and see if the same foods are my triggers as well.
Jackie

@kellye Totally understand what you are going through. Mine is 17 yrs old. Diet is the only thing helping. Very hard to do but a have to.