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kellye5
@kellye5

Posts: 93
Joined: Dec 12, 2017

Collagenous gastritis

Posted by @kellye5, Sun, Apr 22 3:23pm

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!

REPLY

@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.

@travelgirl

@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

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@travelgirl Sounds like there are similarities across the foods that work and don't work. We have taken my son off all foods with any kinds of additives, etc. Only clean food and only monosaccharides which break down easily. No sugar except honey and fruits. Much like AIP too. Grass fed beef, little dairy except pastured butter, pastured eggs yolks,etc

So far food types really make do difference which is what we were told at Mayo as well. We have tried. He has found rich foods are a turn off. But Very small meals. Dr. C has said the Dash Diet is most recommended for CG. So we are trying that. I have noticed he cuts his meals in half or even more…it is all he can handle.

Hi, I was diagnosed when I was 28 or 29. I'm 34 now.. Dr. Murray and Dr. Garg at Mayo Rochester have been the only doctors who have been able to help at all. I too can only eat tiny portions of food without feeling like I'm going to vomit or, will ultimately just vomit. Dairy, red meat, sugar, and carbs do not agree with me. I also tend to stick to small portions of chicken, fish and steamed veggies. They found that I have zero acid in my stomach, making it difficult to break any of the food down. I am always extremely exhausted, which is difficult with family and intense work obligations (which everyone can relate to). I'm also a distance runner, and I find it difficult to get adequate nutrition to fuel me for long runs.

On my week-long visit at mayo I was put on 2 different laxatives, due to stool overflow, prednisone, and something to get rid of the excess bacteria in my stomach (since my stomach has no acid, there is bacteria). I was also given an endoscopy, and a camera was inserted into my bloodstream that traveled to my stomach and took pictures– which I thought was pretty innovative technology! Anyway, I was doing much better for about 2 months.. I was not vomiting and very little pain. And within the last month, my stomach has almost reverted, which is so disheartening. The only thing I'm able to keep down are scramble eggs. And I can only eat so many scramble eggs… I'm reading through everyone's recommendations, and going to try any diet changes that have worked for others. I really appreciate everyone's input.

My heart goes out to all of you dealing with this rare, ambiguous disease, and I hope you find the answers you need to feel better.

Liked by kellye5

@jdav

Hi, I was diagnosed when I was 28 or 29. I'm 34 now.. Dr. Murray and Dr. Garg at Mayo Rochester have been the only doctors who have been able to help at all. I too can only eat tiny portions of food without feeling like I'm going to vomit or, will ultimately just vomit. Dairy, red meat, sugar, and carbs do not agree with me. I also tend to stick to small portions of chicken, fish and steamed veggies. They found that I have zero acid in my stomach, making it difficult to break any of the food down. I am always extremely exhausted, which is difficult with family and intense work obligations (which everyone can relate to). I'm also a distance runner, and I find it difficult to get adequate nutrition to fuel me for long runs.

On my week-long visit at mayo I was put on 2 different laxatives, due to stool overflow, prednisone, and something to get rid of the excess bacteria in my stomach (since my stomach has no acid, there is bacteria). I was also given an endoscopy, and a camera was inserted into my bloodstream that traveled to my stomach and took pictures– which I thought was pretty innovative technology! Anyway, I was doing much better for about 2 months.. I was not vomiting and very little pain. And within the last month, my stomach has almost reverted, which is so disheartening. The only thing I'm able to keep down are scramble eggs. And I can only eat so many scramble eggs… I'm reading through everyone's recommendations, and going to try any diet changes that have worked for others. I really appreciate everyone's input.

My heart goes out to all of you dealing with this rare, ambiguous disease, and I hope you find the answers you need to feel better.

Jump to this post

@jdav I am so sorry that you are going through so much. My 24 year old son was diagnosed last summer. We spent 12 days in Mayo, Mn. in Feb this year. While we got answers and are trying everything( and love Dr. Murray and Dr. Cartee), we are looking at disability for him. Every food makes him sick so he eats extremely small portions. He takes zofran daily and lives in the br. The disease and what it brings with it make him exhausted and I imagine depressed although he tries. He has odd issues as well but I believe related: joint pain, boils, jaw pain(grinding from pain maybe), shoulder pain, neck and back, chest pain and of course stomach…

We wish this on no one. If you find anything that works please share or pm me with anything you might know of that might be helpful to my son.
Peace.

Hi @kellye5 I'm sorry for your son. It is miserable, and I hope that he begins to feel better. Activity makes me feel better, and just not dwelling on it, but I understand that each case is unique with each specific set of challenges. I am in a challenging phase currently, and really can't give any advice as to what has worked for me, but I wish your son the best, and hope he is able to keep his spirits up.

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