Collagenous Gastritis

My 19 year old daughter was diagnosed with CG when she was 11. It has been a long road. She had a hemoglobin of 5 and had to receive transfusions. Took a very long time to diagnose. She is trying gluten free diet and we will see how it works. Has anyone had pain relief with this type of diet?

Hello @nm18, and welcome. I'm sorry to hear about your daughter, and so glad you've joined this group. I would sincerely encourage you to take a look at these videos on the Gastroenterology and GI Surgery Page on Connect:
– The Strange World of Non-Celiac Gluten Sensitivity https://connect.mayoclinic.org/newsfeed-post/the-strange-world-of-non-celiac-gluten-sensitivity-1/
– The Gluten-Free Diet: A Practical Look https://connect.mayoclinic.org/newsfeed-post/the-gluten-free-diet-a-practical-look-1/

I'm tagging @jng123 @guaranlam @bakingchick @mommyof6 @epvb @theresap @looloo @tlcollazo1230, who have all shared what works/what doesn’t with regard to various diets.

@nm18, has your daughter just started a gluten-free diet? May I ask if you could share more about how she managed her symptoms so far?

Wow! I like this group already. Thank you for the quick reply I feel like for I had no one to discuss this with for all these years that understood what she is going through. She just started the new diet a few days ago. She experiences stomach pain and lethargy on a daily basis. She does not watch her diet at all and I am convinced this could exacerbate symptoms. She loves very spicy foods and puts red pepper or hot sauce on everything. I am trying to have her limit that while she goes gluten free because I am convinced that hot foods spicy cause more pain as well.

How long have people been on the gluten free diet before they noticed a change in symptoms?

I eliminated spicy foods, acidic foods and fried foods several years ago and continue to do so more for heartburn than stomach ache issues. I tried a gluten free diet for 6 weeks but found there was no change in my symptoms. I find that I can eat a particular food several times with no problem, but that same food can cause severe stomach aches and pressure along my digestive tract the next time I eat it. There is no consistency with food and symptoms.

I have a 17 yr old son with CG. We are totally grain free, took out all additives and preservatives, and eat only organic grass fed meat. It's the GAPS protocol which is is similar to SCD that has been recommended for Crohn's patients. It's very hard to do but we finally have it down after 3 months. He is finally doing better which we are sooo excited about. PM if you would like to discuss.

Hello @nm18 - your daughter sounds a lot like me! I am 21 now and was diagnosed with CG when I was 19! I had to have 4 transfusions it blood and 2 of iron! It was crazy! I had no idea but I was jaudenice so the ER admitted me right away. Then I had an endoscopy and they found a lot of collagen. I am due for another endoscopy this June to see if anything’s changed. This might sound crazy but last summer I went vegan AND gluten free and I had never felt better. BUT after 3 months I was super light headed again and fatigued so i added meat back into my diet. Right now I am being gluten free and dairy free. I am actually haven’t quite a few stomach issues right now and feeling light headed very often- and this is eating healthy foods. Whenever I eat gluten my stomach feels ‘bubbly’ and I am tired. And dairy really upset my stomach with bloating aching and pain. Sometimes I feel CG is very similar to celiac disease. Which is a good disease to look at and somewhat follow protocol since there isn’t much to look at for CG. If your daughter wants to contact me since we are close in age / have similar experiences she / you can DM me!

@epvb and @kellye5 Did you read my post 22/5? It know it can be easy to miss a Reply. It was about the leg aches experienced and if you have ever tried Magnesium.

Most people with conditions like ours need magnesium. We use CALM and add to smoothies.

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.