Collagenous Gastritis

I have a 24 year old who has been diagnosed a few years ago with Collagenous Gastritis. We have been to several doctors and he has had two colonoscopy procedures along with a number of lab work performed with the same year. Our medical out of pocket expenses are racking up to thousands of dollars. We can not find a doctor who can help him. His condition continues to deteriate.

Hello @rose715 and welcome to Mayo Connect.

I appreciate your posting about your 24 year old who has been diagnosed with CG. I can imagine your concern as well as his.

As you read through the other posts about CG in this discussion group you will see many parents who are discussing this disorder.

On October 23, I posted a video discussion by a doctor at Mayo regarding this rare disorder. I would encourage you to look at it for more information.

What type of symptoms does he have currently? Is he able to maintain his weight? As you may know, Mayo has facilities in Minnesota, Florida as well as Arizona. Is there any possibility that he could be seen by a doctor at Mayo?

its been while since my last post. We have seen several gi doctors but my daughter has yet to find relief in anything. She was on budesonide, but took herself off of it because it was making her sicker. She still has low iron (anemia) even after 3 sets of iron infusions, usually 5 every 2 weeks, then is good for about 3 months before we are back. She went gluten free and it doesn't seem to have changed the way she feels. Everything makes her sick or puts her in the bathroom a few minutes later. She pretty much given up hope and just wants to continue as long as she can hopefully without stomach bleeds. But me being the curious mom that I am, what are the odds of her ever getting pregnant? Cause I know that was one of her dreams to become a mom, but is it possible of she gives up on treatments? Or could it be possible if she follows treatments? Any info would be greatly appreciated.

Our 15 year old daughter was diagnosed with Collagenous Gastritis just this summer. Her daily symptoms are severe abdominal pain, nausea, heartburn/acid reflux and vomiting (daily unless she is able to just lie still until it passes- even then, that doesn't always work). She has tried dietary restrictions (no dairy, wheat, soy, nuts, eggs, shell fish) and added them back in- NO difference without/NO difference when adding them back in. Stress, even for exciting/good things, and movement do aggravate her symptoms. Omeprazole and ranitidine made her much worse- on 300 mg daily ranitidine last month for a couple weeks, her symptoms were worse than ever- including painful, dizzy spells nearing black outs, large blenching periods and the worst the heartburn/acid reflux has ever been. We have stopped all medications, under her doctor's care here in Oregon, and she is simply back to square 1- original CG symptoms. Also, with the Gastric Emptying Scan, we have found that she also has Gastroparesis.

So, after much research and prayer, we are heading to the Mayo Clinic in Rochester, MN, this coming week, to see a pediatric gastroenterologist. I would love to talk with you personally to see what you have tried and share our stories. I'm not sure how we can connect, but would very much like to. We will know more when we return.

My heart just goes out to you! It is brutal watching our children go through so much pain- with so many unknowns. How old is your daughter? How long has it been since she was diagnosed?

Hello @wendyt2018

I appreciate the kind and encouraging post that you wrote. I am so pleased to hear that your daughter will be seen at Mayo Clinic next week. I hope that you find some answers, encouragement and help in dealing with her symptoms.

If you are comfortable sharing more information, what day is your daughter's appointment? Will you update me about her progress and any help she receives there?

I have a 17 year old that was diagnosed over two years ago. We also went to several doctors. There is no one protocol that works. The only thing we are having success with is nutrition. My son is on the GAPS diet. It is similar to SCD which some Mayo Clinic doctors recommend for Crohn's patients. GAPS is like second generation SCD. It is very slow healing and our practitioner says it will take about two years. Feel free to reach out privately.

I was diagnosed with CG two years ago at 56 after several years of symptoms, including severe GERD, stomach bleeding, and anemia that was debilitating. I also have other autoimmune symptoms that could be related. I could not find a doctor that would treat me in Florida but was accepted at Mayo. Taking iron with vitamin C replenished my blood cells slowly and I have normal blood count and more energy after about a year. I was treated at Mayo with PPI and Budesonide without success, unfortunately. I am left with coming for periodic endoscopies to remove polyps and to monitor pre-cancerous conditions.

I have in the past six months changed my diet after focusing on how foods made me feel. I now eat mainly a plant based, gluten-free, dairy free diet. I also have eliminated anything with canola oil, the skins of nightshade vegetables, sugar, caffeine, alcohol, fried foods and heavy spices. When I maintain this diet, I have much less pain and healthier bowel movements. I do not suspect that I will see any improvement in my condition but I do feel better.

Hi! I just found your post. I had a peptic ulcer in 2006 at the age of 15 that almost killed me. I was diagnosed with collagenous gastritis in 2010. What more would you like to know? Theres unfortunately not much information on the disease but it is very painful for me.

@clif Thank you so much for your share! I'm so happy to hear that you have been able to get some relief with your change in diet. We've tried dietary changes - 6 food elimination, with no change whatsoever. I'll post what we are doing now under a doctor's care at Mayo up top. (So I only do it once) 🙂 So glad that you do have a diagnosis after so long. Wishing you much relief with your new plan!