Mayo Clinic Connect
I was recently diagnosed with collagenous gastritis which is very rate. I’m looking for anyone else who has similar diagnosis.
Liked by Teresa, Volunteer Mentor, jng123, jjdenaro, kellye5 ... see all
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.
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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?
Liked by wendyt2018
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.
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.
Liked by kellye5, wendyt2018
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.
Liked by Mindi, wendyt2018
@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!
Liked by Mindi, kellye5
@dpsmarkia So sorry for all you've had to go through. It would be so helpful if you could let us know what you've tried, over the last several years, in regards to medication, diet, avoidance, triggers, doctors advice, etc. -things that didn't work, as well as what did. Wow… you are so right that there is not much out there. And, when something works for one Collagenous Gastritis patient, it very well may not work for the next one. So appreciate your sharing with us! Look forward to hearing more. 🙂
I read your post Nov 1st. You said in that post your 15 year old daughter was to have appointment with gastroenterologist the following week at Mayo Rochester. Can you please say if medications were suggested/prescribed or if any other treatment eg. diet was suggested at that appointment. Did your daughter see Dr J. Murray or another gastroenterologist there? What advice have you received from them.
I gave outline of treatment prescribed by my gastroenterologist in my 27/10 posting.
I hope your daughter’s symptoms are decreasing in severity.
Budesonide has helped alleviate mine. Unfortunately I have had to weigh up long term side effects of medication vs frequent pain in stomach with gastric bleeds and then transfusions.
Liked by Kanaaz Pereira, Connect Moderator, wendyt2018
Hello! I'm relieved that you got the same diagnosis as me! ( i thought I would be the only one in a long time that would have it )
As I am still a child I haven't had this diagnosis my whole childhood, though I've been diagnosed with it for six years.
I live in Sweden and I have major issues with especially the abdominal system. Early, I was diagnosed with anemia that resulted in depressive episodes in my life and because of that, I was later diagnosed with depression.
When I was about six years old I had my first gastroenterological examination. It was one of the most terrifying experiences in my life.
I had to get anaesthetized before the examination and yes, of course, it was scary.
I needed to get some kind of camera stuffed in my stomach where they found something strange about it.
I had a smooth stomach instead of a wrinkled stomach. It was very difficult for me to understand at that time as I was only six years old, though I remember it as if it was yesterday, I still cannot really describe the feeling.
I have stomach problems all the time and it is not fun to live with. The pain never ends. I have trouble going to the restroom certain periods where I only go once a week or usually two. I get medication for my stomach problems but it usually only helps for a little while.
This is sickly emotional for me especially because I told my friends about it. But when I say that the disease is very unusual, they think I brag about it. For me, this disease is nothing to brag about. This is incredibly horrible to live with and I do not want more people to be affected by this disease.
I am grateful that there is such a group like this.
Please spread this group to those who have the same symptoms. Thank you, stay strong.
Sad to hear! I got diagnosed when I was six years old and I had to go through my first gastroenterological examination. Whenever I have extreme craps I usually have to bend my body over and walk like a lion lol but it's really uncomfortable. Please update more to let me know about it. Good luck!
Hi my daughter is 9 years old. she has collagen gastritis .we live in sweden also .hon is really sorry. can i take a mail from you and give with each other experience about illness.
Check your private message box 😉
In reply to dpesola12 I am sorry to hear you too have been diagnosed with CG. Note you had large bleed from ulcer in 2006 and diagnosed 2010. What are your symptoms now and have you had any further bleeds since 15years of age?
Do you have to take medication to prevent inflammation in stomach.
Please make further post.
My grandson has been diagnosed with Collagenous Gastritis and we have been unable to find a physician willing to treat it. Can you please share any information that might help. He is 21 y.o. and hurts every day
Please don't despair. My daughter is 19 and was diagnosed when she was 12. She has been to some of the best gastroenterologists in the Charlotte, NC area and hey didn't really know what to do either but helped as much as possible. She was in the hospital 4 times for blood transfusions because of severe stomach bleeds. She is in college now and doing well, but on meds to prevent stomach bleeding but is not experiencing pain, thankfully. I've heard others rave over CBD oil for pain. I just started using RSHO Gold Hemp Oil for my own pain and it seems to be helping. It's expensive, but I've heard others says it has a lasting effect even after stopping. Worth experimenting with it. There are other good brands out there as well, but all of it is pricy. I know you hurt for your grandson and hope this forum helps with ideas and encouragement. One thing that helped my daughter was eliminating gluten, dairy, and sugar from her diet. And the things we all should be doing, exercising, enjoying life, fresh air and sunshine, and a community of loving friends and family have had tremendous benefits. If you haven't already done so, check out the Collagenous Gastritis Group Facebook Page: https://www.facebook.com/groups/1516927688436167/permalink/1952087654920166/. It has lots of information, encouragement, and ideas. Grandparents are amazing and your prayers will avail much I'm sure.
That is good your daughter is managing CG condition. I would be interested to know the name of medication she is taking to reduce stomach bleeding. I am on Budesonide but if there is an alternative medication with less side effects I would like to know.
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