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
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?
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@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.
Liked by Mindi
himy dagther hav C G she is 9 year.she only take omperazol .she always have pain.There is someone who can help me.
Liked by Teresa, Volunteer Mentor
Maria, there is a facebook group now. Collagenous Gastritis Discussion Group. Very helpful.
@elsanio Hello Maria:
I'm glad you posted on Connect. I see that you are a new Member, welcome! I am a volunteer mentor on Connect and I was wondering how your daughter's CG was diagnosed?
I found a Youtube video made by a specialist at Mayo Clinic about this disorder. You might find it interesting. Here is the link, https://www.youtube.com/watch?v=XY-0Fsv20sw
I appreciate your sharing your daughter's story and I look forward to hearing from you again.
@epvb I was diagnosed a couple years ago with collagenous gastritis (CG) by Dr. Murray and Dr. Acosta at Mayo Clinic, Rochester. It first started in 2013 after a stressful period i was experiencing heartburn all the time and anemia – i had an endoscopy, and they didn’t see anything. Then, I had a massive GI bleed (hematemesis + melena). I was hospitalized for about 2 weeks and had a transfusion, and they did a bunch of endoscopies and just assumed I had regular case of bad gastritis. After that, i stopped eating or digesting anything that could make my gastritis worse, but I unfortunately had a second bleed in 2014, and that’s when they finally found out about my CG. I contacted Joseph Murray at Mayo and they gave me budesonide to take twice a day. Although it has been helpful since then, I’m having a rebound of symptoms just recently, so I’m looking to connect with people to see what worked for them. I’m wondering if one day they’ll find the root cause (like they did with celiac). A lot of the definitions/profiles of collagenous gastritis don’t really fit my experience, so I’m curious to see what other people have been through.
hello.do you know for CG?my doghter is CG.she only is 9 years.tank you if you information.
I am no longer on Facebook due to privacy breach. Therefore I cannot access FB page.
If any useful information is put up on FB page concerning CG I hope it can also be posted on MayoConnect.
Thanks for update. My son just started Busbar…we wil see. Nothing good to report so far.
@kellye5. I hope that helps your son. busbar…. what is it. Is that same as Budesonide?
Anti anxiety…it is the second one we will have tried and of course he takes the prescription anti nausea meds daily. His Vit D is very low and he is weak and very tired but not anemic. It is a monsterous disease for anyone but especially for a young person.
I totally agree with you. Is not easy living with this disease.
I would sincerely encourage you to take a look at the link for the clinical trial that John provided…
Clinical trial that includes collagenous gastritis at Mayo Clinic Rochester. Here is a link to the overview and contact information:
I’ve copied an overview of the clinical trial for your convenience:
“The purpose of this study is to develop a resource (bank) of biospecimens (blood, tissue, stool) and data collected from individuals with known or suspected gluten enteropathy, including celiac disease (CD) and dermatitis herpetiformis (DH). Other enteropathies will also be included: collagenous sprue, idiopathic sprue, lymphocytic enterocolitis, idiopathic enteropathies, collagenous gastritis, Whipple’s disease, and other miscellaneous inflammatory disorders of the small intestine. This resource will be invaluable in answering the important questions outlined above and other future unanswered questions.”
Should you wish to seek a second opinion at Mayo Clinic, you could also contact gastroenterologist Dr. Joseph Murray directly via email. Please let us know if you have any questions – I realize that this is frightening and that you’re doing all that you can. We’re here to help.
Are we able to communicate with Mayo before our appointments? @kanaazpereira
Hello @epvb and welcome to Mayo Connect. We are happy to have you join our online patient support group. I’m sorry to hear of this rare diagnosis. I hope that you are coping well with it. If you will, please share with us a little about this rare disorder. We would be interested in knowing more about collagenous gastritis, such as how is it diagnosed, what the symptoms are and what kind of treatments are used. As we all share information, we learn from each other and also gain support. We look forward to getting to know you better! Teresa
Hi, my daughter was diagnosed with CG in 2012 when she was 12 years old. She is the poster child for stomach bleeds and has had multiple blood transfusions until she was prescribed Octreotide (Sandostatin) LAR Depot monthly shots, which recently our insurance changed to Lanreotide (Somatuline) LAR depot, which so far has had the same positive effect. We've changed her diet over the years, could be better but she is now 19 years old and in college. She's pretty careful what she eats, avoids gluten like the plague, but loves her red meat (grass fed beef mostly), limits dairy and has an occasional sugary treat. She still struggles with nausea, especially motion sensitivity. But since she's been super active in school, running and rock-wall climbing, she'd getting stronger. I'm hoping she will out grow this disease soon. I've been researching this since she was diagnosed and hope to see more helpful info out there.
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Hi my daughter hav diagnosed with CG in 2014 when she waz 5 years old .But the doctor diagnosed it eight months ago with gastro copy; they did not give us any solutions. She only uses 40 mg omeperazol . She is always painful. We are very sad because there is nothing that can help us. Do you have any experience with this disease? For help my daughter.
I'm so sorry your daughter was diagnosed with CG, and at such a young age. But being so young, you might have better success training her to eat differently It was difficult to get a 12-year old off sugar and eat healthier as her habits were more established. But my daughter didn't have much pain, some discomfort and nausea, but her worst symptom was really bad stomach bleeds which required hospitalizations 4 times and 7 emergency room visits starting when she was 12 years old. She is 19 now and in college. I can only tell you what has helped her and it has been quite a journey. We started by changing her diet: no gluten or wheat, or dairy (she does occasionally have yogurt and ice cream). We've greatly reduced the amount of sugar in her diet as well. I started cooking lots of fresh food, real food, mostly organic, not processed. Organic white rice, not brown, brown is harder to digest. As for Omeprazole, I do not like long term use of it; everything I've read says long term use can have serious side effects, you can do some research on that; she also was on 40 mg a day, so I asked the doctor to give her 20 mg, so she could take two a day if she thought she needed it. We started gradually reducing the Omeprazole, it's a slow process since there is a rebound effect going off of this drug all at once. I’d get advice from your doctor about this. She is now taking 10 mg every morning which I believe is more of a placebo effect but she thinks it helps. It took months to get to this small dose. As for the stomach bleeds, she is on a drug which is an injection every month called Octreotide (Sandostatin). Your daughter may not have this symptom so this would not be necessary for you to explore this option. Here’s a review of alternatives we've tried, some she liked, others not so much. Freshly made organic bone broth (beef or chicken). Lots of curcumin (tumeric), good quality fish oil. Probiotics. Iron supplements were short term as loss of blood caused anemia. Basically a health diet anyone could benefit from. Stress has also been trigger for her. She takes ginger candy for motion sickness, I usually suggest she sit in the front seat because of that. We bought an Alpha-Stim device ($700) which relaxes her when she needs it. It’s a really cool device, small easy to take to college, I use it too when she’s home. Also, our church has been praying for her. She is learning to manage her stress level in college, eat the best she can, get lots of sunshine, good exercise, have fun, enjoy life. Our hope is she will outgrow CG. She believes the Lord has used these experiences to lead her into the field of nursing, specifically, pediatric nursing. So she starts her second year of nursing school in the fall. I hope this encourages you. I will be praying for your daughter.
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