Mayo Clinic Connect
I was recently diagnosed with collagenous gastritis which is very rate. I’m looking for anyone else who has similar diagnosis.
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I wanted to mention that you may also wish to view videos and posts by Mayo Clinic gastroenterologists on the "Gastroenterology & GI Surgery Page" on Connect: https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/
Here are two, about the impact of 'Specific Diets' on inflammatory bowel disease (IBD), celiac disease, and related conditions:
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Welcome to Connect, @sbch. Thank you so much for sharing some great insights and information. Sorry to learn about your daughter, but glad that she has found success with dexilant. In fact, @jwicks also posted about a similar outcome with dexilant.
I'd also like to mention that the Gastroenterology & GI Surgery Page on Connect, has some very informative videos by Mayo Clinic experts on a celiac disease and IBD (Crohn's and ulcerative colitis): https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/
So what are the next steps for your daughter, @sbch?
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Next steps: as far as we can tell she will stay on dexilant, never touch alcohol and rarely caffeine, and just keep eating. She began as a late pediatric case and is now transitioning past pediatric so we can expect changes at some point, but she is still with the same doctor, a pediatric gastroenterologist who seems to know more about this and related conditions that most do.
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@sbch – I agree with you on how you are classifying this. My other child is not celiac but can have very little gluten. Otherwise, she will have stomach cramps and throw up. I tell people it’s crohn’s of the stomach. Seems to be the only way others understand. I almost look forward to my son aging out of pediatric gi. We live in a big city but the pediatric gi’s know very little about cg.
@wendy2001 When the stomach does not process the nutrients you can feel tired. i tried the high dose of vitamin d and it made all my muscles ache much like the flu. Now I take a multivitamin that has 600 IU of d3. I also take a 400 IU d3 gel pearl and am on the low range still. I tried increasing and the muscle aches come. My calcium is fine, but magnesium was low too. My family dr does not check it unless I ask. It is best to get vitamins from food but vitamin d is about impossible to get enough from food and sun. I had a discussion with a dietician one time, but I have seversl stomach issues. Some require high fiber and some low fiber and I require soft, easily digestable foods. I left with “just do the best you can”. Some days I can eat something and the next time it won't go down or makes me nauseous. Just have to keep trying best I can. Many have an iron deficiency and iron in vitamin form or by infusion is needed. Energy can also be gained by simply moving more. Walking is excellent… even if they are 5-10 minute walks several times a day.
He has taken 600 of D and fe long lasting. They both help some.
To those of you who may not be aware there is a video on You Tube with Dr Joe Murray talking about Collagenous Gastritis. It is only few minutes long and posted just six days ago.
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Here's Dr. Joe Murray's latest video on Collagenous Gastritis.
Collagenous Gastritis – YouTube
@johnbishop My son and I are at Mayo waiting for our first of 4 app. for today. I cannot open the video here but look forward to watching. Thanks to this group we are here and hope for something as he continues to become more symptomatic. Thanks to you all.
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HI @kellye5, thank you for the post. Hoping the Mayo doctor team will find some answers for you soon and come up with a treatment. If possible can you give us an update after the appointments are finished? I'm so happy the weather warmed up for you this week. You picked a good week for the appointments.
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@kellye5 I am sure I speak as a group. We are so happy you are there today as well. May you be in the best hands… May the Drs. have the wisdom. You are in our thoughts today and always. Thank you for sharing that you are at your appointments today. I hope it is not too cold…
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I am very interested in what Dr. Murray will recommend for you. As you may recall, I had an appointment with him in January. I would be happy to compare notes and medications and share my experiences with you when you know more. I continue to be hopeful that the medications will work for me soon. Best of luck today.
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We are stressed out as about 8 more tests have been added…my son is a wreck. Would love to compare notes. Thank you all.
I would be very interested to know tests ordered so I can perhaps discuss with my Specialist Thankyou
@kellye5 I have had numerous tests over the last year and a half and I would be glad to honestly share my experiences with the tests that could benefit your son. If you want to provide me with test names I can provide you with info over a personal message. Not only have I only seen GI at mayo but I have seen many other departments there as well but none of the others have provided useful information
Thanks so much. There are so many as they are looking for something in addition to CG.MRI with contrast. endoscopy camera pill, gastric emptying, another colonoscopy and endoscopy, reg blood and urine tests, nephro logy, a few more. Thanks for your advice.
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