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I was recently diagnosed with collagenous gastritis which is very rate. I’m looking for anyone else who has similar diagnosis.
Hi, Here is my story. My daughter now 12 was diagnosed in October 2017. A year after a emergency blood transfusion in Dec 2016. She is on 120mgomeprazole & iron since then. She is now gluten free and we find that helps. She has low bone density. History of family auto -immune alapecia, hasimotos. I was ill during pregnancy and she was admitted to hospital with cellulitis age 6 (suggested link to strep and strong antibiotics) and again with influenza A 5 years ago, a series of injuries, knee, ankle, neck, finger, hand. Lives with pain very well, is an inspiration. I just wish we knew more and there was an alternative to omeprazole with Osteoporosis risk. what is the cause and how can we help. lost for step to take to help her and the unknown of her future health worries us both. I am reading all posts and compiling info, on symptoms, medicine (live in Australia – originally Scottish – unsure if medication and treatment available in US also on offer here) and any links. Has anyone else done similar how can we share and learn in a better organised way than one bug long chat stream. Keen to support, learn and share. Sending happy thoughts. We were relieved it wasn’t chrons and had prepared ourselves for this worst, so happy i have a 12 year old started high school, outwardly happy and healthy.
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This has been a very informative discussion thanks Colleen, John and jjdenaro.
There are some, for various reasons, that do not wish to become members of Facebook. Those sufferers would miss out on all info on CG Facebook page plus page would miss out on their input. Could separate what few CG sufferers there are.
I like anonymity of Mayo Connect. It does concern me that with so few of us with rare disease makes it easier to be identified.
Rather than a Facebook page I would like to see an International Registry for CG set up. A Registry where once CG positively diagnosed by Gastroenterologist the information is sent to Registry.
Any thoughts on this.
Would this be worth asking Mayo Gastro’s (Dr Joe Murray) their thoughts on this.
Unfortunately we aren’t able to give a physician’s contact information on Connect, but in the meantime, I sincerely encourage you to share your concerns with the Connect community; perhaps fellow members can help answer some questions? A few have consulted or will be consulting with Dr. Murray, and I’m confident they would be happy to share their insights.
May I ask, what concerns you the most @jng123?
@jng123 @llg90210 My daughter is seen by I call her team of Drs. I include in this team her amazing holistic Dr. (chiropractic & nutrition) Dr Sherr. This form of treatment is to help support her overall health and nutrition and immune system
~ chiropractic adjustments. Cranial massage therapy. Nutritional supplements. Including vitamins fatty oils omega 3’s
Holistic Dr,s are great because they have an addition perspective to offer.
If you are asking for exactly what she receives as a nutritional supplement. Please advise.
All is good.
No – thank you for sharing, you very quickly loose any embarrassment or squeamishness supporting daughter with GC. It is hard to know what to do for the best for her.
New patient to this list. Incidents with my daughter beginning two years ago, aged 16, led to diagnosis. She had been suffering anemia, significant weight loss, and stomach aches. Eventually vomited, which caused Weiss-Mallory tear (where esophagus meets stomach), which caused massive blood loss. First diagnosed with H Pylori and put on antibiotics and iron supplement. A second round of symptoms and incident led to a battery of tests (endoscopy, colonoscopy, MRI etc.) and a new diagnosis: CG. Now she is on dexilant (proton pump inhibitor that reduces stomach acid), iron supplements, no dietary restrictions, has lots of dairy protein-rich smoothies, and is doing much better. Research papers show CG to be an autoimmune disease in which the stomach lining thickens, resists absorbing food esp. iron, and becomes very inflamed. It seems similar to other autoimmune diseases that affect digestion and may be linked with them. In fact, we have a son with celiac, cousins with celiac, and a brother with Crohn's. There seem to be differences in cases reported between adult and children. I linked a review article.
collagenous gastritis WJGE 2015 (collagenous-gastritis-WJGE-2015.pdf)
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?
Hi. I have a 17 yr old son that was diagnosed with collagenous gastritis 2 yrs ago. He had no pain but totally exhausted and no energy, lots of nausea, felt sick all of the time. We went to mass general in Boston. Dr Winter is one of the only doctors that has done research on it. My son could not take steroids or supplements. Just made him sick. We have done a lot with nutrition. Going off gluten, dairy, egg, soy helped the stomach stop bleeding. Now we are doing GAPS which is similar to specific carbohydrate diet. Basically you are eating easily digestible foods. He hasn’t been able to absorb nutrients. We have also had a great psychologist. Would be happy to discuss.
@wendy2001, I am a 20 year old who was diagnosed about 1 1/2 years ago. I have tried many steroids and other medications but have not improved. I am being treated at Mayo Clinic. I have not found any foods which aggravate my symptoms; they occur without warning even with simple foods. I have tried gluten free but found no improvement. I am not familiar with the GAPS diet. I wish you luck with it and am interested to hear how he does with it. I find it amazing that people can be diagnosed with the same condition yet have such different symptoms. I feel sick a lot of the time as well; stomach upset, pressure along digestive tract and heartburn. I also have periods of extreme exhaustion and loss of energy. Have you found anything that helps the weakness and lack of energy?
Believe it or not, Ritalin gives him a jump. He only takes short acting which lasts 4ish hrs. Anything longer acting makes him sick. I’m treating this like an autoimmune in terms of nutrition. It took over 9 mths of change in nutrition to stop the bleeding through to the stool. Please keep me posted. I don’t know how to get notified of responses on. Other issues seem to come with this. He also has Hashimoto thyroid.
@wendy2001 Have you had your Vitamin d, magnesium, calcium, iron, b12, etc checked. At one time I had 0 vitamin d and other vitamins low. It is a hormone that helps us absorb many vitamins and minerals. Everyone is different and will have different symptoms for the same medical issues. I take a daily children's chewable vitamin.. a bit cheaper than adult and does the same. Chewable or liquid will absorb better when you have a stomach that does not work well.
Did you see my reply? Now I don’t see it?
Yes at one point his vit d was at a 1
Hi Wendy, your reply was blocked because your email address was included in your reply. Connect is a public website, so we recommend that you don't share personal contact information like phone numbers, email or mailing address. Do you mind posting your reply to Zaroga again?
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