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 @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
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@emewood, I can really relate to your story. I was diagnosed when I was 18 and I am now 20. I was starting my freshman year in college. I have since left school because it was just too difficult and stressful to be there. I am now taking classes (mostly online) and living at home. My symptoms never included bleeds but I have had discomfort and pain every single day. I have tried many medications/steriods for the collagen and my various symptoms but to date, nothing has helped except for pantoprazole which has kept my heartburn under control for the most part. My GI is firm in believing that food does not play a part in how I am feeling. I cut out fried, spicy, acidic and rich foods 2 years ago and do not drink caffeine. I tried gluten free for a period of time even though I am not celiac. It seems as though you truly believe that a change in diet made an enormous difference. May I ask how long it took with the diet until she felt it was working?
I also get car sick and always sit in the front seat. I had not heard anyone else mention this symptom. Can you recommend a ginger product that she has had luck with?
Also, I have decided, just like your daughter, that I would like to be a pediatric nurse and will be applying to nursing programs this year. Our experiences make us uniquely qualified and I wish her the very best in pursuing this goal.
Liked by wendyt2018
I am so sorry you had to leave school because of your CG symptoms. Most western medicine doctors know very little about nutrition and diet but that is slowly changing for the better. They are good at many other things, such as diagnosing conditions and trauma care. Our gastroenterologist is a little a head of the game in nutrition. He thought it a good idea to go gluten free. Gluten and dairy are two of the most difficult foods to digest, so it made since to make it as easy for the stomach to process. The proton pump inhibitors, such as pantoprazole inhibits absorption some vital nutrients. That's why I worked with her doctor to gradually lower the dose. Here is some info from Life Extension Magazine in the next paragraph but you can research this on your own, and by all means, don't go off of it because of this information, it's just good to have information:
Role of Stomach Acid in Nutrient Absorption
Stomach acid plays an important role in the digestion of your food and nutrients. When the sphincter valve at the end of your esophagus fails to close properly, stomach contents including stomach acid leaks back up into the esophagus, damaging the delicate esophageal lining, causing heartburn. Drugs like Prilosec® inhibit the release of stomach acid and provide some relief. However, the continual reduction of stomach acid through medicines like proton pump inhibitors hinders digestion and absorption of key nutrients.9,10 This ultimately leads to deficiencies in key nutrients, such as vitamin B12, iron, calcium, magnesium, folic acid, and zinc.11 Due to the alteration in pH balance in your gut, the absorption of other nutrients is possibly at risk as well. Proton pump inhibitors not only block the release of stomach acid but also something else called “intrinsic factor,” making it impossible to absorb vitamin B12. The inhibition of dietary iron can contribute to anemia over a long period of time. It’s well known that calcium is best absorbed in the presence of acid.Proton pump inhibitors are thought to inhibit active transport of magnesium in the intestine, leading to deficiencies and potentially serious health outcomes. Your absorption of folic acid is inhibited, disrupting the production of new cells, which helps your body grow and repair itself. The absorption of zinc is impaired, which is needed for many enzyme reactions in the body. It is evident that the lack of stomach acid has far-reaching effects that extend well beyond the digestive system. You can offset these damaging effects by supplementing to provide some protection against these deficiencies. Consider talking to your doctor and at the very least take a blood test (Complete Blood Count, Comprehensive Metabolic Panel) to check for nutrient deficiencies.
Having reported all that, CG is such a mysterious condition, PPIs may just be necessary. My daughter is doing fine on 10 mg a day for now, which her doctor calls a "baby dose." She is currently flying back from a medical mission trip from Tanzania and says the prescription drug Zofran (Ondansetron) has been a life saver for nausea. (It's a drug usually prescribed for nausea from chemotherapy, so you know it's strong. We asked the doctor to prescribe it for her trip. It took a leap of faith for me to let her go on this trip. She also keeps Zofran on hand for school but doesn't need it often. Any kind of ginger candies are good, gin-gins, sugared dehydrated ginger, Trader Joe's has a selection. There are all kinds of alternative as well, supplements to sooth the stomach with declycerized licorice, slippery elm, etc. Tumeric supplements are wonderful for inflammation. Kombuch or KeVita probiotic drinks are really good. If you can learn to like it, fermented veggies like sauerkraut, not the kind on the unrefrigerated shelf at the grocery store which has been pasturized killing the good stuff, but the kind you make yourself or buy in the refrigerated section of Earth Fare, Whole Foods, or Fresh Market, it has live probitiocs in it. Anything good for the gut should help people with CG. Eliminating caffeine was a good move on your part.
What has really helped her is to know her body, develop a "tool box" for her health which you will have to custom make for yourself. Keep a journal of what you eat, do, and how you feel and adjust accordingly. I notice when she's not feeling well she goes for chicken bone broth (the boxed kind) and white rice. When she's home we watch fun videos, LOTR, Marvel movies, fun stuff. She doesn't have time to watch movies in school, too busy. There she listens to her favorite music, tries to keep her stress level down, which is hard in nursing school. She prays a lot and reads her Bible, that helps. And you are so right, experiences make us uniquely qualified for the plan God has laid out for us. You will be a wonderful nurse because of this, so compassionate, and that is of utmost importance. Praying for you, your health and your future.
Liked by wendy2001, wendyt2018
I'm truly sorry to hear about your daughter. Managing a chronic condition is a journey, but you don’t have to do it alone – and I'm glad you've joined Connect. Unfortunately, because collagenous gastritis (CG) is rare and its cause is unknown, there is no definite cure. The treatment options include prednisone, budesonide, sucralfate, ranitidine, mesalamine, elimination of gluten, loperamide and cholestyramine. https://rarediseases.info.nih.gov/diseases/10961/collagenous-gastritis
I sincerely encourage you to view this video where Mayo Clinic's Dr. Joseph Murray explains a few details about CG:
I'm tagging @jdav @kellye5 @buckeyeliz @jwicks @wendy2001 as all of them have kids who are struggling with this condition; I hope they return to share more information with you.
Does your daughter follow a special diet? Since the omeprazole does not provide much relief, have you asked the doctor to prescribe something stronger? With one of the largest group of digestive disease specialists in the world, Mayo Clinic has been recognized as the nation's best Gastroenterology & GI Surgery hospital by U.S. News & World Report. I realize that you live in Sweden, @elsanio; would you perhaps consider traveling to Mayo Clinic in Minnesota?
Liked by John, Volunteer Mentor, wendyt2018
Our 15 year old daughter was just diagnosed today with CG (confirmed by results from multiple biopsies from her endoscopy last week)… I read her @guaranlam, Aug 24, 2017, post- "Tough to wake up, throw up, then be ready for the day", and she said, "Yep, that's me!"
She's been severely nauseous, made worse with movement- more especially in the morning, vomiting, and abdominal pain for just over 8 weeks now. EVERY DAY! So appreciate you taking the time to comment and share you struggles/challenges. Going to read more!
Liked by Colleen Young, Connect Director
There is a facebook group call collagenous gastritis. Please join. My 17 yr old son has cg but no throwing up – just fatigue.Very thin and hard to gain weight. Very hard to deal with.
Liked by Teresa, Volunteer Mentor, wendyt2018, alison486
@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.
It appears a year has past since you posted this. So sorry for your daughter, we know exactly what she's going through. Our 15 year old daughter was just diagnosed this week with CG (confirmed by results from multiple biopsies from her endoscopy last week)… I read her @guaranlam, Aug 24, 2017, post- "Tough to wake up, throw up, then be ready for the day", and she said, "Yep, that's me!"
She's been severely nauseous, made worse with movement- more especially in the morning, vomiting- almost daily (sometimes a couple times), and abdominal pain for 9 weeks today. Her life has changed from how she knew it! Augh!
We're in the Portland, Oregon, area and were able to find a super Peds GI doctor with tons of compassion, and we are hopeful with his direction.
We were wondering 2 things- what your daughter has done this past year, and what she's feeling like now. Please let us know. I agree that we should all work/talk together for each other! Maybe you started a personal patient study/survey- we'd love to join. 🙂
Went in to doctor today for our 15 year old daughter who was just diagnosed this week with CG (confirmed by results from multiple biopsies from her endoscopy last week).
She's been severely nauseous, made worse with movement- more especially in the morning, vomiting, and abdominal pain for 9 weeks today. EVERY DAY is a challenge to get out of bed, gag and gag, sometimes throw-up and sometimes just go back to bed. Nausea and pain in the abdomen last all throughout the day. Like a switch flipped in her body 9 LONG weeks ago today.
We live in the Portland, Oregon, area. We would very much like to know if there are any clinical studies done for CG for pediatrics. We have spoken with the Mayo Clinic in Minnesota and they told us of only studies for adults. That doesn't make much sense. Please let us know. 🙂
Thank you for sharing your stories. My 14 year old son was recently diagnosed with Collagenous Gastritis and we are currently fielding our way through a lot of information with not very much clarity on how to treat. Fortunately my son does not have severe symptoms except for ongoing illness due to iron deficiency. Since having an iron infusion, we have started a gluten free, dairy free diet but have had little support from our gastroenterologist in terms of dietary recommendations or management plan beyond proton inhibitors. I am keen to hear of any other suggestions and possible outcomes from anyone.
Liked by Mindi
My son is on the GAPS diet and we are working with a GAPS practicioner. After trying different meds that didn't work, we opted for this route. It's the only thing that has helped. Very slow but steady improvement. Our practioner said it would take about two years to undo the damage. It has been 8 months and we are very happy.
There much first hand information from mostly the moms of children with CG on this facebook link: https://www.facebook.com/search/top/?q=collagenous%20gastritis%20discussion%20group, myself included.
Liked by John, Volunteer Mentor, Teresa, Volunteer Mentor, alison486
Hi i am in the UK and my daughter was diagnosed with this when she was 13. We don't know of any other uk paediatric cases and even our doctors haven't met any adults even with it (we are lucky enough to attend one of the best in the uk). Do any of you have children with this please who would like to share information? Thank you Alison.
Hello Allison, @alison486, and welcome to Mayo Connect,
I am sorry to hear that you daughter is ill with Collagenous Gastritis (CG), while I don't have that disorder myself, I have a lot of digestive tract problems and I understand how difficult they can be. Such as appetite problems, weight loss, etc.
We do have a number of Members who have discussed their children who have CG. I will ask a moderator (@colleenyoung, @kanaazpereira or @lisalucier) to move your post to the discussion of Collagenous Gastritis. Until then you can read about others with CG at this link, https://connect.mayoclinic.org/discussion/collagenous-gastritis/?orderby=DESC#chv4-comment-stream-header
In this discussion group you can meet @motherkat, @wendyt2018 and others who have recently posted about children, like your daughter, with CG.
If you are comfortable sharing more, could you tell us about your daughter's most difficult symptoms right now?
Liked by alison486
Thank you it is good to hear there are others. To our knowledge H is the only child in the uk with it. She has had it for 5 years starting with severe symptoms of anaemia and progressing to acute sudden bout of vomiting violently with severe blood loss every 9-12 months. Luckily she is pretty stable now but it would be lovely to hear that hopefully she will grow out it maybe fingers crossed. So little is known about it here. A
Liked by Teresa, Volunteer Mentor
I hope that your daughter does well, @alison486. How is she currently being treated for this disorder? Any meds or diet suggestions?
Here is a video about CG from a Mayo Clinic doctor about this disorder, I thought that you would find it interesting.
omg this is brilliant thank you. How wonderful to actually hear from someone with some exposure to it. 🙂
Liked by Colleen Young, Connect Director, Kanaaz Pereira, Connect Moderator, kellye5
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