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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.
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.
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@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.
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.
@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.
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.
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?
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