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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That is good your daughter is managing CG condition. I would be interested to know the name of medication she is taking to reduce stomach bleeding. I am on Budesonide but if there is an alternative medication with less side effects I would like to know.
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Hi Mindi, my son has been prescribed Budesonide and he hasn't started taking it yet as I was concerned about what the side effects would be. What has been your experience with Budesonide?
Sorry to hear bout your son.
His CG condition must be reasonably severe then if Budesonide has been prescribed. From what I can make out from this Forum there does not seem many of us taking Budesonide. Some seem to be taking just a proton pump inhibitor, such as Omeprazole, and maybe Iron supplements .
Of course I can’t be sure as members don’t always provide a lot of detail of the medications they are taking.
My own experience is that Budesonide seems to be helping my stomach and reducing chances of it bleeding.
It does seem to be keeping me more comfortable as prior to Budesonide I would often get stomach pain. I also take Omeprazole so that would be helping.
I have not to date had any problems with Budesonide. However, I certainly worry about the long term implications of taking this medication as it is a type of cortisone. Unfortunately I have no option and have to weigh up benefits of taking it over not taking.
I hope that’s helpful.
What sort of symptoms has your son had?
Hi Mindi, his symptoms are really mild. No gastric pain at all. We were only able to reach his diagnosis after a gastroscopy. His symptoms were just anaemia related which is now under control. I'm really hesitant to treat him with all these drugs when he is currently symptom free. My fear is that he may get worse though, if we don't try something. Its a real challenge to know what is the right thing to do.
Hello motherkat. That is good your son has no pain. Was the anaemia caused then by low level bleeding from stomach wall?
Has the specialist put him on any other medication to try first?
I was initially just on Omeprazole to reduce acid in stomach plus iron to replenish iron stores.
After very large bleeds had to start Budesonide.
If you unsure why not talk to Specialist again or seek a second opinion. Seems though as disease so rare very few gastroenterologists have treated CG. Did your sons gastroenterologist diagnose on first Gastroscopy? If so he/she must have viewed condition before.
Thanks for sharing your experiences and knowledge about this rare disease . My daughter 13 yrs age was diagnosed with similar condition with only complain of asympomatic iron deficiency anemia /Hashimoto Thyroiditis 9 months back . Her haemoglobin was 6 with low Ferritin level in the blood which was not responding adequately with oral iron supplement . Strangely The non specific marker for coeliac disease (Anti Gliadin AB ) was positive but specifc markers ( Anti endomysial /Anti TTG ) were negative . Am not seeing anyone commenting on such findings . Any idea where I can get more information about this . Appreciate if you can share the doctor in Mayo clinic e mail ID that I can discuss the findings with .
Best wishes and pray for your recovery .
Hello @littleangel Sorry to hear your 13 year old daughter has been diagnosed. You say a similar condition so is it Collagenous Gastritis or does it have a different name?
I was around 13 when I had my first blood test as I looked pale and anaemic. My Hb was 8 but my Ferretin was only 4. I was still playing sport with no problems totally unaware there was a problem. At that point I was put on oral iron.
It was about two years later finally had Gastroscopy and diagnosed with CG.
When I was found to be anaemic at 13 years they did blood test to check for Cealiac Disease but was negative.
When I finally had Gastroscopy, followed by many more Gastroscopies, I had tissue biopsy checked. I have always been negative so Specialist has never advised me to avoid gluten. Sorry I don’t know name of tests I had done but I believe the tissue biopsy via Gastroscopy is the definitive test to diagnose Cealic Disease.
Has your daughter had Gastroscopy and tissue sample done?
I cannot help you with email contact for Specialist Dr Mayo Clinic. This would be Dr Joe Murray no doubt. Did you see the two videos he has posted on You Tube about CG? They are included earlier date Mayo Connect so if you go back should find.
Perhaps one of the other members or a Moderator could assist you with how to contact him. However, im not sure who the Moderators are on this page this year.
Please post again as interested to know if your daughters condition is CG or something similar.
I was diagnosed w/ CG December 2018…..i am 37. I am on ppi- nexium daily. Have had stomach pain, acid and IBS for years. On and off iron deficiency. Had iron infusion in December x 2. I did a 6 week pulse of budesonide liquid twice a day. Tried a gluten free diet for 6 weeks after that. It was missed with the first EGD 2 years ago but with severe iron deficiency, weight loss and pain they took another look. The 6 week pulse was in dec/January and now I’m starting to feel pretty bad again. Wondering if another round would calm it down.
My grandson has been diagnosed with Collagenous Gastritis and we have been unable to find a physician willing to treat it. Can you please share any information that might help. He is 21 y.o. and hurts every day
Where do you live?
My husband was diagnosed with collagenous gastritis and microscopic collagenous colitis. A colonoscopy and an endoscopy confirmed the results. He is being treated with budesonide, sucralfate, omeprazole, and lomotil. My husband is 72 years old, his symptoms for two months were extreme diarrhea, and weight loss with blood in his stool. He has always had a healthy diet. This illness has stopped him from working and fear of being too
far from home. It has changed our life. The affect of the drug treatment and change of diet has been positive, he is weaning himself off the lomotil, has gained back 2 pounds. It came out of the blue, we are adjusting.
I have been diagnosed with CG since I was 16 back around 2006. Even less was known back then and I was never sure if that doctor was correct since all I got was that the cause was unknown and it was incurable. I recently was diagnosed a second time with CG again after my symptoms worsened last year by a completely different doctor in a different state so I am pretty confident that the diagnosis is correct this time around. I created a facebook group hoping to find others who also have CG since I have no idea what to do or who to turn to right now. I would love to hear about people's experiences and any information you have been able to gather such as any dietary restrictions that might help although I have always been pretty skeptical about diets in general. https://www.facebook.com/groups/329342427780506/
Hello, sorry for the late response. I was actually taking Protonix, but stopped about 3 years ago because of long-term side effects. I've found that diet has been the most helpful way of dealing with it. I stay away from high-fat/greasy, high-acidic, and gluten. I have had nearly no pain since changing my diet. I stay away from fast food and even restaurants all together, as I normally get flare-up's after eating there. I hope that helps!
I have a 17 year old that was diagnosed over two years ago. We also went to several doctors. There is no one protocol that works. The only thing we are having success with is nutrition. My son is on the GAPS diet. It is similar to SCD which some Mayo Clinic doctors recommend for Crohn's patients. GAPS is like second generation SCD. It is very slow healing and our practitioner says it will take about two years. Feel free to reach out privately.
Hello, I wanted to know how your child is doing
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Welcome to Connect; thank you so much for sharing you story. In reply to your earlier question about the study, here is the link: http://www.mayo.edu/research/clinical-trials/cls-20314533?_ga=1.105687232.292424276.1484505519
I’ve also 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.”
I’d encourage you to view the recently launched Gastroenterology & GI Surgery Page on Connect, https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/ where you will find a wealth of information, especially with regard to the link between our gut bacteria and digestive health.
In the meantime, I hope @epvb @sodonnell, @shosh37 @kacolton @ibrown51484 @mindi will also join this discussion with their insights.
Find your list of interests interesting and I'll explain why, so for all you patients out there suffering and I know there are many and you can't seem to figure out why your not getting better and the meds let's face it most of them cause more issues then they resolve while your docs ignore you, get nasty with you offer you a psychologist to drug you up some more so you can suffer worsening effects. Fact is I don't really believe doctors care because if they really did care first of all they wouldn't be pushing all of out their doors unless say they need that guinea pig experiment where God forbid you wind up with more issues (as I did) then you get passed around and once they are sick of seeing you they let the police brutalize you sick on the ground and don't care when they smash your face from dropping you as "your faking it." Yes life is lovely folks when medical facilities like Mayo who pride them self in the best care you are never going to receive cause they use us folks that's why you now show your id's at the door and you have your nice little file they pass around on you so if you are the experiment, that's all you'll be and fat chance of actually getting care because here's the deal folks. All the major clinics are experimenting on the same symptoms, yep interesting isn't folks… Now I'm going to fill you in on why. In 1968 Mr. McCain and Travelers Insurance got together to make a plan with so-called green projects, and they knew that the public would not like that maybe some of these projects might just make the environment and you all sick. See I come from long blood line of agriculture and a little company by the name of Monsanto well they don't like the human population to have control of food, I mean food is power, food is money. So during the great brainwash Clinton era, an ex CEO was head of the food and drug for one reason folks…. power. You see our forefathers knew control of food would create an imbalance in social classes much like our nationalized health care did for our top hospitals which is why everyone is sick and can't figure out why nothing is working anymore. Yeah they thought they had protected it, but we got the shock of a life time folks because while all you sheep out there following the pied piper fell asleep, in came CEO of Monsanto and during this time frame because they were rejected every other attempt, they found a very unique way to slip in the door and take over. They concocted a GMO seedling, see with head in place at FDA very easy guys and they were smart, they found a unique way to patent food, something our forefathers never wanted to see happen and with good reason. So the reason we now have 90% and probably higher in GMO food production was all in the name of business, but there was a slight little problem with this see you don't mess with God's creations although we seem to be doing it by leaps and bounds and now we have doctors not really reporting the vast numbers of you all getting sick a little at a time, what… is something wrong, are you getting tired, stomach swelling, pain? Oh now is your skin reacting cause your liver is on overload and your intestines are getting IBS, Lupus, Lymes, EBV, Mono, Gluten problems? Wake up and to all my doctors out there I know your not being very honest and your drugs only empty my pockets and make me sicker. Fact is our food has issues guys, our water has issues and in the US, unlike some other countries we treat our animals better than our own people. We have crap testing that finds nothing because these are very strategic type of infections that literally over time start to cause havoc in the body and your doctors WILL NOT GIVE YOU ANYTHING THAT WILL HELP YOU, as a matter of fact they rather laugh in the hallways at you and diagnose you with multiple conditions when really you have issues from your food and water and as long as you have to eat, you are NOT going to ever feel better. I will tell what does help and that I know of the only people allowed this treatment are the rich and premium insurance holders which have special fancy facilities the rest of us know nothing about. An IV and oxygen folks with intermittent antibiotic for specific bacteria/fungus (by the way farmers have battle fungus issues for centuries and we ARE eating it)/parasites. Problem is no one in infectious disease or gastrology will say jack about it unless they like you or something then they will run a 3D MRE scan which folks only about 3 in the country and fat chance you will be accepted. Fact is ct and regular MRI won't show a damn thing, 3D MRE well that's a different story, but also concerning is the block we have to obtain our imaging, for all you youngins out there we used to see things and get things on the spot and for a reason, it keeps our doctors honest, but now look at the imaging libraries hospitals have to look through when they don't want you the guinea pig patient to know what is really going on. If you think all your doctors are so honest…. hmmmmm….. well why then can they cut your phone off, and why can they record you but you can't record them. Let me tell you something very real here, your doctors are NOT as honest as they pretend to be and you are suffering because they DO NOT CARE, they care about their own egotistical research, looking good with their peers, they have no regard for the suffering you are in and they laugh and make condescending remarks all the time about you the patient, and when their residency doctors secretly do your surgery when you thought your doctor was doing it and they injure you further don't look for the hospital to care about what happened and you can file with every state agency, federal agency about your patient rights that no one tells you don't exist outside of the paper they hand you. I WANT A REAL DOCTOR!!!!!! Do you hear me???? Your ignorance, your lies, your deceptions, your unethical behavior that you so proudly override your patients concerns all over online today is destroying the lives of your patience and you can sit here on your little talk groups and con some, but you will never con me as I got to see what you are and you intensionally refused me care, refused a surgery that could make my life normal again, refused me the treatments I got better on so you could just toy with me and leave me sick with the ones that brought hell into my world forever. Wake up patients, I swear please get yourself together, all of you sick from toxicities, food, water… start insisting that our doctors and hospitals have to start treating these issues appropriately before you end up with an RX note in your hand waiting for the an ER situation to occur first that could end your life because not one doctors in the US has the guts to do the right things and go in there and fix the problem they created in the first place by ignoring everything that was going wrong for years. This is laziness, greed, unethical and it's good all American Mayo Clinic at it's finest.
Miss Kanaaz….when you want to admit how many of us are rotting from the inside out from the bacteria/fungal/parasites which are at the root of most organisms defaults, in which my country consistently ignores as we all suffer grueling loss of our quality of life… I will listen, but for now the only thing Mayo Clinic did for me was ignore my abusive doctors and then erased me from their system. That is no way to treat any patient who has suffered ten years of declining health cause no one will do an exploratory and fix my damages and now I'm just sitting letting the clock tick waiting for the issue to put in the ER with another agonizing bout of SBO. Shame on all of you and I will NOT apologize to any of you anymore I am sick due to your negligence to treat a simple problem you allowed to grow way out of control and I am tired of hearing your damn excuses. Go experiment on a rat please!
I am so sorry for all that you are going through. You have every right to be upset and agitated. You’ve mentioned many problems and we may not be able to to address all of them right away. But I know this is difficult for you, and I admire your determination to get some explanation. That says a lot about you, and I'm going to try and help you get that explanation – with some help from this incredible community, which I’m so glad you’ve joined. Let's work through this together, step by step.
For most physicians, medicine is a calling, a genuine desire to help people. If they didn’t have that passion or the desire to cure and alleviate suffering, it would not be possible to go through years of rigorous studies, incur huge med. school debt, or work grueling hours. In the midst of all this, dedicating their attention to patients who may be struggling to breathe, or hearts that stop beating, kidneys that fail, lungs that collapse, they often overlook an important responsibility – to establish a relationship built on trust and commitment with their patients.
Anyone in your shoes would be angry – the health care industry seems to have shifted from protecting patients to increasing profit. The landscape for health care policies is changing rapidly, and sometimes tragically – I get it, and it sucks. But, as patients, we also tend to forget that doctors don’t pursue medicine to shape health care policies. We’ve given that responsibility to the people we vote for – many of whom know nothing about health care!
@angrypatient, I do realize what an uphill battle you are facing, not knowing whether or not you can trust your doctors. But I also want you to know that you are not alone in experiencing the frustration of being "dismissed" by your doctors; if there is one thing I've learned from Connect members is that you should never give up until you find the right physician who can help you in the best possible way. I’ve learned that it is okay to feel bad for yourself from time to time and use that as motivation.
As you rightly mentioned, we come across too many frustrating, negative experiences in our health care struggles. Instead of allowing that to disappoint you or render you helpless, let it empower you. Don’t let a bad day or a bad experience become two bad days, then a week, month, year, etc. Improve what you can, and remember that we are all flawed.
Like all hard things, we can either stay passive because being active is difficult and time-consuming. Or we can learn more about what we can do, and then do it. It’s horrible to go through life, feeling hopeless! Lean on your fellow members, so that the problems you are facing can be reframed and prioritized to help you find a solution.
Theodore Roosevelt Jr. said, “People don’t care how much you know until they know how much you care.“
@angrypatient, know that I wish you the best of luck wherever life takes you. You’ve found a very supportive community in Connect, and I want to thank you, sincerely, for sharing your feelings.
In the meantime, what can I do to help you feel understood? How do you think we should proceed to help you find some relief?
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