Collagenous Gastritis

Dear @angrypatient,

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?

It looks like there has not been any action on this thread for some time. I am also diagnosed with Collagenous Gastritis and I found reading this thread helpful in making me feel like others understand. Thank you all for that.

I have Microscopic Colitis. I think it's the same as Collagenous gastriis or Colitis. GI specialists want to give you a drug. I say NO! Steroids are a NO NO! These medications don't work. What does work is DIET! I've had silent Celiac Disease all my life. My stomach would bloat as a wee tot or stress, but no diarrhea. Diet is the only answer. My God Send is Wayne Persky's site - Microscopic Colitis. Not everything is a PILL! DIET CHANGE IS THE ANSWER. Plus Dr. Fine can do a stool sample of what makes you sick. He's has his own lab and helped many to inform sufferers what not to eat. DIET!!!!!!

@oakbourne - it’s tough living with 2 autoimmune GI diseases. I have had collagenous/ microscopic colitis plus other diffuse GI autoimmune disease. The colitis kept me close to my bathroom for weeks. It was treated with methotrexate injections.
The other diffuse disease waxed and waned for years- responded to steroids briefly, but decided to try a immunosuppressant. After several months I had to stop, but I have been fine since.
Celiac disease is tough- strict diet control. I have 2 daughters in their 30s who recently developed celiac disease. Still trial and error. Complicated by true food allergies, also recent.
Collagenous gastritis is related to colitis, but there is no definite cure/ treatment as far as I know.

Also seems like collagenous gastritis doesn't come by itself. My 18 yr old also has dysautonomia/POTs and thyroid issues. Diet has helped tremendously but not the cure all.

@wendy2001 - May I ask what diet works best for your son?

We are doing GAPS which is similar to SCD - Specific Carbohydrate diet. Mayo Clinic talks about SCD for crohn's patients. That's why we decided to try it.

I too, have several autoimmune diseases. Type 1 Diabetes, Boop Pneumonia, now Microscopic Colitis. I'm going to the doctor today to get on Cholestyramine. It's a bile sequester binder. I had my gall bladder removed in 2000, and now the signs and symptoms of bile piling into my gut is horrendous. I wear diapers and can't leave the house. This is not an autoimmune response. Just watery diarrhea that leaves me exhausted.The less pills I take the better. For every pill you take, there are dire side effects. I too have had silent Celiac disease for years. As a wee tot, I had it in the 1950's. Mom was too busy taking care of my sick, Type 1 Diabetic father, and working hard on her job to notice the bloat, but I see it in older photos. Bloated stomach under stress that made me look fat, but zero diarrhea. It's probably the reason I had cognitive functions that weren't up to par. Your gut effects your brain. If I can stay off any drug, I'm happy. Good luck, seems everybody is suffering from GI problem and the trouble with MC; doctors don't know how to treat it. Just give a pill or Pepto Bismol. Pepto Bismol made me fall. I'm connected with the famous researcher for MC. He too has the disease. I'm a RN and have done "Fund Raising" for one disease. He wants me to help him and educate doctors on MC. I can't, because I'm sick. I only take a drug when it will save my life. Steroids are the worse. Bone disease and cataracts and my blood sugar went through the roof. Doctors don't give their families Prednisone or Steroids, but give it to us like candy. Many antibiotics will do the same for inflammation, like the old antibiotic Erythromycin. I'll take that, but no STEROIDS! I got that from a doctor who is against steroids.

Asta, I'm use to my restricted diet. I eat a Caveman's diet and doing much better. Lots of protein for healing your gut, well-cooked soft vegetables, and fruit. It's a trial and error approach. If you get desperate like me, you can always contact Dr. Fine, Enterolab to find out what you can and can't eat. No 72 hour fecal exam, just a small stool sample you mail to him. It's worth the money and maybe you can get off your destructive drugs. Many with MC have stated the drugs DON'T HELP!

Asta, if you stay on your DIET, many people go into remission and stay in remission. Your GUT has to heal and DIET will do it.