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
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.
Liked by Kanaaz Pereira, Connect Moderator, JK, alumni mentor
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!!!!!!
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@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.
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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.
@oakbourne – Thank you very much for your advice!
Since I'm a RN, I like to help people. Hope things work out for you. Give it time, and look on the MC (Wayne Perskey's) website. It has loads of information with people suffering like you and me.Everybody talks about their trial and tribulations with this disease.
Thank you for that information.
It’s been a while since I have read the thread… Along with CG, I also have autoimmune thyroiditis and POTS… for the most part the pots is pretty well managed… currently I am experiencing a flare with the CG, my GI has been prescribing various things but I am also always trying to look for something more holistic… Has anyone tried Slippery Elm? Just to note I have been Gluten free for 6 yrs and now dairy free for about 2 months… any suggestions are most welcome, thanks!!!
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@kellye5 I also have leg pain/aches and have not heard anyone else complain about these. Is there anything that helps you with this or have any doctors made any recommendations for the leg aches? The drs I have seen who know about cg do not believe that the leg pain is associated with it. Thank you.
It’s very interesting to hear you have pains in your legs. My daughter has just newly been diagnosed with CG and she has been suffering pains in her legs also. I just thought it was unrelated growing pains as she is 10 years old. I am so worried what this diagnosis means as there seems to be so little known
My 16 year old daughter was recently diagnosed with CG. She originally had her endoscopy for some esophageal issues (asthma/cough/throat clearing/chest pain/heart burn), along with stomach pain, and the CG was discovered from the cobblestoning in her stomach and the pathology report confirmation. She has a few other symptoms but they are mild compared to what I am reading online. Did anyone start out this way (relatively mild) and then the CG progressed? Blood work all shows normal too (iron, B12, etc.).
Since my daughter is so new to this diagnosis, I am trying to see what the future holds and to know what symptoms to look for.
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