Collagenous colitis - Collagenous gastritis

Posted by reformkat @reformkat, Sep 17, 2018

I was diagnosed around 20 years ago. I was only the 7th case my specialist had ever diagnosed. so it was a little rare at that time. I had had symptoms for 10 years or so and had not gone to a specialist. So, now, I have had the symptoms for about 40 years. My doctor said in 2015 that it would burn itself out. It didn’t. There was a time when I was so much in pain that I was wishing they would just remove my intestines. lol Sometimes it is still that bad. Do we really need to have to take meds forever for this ?

I understand what you mean by wanting to get rid of intestines! I was diagnosed 2009, initially treated with methotrexate. Symptoms returned, but a little different. I was sick for about 8 years, prednisone always worked short term , but then symptoms returned. Finally in 2015 I started immunosuppressive medication for several months. So far so good!

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There is a new facebook group for collagenous gastritis. Thinking that might be a resource. However, everyone has collagenous gastritis – also rare.

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@wendy2001

There is a new facebook group for collagenous gastritis. Thinking that might be a resource. However, everyone has collagenous gastritis – also rare.

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Does anyone know how one may acquire CG. This is one of the diagnoses that has been brought up to me as a reason for my loose stools (twelve weeks since finishing a round of Clindimycin). CDiff has tested negative twice. My next option is a colonoscopy. This is all frightening. Was healthy until this happened.

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@guthealth – it is an autoimmune disorder I was told.

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@astaingegerdm

@guthealth – it is an autoimmune disorder I was told.

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Thank you.

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@guthealth

Does anyone know how one may acquire CG. This is one of the diagnoses that has been brought up to me as a reason for my loose stools (twelve weeks since finishing a round of Clindimycin). CDiff has tested negative twice. My next option is a colonoscopy. This is all frightening. Was healthy until this happened.

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So sorry to read what you’re going through. My husband was just diagnosed with CG. He also has microscopic collagenous colitis. Which is causing the diarrhea, and weight loss his dr prescribed lomtil to control the runs, and budesonide for the colon he takes sucralffate for CG. It’s all so overwhelming. Get the tests done. Once you know you can start a management program. He also changed his diet, that really helps

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@adri55

So sorry to read what you’re going through. My husband was just diagnosed with CG. He also has microscopic collagenous colitis. Which is causing the diarrhea, and weight loss his dr prescribed lomtil to control the runs, and budesonide for the colon he takes sucralffate for CG. It’s all so overwhelming. Get the tests done. Once you know you can start a management program. He also changed his diet, that really helps

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You mentioned diet. Where can I find the diet?

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Hi guys! My name is Julia, i’m 21 years old, and I was diagnosed with collagenous gastritis when i was 15. I was seen by Dr. Stephens at Mayo Clinic in 2016 and was on some medications. Since then, I have kind of been side lined from any medical help. I have been able to manage the pains from it since then, but recently my heartburn has been awful. Everyday after I eat anything I feel like my chest could explode. I was wondering if anyone who also has something similar (i know there’s only a small number of us with CG) has found anything that helps?

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@juliamichelle65,

Welcome to Mayo Clinic Connect. Heartburn seems like a simple symptom to some, but I know first hand that it can be debilitating when it gets out of control.

You will see that I moved your inquiry to a discussion about collagenous gastritis. I did this so you could connect with members like
@bvanderb, @adri55 and @guthealth who have discussed that diagnosis.

Julia, do you find that there are certain foods that make your heartburn flare more?

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@juliamichelle65

Hi guys! My name is Julia, i’m 21 years old, and I was diagnosed with collagenous gastritis when i was 15. I was seen by Dr. Stephens at Mayo Clinic in 2016 and was on some medications. Since then, I have kind of been side lined from any medical help. I have been able to manage the pains from it since then, but recently my heartburn has been awful. Everyday after I eat anything I feel like my chest could explode. I was wondering if anyone who also has something similar (i know there’s only a small number of us with CG) has found anything that helps?

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I am suffering 7 years with chronic digestive disorders , that take me out every day and night . I have Chronic Gastritis, Esophagitis, Class B GERD , small Hiatal hernia , diverticulosis. The worse thing is , I deep wet beach what tastes like sewer water 2000-3000 x a day/ night . My gut can’t handle any kind of food . It just constantly churns and is so loud , non stop . I live on Ultra Pepto . I’ve tried everything under the sun , RX wise , holistic wise , diet and elimination wise . Had so many tests done ✅. Even did acupuncture and 3 sessions of hypnotherapy. 6 Gastro Drs , in 2 states . I’m not celiac and no h pylori . I Eat small and healthy when I can eat . No fast food , no caffeine , low sugar ( just fruit) low dairy . Tried Keto and Gluten free . I’m on waitlist for Mayo Clinic in Jacksonville 6 weeks now . I’m a medical mystery and it’s now getting to me emotionally. I can’t lead a normal life . So much I want to do and I’m always sick . No Dr. has helped yet . I pray daily for relief of symptoms. Even for a day or two of relief. I’m desperately seeking and tried everything they make for gut health on Amazon. Today I will start on antidepressant . I’m sick if I eat or don’t eat and have empty stomach. We rarely go out to lunch and never to dinner . Just cook at Home . My poor body is getting weary of this . 7 years taken away and counting .
If you find out any information, I’ll follow this thread . God Bless you .. I’ll pray for you and you pray for me ok . Rosemary

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Oops deep wet belch not beach . Sorry typo

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I to suffer from chronic gastritis which I can't get rid of even on Pantaprazole PPI. Get rid of the fruit and only eat melon, and ripe banana, only drink unsweetened almond milk which is non dairy and alkaline. I had gerd and H Pylori which is now gone. Good luck!

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