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PUBLIC PAGE
Nov 6, 2018

Collagenous Gastritis – Searching for Answers

By Kanaaz Pereira, Connect Moderator, @kanaazpereira

Joseph Murray, M.D., talks about a rare condition – collagenous gastritis – and about Mayo Clinic’s ongoing research to better understand the causes, and try and find the best treatment for this condition.

Dr. Murray, M.D.,  is a gastroenterologist and celiac disease expert at Mayo Clinic.

Meet others talking about collagenous gastritis on Mayo Clinic Connect – an online community where you can share experiences, ask questions, and find support from people like you.

It's now called Microscopic Colitis. GI specialists don't understand this disease. All they say is take Pepto Bismol and some drugs that do no help! It's like putting on a band aide. Taking large amounts of Pepto Bismol makes me fall. I will not take steroids since I am a Type 1 diabetic. This monster disease is more common than you realize. If a biopsy of the colon is not performed you will never know you have this disease. I've had it since a wee tot. Bloated stomach, crying and holding my abdomen because of pain, and no hair till I was nearly three years of age. My symptoms when older were/are chronic diarrhea, bloating, abdominal pain, brain fog, fatigue and hair loss! Eating the "Right Food" is the only answer. Everyone is different. If I eat the wrong food, I get sick, rush to the bathroom and feel horrible. My diet is limited. No gluten, no acidic fruit, no bananas, no soy, no milk, etc. Doctors get minimal nutritional training in medical school and that's a big mistake. Pushing meds for Microscopic Colitis does not help us. Eating the proper food is the only answer, but you offer no help.

COMMENT
@oakbourne

It's now called Microscopic Colitis. GI specialists don't understand this disease. All they say is take Pepto Bismol and some drugs that do no help! It's like putting on a band aide. Taking large amounts of Pepto Bismol makes me fall. I will not take steroids since I am a Type 1 diabetic. This monster disease is more common than you realize. If a biopsy of the colon is not performed you will never know you have this disease. I've had it since a wee tot. Bloated stomach, crying and holding my abdomen because of pain, and no hair till I was nearly three years of age. My symptoms when older were/are chronic diarrhea, bloating, abdominal pain, brain fog, fatigue and hair loss! Eating the "Right Food" is the only answer. Everyone is different. If I eat the wrong food, I get sick, rush to the bathroom and feel horrible. My diet is limited. No gluten, no acidic fruit, no bananas, no soy, no milk, etc. Doctors get minimal nutritional training in medical school and that's a big mistake. Pushing meds for Microscopic Colitis does not help us. Eating the proper food is the only answer, but you offer no help.

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Totally agree on nutrition. My teenager has collagenous gastritis. We are now doing the GAPS diet/protocol. That is after seeing many specialists across the country and trying meds. GAPS is the only thing that is working for us. However, you have to customize based on the individual. If you don't customize, you don't see improvement. That is the tricky part of the nutrition route. Very slow improvement but finally moving in the right direction.

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Contact Wayne Persky's support group. You will see the multitude of people plagued by this disease. Contact Dr. Fine in Dallas, TX, an endocrinologist/internal medicine doctor/researcher. He also has a lab called ENTEROLAB. Many sufferers use his lab. He is a caring doctor and helpful with people who have MC!

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My husband was diagnosed with collagenous microscopic colitis and collagenous gastritis his symptoms were blood in the stool, diarrhea
and weight loss. He is a thin person and now looks fragile. He cannot go to the office or be away from home too long
His dr put him on budesonide ec 3mg tabs 3x a day,sucralfate 1 GM tab 3x a day, And for diarrhea Lomtil. Our life has changed, his dr said prednisone would help his collagenous gastritis. My husband decided that this drug with the terrible side effects was something to avoid. Instead diet changes were made. Diarrhea has lessened, and we wish there was a budesonide for the collagenous gastritis. That’s our story. Don’t know what else to do.

COMMENT

I have an 18 yr old with collagenous gastritis. Sucrulfate and prednisone did not help him. He is on the GAPS diet which has helped a lot. You still have to customize based on your own reactions. We also work with a GAPS practitioner via skype.

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I totally agree, my husband is trying to manage his symptoms with medications and diet. Will look into GAPS. Thank you

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What is the gaps diet???

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I was told I have collagenous colitis, is that the same as collagenous gastritis?

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Collagenous means eroded to the collagen level. They are different conditions but I think that treatment is similar.

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@terry248

What is the gaps diet???

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GAPS is basically second generation of SCD diet (specific carbohydrate diet) which I think Mayo sometimes talks about for chrone's patients. I feel like the root cause of chrones and cg are similar – the gut can't break down and absorb certain foods. You can search SCD on Mayo boards.

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@adri55

I totally agree, my husband is trying to manage his symptoms with medications and diet. Will look into GAPS. Thank you

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how is it diagnosed?

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@gg1978

how is it diagnosed?

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Endoscopy

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What is the GAPS diet? I have Celiac disease and Microscopic Colitis. A double whammy! Celiac Disease is a breeze compared to Microscopic Colitis. I refuse to poison my body with drugs GI specialists recommend. It's nothing but a band aid and does not help. Diet is the only answer. I am still sick, watery diarrhea, brain fog, headaches, abdominal pain and I wear diapers. No doctor around understands Microscopic Colitis. It's a Monster! I'm afraid to the leave the house. There's one GI specialist who understands MC, but he's in Colorado and only accepts sufferers in his state.I won't touch a GI specialist in my city. They are all inept!

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I thought I had been given the GAPS diet from my doctor but when I went to share this, I see it is called the FODMAP diet (see attachment). It was given to me when my IBS was swinging more to the diarrhea side and greatly inflaming my fissure issue and putting me in horrible unbearable pain. I think they are very similar because from this web link: https://www.healthline.com/nutrition/gaps-diet I see it states the following: "The GAPS diet is a strict elimination diet that requires its followers to cut out grains, pasteurized dairy, starchy vegetables and refined carbs." Maybe go to this link and learn more about the GAPS diet.

Shared files

FODMAP Eating Plan (FODMAP-Eating-Plan.pdf)

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