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PUBLIC PAGE
Tue, Nov 6, 2018 8:43am

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.

@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.

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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