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Fri, Jan 24 1:01pm · Collagenous Gastritis in Digestive Health

Hello Mindi,
I just read this post. Wish I had seen it earlier, I apologize. So here we are 1 year later. We were not able to be seen by Dr. Joseph Murray since our daughter was under 18. 🙁 Bummer. But, we are very happy with the pediatric GI Dr. Imad Absah. He practices alongside Dr. Joseph Murray at the Rochester, MN, Mayo Clinic.

Our 17 year old daughter has been taking 6 mg Budesonide pm and 20 mg omeprazole am. We are just at the year mark for the regiment. At 6 month check and endoscopy, her symptoms were very much under control (no daily vomiting, less severe abdominal pain, etc), blood work was all in normal range (with daily supplements- iron, ferritin, and cortisol levels normal- Praise God!), but unfortunately her endoscopy showed almost no change with cobble-stoning of the stomach lining and multiple bleeding sites. Augh. So, we are at the 1 year mark and back to decision making time- medication changes, trying something besides steroids (very concerned for long term use and the implications on her health), etc. Really love for you to contact me personally- pm.

Fri, Jan 24 12:53pm · Collagenous Gastritis in Digestive Health

Hello, We are wondering what you have been doing since this post. If you could please let us know, we would be so appreciative! 🙂

Our 17 year old daughter has also been taking 6 mg Budesonide pm and 20 mg omeprazole am. We are just at the year mark for the regiment. At 6 month check and endoscopy, her symptoms were very much under control (no daily vomiting, less severe abdominal pain, etc), blood work was all in normal range (with daily supplements- iron, ferritin, and cortisol levels normal- Praise God!), but unfortunately her endoscopy showed almost no change with cobble-stoning of the stomach lining and multiple bleeding sites. Augh. So, we are at the 1 year mark and back to decision making time- medication changes, trying something besides steroids (very concerned for long term use and the implications on her health), etc. Look forward to hearing from you.

Thu, Jan 23 10:58pm · Collagenous Gastritis in Digestive Health

Hello Andrew, Our daughter was diagnosed with CG just a bit over a year ago at 15 as well. Just the same as you, we watched the YouTube video with Dr. Joseph Murray, and then we called for an apt. shortly thereafter. We were told we were she couldn't see him, as he only takes adults. So, we went to the Mayo Clinic in Rochester, MN, and are very grateful & very please with Dr. Imad Absah, GI Pediatrics. She has been under his care for just over a year now, as well as her just top-notch, super caring, local doctor here in the Northwest- Dr. Raghu Varier- super thankful for him on her team as well. OR/WA

Our daughter's early symptoms when diagnosed by endoscopy (biopsies sent to pathology- cobblestoning in her stomach & multiply spots of active bleeding, in OR and Mayo Clinic, MN) were the following: waves or times of nearly constant nausea, extreme lethargy, vomiting- multiply times a day, severe stomach/abdomen pain, bouts of dizziness (turns out she also has POTS syndrome), and anemia-ferritin level 12.

Just one year out this month- her symptoms have dramatically improved with the use of budesonide 6 mg pm & omeprozole 20 mg pm & other supplements for her. We have been wanted to see how this year on these med's went and to share on this platform. We have found such loving, supportive families on this site. (A HUGE thank you to Frank for putting this site up for all of us.)

It would be awesome to connect our daughters. If you could personal message me, we can share contact info. – Wendy

Dec 2, 2018 · Collagenous Gastritis in Digestive Health

@dpsmarkia So sorry for all you've had to go through. It would be so helpful if you could let us know what you've tried, over the last several years, in regards to medication, diet, avoidance, triggers, doctors advice, etc. -things that didn't work, as well as what did. Wow… you are so right that there is not much out there. And, when something works for one Collagenous Gastritis patient, it very well may not work for the next one. So appreciate your sharing with us! Look forward to hearing more. 🙂

Dec 2, 2018 · Collagenous Gastritis in Digestive Health

@clif Thank you so much for your share! I'm so happy to hear that you have been able to get some relief with your change in diet. We've tried dietary changes – 6 food elimination, with no change whatsoever. I'll post what we are doing now under a doctor's care at Mayo up top. (So I only do it once) 🙂 So glad that you do have a diagnosis after so long. Wishing you much relief with your new plan!

Nov 1, 2018 · Collagenous Gastritis in Digestive Health

My heart just goes out to you! It is brutal watching our children go through so much pain- with so many unknowns. How old is your daughter? How long has it been since she was diagnosed?

Nov 1, 2018 · Collagenous Gastritis in Digestive Health

Our 15 year old daughter was diagnosed with Collagenous Gastritis just this summer. Her daily symptoms are severe abdominal pain, nausea, heartburn/acid reflux and vomiting (daily unless she is able to just lie still until it passes- even then, that doesn't always work). She has tried dietary restrictions (no dairy, wheat, soy, nuts, eggs, shell fish) and added them back in- NO difference without/NO difference when adding them back in. Stress, even for exciting/good things, and movement do aggravate her symptoms. Omeprazole and ranitidine made her much worse- on 300 mg daily ranitidine last month for a couple weeks, her symptoms were worse than ever- including painful, dizzy spells nearing black outs, large blenching periods and the worst the heartburn/acid reflux has ever been. We have stopped all medications, under her doctor's care here in Oregon, and she is simply back to square 1- original CG symptoms. Also, with the Gastric Emptying Scan, we have found that she also has Gastroparesis.

So, after much research and prayer, we are heading to the Mayo Clinic in Rochester, MN, this coming week, to see a pediatric gastroenterologist. I would love to talk with you personally to see what you have tried and share our stories. I'm not sure how we can connect, but would very much like to. We will know more when we return.

Aug 22, 2018 · Collagenous Gastritis in Digestive Health

Went in to doctor today for our 15 year old daughter who was just diagnosed this week with CG (confirmed by results from multiple biopsies from her endoscopy last week).

She's been severely nauseous, made worse with movement- more especially in the morning, vomiting, and abdominal pain for 9 weeks today. EVERY DAY is a challenge to get out of bed, gag and gag, sometimes throw-up and sometimes just go back to bed. Nausea and pain in the abdomen last all throughout the day. Like a switch flipped in her body 9 LONG weeks ago today.

We live in the Portland, Oregon, area. We would very much like to know if there are any clinical studies done for CG for pediatrics. We have spoken with the Mayo Clinic in Minnesota and they told us of only studies for adults. That doesn't make much sense. Please let us know. 🙂