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
Sure, I guess no news is good news. She is now a junior in nursing college working on her bachelor's degree. She is doing very well, but as a mother, I think she is too thin, 5'7" about 103 lbs, but it doesn't slow her down. She's maintaining a 3.9 GPA and has a serious boyfriend. She is also trying to get off the Lanreotide shots by spacing out the doses. I'd prefer she do that when she's home in the summer but it's her decision. She tried to get off the "baby" dose of 10 mg Omeprazole but it caused her severe stomach pain, so she stays on that. I just pray for her every day. Thanks for asking. How is your daughter doing?
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
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Thank you, Wendy, for quick response. I will be in touch with you on connecting our daughters. Its very comforting to have the support I see on this page.
Liked by Kanaaz Pereira, Connect Moderator, wendyt2018
Hi Andrew. My heart and prayers go out to you and your daughter. My daughter was diagnosed when she was 12 years old with a massive stomach bleed which happened six more times between the ages of 14 and 15, requiring multiple blood transfusions. She was put on the drug, Lanreotide (SANDOSTATIN)
Thank you very much for reaching out. Good to see your positive attitude in all the muck. That goes a long way, its the spirit that sustains us during sickness. I am learning alot from this connect site. I will be in touch and visit frequently to stay in the proverbial loop. Hope your daughter continues in her RN pathway with great success.
One more thing … there's a Facebook page for CG which offers a plethora of good information from parents and patients about what they've tried and what has helped. It has provided a great deal of hope to all with CG and parents alike.
Thank you once again @emewood. Your devotion to your daughter’s health is respected. I appreciate your info about CG as I gain further insight into how to treat my CG at 60. Your examples of what to do/how to help are hands on. I totally agree with you regarding the stress factor. My CG flares up with stress as well as with certain acid foods. I keep telling myself to get into a yoga, meditation, tai chi class yet continue old patterns of putting that type of self care off which is so counterproductive. Time for working, family, then Mom. Your daughter sounds like a go getter and a dear soul, especially wanting to enter the nursing profession. God bless her. I pray that she maintains a balance between her schooling and calm, restful ways. Once a lifestyle pattern is set, it takes strong intervention to change. I hear how proud of her you are yet the concern of 500 miles away from you. Please make sure you too take care of your health and well-being. I sincerely admire you.
Liked by emewood
Sorry to hear bout your son.
His CG condition must be reasonably severe then if Budesonide has been prescribed. From what I can make out from this Forum there does not seem many of us taking Budesonide. Some seem to be taking just a proton pump inhibitor, such as Omeprazole, and maybe Iron supplements .
Of course I can’t be sure as members don’t always provide a lot of detail of the medications they are taking.
My own experience is that Budesonide seems to be helping my stomach and reducing chances of it bleeding.
It does seem to be keeping me more comfortable as prior to Budesonide I would often get stomach pain. I also take Omeprazole so that would be helping.
I have not to date had any problems with Budesonide. However, I certainly worry about the long term implications of taking this medication as it is a type of cortisone. Unfortunately I have no option and have to weigh up benefits of taking it over not taking.
I hope that’s helpful.
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.
Liked by Teresa, Volunteer Mentor
I read your post Nov 1st. You said in that post your 15 year old daughter was to have appointment with gastroenterologist the following week at Mayo Rochester. Can you please say if medications were suggested/prescribed or if any other treatment eg. diet was suggested at that appointment. Did your daughter see Dr J. Murray or another gastroenterologist there? What advice have you received from them.
I gave outline of treatment prescribed by my gastroenterologist in my 27/10 posting.
I hope your daughter’s symptoms are decreasing in severity.
Budesonide has helped alleviate mine. Unfortunately I have had to weigh up long term side effects of medication vs frequent pain in stomach with gastric bleeds and then transfusions.
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.
Hi y'all, I was born with silent Celiac Disease. Always been shaky and felt like an inner explosion going off inside my body. I learned to live with it and nobody could help me. I didn't know what was going on after seeing doctor after doctor. I've seen my big bloated stomach in photos as a kid. My Mom was too busy taking care of my sick father. About 15 years ago, I experienced explosive diarrhea and lost tons of weight. I was diagnosed not by a doctor but a support group on line with Microscopic Colitis. I take no drugs. I won't touch Prednisone or steroids. This is maintained by Diet and diet alone. I eat NO carbs, everything is soft, and many things I can't eat. Soy is a big NO NO! Grocery shopping is a chore because I check every ingredient before I buy the item. Food manufacturers are killing us.They've hired big lobby groups to protect them. In my humble opinion, I think they are one of the reasons why we're seeing stomach cancer, pancreatic cancer and other maladies on the rise. Back in the day, we butchered our own animals and we knew what what we ate was pure. We grew our own foods.Wayne Perskey or Tex, made aware of Microscopic Colitis and he's written books and helped us with our diet. I have no confidence with the majority of GI specialists. They don't have a clue. You maintain this autoimmune disease by Diet. You can mail in a simple stool sample to Dr. Fine and you will find your culprits and what not to eat. I take Magnesium because our soil is depleted of nutrients plus I take D3 all for healing. I have a long way to go, but I am a fighter. No drugs, the drug manufacturers think everything is a pill. I can't stomach them. I think they want us sick to get richer and richer. They are not our friends.
If y'all want to know more about our support group, give me a holler. Eating a caveman's diet is not easy…but it's doable.
Hi – I was just diagnosed with Collagenous Gastritis. I’m a 32 yr old female. I went to the doctor for stomach pain/heartburn — had an endoscopy that revealed four stomach ulcers. Biopsy of stomach revealed this rare disease. Not I’m on 40mg of Prilosec morning and 40mg of Prilosec nighttime. Then will have another endoscopy in two months. Anyone else have ulcers with this disease? I also feel a knot in my stomach and feel nauseous whenever I’m hungry. Any tips/information welcome. Are any specific diets good for this? I’m a vegetarian. I also have hypothyroidism and Hashimotos.
Hi Becky. I was diagnosed with CG in July of 2019. Here was my regime for the severe oozing, ulcerative with white pustules case that I had at the time which has now improved to mild. Hitting it from the start is essential. I was prescribed 40mg of pantoprazole 2X per day. I found this med was tough on me but I endured it. I had a weird effect of strange noises in both ears which sounded like a copy machine running. Weird. I also took budesonide starting with 3-6-9 mg over the course of 3 months. I truly believe the stomach specific steroid was the key to my improvement. I now remain on pantoprazole 40mg per day with limited side effects. In terms of diet, I had to eliminate much. No tomatoes, citrus, alcohol, fried or creamy foods. Nothing heavy to the stomach. I ate very small meals and still do. I mean small, one cup, only a number of times a day. Many recommend a gluten free diet. I instead am now focusing on an anti-inflammatory diet. The internet is loaded with info and recipes. I also take numerous supplements. My collagen was so bad that I did not absorb nutrients and so I have osteoporosis. My GI doctor did not think to check this, my OBGYN did. Have a DEXA scan soon. This disorder took years in the making for me. Examine what are your sources of origin. For me, I took many years over-the-counter pain meds like Aleve, Excedrin, etc. to relieve my daily headaches which I have found are migraines. I believe this is an autoimmune disorder which further results in inflammation. The only over the counter pain med that is somewhat ok is Tylenol. We know about the liver/kidney concerns there. I feel like I have spent way to much time researching all of this for myself, not really an help from my doctors. SO educate yourself as best as you can. This group support is priceless. Additionally, I am certain that my stressful life has been a main contributor, as has poor sleep through the years. So really, a lifestyle change had to be in order. I have cut back on work, make certain for quiet time to detox, a listen to my body better. The pain was sometimes overwhelming buckling over in severe agony. This has improved thru time. There is so little still known about CG. Thus far, this is what has worked for me. I am not healed but at least functioning. I find too that exercise is hard for me because it has a tendency to exacerbate the pain. So I take smaller walks, don’t push myself, and listen to my limits that my body tells me. Another lovely member of this group indicated that Facebook has a good support group for CG. I have not joined it since I am weary of facebook and other media type stuff. Hope some of this helps. My best to you and let me know how you are doing. I will contact you if I left anything out above. Jean
Liked by martft4, Becky K
I got my diagnosis of CG today!!!
Any advice tips, tricks?
Welcome to Connect, @sogo747.
I’m confident that @mindi @jmn @medic03 @wendyt2018 @buckeyeliz and other fellow members will return to share their insights with you. In the meantime, I encourage you to view this video where Mayo Clinic gastroenterologist, Dr. Joseph Murray explains a few details about CG:
Could you share a bit more about yourself? How did you get diagnosed? Do you have to follow a special diet? I look forward to getting to know you better.
Liked by wendyt2018
Hello and welcome to the group of CG! I recently posted a lengthy note to @galloway123 on 2/7. Perhaps take a peak at that post and contact me if you need more info.
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