Collagenous Gastritis

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.

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

Hey there
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:
— https://www.youtube.com/watch?v=XY-0Fsv20sw

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.

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.

Hi All, I was diagnosed with CG and Atrophic Gastritis just today. I was previously diagnosed with a hiatal hernia and have had GERD since I was a teen. Last year after my dog passed away I noticed I would get really full when I started to eat, followed by nausea. Also, my eyes started to get really dry. I went gluten free and vegetarian and that has helped, though I still eat both on occasion. I deal with constant stomach pain and throat burning and often lose my voice. It's truly scary to find out here in 2020, how little information is out there. At least on the internet. It looks like threads on this post were last dated 2017. Does anybody have any new information that has helped them in this diagnosis?

Hi, my daughter was diagnosed with CG when she was 12 years old. I know PPIs are not for long term use, but a little dose of 10 mg of Omeprazole has really helped her. She is 21 years old finishing college for nursing. She had a not-so-common symptom of hematemesis (stomach bleeds) which at times put her in the hospital requiring transfusions so she is on another drug for that called Lanreotide (Sandostatin) which is a monthly shot. However, she is trying to wean herself off of it spacing out the shots every 2 months. So far she has not had an issue (she does get warning signs). Sorry, your pain is so frequently. I think the PPIs have eliminated the pain for my daughter and she may have to be on it for the rest of her life. I've read to supplement with certain vitamins and minerals as PPIs prevent the absorption of certain nutrition. I believe it's B12, can't remember the rest, you can look it up, but she does take supplements. Hopes and prayers to all with this very frustrating condition. One. more thing, she gets car sick easily, so I used to let her sit up front (she's grown and has her own car now, but when she does ride with us I try to drive gently around curves, not stop abruptly. Hope this helps.

Thank you so much for your reply. It is truly appreciated! God bless you and your daughter.