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
Hello @mcash and welcome to Mayo Connect. I am sorry to hear of your daughter's recent diagnosis of CG. It is wonderful that you are advocating on her behalf and looking for some answers. We have a number of members who have experienced this disorder. I am glad to hear that her symptoms are mild at this point. I would like to invite @nabi whose daughter was also recently diagnosed with CG.
@astaingegerdm is a volunteer mentor who might also be able to help with more information.
Is your daughter taking any prescription meds for her symptoms?
Liked by wendyt2018
Hi, My daughter was diagnosed eight years ago starting with massive stomach bleeds. So we started out with severe symptoms, at the beginning, stomach pain, nausea, etc. She is 20 years old and in college. After finding the right diet for her and traditional medicine and alternatives that work, she rarely has symptoms like others with CG — i.e., frequent nausea. However, she does more easily get motion sickness than most. I usually let her sit in the front seat because of that. She's not on the diet I'd like to see her on but since she's in college, she does the best she can. The drugs she's on are omeprazole (10 mg) 1 x day and an injection of Lanreotide which is supposed to be given every month to prevent stomach bleeds. However, she is trying to space it out to every 2 months, to see if she can get off of the drug eventually. She is a nursing student and can give herself her own shots. As far as alternatives and diet: she is on a gluten-free diet, not as strict as one with celiac, and limits processed food, tries to eat a whole food diet (hard to do in college), and the homeopathic medicine, Arnica Montana 30C, has been a lifesaver for her, literally, she thought she was having a bleed two different times, (and as many as she has had, she knows it), and both times the arnica has helped keep her hemoglobin level stay normal; a couple of days of weakness and she bounces back. (Western medicine poo-pahs homeopathy, but it has worked for us, it's cheap, and it can't hurt her.) I hope you find the right things for your daughter. It's a journey and maybe somewhat different for everyone. By the way, stress can seem to trigger symptoms but that can be true for everyone. She is learnig how to breath deeply and move on. Her faith in Jesus has helped tremendously. She has been able to see that CG has been a gift from God, directing her path to become a nurse, possibily a nurse anesthetists. So her circumstances have not impacted her vision, her vision has impacted her circumstances. She has 1 1/2 years to go to get her nursing degree. I'll be praying for your daughter. Also, you can participate in more in-depth conversations with others with CG on the Facebook Page: collagenous gastritis discussion group. There are some super mom's who have done exhaustive research on CG who may be able to help. Your daughter can participate in the group as well, maybe gain some insight how she can help herself. I'm bumping up my prayer life now because my daughter is on week 7 without her Lanreotide and she's over 500 miles away. Please pray for her as well.
Liked by Teresa, Volunteer Mentor
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Thanks for sharing such encouraging information, @emewood. I'm glad that your daughter is adjusting to this diagnosis and feeling better. I hope that @mcash and all moms of children with this disorder will feel encouraged.
I am interested to know more about the drug Lanreotide helping prevent stomach bleeds.
When I looked up this drug it said is used for acromegaly, a condition of too much growth hormone.
Did a gastroenterologist or another medical specialist prescribe this drug?
I’m interested cause I have also had stomach bleeds and have CG.
Hi Mindi, Yes, Lanreotide(Somatuline) or Octreotide (Sandostatin) (two different manufacturers) was developed to treat acromegaly, however, it was discovered to shrink capillaries in the stomach area and has been used for stomach surgeries to stop bleeds and other off-label uses. Her gastroenterologist prescribes the drug which is delivered every month in a cooler on ice. My daughter had such severe bleeds when she was 14 years old, we were afraid to travel because she ended up multiple times in the hospital requiring several blood transfusions. Our gastroenterologist contacted the best experts in the country including Dr. Winter in Boston, who apparently was one of the first to diagnose CG. From these conversations, he came to the decision to use the Lanreotide. However, we had a bit of a "fight" with our insurance company because it was an off-label use, i.e., other than for acromegaly. We finally got approval, and this drug has been amazing. She is on the lowest dose made. Like any drug, it has potential side-effects, but it was the best choice for her and is allowing her to get through college. She is a junior in nursing school and has decided to try to ween herself off the drug by stretching out the dosing to every 2 months instead of 1 month. It makes me nervous, but I'm honoring her wishes. FYI after her shot, she notices a feeling of hypoglycemia, so she makes sure she has eaten something to bring her blood sugar up (that is one of the side effects). She gives herself the shot now but used to get it done at the doctor's office. For Octreotide I believe the dosing is 10, 20, & 30 mg. For the Lanreotide it's 60, 90, & 120 mg. We've tried both drugs, the insurance company required us to switch from Octreotide to Lanreotide, but both have been effective in their lowest doses. I hope this answers your questions. Let me know if you have any other questions for me or my daughter. My prayer is that she outgrows CG and is able to get off meds.
Liked by Kanaaz Pereira, Connect Moderator
Thank you for reply and all that information about Lanreotide. I was not aware of it but have now found a few articles online about it with bleeding in stomach.
What an excellent Gastroenterologist your daughter has. Is impressive that he/she contacted other leading specialists for input on how to treat.
I have been taking Budesonide and Omeprazole for some years.
Side effects of these drugs a worry.
How does the Arnica Montana 30C work? Is that something she takes regularly or just if feeling of a stomach bleed?
@epvb I was diagnosed a couple years ago with collagenous gastritis (CG) by Dr. Murray and Dr. Acosta at Mayo Clinic, Rochester. It first started in 2013 after a stressful period i was experiencing heartburn all the time and anemia – i had an endoscopy, and they didn’t see anything. Then, I had a massive GI bleed (hematemesis + melena). I was hospitalized for about 2 weeks and had a transfusion, and they did a bunch of endoscopies and just assumed I had regular case of bad gastritis. After that, i stopped eating or digesting anything that could make my gastritis worse, but I unfortunately had a second bleed in 2014, and that’s when they finally found out about my CG. I contacted Joseph Murray at Mayo and they gave me budesonide to take twice a day. Although it has been helpful since then, I’m having a rebound of symptoms just recently, so I’m looking to connect with people to see what worked for them. I’m wondering if one day they’ll find the root cause (like they did with celiac). A lot of the definitions/profiles of collagenous gastritis don’t really fit my experience, so I’m curious to see what other people have been through.
Are you connected to the collagenous gastritis discussion group on Facebook? Lots of good info there. My daughter has CG. She's 20 years old and a Junior in college, doing well. She has changed her diet (no gluten) and takes a low dose of omeprazole (10 mg). When her stomach doesn't "feel right," she takes Arnica Montana, 30C homeopathic drug. It seems to help keep blood where it belongs. (Maybe a placebo affected but it has worked last two times she suspected a bleed while in college. She spent many days in the hospital with transfusions when she was 14 and 15 years old. Stress management also seems to help. Hope this helps.
Thank you so much for your suggestions. I do believe that stress plays a large contribution of this disease. Mine was caused by long-term, excessive use of over-the-counter Aleve, Excedrin and the like for migraines. It blew out my stomach. A lifestyle change is certainly in order for me. Yoga, tai chi, and quiet meditation are on the list. It sounds like your daughter has been battling this disease from an early age. I am 60 but was misdiagnosed with GERD for a number of years. So I unfortunately kept up my daily “cocktail” of headache meds. I will keep your daughter in my prayers.
Thank you. Praying for all of you with CG. There are worse things to battle, but this is by no means a picnic. Thankful for the prayers of many.
My daughter was recently diagnosed with CG. She is 15. The GI Dr we see admits she doesn't know anything about it. I ran across this site while investigating on the internet. I saw a YouTube video with Dr. Joseph Murray from the Mayo clinic and was hoping to get in touch with him about possibly adding my daughter to any research he may do. She has nobody to offer relief to her symptoms. No medicines. No diets. My wife, daughter and I have been simply doing trial and error with limited success. Can anyone help or advise? My daughter would also like to reach out to anyone (someone female and close in age) with the same illness. She has stated she feels all alone in this, despite her mother's and mine's best efforts to ease her pain. Thank you in advance.—Andrew
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
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)
which successfully stopped the bleeding. It's an injection given in the glutes every month. She is now a 20-year-old nursing student junior in college and doing well. She is experimenting with spacing out her injections every 8 weeks instead of 4 which bumps up my prayer life, but she feels it's something she needs to do. Looking back, the stress in her life (she is a perfectionist) seems to have played a role in her symptoms. She has given up gluten/wheat which also has seemed to help. She also takes 10 mg of Omeprazole every day, bumping up the dose if she experiences any pain. As far as alternatives, the homeopathic drug, Arnica Montana 30C, has works wonders when symptoms flare up, especially if she senses a bleed coming on. We are blessed that she gets warning signs like mid back pain and stomach pain unlike anything else. I've forwarded your plea for help to her, hopefully she'll have time to respond but she is really busy with school. Things I've done to help her 1) make her favorite comfort foods, white rice and chicken thighs (high fat to help her gain weight). Let her drive or sit in the front seat of the car as she tends to get motion sickness more easily than others, 3) Try to keep a positive peaceful atmosphere in the house, especially at mealtimes. 4) Do fun things, 5) last but not least, pray. Hope this helps. Emelia
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.
My 16 year old daughter was recently diagnosed with CG. She originally had her endoscopy for some esophageal issues (asthma/cough/throat clearing/chest pain/heart burn), along with stomach pain, and the CG was discovered from the cobblestoning in her stomach and the pathology report confirmation. She has a few other symptoms but they are mild compared to what I am reading online. Did anyone start out this way (relatively mild) and then the CG progressed? Blood work all shows normal too (iron, B12, etc.).
Since my daughter is so new to this diagnosis, I am trying to see what the future holds and to know what symptoms to look for.
It has been a while since you last posted about your daughter's diagnosis of CG. I would love to hear from you and know how she is doing. Will you post again?
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