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2 days ago · Collagenous Gastritis in Digestive Health

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?

2 days ago · Collagenous Gastritis in Digestive Health

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.

2 days ago · Collagenous Gastritis in Digestive Health

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

2 days ago · Collagenous Gastritis in Digestive Health

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)

Mon, Jan 6 3:41pm · Collagenous Gastritis in Digestive Health

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.

Mon, Jan 6 5:59am · Collagenous Gastritis in Digestive Health

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.

Nov 28, 2019 · Collagenous Gastritis in Digestive Health

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.

Nov 20, 2019 · Collagenous Gastritis in Digestive Health

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.