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Thu, Nov 28 7:01pm · 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.

Wed, Nov 20 7:04am · 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.

Wed, Jul 31 11:02am · Collagenous Gastritis in Digestive Health

Thank you for that information.

Sat, Mar 2 1:50pm · Collagenous Gastritis in Digestive Health

Please don't despair. My daughter is 19 and was diagnosed when she was 12. She has been to some of the best gastroenterologists in the Charlotte, NC area and hey didn't really know what to do either but helped as much as possible. She was in the hospital 4 times for blood transfusions because of severe stomach bleeds. She is in college now and doing well, but on meds to prevent stomach bleeding but is not experiencing pain, thankfully. I've heard others rave over CBD oil for pain. I just started using RSHO Gold Hemp Oil for my own pain and it seems to be helping. It's expensive, but I've heard others says it has a lasting effect even after stopping. Worth experimenting with it. There are other good brands out there as well, but all of it is pricy. I know you hurt for your grandson and hope this forum helps with ideas and encouragement. One thing that helped my daughter was eliminating gluten, dairy, and sugar from her diet. And the things we all should be doing, exercising, enjoying life, fresh air and sunshine, and a community of loving friends and family have had tremendous benefits. If you haven't already done so, check out the Collagenous Gastritis Group Facebook Page: https://www.facebook.com/groups/1516927688436167/permalink/1952087654920166/. It has lots of information, encouragement, and ideas. Grandparents are amazing and your prayers will avail much I'm sure.

Oct 10, 2018 · Collagenous Gastritis in Digestive Health

There much first hand information from mostly the moms of children with CG on this facebook link: https://www.facebook.com/search/top/?q=collagenous%20gastritis%20discussion%20group, myself included.

Aug 10, 2018 · Collagenous Gastritis in Digestive Health

I am so sorry you had to leave school because of your CG symptoms. Most western medicine doctors know very little about nutrition and diet but that is slowly changing for the better. They are good at many other things, such as diagnosing conditions and trauma care. Our gastroenterologist is a little a head of the game in nutrition. He thought it a good idea to go gluten free. Gluten and dairy are two of the most difficult foods to digest, so it made since to make it as easy for the stomach to process. The proton pump inhibitors, such as pantoprazole inhibits absorption some vital nutrients. That's why I worked with her doctor to gradually lower the dose. Here is some info from Life Extension Magazine in the next paragraph but you can research this on your own, and by all means, don't go off of it because of this information, it's just good to have information:

Role of Stomach Acid in Nutrient Absorption
Stomach acid plays an important role in the digestion of your food and nutrients. When the sphincter valve at the end of your esophagus fails to close properly, stomach contents including stomach acid leaks back up into the esophagus, damaging the delicate esophageal lining, causing heartburn. Drugs like Prilosec® inhibit the release of stomach acid and provide some relief. However, the continual reduction of stomach acid through medicines like proton pump inhibitors hinders digestion and absorption of key nutrients.9,10 This ultimately leads to deficiencies in key nutrients, such as vitamin B12, iron, calcium, magnesium, folic acid, and zinc.11 Due to the alteration in pH balance in your gut, the absorption of other nutrients is possibly at risk as well. Proton pump inhibitors not only block the release of stomach acid but also something else called “intrinsic factor,” making it impossible to absorb vitamin B12. The inhibition of dietary iron can contribute to anemia over a long period of time. It’s well known that calcium is best absorbed in the presence of acid.Proton pump inhibitors are thought to inhibit active transport of magnesium in the intestine, leading to deficiencies and potentially serious health outcomes. Your absorption of folic acid is inhibited, disrupting the production of new cells, which helps your body grow and repair itself. The absorption of zinc is impaired, which is needed for many enzyme reactions in the body. It is evident that the lack of stomach acid has far-reaching effects that extend well beyond the digestive system. You can offset these damaging effects by supplementing to provide some protection against these deficiencies. Consider talking to your doctor and at the very least take a blood test (Complete Blood Count, Comprehensive Metabolic Panel) to check for nutrient deficiencies.

Having reported all that, CG is such a mysterious condition, PPIs may just be necessary. My daughter is doing fine on 10 mg a day for now, which her doctor calls a "baby dose." She is currently flying back from a medical mission trip from Tanzania and says the prescription drug Zofran (Ondansetron) has been a life saver for nausea. (It's a drug usually prescribed for nausea from chemotherapy, so you know it's strong. We asked the doctor to prescribe it for her trip. It took a leap of faith for me to let her go on this trip. She also keeps Zofran on hand for school but doesn't need it often. Any kind of ginger candies are good, gin-gins, sugared dehydrated ginger, Trader Joe's has a selection. There are all kinds of alternative as well, supplements to sooth the stomach with declycerized licorice, slippery elm, etc. Tumeric supplements are wonderful for inflammation. Kombuch or KeVita probiotic drinks are really good. If you can learn to like it, fermented veggies like sauerkraut, not the kind on the unrefrigerated shelf at the grocery store which has been pasturized killing the good stuff, but the kind you make yourself or buy in the refrigerated section of Earth Fare, Whole Foods, or Fresh Market, it has live probitiocs in it. Anything good for the gut should help people with CG. Eliminating caffeine was a good move on your part.

What has really helped her is to know her body, develop a "tool box" for her health which you will have to custom make for yourself. Keep a journal of what you eat, do, and how you feel and adjust accordingly. I notice when she's not feeling well she goes for chicken bone broth (the boxed kind) and white rice. When she's home we watch fun videos, LOTR, Marvel movies, fun stuff. She doesn't have time to watch movies in school, too busy. There she listens to her favorite music, tries to keep her stress level down, which is hard in nursing school. She prays a lot and reads her Bible, that helps. And you are so right, experiences make us uniquely qualified for the plan God has laid out for us. You will be a wonderful nurse because of this, so compassionate, and that is of utmost importance. Praying for you, your health and your future.

Aug 9, 2018 · Collagenous Gastritis in Digestive Health

I'm so sorry your daughter was diagnosed with CG, and at such a young age. But being so young, you might have better success training her to eat differently It was difficult to get a 12-year old off sugar and eat healthier as her habits were more established. But my daughter didn't have much pain, some discomfort and nausea, but her worst symptom was really bad stomach bleeds which required hospitalizations 4 times and 7 emergency room visits starting when she was 12 years old. She is 19 now and in college. I can only tell you what has helped her and it has been quite a journey. We started by changing her diet: no gluten or wheat, or dairy (she does occasionally have yogurt and ice cream). We've greatly reduced the amount of sugar in her diet as well. I started cooking lots of fresh food, real food, mostly organic, not processed. Organic white rice, not brown, brown is harder to digest. As for Omeprazole, I do not like long term use of it; everything I've read says long term use can have serious side effects, you can do some research on that; she also was on 40 mg a day, so I asked the doctor to give her 20 mg, so she could take two a day if she thought she needed it. We started gradually reducing the Omeprazole, it's a slow process since there is a rebound effect going off of this drug all at once. I’d get advice from your doctor about this. She is now taking 10 mg every morning which I believe is more of a placebo effect but she thinks it helps. It took months to get to this small dose. As for the stomach bleeds, she is on a drug which is an injection every month called Octreotide (Sandostatin). Your daughter may not have this symptom so this would not be necessary for you to explore this option. Here’s a review of alternatives we've tried, some she liked, others not so much. Freshly made organic bone broth (beef or chicken). Lots of curcumin (tumeric), good quality fish oil. Probiotics. Iron supplements were short term as loss of blood caused anemia. Basically a health diet anyone could benefit from. Stress has also been trigger for her. She takes ginger candy for motion sickness, I usually suggest she sit in the front seat because of that. We bought an Alpha-Stim device ($700) which relaxes her when she needs it. It’s a really cool device, small easy to take to college, I use it too when she’s home. Also, our church has been praying for her. She is learning to manage her stress level in college, eat the best she can, get lots of sunshine, good exercise, have fun, enjoy life. Our hope is she will outgrow CG. She believes the Lord has used these experiences to lead her into the field of nursing, specifically, pediatric nursing. So she starts her second year of nursing school in the fall. I hope this encourages you. I will be praying for your daughter.

Aug 8, 2018 · Collagenous Gastritis in Digestive Health

Hi, my daughter was diagnosed with CG in 2012 when she was 12 years old. She is the poster child for stomach bleeds and has had multiple blood transfusions until she was prescribed Octreotide (Sandostatin) LAR Depot monthly shots, which recently our insurance changed to Lanreotide (Somatuline) LAR depot, which so far has had the same positive effect. We've changed her diet over the years, could be better but she is now 19 years old and in college. She's pretty careful what she eats, avoids gluten like the plague, but loves her red meat (grass fed beef mostly), limits dairy and has an occasional sugary treat. She still struggles with nausea, especially motion sensitivity. But since she's been super active in school, running and rock-wall climbing, she'd getting stronger. I'm hoping she will out grow this disease soon. I've been researching this since she was diagnosed and hope to see more helpful info out there.