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Tue, Aug 4 9:16pm · Collagenous Gastritis: What treatment(s) work for you? in Digestive Health

Yes, forgive me. I forgot to say, I had an initial 3 month dose of steroids. I do believe the steroids made a huge difference. I started at 9mg, to 6mg, then to 3mg over the 3 months. I am sensitive to steroids. It makes me irritable/agitated but others don’t have that response. I also had trouble sleeping due to the steroids. Your doctor is leading you in the right direction. Most doctors are replicating the treatment protocol for other GI disorders since there is no researched treatment for CG. We have less than 100 cases in America. I wonder why the rise in cases is occurring particularly among the young. I hope research starts soon. Keep in touch and let me know how your daughter is doing. As a Mom, you must be deeply affected by this too. Any time you want to talk, just let me know. Jean

Tue, Aug 4 10:26am · Collagenous Gastritis: What treatment(s) work for you? in Digestive Health

Hi Prath. The symptoms I have when my CG is exacerbated are severe pain in my stomach, the inability to eat or very painful when I eat. In this state, I can only eat very small “meals” which consist of very light foods that are easily digestible like cottage cheese, yogurt, soup. When I was first diagnosed, soup was my staple food. Also, many people improve with a gluten free diet. In terms of the biopsies, mine were oozing, white, ulcers that only upon the stained biopsy results could my GI doctor see the collagenous aspect. The collagen is a sort of self healing process which tries to save the inner lining of the stomach just as a callous would try to protect a highly utilized area of skin. The “callous” is what the problem is. Due to the thickness of the callous, the stomach does not absorb the nutrients as is should. Our food is not broken down well enough so hence nutrient absorption is minimized. It is not just the medication issue. Let me know how your daughter proceeds. Notice, females seem to be more frequent which I think is an interesting factor. I also believe that my personality style contributed to my CG. I am an intense person who takes life seriously, very responsible and determined. I see very bright young females who thrive to perfection in school showing up with CG.

Mon, Aug 3 6:34pm · Collagenous Gastritis: What treatment(s) work for you? in Digestive Health

Hello. Your daughter is so young to have CG but an increasing number of young people are being diagnosed. I have CG. I have been on Protonix for over a year now. The medication worked wonders as my case was rather severe due to excessive use of NSAIDS for migraines. It ate my poor stomach alive. I have read so many of the warnings of PPIs so I took myself off and used Pepcid instead for a few months. My condition deteriorated rapidly. I am now back on Protonix. I have also been diagnosed with Osteoporosis due to CG and the poor absorption of CA and minerals necessary for strong bones. So, yet another drug, an annual injection of Reclast since oral medications for osteoporosis are too harsh on the stomach. We are sort of stuck in a grind. I have tried licorice, slippery elm, and other herbs but they do not have the power necessary to combat the CG. Diet is truly an intervention- clean, fresh food, limited fats, no alcohol, no caffeine, no spicy foods…. you see the lists on the internet. They all help some but I have had to accept that this is how my life is now. There is no cure for this disease. Discipline is the center of handling CG in terms of stress management (yoga, deep breathing, meditation, prayer), Cognitive Behavioral therapy is essential to deal with the thoughts and behaviors that trigger exacerbation of CG. If an upsetting, stressful trigger occurs, sure enough, there she blows! Sleep for 8 hours a day. I think there is no one fix, no quick magic, it is a lifetime now of disciplined awareness on all levels to really get ahead of the disorder. I hope your daughter has been able to keep weight on. Small meals are the best any number of times a day or the pain can get unbearable. My heart simply goes out to your daughter. She is way too young for this but she must courageously embrace her life, her health, and her future. My very best to you, Jean

Tue, Jun 2 8:36pm · Extreme weight loss, cannot eat. No diagnosis yet. in Digestive Health

Sorry for your dilemma. Not being able to eat is quite scary. I am wondering, did you use excessive over the counter pain medications like ibuprofen, Aleve, Advil and the like? If so, you may have destroyed your stomach and gut which maybe the cause of your inability to eat. I did this myself due to life-long migraines. I got down to 103 at age 60. I was 138. Did you have an endoscopy? Without the endoscopy, I would never have known the cause of my severe weight loss. The medications made my stomach produce too much collagen to protect it from burning itself but then I could not eat, nor absorb nutrients. Please consider the possibility. I am not a medical doctor, but it appears they may be overlooking a rare disorder which is on the rise. Collagenous Gastritis is the diagnosis I have. My best to you in finding the cause. Don’t wait….

Wed, Apr 29 7:30pm · Getting Off of Omeprazole in Digestive Health

An alternative for these GI meds that does not contribute to osteoporosis is Pepcid. Reducing Omeprazole, which is Prilosec, can be monitored by how you feel and what symptoms, if any arise. We all get so used to these meds so it becomes a habit fearing exacerbation of our symptoms. Yet, a holiday or change in these meds reveals much. Thank you for bringing this important topic to light. I have taken Protonix for my Collagenous Gastritis. I will switch to Pepcid as I have been now diagnosed with Osteoporosis. The research clearly indicates using these meds for more than a year and at higher doses Decrease the body’s ability to absorb Calcium. A urine CA test is very helpful to determine where your CA levels are at. My best…

Tue, Feb 18 5:39pm · Collagenous Gastritis in Digestive Health

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.

Fri, Feb 7 5:09pm · Collagenous Gastritis in Digestive Health

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

Fri, Jan 24 11:05am · Collagenous Gastritis in Digestive Health

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.