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I was recently diagnosed with collagenous gastritis which is very rate. I’m looking for anyone else who has similar diagnosis.
Hello @hhp3 and @canadianron,
Welcome to Connect. I hope you’ve had a chance to view the messages in this discussion; it is an an incredibly informative group where members continue to share their experiences with this rare disease.
@hhp3, your doctor seems to be correct, in that there is no increased risk of stomach cancer related to CG. According to the National Institutes of Health, “In the majority of adults, the condition seems to follow a chronic, intermittent course, with no significant mortality risk or severe progression.” https://rarediseases.info.nih.gov/diseases/10961/collagenous-gastritis
However, some studies have found an association with autoimmune diseases, particularly celiac disease. Have you had any tests to rule out celiac disease, @hhp3?
I’d also encourage you all to view the Gastroenterology & GI Surgery Page on Connect, https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/ where you will find videos, posts by Mayo clinic experts, especially with regard to the link between our gut bacteria and digestive health.
In the meantime, I hope @epvb @sodonnell, @shosh37 @kacolton @ibrown51484 @mindi @knutrition @galy @mjgarr, and others will also return with their insights.
@hhp3, as @candianron noted, have you made significant changes to your diet? Have either of you noticed what works, or what foods can act as triggers?
Hello! Thank you all for posting in this page. I can not tell you how helpful it is, because it doesn’t seem like there is a lot of information out there. My daughter was just diagnosed with CG at 11 years of age. She really doesn’t have a lot of symptoms and I’m so grateful. Seems like CG can be really painful.
She has some food sensitivities (pineapple). She was being tested because she is small for her age (7% in height and less than 1% now in weight and her bone age has not progressed in a year and is behind). Her celiac marker came back abnormal, so upon an endoscope and other labs, they have told us now she has CG and lactose intolerance. She has been taking Prilosec for about a week with no known help (although like I said no real GI symptoms most of the time). Anybody find help with acid blockers? They want to then scope her a ton in a few months (another endoscope, colonoscopy, and possible MRI). I really don’t feel good about this and really would like to try some diet changes etc. Has anyone had a food emptying study done? Anyone else small in stature at this age? Any help or advice is most appreciated. 🙂 Can you tell I’m an overwhelmed mom?!
Hello! I also have Collagenous Gastritis and have had it since 2010. I was actually one of the first cases, so I’m so glad I found this discussion!! I’m actually dealing with a lot of autoimmune conditions that seem to be associated, including Hashimoto’s and hives all over my body. Has anyone else experienced this?
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Hello @kaliwebster, welcome to Connect. We are also glad you found this discussion. You mentioned that you were one of the first cases, if you feel comfortable, would you mind sharing with the group a bit more about that? It sounds very interesting!
Hello @JustinMcClanahan! Yes of course. I wish I knew more about it myself, but before I was diagnosed, I had severe stomach pain whenever I ate anything. Each day would get a little worse, until it reached the point that I couldn’t stand after I ate something. I had numerous tests done for any allergies, Celiac, or Crohn’s disease. Every test came back negative, so I went on with the pain. Until one day I came home from school with severe stomach pain (a combination of nausea and stabbing). I went to bed early and soon woke up when the sensation that I needed to throw up. I went to the bathroom, and that’s all that I remember. My parents ran and found my in a pool of my own blood. They said that I threw up over a liter of blood, when unconscious and had a seizure in their arms. After being rushed to the hospital and spending some time in a children’s hospital, many more tests were done. There happened to be a staff member (this was in Vermont) whom wrote a paper on Collagenous gastritis and tested me for it, and here I am! That’s kind of the shortened version, but ever since I’ve had a very sensitive stomach and autoimmune conditions popping up right and left. I’m currently a senior pre-med student, so the genetics involved really interests me. Do you know of any clinical trials/test being done on this disease?
Sorry for the late reply, I understand your pain here. Acid blockers didn’t and do not help. Alevera juice is very call mean in the stomach up George A. very well. It helps me with a lot of nausea and indigestion at this point. Food emptying test didn’t you get any results for me, everything was normal. I would still say I’m walking wounded, I don’t feel good pretty much every day. CBD oil helps a lot, Alove Vera juice helps, ginger chews are amazing
Thanks for sharing
Where do you buy the Aloe Vera juice and Ginger Chews ?
Whole Foods aloe Vera juice. Or amazon carried herbal answers brand. There’s two types of herbal answers brand. Both great, I prefer the aloe only one. Natural Co ops sometimes carry “gin gins”.. Amazon does too
@nando73 my daughter is also 12 and had diagnosis in Australia (Sydney) today. Tried to PM you would be keen to connect.
I’m sorry to hear about your daughter, and so glad you’ve reached out to the Connect community. I hope you’ve managed to connect with @nando73, but I also wanted to mention that the benefit of sharing in the community is that you can receive information and support from an incredibly knowledgeable group of people.
If you wish, @looloo, could you tell us a bit more about your daughter? What symptoms does she have? How is she coping with this diagnosis. We look forward to getting to know you both, and perhaps exchange insights across the ocean.
I was diagnosed approximately six years ago, and I found one medicine that worked and kept my symptoms under control. I’m currently take Dexilant its an expensive drug but it worked wonders for me. I still have flare ups but nothing compared to what was happening prior to being placed on it. The uncontrolled nausea was the worse, it would happen at any time and it didn’t matter what I ate. When I first was diagnosed my gastro doctor at the time told me what it was but didn’t provide any treatment alternatives so I switched doctors and my current gastro doctor was really interested in trying to figure out the disease, so he tried several meds and we finally found one that worked for me. The weight loss was the scariest since I had always been really healthy I initially thought I had cancer due to the rapid weight loss. I’m 5’9″ and I weight approximately 145 and went from a size 10 to a size 6. I was afraid to eat anything, however, with the medication I was able to eat better and gained the weight I had lost. The funny or not so funny is I’ve exceeded my normal weight so now I’m working to get a few pounds off. I haven’t had any recent episodes of nausea, which I’m so thankful for but I still have abdominal pain, but at least I am not nauseated all the time. I still watch the types of food I eat but I’m so thankful that I can actually tolerate any food. Its hard to explain to people because I always get that I look so healthy, but little do they know that I struggle with this condition on a daily basis. I’ve kept a positive outlook as I know things could be worst. When I have the little or not so little episodes I just look at my husband and say “You know I have a condition” and we just laugh. Its not the end of the world …but it was scary at first…
Thank you for sharing @kaliwebster! Are you trying anything diet wise or taking medications that is helping? I suggested to my daughter’s doctor that I think it’s autoimmune related, but they were quick to say they didn’t think so. Has anyone tried or heard of the Wahl’s Protocol? We’re thinking about trying it.
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