I was recently diagnosed with collagenous gastritis which is very rare. I'm looking for anyone else who has similar diagnosis.
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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 @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?
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?!
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.
That is great jwicks if Dexilant works for you keeping the CG symptoms under control without the need for a steroid such as Budesonide.
Unfortunately when I was taking several Omeprazole (Similar action to Dexilant) a day it was not enough to prevent the large stomach bleeds. For this reason have to take Budesonide too. Not happy about taking steroid but seems no other option.
Hello @buckeyeliz, I have idiopathic small fiber peripheral neuropathy and in my search for things that would help, the Wahls Protocol diet was one of the first things I looked into after reading Dr Terry Wahls story (http://terrywahls.com/about/about-terry-wahls/).
I followed her basic diet pretty strict for a couple of months and felt a lot better although it did not help my neuropathy. I still try to follow her basic diet, buy organic when possible and I started having a green smoothie for breakfast 4 to 5 times a week using some recipes in her book. The first couple of months of staying on the diet was definitely a change for me. It helped me lose some of the extra weight I had picked up due to being on prednisone and now helps me better control the weight. IMHO healthy eating plays a very large part in healthy body.
I really wouldn’t call it a diet. I tend to look at it more as a life style change. I definitely feel it would be worth while to give it a try.
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