Hello @looloo,

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…

@kaliwebster

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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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.

@kaliwebster

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 @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.

John

@kaliwebster

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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Thank you @johnbishop. Hoping it will help all of us. I agree, seems like a lifestyle choice and change. Appreciate you taking time to respond.

@buckeyeliz

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?!

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Hi @buckeyeliz,

I’m tagging @kathyzendner and @josephkahn as they’ve written about the gastric emptying study; I’m certain they will have some more insight for your daughter.
@buckeyeliz, may i ask if other autoimmune conditions such as celiac disease have been ruled out?

@buckeyeliz

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?!

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I will be starting homeopathy next week. I will update everyone with any progress

@kaliwebster I am interested in what symptoms you are having other than direct stomach aches that led to autoimmune disorder thoughts. I was tested for autoimmune disorders but they couldn’t find anything. I have had muscle aches in my legs for a year that can’t be attributed to the CG. My cheeks get hot and red occasionally as well. I get weak and feel shaky at times but am told this isn’t a CG symptom. Like you, so many of my other tests have come back negative. I too get stomach aches no matter what it is that I eat. I keep to a very bland diet but that doesn’t matter. Thank you for your thoughts.

Hi everyone, I am SO glad to have found this page and everyones responses! There is next to NO research out there or people that have CG so this is SO great and comforting to find!
I am an odd CG case (but aren’t we all?), I am right between the peds and adult category- since I am 19 I showed symptoms of both categories. I was diagnosed with CG last year (19 years old). But I had gone through millions of tests and endoscopy, colonoscopys etc, since the age of 15. It was not until I was at college and my ankles and lower legs got extremely swollen that I went to the hospital and underwent blood work right away. That was when they determined I was severally anemic (needed 4 blood transfusions and 2 iron transfusions right away). They also realized I was internally bleeding. So I got an endoscopy and that’s when the doc searched and searched for something wrong, and when he went a little further he realized the collagen as well as the lining of my stomach was frayed and would shed off when he tapped it with the endoscope. I was in the hospital for a week, and then recovery was long and slow since I had to build back up all my iron, blood and other levels as well as endurance. I was put on acid blockers, CARAFATE, PROTONIX and ferrous sulfate. As well as a recommended iron rich healthy diet (but I am an extremely healthy eater and very active to begin with). I noticed NO help with any of the meds EXCEPT the ferrous sulfate because that helped build back up my iron- however I stopped taking it at my own decision because I felt myself getting hot and other side effects of too much iron (yes, it is a thing!!!). And long behold my next blood work test showed more than enough iron and everything looked good. I have not gotten an endoscopy since last year, just blood work through out the year. However, I believe I am relapsing because I am gaining all the symptoms I had prior to my diagnosis. These include, extreme fatigue, slower reactions, insanely painful abdominal pain, sensitive to every food, bloating, stomach gurgling, daily loose stools, waking up with very puffy eyelids (ANYONE ELSE??), no motivation to work out, nausea, stomach cramps and my legs and feet fall asleep a great deal. Acidic foods, dairy, greedy foods, alcohol etc. destroy my insides…
I am meeting with my doctor (the one who diagnosed me with CG) next week and am going to bring MANY questions you all proposed in here! Such as gut bacteria’s role, herbal supplements to look into, autoimmune diseases and TRY to establish an effective treatment plan. I do believe DIET is huge in CG, but I have always ate healthy (very healthy) and extremely active. I do limit gluten, dairy and never eat friend or greasy foods. But there has to be more than a healthy diet to help all of us not go through these insanely painful flares/relapses/food intolerances. Even when I am eating healthy I go through these painful symptoms! CASE studies SHOULD be done on us and SOON – please! I am a college student who HATES CG and will do ANYTHING and EVERYTHING to help discover more about it. Let me know if anyone has any other questions or ideas or similar situations!

My Daughter 12 years old has just been diagnosed with Collagenous gastritis. The gastro Dr. she is now seeing also has another pediatric case of Collagenous gastritis. She was diagnosed 10.12.17 I am not sure what I have in store. She does not have any symptoms of stomach pain. But prior to finding out this diagnosis she has had 11 blood transfusions and went into bone marrow failure – Aplastic Anemia – which is auto immune

does anyone know of a clinic study to support this Disease. treatment on the horizon. “Auto Immune?”

~ Loving mother of Jocelynne

@jjdenaro

My Daughter 12 years old has just been diagnosed with Collagenous gastritis. The gastro Dr. she is now seeing also has another pediatric case of Collagenous gastritis. She was diagnosed 10.12.17 I am not sure what I have in store. She does not have any symptoms of stomach pain. But prior to finding out this diagnosis she has had 11 blood transfusions and went into bone marrow failure – Aplastic Anemia – which is auto immune

does anyone know of a clinic study to support this Disease. treatment on the horizon. “Auto Immune?”

~ Loving mother of Jocelynne

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Hello @jjdenaro, welcome to Connect. I’m glad you found us and hoping you can find some help for your daughter. I found one clinical trial that includes collagenous gastritis at Mayo Clinic Rochester. Here is a link to the overview and contact information:
http://www.mayo.edu/research/clinical-trials/cls-20314533
John

@jng123

Hi everyone, I am SO glad to have found this page and everyones responses! There is next to NO research out there or people that have CG so this is SO great and comforting to find!
I am an odd CG case (but aren’t we all?), I am right between the peds and adult category- since I am 19 I showed symptoms of both categories. I was diagnosed with CG last year (19 years old). But I had gone through millions of tests and endoscopy, colonoscopys etc, since the age of 15. It was not until I was at college and my ankles and lower legs got extremely swollen that I went to the hospital and underwent blood work right away. That was when they determined I was severally anemic (needed 4 blood transfusions and 2 iron transfusions right away). They also realized I was internally bleeding. So I got an endoscopy and that’s when the doc searched and searched for something wrong, and when he went a little further he realized the collagen as well as the lining of my stomach was frayed and would shed off when he tapped it with the endoscope. I was in the hospital for a week, and then recovery was long and slow since I had to build back up all my iron, blood and other levels as well as endurance. I was put on acid blockers, CARAFATE, PROTONIX and ferrous sulfate. As well as a recommended iron rich healthy diet (but I am an extremely healthy eater and very active to begin with). I noticed NO help with any of the meds EXCEPT the ferrous sulfate because that helped build back up my iron- however I stopped taking it at my own decision because I felt myself getting hot and other side effects of too much iron (yes, it is a thing!!!). And long behold my next blood work test showed more than enough iron and everything looked good. I have not gotten an endoscopy since last year, just blood work through out the year. However, I believe I am relapsing because I am gaining all the symptoms I had prior to my diagnosis. These include, extreme fatigue, slower reactions, insanely painful abdominal pain, sensitive to every food, bloating, stomach gurgling, daily loose stools, waking up with very puffy eyelids (ANYONE ELSE??), no motivation to work out, nausea, stomach cramps and my legs and feet fall asleep a great deal. Acidic foods, dairy, greedy foods, alcohol etc. destroy my insides…
I am meeting with my doctor (the one who diagnosed me with CG) next week and am going to bring MANY questions you all proposed in here! Such as gut bacteria’s role, herbal supplements to look into, autoimmune diseases and TRY to establish an effective treatment plan. I do believe DIET is huge in CG, but I have always ate healthy (very healthy) and extremely active. I do limit gluten, dairy and never eat friend or greasy foods. But there has to be more than a healthy diet to help all of us not go through these insanely painful flares/relapses/food intolerances. Even when I am eating healthy I go through these painful symptoms! CASE studies SHOULD be done on us and SOON – please! I am a college student who HATES CG and will do ANYTHING and EVERYTHING to help discover more about it. Let me know if anyone has any other questions or ideas or similar situations!

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Thanks for your post and sharing. I understand what you’re saying and feel your pain. I have the symptoms you describe, nausea gurgling vomiting extreme fatigue aches and pains puffy eyes etc.

@kaliwebster

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 @buckeyeliz! I used to take prescription antacids everyday, but have recently just taken them when I have pain. I’ve definitely changed my diet though. I don’t eat anything fried, or heavily fattened. I’ve found that, in general, foods that are hard to digest cause the most problems. I’ve actually never consciously cut foods out (as I’m a huge foody), but looking at my diet now compared to 7 years ago, a lot has changed subconsciously just to avoid pain. I’ve heard that a lot of people try a gluten-free diet though!

@jng123

Hi everyone, I am SO glad to have found this page and everyones responses! There is next to NO research out there or people that have CG so this is SO great and comforting to find!
I am an odd CG case (but aren’t we all?), I am right between the peds and adult category- since I am 19 I showed symptoms of both categories. I was diagnosed with CG last year (19 years old). But I had gone through millions of tests and endoscopy, colonoscopys etc, since the age of 15. It was not until I was at college and my ankles and lower legs got extremely swollen that I went to the hospital and underwent blood work right away. That was when they determined I was severally anemic (needed 4 blood transfusions and 2 iron transfusions right away). They also realized I was internally bleeding. So I got an endoscopy and that’s when the doc searched and searched for something wrong, and when he went a little further he realized the collagen as well as the lining of my stomach was frayed and would shed off when he tapped it with the endoscope. I was in the hospital for a week, and then recovery was long and slow since I had to build back up all my iron, blood and other levels as well as endurance. I was put on acid blockers, CARAFATE, PROTONIX and ferrous sulfate. As well as a recommended iron rich healthy diet (but I am an extremely healthy eater and very active to begin with). I noticed NO help with any of the meds EXCEPT the ferrous sulfate because that helped build back up my iron- however I stopped taking it at my own decision because I felt myself getting hot and other side effects of too much iron (yes, it is a thing!!!). And long behold my next blood work test showed more than enough iron and everything looked good. I have not gotten an endoscopy since last year, just blood work through out the year. However, I believe I am relapsing because I am gaining all the symptoms I had prior to my diagnosis. These include, extreme fatigue, slower reactions, insanely painful abdominal pain, sensitive to every food, bloating, stomach gurgling, daily loose stools, waking up with very puffy eyelids (ANYONE ELSE??), no motivation to work out, nausea, stomach cramps and my legs and feet fall asleep a great deal. Acidic foods, dairy, greedy foods, alcohol etc. destroy my insides…
I am meeting with my doctor (the one who diagnosed me with CG) next week and am going to bring MANY questions you all proposed in here! Such as gut bacteria’s role, herbal supplements to look into, autoimmune diseases and TRY to establish an effective treatment plan. I do believe DIET is huge in CG, but I have always ate healthy (very healthy) and extremely active. I do limit gluten, dairy and never eat friend or greasy foods. But there has to be more than a healthy diet to help all of us not go through these insanely painful flares/relapses/food intolerances. Even when I am eating healthy I go through these painful symptoms! CASE studies SHOULD be done on us and SOON – please! I am a college student who HATES CG and will do ANYTHING and EVERYTHING to help discover more about it. Let me know if anyone has any other questions or ideas or similar situations!

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Hi @jng123. Where are you being treated? I am a college student as well and am being treated at Mayo Clinic. I was first diagnosed with CG when I was almost 19. I have had it over a year. I was severely anemic at first and had 2 iron infusions as well. My iron has been stable for almost a year now. I have daily stomach aches, abdominal pain and am sensitive to all foods as you describe. I have a limited diet but there is no telling what will set my stomach off. I tried gluten free diet but that did not work. Diet does not seem to affect me. I have muscle aches in my legs that are unexplained but I do not get the feeling of them falling asleep. After weeks of budesonide, then prednisone (absolutely awful drug), an endoscopy showed no collagen in April. I continued on budesonide after that but now, after 6 months of taking it, the collagen is back. I continue to take protonix 2x day. Most of my symptoms never actually went away. I am fatigued and have bouts of weak periods. I also get headaches. Would love to know what more you are experiencing and how you are being treated.