Hello,
i'm sorry to hear about your daughter. I have constipation as well as CG and gluten free has helped a little bit, less refined sugar has also helped some. I haven't found a specific diet though that helps both. If her constipation isn't so sever try fiborous foods but I was told that because mine was more sever I should stay away from fiborous foods. i have been doing Pelvic floor physical therapy maybe some stretches or exercised would help. I hope she feels better. It's a tough situation but try to keep her positive and distracted it helps so much.
she has had it since she was 10 months old. They recently have done anal botox injections with pelvic floor and the PFT stated that there is nothing she can further help her with, but the injections have helped her so much for some weird reason. We have tried the gluten free diet and it does nothing sadly. Since she was a baby, we have tried so many different diets nothing changes, and her stomach pain and constipation stays that same.
Hello, Sorry to hear about your diagnosis. It’s really hard to know how to best treat CG I because of how rare it is. This has been my 22 year old daughter’s experience with CG for the past 9 years:
She initially had symptoms of vomiting, stomach pain, bloating, slow stomach emptying and constipation. Her symptoms were treated with sucralfate and omeprazole for many years with pretty good relief. She tried an immunosuppressant (forgot name) with no change in symptoms. Currently she is weaning herself off omeprazole because long term use can have its own set of problems. She is no longer on sucralfate either. She tries to eat small healthy meals with fruits and vegetables and to pay attention to some foods that make her symptoms worse. Stress also seems to be a factor, she tries to exercise as much as she is able. She is now on Magnesium supplement, takes Tums occasionally, food-based iron supplement also because of chronic anemia (food-based to avoid more constipation). She has had follow-up endoscopies and hasn’t seen much change in her stomach lining. Sometimes she has to take Smooth Move tea and Miralax if she is especially constipated. She was seen by a homeopathic doctor to get another perspective, but was only minimally helpful. Her symptoms seem to be stabilized for now, but does have good and bad days. She has learned to live with her condition, but has taken some time to accept it. I wish you well in your journey to learn more about CG, I’m thankful for hearing about others in this community and any info that might be useful or treatments that might make my daughter feel better.
Hello, my name is Simon and my fiancé Sian has just been diagnosed with CG.
We live in south UK.
Sian is experiencing stomach pain, diarrhea, bleeding and weight loss are all present.
Not currently on any medication and are reaching out for help of other CG patients as to which doctors they have visited, and which medications have worked the best?
Hope to hear from you all soon.
Hello, my name is Simon and my fiancé Sian has just been diagnosed with CG.
We live in south UK.
Sian is experiencing stomach pain, diarrhea, bleeding and weight loss are all present.
Not currently on any medication and are reaching out for help of other CG patients as to which doctors they have visited, and which medications have worked the best?
Hope to hear from you all soon.
I'm in the United States and was diagnosed with Collagenous Colitis this past October. My Gastroenterologist prescribed Budesonide to address the inflammation. Budesonide is a steroid that is colon-specific and does not have the side effects that come with other steroids like Prednisone. I'd suggest that your fiancee follow-up with the doctor who diagnosed her and discuss Budesonide as a treatment.
Hello, my name is Simon and my fiancé Sian has just been diagnosed with CG.
We live in south UK.
Sian is experiencing stomach pain, diarrhea, bleeding and weight loss are all present.
Not currently on any medication and are reaching out for help of other CG patients as to which doctors they have visited, and which medications have worked the best?
Hope to hear from you all soon.
I tried Budesonide and it didn’t help too much but try sticking to a strict gluten free diet and test for celiac. My gastroenterologist told me they often come together and maybe it would ease some symptoms. Smelling peppermint oil and using pressure points for nausea is helpful for me.
I tried Budesonide and it didn’t help too much but try sticking to a strict gluten free diet and test for celiac. My gastroenterologist told me they often come together and maybe it would ease some symptoms. Smelling peppermint oil and using pressure points for nausea is helpful for me.
I tried Budesonide and it didn’t help too much but try sticking to a strict gluten free diet and test for celiac. My gastroenterologist told me they often come together and maybe it would ease some symptoms. Smelling peppermint oil and using pressure points for nausea is helpful for me.
Thankyou, we'll try.
She has been subscribed then same, so let's see how it goes.
Did your gastro Dr ask you to try any other meds after the budesanide?
no, there were no other medicines for the collagenous gastritis that my doctor recommended but i don't think mine is as severe as your fiances. My doctor did say that celiac can make the collagenous gastritis worse, He is also looking into the possibility of chrons disease as they can often coincide.
I have been diagnosed in July ‘19 with Collagenous Gastritis. My second endoscopy in November reconfirmed the diagnosis. Initially, steroids specific for the gut and Protonix was prescribed. Now I am on Protonix. Due to the rarity of this disease, there is not a standardized protocol for treatment. My GI doctor suggested I receive a second opinion for treatment. Good luck finding a facility who specializes in CG. I was wondering, is there another patient out there with treatment modalities that have worked for them besides Protonix and a gluten free diet? Thanks.
Anyone else diagnosed with Collagenous Sprue, Collagenous Colitis, and Collagenous Gastritis (at different times over the years)? Also, is there a medical name/term for all three together?
Does anyone know how one may acquire CG. This is one of the diagnoses that has been brought up to me as a reason for my loose stools (twelve weeks since finishing a round of Clindimycin). CDiff has tested negative twice. My next option is a colonoscopy. This is all frightening. Was healthy until this happened.
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she has had it since she was 10 months old. They recently have done anal botox injections with pelvic floor and the PFT stated that there is nothing she can further help her with, but the injections have helped her so much for some weird reason. We have tried the gluten free diet and it does nothing sadly. Since she was a baby, we have tried so many different diets nothing changes, and her stomach pain and constipation stays that same.
Hello, Sorry to hear about your diagnosis. It’s really hard to know how to best treat CG I because of how rare it is. This has been my 22 year old daughter’s experience with CG for the past 9 years:
She initially had symptoms of vomiting, stomach pain, bloating, slow stomach emptying and constipation. Her symptoms were treated with sucralfate and omeprazole for many years with pretty good relief. She tried an immunosuppressant (forgot name) with no change in symptoms. Currently she is weaning herself off omeprazole because long term use can have its own set of problems. She is no longer on sucralfate either. She tries to eat small healthy meals with fruits and vegetables and to pay attention to some foods that make her symptoms worse. Stress also seems to be a factor, she tries to exercise as much as she is able. She is now on Magnesium supplement, takes Tums occasionally, food-based iron supplement also because of chronic anemia (food-based to avoid more constipation). She has had follow-up endoscopies and hasn’t seen much change in her stomach lining. Sometimes she has to take Smooth Move tea and Miralax if she is especially constipated. She was seen by a homeopathic doctor to get another perspective, but was only minimally helpful. Her symptoms seem to be stabilized for now, but does have good and bad days. She has learned to live with her condition, but has taken some time to accept it. I wish you well in your journey to learn more about CG, I’m thankful for hearing about others in this community and any info that might be useful or treatments that might make my daughter feel better.
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1 ReactionHello, my name is Simon and my fiancé Sian has just been diagnosed with CG.
We live in south UK.
Sian is experiencing stomach pain, diarrhea, bleeding and weight loss are all present.
Not currently on any medication and are reaching out for help of other CG patients as to which doctors they have visited, and which medications have worked the best?
Hope to hear from you all soon.
I'm in the United States and was diagnosed with Collagenous Colitis this past October. My Gastroenterologist prescribed Budesonide to address the inflammation. Budesonide is a steroid that is colon-specific and does not have the side effects that come with other steroids like Prednisone. I'd suggest that your fiancee follow-up with the doctor who diagnosed her and discuss Budesonide as a treatment.
I tried Budesonide and it didn’t help too much but try sticking to a strict gluten free diet and test for celiac. My gastroenterologist told me they often come together and maybe it would ease some symptoms. Smelling peppermint oil and using pressure points for nausea is helpful for me.
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Helpful -
Hug
1 ReactionBut definitely still ask your doctor about Budesonide it may help her.
Thankyou, we'll try.
She has been subscribed then same, so let's see how it goes.
Did your gastro Dr ask you to try any other meds after the budesanide?
no, there were no other medicines for the collagenous gastritis that my doctor recommended but i don't think mine is as severe as your fiances. My doctor did say that celiac can make the collagenous gastritis worse, He is also looking into the possibility of chrons disease as they can often coincide.
Hello,
Anyone else diagnosed with Collagenous Sprue, Collagenous Colitis, and Collagenous Gastritis (at different times over the years)? Also, is there a medical name/term for all three together?
Thank you.
They can only diagnosis Collagenous Colitis by a bowel biopsy during a colonoscopy