Collagenous Gastritis

Posted by e @epvb, Mar 27, 2017

I was recently diagnosed with collagenous gastritis which is very rate. I’m looking for anyone else who has similar diagnosis.

@hopeful33250

I hope that your daughter does well, @alison486. How is she currently being treated for this disorder? Any meds or diet suggestions?

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She takes omeprazole daily and has regular blood tests and iron infusions to deal with the side effects of the omeprazole. This does seem to have stabilized her. They talked about topical steroid taken orally but didn't feel it was needed. 🙂

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@alison486

Hi i am in the UK and my daughter was diagnosed with this when she was 13. We don't know of any other uk paediatric cases and even our doctors haven't met any adults even with it (we are lucky enough to attend one of the best in the uk). Do any of you have children with this please who would like to share information? Thank you Alison.

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It sounds like she has improved considerably, @alison486. That must be a relief for you. In my opinion, a mother's heart is more touched by her child's pain than even her own pain. Will you keep in touch?

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@hopeful33250

It sounds like she has improved considerably, @alison486. That must be a relief for you. In my opinion, a mother's heart is more touched by her child's pain than even her own pain. Will you keep in touch?

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yes please, hopefully i will be able to talk to others in the same situation. What makes her case even more scary is she experiences no pain whatsoever and so we have no warning. Diagnosed through biopsies. Thank you Teresa.

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@alison486

Hi i am in the UK and my daughter was diagnosed with this when she was 13. We don't know of any other uk paediatric cases and even our doctors haven't met any adults even with it (we are lucky enough to attend one of the best in the uk). Do any of you have children with this please who would like to share information? Thank you Alison.

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Hi! There is a facebook group called Collagenous gastritis that you might want to join. I have a 17 yr old with it.

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@alison486

Hi i am in the UK and my daughter was diagnosed with this when she was 13. We don't know of any other uk paediatric cases and even our doctors haven't met any adults even with it (we are lucky enough to attend one of the best in the uk). Do any of you have children with this please who would like to share information? Thank you Alison.

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Hello @wendy2001. Would you like to share with @alison486 something about your 17-year-old's diagnosis, symptoms, treatments, etc.? I'm sure it would be helpful to her if your are comfortable doing so.

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Hi i am in the UK and my daughter was diagnosed with this when she was 13. We don't know of any other uk paediatric cases and even our doctors haven't met any adults even with it (we are lucky enough to attend one of the best in the uk). Do any of you have children with this please who would like to share information? Thank you Alison.

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Hi @alison486,

As Teresa @hopeful33250 suggested, I moved your discussion to this existing conversation on collagenous gastritis. I'm tagging @wendyt2018 @jdav @kellye5 @elsanio @buckeyeliz @jwicks @wendy2001 @kacolton @motherkat as all of them have kids who are also struggling with this condition; I'm certain they will return to share more information with you.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

@alison486, has your daughter made any significant changes to her diet? Elsewhere in this discussion, members have shared the benefits of a GAPS diet which was derived from the Specific Carbohydrate Diet (SCD). I'd encourage you to view this Gastroenterology & GI Surgery Page on Connect, https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed/specific-carbohydrate-diet-for-pediatric-ibd-1/ where you can see Mayo Clinic experts talk about diets and other coping strategies.

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@alison486

Thank you it is good to hear there are others. To our knowledge H is the only child in the uk with it. She has had it for 5 years starting with severe symptoms of anaemia and progressing to acute sudden bout of vomiting violently with severe blood loss every 9-12 months. Luckily she is pretty stable now but it would be lovely to hear that hopefully she will grow out it maybe fingers crossed. So little is known about it here. A

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There is also a facebook group called collagenous gastritis

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@wendy2001

There is also a facebook group called collagenous gastritis

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Hello @alison486
I am sorry to hear about your daughter.
I have CG too I had my first large bleed 14 years of age and was rushed to hospital at that time. I am young adult now.
I suffered with gastric pain, especially when or after eating, most of my childhood years.

After my first bleed I had quite a few endoscopies before they properly diagnosed C.G.
Since then, I have been on Budesonide and Omeprazole. I also have regular iron infusions.
My medical team have not pushed me to make changes to my diet but I have read some sufferers say gluten free helps. Gluten free is often advised for auto immune disorders.
Not enough is being done, in the way of research, into this condition.
This is frustrating.

I wish your daughter well.

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@wendy2001

There is also a facebook group called collagenous gastritis

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It is good there is a Facebook Page to direct us to, to connect with other sufferers.
However, I would like to encourage other members CG Page to keep posting here too.
There are some who do not wish to be on FB.
Please keep posting here on Mayo Support too.
Thank you.

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I have a 24 year old who has been diagnosed a few years ago with Collagenous Gastritis. We have been to several doctors and he has had two colonoscopy procedures along with a number of lab work performed with the same year. Our medical out of pocket expenses are racking up to thousands of dollars. We can not find a doctor who can help him. His condition continues to deteriate.

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@rose715

I have a 24 year old who has been diagnosed a few years ago with Collagenous Gastritis. We have been to several doctors and he has had two colonoscopy procedures along with a number of lab work performed with the same year. Our medical out of pocket expenses are racking up to thousands of dollars. We can not find a doctor who can help him. His condition continues to deteriate.

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Hello @rose715 and welcome to Mayo Connect.

I appreciate your posting about your 24 year old who has been diagnosed with CG. I can imagine your concern as well as his.

As you read through the other posts about CG in this discussion group you will see many parents who are discussing this disorder.

On October 23, I posted a video discussion by a doctor at Mayo regarding this rare disorder. I would encourage you to look at it for more information.

What type of symptoms does he have currently? Is he able to maintain his weight? As you may know, Mayo has facilities in Minnesota, Florida as well as Arizona. Is there any possibility that he could be seen by a doctor at Mayo?

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its been while since my last post. We have seen several gi doctors but my daughter has yet to find relief in anything. She was on budesonide, but took herself off of it because it was making her sicker. She still has low iron (anemia) even after 3 sets of iron infusions, usually 5 every 2 weeks, then is good for about 3 months before we are back. She went gluten free and it doesn't seem to have changed the way she feels. Everything makes her sick or puts her in the bathroom a few minutes later. She pretty much given up hope and just wants to continue as long as she can hopefully without stomach bleeds. But me being the curious mom that I am, what are the odds of her ever getting pregnant? Cause I know that was one of her dreams to become a mom, but is it possible of she gives up on treatments? Or could it be possible if she follows treatments? Any info would be greatly appreciated.

Liked by wendyt2018

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@alison486

Hi i am in the UK and my daughter was diagnosed with this when she was 13. We don't know of any other uk paediatric cases and even our doctors haven't met any adults even with it (we are lucky enough to attend one of the best in the uk). Do any of you have children with this please who would like to share information? Thank you Alison.

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Our 15 year old daughter was diagnosed with Collagenous Gastritis just this summer. Her daily symptoms are severe abdominal pain, nausea, heartburn/acid reflux and vomiting (daily unless she is able to just lie still until it passes- even then, that doesn't always work). She has tried dietary restrictions (no dairy, wheat, soy, nuts, eggs, shell fish) and added them back in- NO difference without/NO difference when adding them back in. Stress, even for exciting/good things, and movement do aggravate her symptoms. Omeprazole and ranitidine made her much worse- on 300 mg daily ranitidine last month for a couple weeks, her symptoms were worse than ever- including painful, dizzy spells nearing black outs, large blenching periods and the worst the heartburn/acid reflux has ever been. We have stopped all medications, under her doctor's care here in Oregon, and she is simply back to square 1- original CG symptoms. Also, with the Gastric Emptying Scan, we have found that she also has Gastroparesis.

So, after much research and prayer, we are heading to the Mayo Clinic in Rochester, MN, this coming week, to see a pediatric gastroenterologist. I would love to talk with you personally to see what you have tried and share our stories. I'm not sure how we can connect, but would very much like to. We will know more when we return.

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@mommyof6

its been while since my last post. We have seen several gi doctors but my daughter has yet to find relief in anything. She was on budesonide, but took herself off of it because it was making her sicker. She still has low iron (anemia) even after 3 sets of iron infusions, usually 5 every 2 weeks, then is good for about 3 months before we are back. She went gluten free and it doesn't seem to have changed the way she feels. Everything makes her sick or puts her in the bathroom a few minutes later. She pretty much given up hope and just wants to continue as long as she can hopefully without stomach bleeds. But me being the curious mom that I am, what are the odds of her ever getting pregnant? Cause I know that was one of her dreams to become a mom, but is it possible of she gives up on treatments? Or could it be possible if she follows treatments? Any info would be greatly appreciated.

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My heart just goes out to you! It is brutal watching our children go through so much pain- with so many unknowns. How old is your daughter? How long has it been since she was diagnosed?

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