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Posts (8)

Mar 11, 2018 · Collagenous Gastritis in Digestive Health

Yes thank you all for sharing! Please continue to do so. @wendy2001 I couldn’t agree more that the gut is so integral in healing this. While we discovered my daughter’s CG well before some of the horrible symptoms ( intense pain and bleeding). I know she wasn’t absorbing all her food because of her lack of growth and also fatigue. It is frustrating when Dr’s tell you it’s not related then want to send you on a rabbit trail of other tests. My advice trust your instincts and the test information you have and don’t be afraid to get second opinions. We haven’t had a follow up scope yet ( thinking about contacting Dr. Murray to see if he wants a sample for his research), but good news after 2 months on Wahl’s paleo my daughter is growing! Her energy levels seem better too. Again can’t thank you all enough for being in this group!

Jan 9, 2018 · Collagenous Gastritis in Digestive Health

I’d love that info too. I’ve considered contacting the Mayo Clinic, as my daughter will likely need another Endoscope in 6 months to a year to see how things are progressing and my thought is why not have the Mayo Clinic do it so she and others could be helped? We have a great Children’s Hospital here in Columbus, OH, but there isn’t anyone too familiar with CG. I have good insurance, but would need to know the details about what is covered financially speaking. Also I am very cautious and do not want her going through more scopes and procedures than necessary for her. Doctors here have talked about extra scopes and MRIs with contrast “just to make sure we’re not missing something”. I’m not for putting people, especially kids, through procedures for the sake of putting them through procedures and on my dime. Even with insurance the last scope and visits were thousands.
@kellye5 – You and your son are in my prayers. Zofran was a life saver for me during pregnancy as I was hospitalized for dehydration with both my kids. I sure hope you will be able to get what you need to help him get through this. Don’t give up fighting and searching. My daughter is doing really well and has been a trooper with severe diet changes. Hard to tell yet how much it’s helping, but she is gaining weight, hungry often (which hasn’t been the case)…so both of those good signs. Keep the hope we’ll find some answers together!

Dec 29, 2017 · Collagenous Gastritis in Digestive Health

Thanks John! Helpful links!

Dec 29, 2017 · Collagenous Gastritis in Digestive Health

Hi! Sorry just saw your reply. Yes, we have a positive IgA test for Celiac, but biopsy was inconclusive. My daughter has been g free for approx 6-8 weeks, has increased appetite and some weight gain. At New Year are going Whole 30/Paleo type diet. Hoping to get some improvement.

Nov 22, 2017 · Collagenous Gastritis in Digestive Health

My daughter was recently diagnosed also. Was your daughter ever diagnosed with celiac? My daughter’s celiac markers are up, so she had an endoscopy. Didn’t confirm celiac or not, but they found CG. I’ve been trying to do as much research as I can, but doesn’t seem like there are a lot of successful treatments. Since it appears similar to autoimmune, we’re going to try diet change. We’ve pulled gluten, next dairy and plan to follow the Wahl’s Protocol. Fascinating work Dr Wahl’s is doing and some specialists believe good for all autoimmune disease. We figure it’s worth going for. Try to stay encouraged and connected. Never underestimate your God given Mother’s instinct!!! So grateful to find this group, hope you find it helpful too!

Nov 4, 2017 · Collagenous Gastritis in Digestive Health

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.

Oct 26, 2017 · Collagenous Gastritis in Digestive Health

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.

Oct 17, 2017 · Collagenous Gastritis in Digestive Health

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?!