Thank you for your speedy and comprehensive response. I really appreciate it! I will definitely make contact with Mayo Clinic in London. The iron tablets are controlling his CG, but once he ceased taking them earlier this year, he relapsed with severe anaemia, so we are back on the supplements and they have just added a PPI twice a day as well. He has no obvious other symptoms other than lethargy, which impacts his ability to play sport, socialise etc. I am glad to find this resource/forum, as my doctor in Spain has very limited knowledge of the condition.
Hi @luft80. I just ran across this article listing top specialized hospitals worldwide. I sorted by speciality to find top 150 gastroenterology. Mayo tops the list and there are several closer to you in Spain, even Barcelona. The article explains ranking criteria and I do not know more beyond that. It may be worth digging into some of them a bit.
I am interested to hear more as you take steps through the process of finding a top specialist for your son’s collagenous gastritis. Please come back and update.
Hi @luft80. I just ran across this article listing top specialized hospitals worldwide. I sorted by speciality to find top 150 gastroenterology. Mayo tops the list and there are several closer to you in Spain, even Barcelona. The article explains ranking criteria and I do not know more beyond that. It may be worth digging into some of them a bit.
I am interested to hear more as you take steps through the process of finding a top specialist for your son’s collagenous gastritis. Please come back and update.
Thank you so much! I can see that the hospital that we are being referred to is on the list, which is very reassuring. I will come back and update once I know more, as it may help others in this forum with pediatric questions as well.
I've been on and off of Budesonide for 3 years and always relapsing. My GI dr now has recommended infusion therapy, Inflecta/Remicade. Has anyone tried this and if so, was it successful?
When I was diagnosed, I had had diarrhea for about a year. Weight started at 186 down to 143. The GI said it was very rare, treated with Budesonide and he said it could come back, but he didn’t think it would. I finished my Budesonide and immediately started with the watery diarrhea again. Put me back on Budesonide for a month. This time I was fine for about 4 months. Then it came back again. It’s been following that 3-4 month break and flare. I also have gastroparesis. This complicates things. One says I need fiber, the other recommends low fiber. Have an appointment tomorrow and we will see what happens.
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Hi @luft80. I just ran across this article listing top specialized hospitals worldwide. I sorted by speciality to find top 150 gastroenterology. Mayo tops the list and there are several closer to you in Spain, even Barcelona. The article explains ranking criteria and I do not know more beyond that. It may be worth digging into some of them a bit.
Newsweek Worlds Best Specialized Hospitals: https://rankings.newsweek.com/worlds-best-specialized-hospitals-2026/gastroenterology
I am interested to hear more as you take steps through the process of finding a top specialist for your son’s collagenous gastritis. Please come back and update.
Thank you so much! I can see that the hospital that we are being referred to is on the list, which is very reassuring. I will come back and update once I know more, as it may help others in this forum with pediatric questions as well.
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2 ReactionsI've been on and off of Budesonide for 3 years and always relapsing. My GI dr now has recommended infusion therapy, Inflecta/Remicade. Has anyone tried this and if so, was it successful?
@1961deb
How did your appt go?
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