Guest guest Posted November 30, 2006 Report Share Posted November 30, 2006 Kathe, Two of my sisters-in-law and 3 nephews have celiac disease. The diet is really not that hard to deal with. The change in the boys since they have changed their diet is incredible. And one of my sisters in law was constantly in the hospital or doctor about one thing or the other before they found out about celiac, and now she is one of the healthiest people I know. She is opening a resturant that focuses on healthy living and will include a gluten free menu. Good luck with the tests. Peggy leaving for NIH Hello, We are leaving for NIH on Saturday, Dec 2nd, and will head home on Wednesday, Dec 3rd. Just thought I would let you know in case anyone else is there and would like to meet up. I will be bringing my soon to be 10 year old, , with me. As well as Isaac. Isaac had GI testing done this week and they said that his small bowel looks like someone who has autoimmune enteropathy or celiac disease. Anyone else with either of these? To me it seems like the celiac is the better of the two. Isaac has not grown and is rapidly dropping on his curve, even with treatment to control his PFS. Kathe and Isaac (2.5 yrs) __________________________________________________________ Check out the new AOL. Most comprehensive set of free safety and security tools, free access to millions of high-quality videos from across the web, free AOL Mail and more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2006 Report Share Posted November 30, 2006 Kathe, We were planning to be at NIH from Sunday to Tuesday, but we got a call last week that Dr. Chitkara (I'm not sure I'm spelling that right), who we'd been scheduled to see, is actually out of the office for the whole month of December (so I hope you're not expecting to see her!) I'm not quite sure how that scheduling glitch happened. It was a bit frustrating, because we had arranged everything through Angel Flight and were also planning to visit friends in land. But I'm also relieved not to have to travel at this busy time of year, and they are now predicting a big snow storm for tomorrow, when we would have been flying on a tiny plane! So we're going February 26 now. But I'm sorry not to get to meet you. I have celiac disease and was diagnosed when I was almost two, so I've been dealing with the diet my whole life. I think it's a lot easier for people who are diagnosed as little kids than it is for adults who know what they have to give up! It's also a lot easier than it used to be. There are so many wonderful gluten free products on the market now! When I was a kid, there was nothing, so my mom had to really make everything from scratch. If Isaac does turn out to have celiac, I'd be happy to answer questions and share any information you think might be helpful. We kept both of our boys on a gluten free diet until they turned two as a precaution, and they both seem to be handling it fine at ages six and three. But I always do wonder if there is any connection between my celiac and 's fever syndrome, especially when I see discussion of possible autoimmune connections to PFS. One thing to make sure you're aware of: the tests for celiac are only accurate when the person is eating gluten, so make sure to do any testing before trying a gluten free diet. Otherwise you might be stuck having to put him back on gluten and make him sick again to get the testing done. Good luck! - On 11/30/06, kathebarch@... <kathebarch@...> wrote: > > > Hello, > We are leaving for NIH on Saturday, Dec 2nd, and will head home on > Wednesday, Dec 3rd. > Isaac had GI testing done this week and they said that his small bowel > looks like someone who has autoimmune enteropathy or celiac disease. Anyone > else with either of these? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2006 Report Share Posted December 2, 2006 We usually see Dr Chitkara but we saw Dr Ramona her partner instead . We also saw Dr Kastner last week and always will. Kiara is the hardest case they have ever seen and she has more then 2 disorders. Re: leaving for NIH Kathe, We were planning to be at NIH from Sunday to Tuesday, but we got a call last week that Dr. Chitkara (I'm not sure I'm spelling that right), who we'd been scheduled to see, is actually out of the office for the whole month of December (so I hope you're not expecting to see her!) I'm not quite sure how that scheduling glitch happened. It was a bit frustrating, because we had arranged everything through Angel Flight and were also planning to visit friends in land. But I'm also relieved not to have to travel at this busy time of year, and they are now predicting a big snow storm for tomorrow, when we would have been flying on a tiny plane! So we're going February 26 now. But I'm sorry not to get to meet you. I have celiac disease and was diagnosed when I was almost two, so I've been dealing with the diet my whole life. I think it's a lot easier for people who are diagnosed as little kids than it is for adults who know what they have to give up! It's also a lot easier than it used to be. There are so many wonderful gluten free products on the market now! When I was a kid, there was nothing, so my mom had to really make everything from scratch. If Isaac does turn out to have celiac, I'd be happy to answer questions and share any information you think might be helpful. We kept both of our boys on a gluten free diet until they turned two as a precaution, and they both seem to be handling it fine at ages six and three. But I always do wonder if there is any connection between my celiac and 's fever syndrome, especially when I see discussion of possible autoimmune connections to PFS. One thing to make sure you're aware of: the tests for celiac are only accurate when the person is eating gluten, so make sure to do any testing before trying a gluten free diet. Otherwise you might be stuck having to put him back on gluten and make him sick again to get the testing done. Good luck! - On 11/30/06, kathebarch@... <kathebarch@...> wrote: > > > Hello, > We are leaving for NIH on Saturday, Dec 2nd, and will head home on > Wednesday, Dec 3rd. > Isaac had GI testing done this week and they said that his small bowel > looks like someone who has autoimmune enteropathy or celiac disease. Anyone > else with either of these? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2007 Report Share Posted January 14, 2007 Hello all, Just wondering if anyone else is at NIH this week? Breana and I arrive Monday clinic Tuesday....consults etc. We hopefully will be leaving Weds night. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2007 Report Share Posted January 14, 2007 I'm sorry, I'm new to this group. What is NIH? <gt4990@...> wrote: Hello all, Just wondering if anyone else is at NIH this week? Breana and I arrive Monday clinic Tuesday....consults etc. We hopefully will be leaving Weds night. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2007 Report Share Posted January 14, 2007 Hi So how are things going with Breanna? So what is the NIH saying and doing now for her? where still in the air everyone stumped to both me and nick. I can inform you more in private. We don't go back until March or April and then we will see what goes on from there. Like I say I can talk to you privately and tell you more. I hope all is well and keep us posted. Take care Sacora mom of Nicolas 13 holly campbell <fivecamp@...> wrote: I'm sorry, I'm new to this group. What is NIH? <gt4990@...> wrote: Hello all, Just wondering if anyone else is at NIH this week? Breana and I arrive Monday clinic Tuesday....consults etc. We hopefully will be leaving Weds night. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2007 Report Share Posted January 14, 2007 HI Sacora.. Im invading this thread lol I am going back to NIH in March.. I cant get them to call me back. i cant ask what is going on with kiara and the enbrel. .i feel very frustrated as her irritability is picked up on teh drug.. i am goingcrazy email me ok? proudmom@... Re: leaving for NIH Hi So how are things going with Breanna? So what is the NIH saying and doing now for her? where still in the air everyone stumped to both me and nick. I can inform you more in private. We don't go back until March or April and then we will see what goes on from there. Like I say I can talk to you privately and tell you more. I hope all is well and keep us posted. Take care Sacora mom of Nicolas 13 holly campbell <fivecamp@...> wrote: I'm sorry, I'm new to this group. What is NIH? <gt4990@...> wrote: Hello all, Just wondering if anyone else is at NIH this week? Breana and I arrive Monday clinic Tuesday....consults etc. We hopefully will be leaving Weds night. Quote Link to comment Share on other sites More sharing options...
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