CSID links

[Charlie Arnold]

Having a few spare minutes a while ago I started googling a bit more on CSID and came across a yahoo help group which I have joined for more info and this paper is one listed in their files which is very interesting. Alot has the usual medical jargon to wade through but a few paragraphs were very helpful, the comment in the treatment section about wheat and potatoes especially with Meg and Kaelin in mind.


f1.grp.yahoofs.com/v1/kNUrUJppFtpF0vvDcwf4VECvZ8HvsL1ZaPz_sgm4DnsgSABw7vx1Gx6HGTeN83FKLleyNvEKAGD7iq7xtouNxbWMx74zMFobpS2QRBBaQ0ilGsINpbCVwm0uloQR/Congenital_Sucrase_Isomaltase_Deficiency.1.pdf

The link to the yahoo group is:

health.groups.yahoo.com/group/CSID/

[FMmom]

Thanks, I've looked for a forum, but have come up empty... I still have a lot of questions about CSID, but at the CSIDinfo site the parent "support" page requests that you send them info about you, your kid, the doctor and nutritionist, the tests results and which version of CSID they have. So, um, I guess since my question is about the testing I'm not allowed to submit... LOL

I jumped over to read through the forum, but you can't see anything until you join. Sigh. Sometimes I just want to lurk...

Despite the weird twist of possible Crohn's, I'm still thinking that CSID is the best match for Kaelin. I'm wondering if CSID could cause inflammation -- I thought I read that somewhere, so I googled "CSID and inflammation" again. I got a posting on an FM forum where someone was questioning symptoms that sound just like Kaelin... Everything looks good but there was this mysterious intestinal inflammation. Someone responded that it could be CSID (it had been ruled out by blood tests) because the only way to test is a biopsy. (health.groups.yahoo.com/group/fructose_malabsorption/message/1564)

Have you joined, Charlie? I was thinking about emailing the participants in the above link -- the thread is over a year old so I'm not sure how productive it would be to open it back up. Emails may be better. And then I saw this and thought maybe going directly to CSID works too. So thanks!

[Charlie Arnold]

Yes, I am a member of several, to be honest the australian FM group are very Sue Shepherd orientated and very "obsessive" if I can say that in the nicest way and I found the format really hard to get proper info and back info from. I didn't join the american one as you can read the messages without joining.

The CSID group I only joined a few weeks ago and is very bogged by spam but they are trying to deal with that. They are very easy to join and you can set your preferences to not receiving every post by email so it doesn't block your inbox. Their files are good, I haven't had time to read through alot of old posts but worth doing in the early days so worth joining to quietly lurk. I thought of trying their starter diet with Meg and trying to decrease starch for a while but that is really hard to do if there is a possibility she has FM as you need fruit and veg to pad out the meal and I really don't know if that is going to be a good thing, I mean if she really does just have bad FM we will end up reactive again, but there again if it is CSID after all then she may be OK. We have 2 weeks left before she starts back at school so going to sit down to have a look at it again today. Maybe I could just try mainly protein and the lowest fructose or low fodmap safe veg first and as low starch as I can make it?

I'll do a search on the FM site and see if I can find the link for you to that post.