I was so excited to find this website, only to be bummed when I saw that the last posts were from a year ago. Is anyone out there now that is living with fructose malabsorption???

I am out there, Here I am. Don't worry that the post are old. They email people when a new person with same disease joins. I have had this since 1982. I've got it under control pretty good now. I function well most of the time. Nancy

Oh yeah! My eight year old daughter just got diagnosed a few days ago. They are also checking into celiac disease for her. They have put her on the FODMAP diet. Is that what you do? I saw on your profile that you can't work because of it-the doctors told me that the FODMAP diet will help her feel better within a few weeks-is that not the case for you?

Hi, After awhile on the diet I was much better. Prior to diet I was unable to function,drive or hardly do anything always having low blood sugar attacks. I am not familiar with that diet but the oen Im on really helped me. I drive now, function ok most days but its a lifelong thing to handle like diabetes. No sugar, no fruit, no sugar subsitutes. and I have to eat often. Nancy

I looked up the fodmap diet and it is for IBS so I don't know why they would put her on that. She must not eat any form of sugar or sugar subsitute or fruit. none. check all ingredient labels. and she must eat small amounts of approved foods often to keep her blood sugar level. Its a balance, no sugar highs no sugar lows. Getting a glucose test machine really helped me. You know, like diabetics use. Let me know how she is. Best wishes, Nancy

They put her strictly on the FODMAP diet for eight weeks. After 8 weeks they will slowly start to reintroduce some foods and see how she tolerates them. The diet is for IBS but they said because she was having so many issues with intestinal blockages from the fructose malabsorption that her intestines were probably stretched and this diet and miralax daily would help her get back to normal. Sue Shephard, out of Australia, created the diet and it's worked for people with IBS and/or lactose or fructose intolerance. So you eat no fruit at all? Thats really extreme! They are allowing my daughter two servings of specific fruits a day. Bananas, strawberries, raspberries, blackberries and kiwis are a few of them that are allowed. She also has to eat them with a protein so it will help the fruit get absorbed. I haven't heard anything about blood sugar levels getting low or high. Are you also diabetic?

No, I am not diabetic. I have fructose intolerance. The symptoms are extreme low blood sugar. I cannot eat any sugar as my body can not process it. I dont understand that your daughter doesnt have low blood sugar. That is what fructose intolerance is about. I live in USA in the midwest. Are you in a different country? Wish I could talk to you. I got seizures from low blood sugar. If you look up fructose malabsorbation or intolerannce it will tell you about low blood sugarattacks, seizures, etc. I dont understadn what your daughter has if she doesnt get low bloos sugar attacks. Nancy

Well, now I'm confused. I've never heard anything about low blood sugar, seizures, etc. We live in Washington state. The way they explained it to me is that the fructose molecules aren't getting through the membrane of the small intestine into the bloodstream, so they go straight down into the lower parts of the intestine and bacteria "eats" them and more and more bacteria grows. If you can't eat any sugar, then you have malabsorption of all sugar, right? ie dextrose, glucose, etc. I was told that dextrose and glucose are okay.

dextrose and glucose are the only two i can have in careful amounts and monitiored. I'm in Iowa. I'd like to talk to you about this. Im tired of going bk and forth on rareshare. My personal email in nance898@aol.com maybe we can take it from there. thanks, nancy

I think I've figured out the difference. I'll email you.