Getting Closer to a Diagnosis ...

[meaniejean]

So, we met with the nutritionist yesterday. She was very nice and sincerely wants to help. The information she had for us was for DFI and didn't really apply to our situation. For example, sucrose is on the safe list, as well as berries and pineapple, etc - all definite no nos for us. The list even said that we may be able to do about 12 oz. of HFCS with a meal - OMG - no way! I can't even imagine having a can of real soda - I would be on a ball on the floor whether I ate something with it or not wouldn't matter in the least.
Anyway, she is going to help us make sure that Calvin is getting enough calories, etc.

At one point during the visit she mentioned that Calvin's urine test detected fructose. Is it possible for a non-HFI person to have fructose in their urine? It's not like he has been ingesting large quantities of juice - and this sample was taken 4 days after his fructose test. Should be hearing from the GI doc today.

[meaniejean]

Well, apparently the nutritionist was wrong about the urine fructose. I just saw the results and it says negative. This makes a lot more sense considering he had not had any fructose for 4 days and before that he had been very restricted other than the breath test.

Saw our primary doc for my little ones 1 year well baby checkup today. He knows nothing about fructose issues of course - not that I would really expect him to.

I really don't know how I would be handling this right now if it were not for the wise, been-there-done-that group on this board. I would be completely lost ...

thank you, thank you, thank you!