Low sucrase levels?

Options
teinepalagi
teinepalagi Posts: 86 Member
in Health and Weight Loss
Was told by the nurse of my son's GI doc that he has low sucrase levels (the enzyme that digests sucrose) and to put him on a "no added sugar" diet. The phone call was short and I didn't ask enough questions. In my oh so technical review of the google literature, I have found that he should not really be eating ANY???? sugar? Like no fruit, milk, etc. We will Iikely do this as a family to help support him.

I imagine SOMEONE in MFP had to do this for themselves or their family.

Can he really get away with just no added sugars (i.e., no candy, sugar beverages, cakes, cookies, etc.) or do we need to go whole hog here and cut everything out?

Any advice would be appreciated.

Replies

  • manderson27
    manderson27 Posts: 3,510 Member
    Options
    I would suggest calling your doctor and asking for an appointment to discuss exactly what this means and get more dietry information, you can't always take things in first time around and now you have googled som info you will have more questions to ask. :flowerforyou:
  • Siege_Tank
    Siege_Tank Posts: 781 Member
    Options
    Why was a nurse telling you this and not a doctor? From what I can read, it takes an intestinal biopsy to confirm this kind of diagnosis.

    Low sucrase doesn't mean NO sucrase. so things that have natural sugars in them are fine. But high powered, sugar loaded stuff is OUT.

    However, if your son didn't have a biopsy, I'd be HIGHLY, HIGHLY, HIGHLY suspicious of this diagnosis, and if it were me, I'd want to confirm it.. because his problems could be caused by something else entirely.

    God I hate doctors. I can't tell you the number of times my family has been misdiagnosed with things. My cousin was put on antibiotics for several YEARS trying to fix what turned out to be a hormone imbalance, she now has digestive trouble because the treatment fried the bacteria in her GI tract. They missed my uncle's cancer diagnosis, my grandfather's sleep apnea..

    I'll get off my soapbox now, but, USE your own judgement and logic. If something doesn't make sense, double and triple check before you start a treatment regimen, especially for exceptionally rare diseases.....

    All it takes is one lab tech burnt out working too much, not paying attention... a lot of that going around lately..

    ETA: I shouldn't say I hate doctors, I hate lazy and or incompetent people who have no business holding a medical license
  • Siege_Tank
    Siege_Tank Posts: 781 Member
    Options
    http://www.sucraid.net/about-csid

    Why was the conversation with the nurse so short? They have enzyme replacement therapies out now, different kinds of treatment options, ways of managing the deficiency so that there is less of an impact on a diet.

    It seems to me that the diagnosis shouldn't have been given over the phone by a nurse, a doctor should have discussed treatment options with you. This sounds awfully fishy. Are you sure the place you are going is competent?
  • teinepalagi
    teinepalagi Posts: 86 Member
    Options
    He had an endoscopy with biopsy and that's how they determined the low levels. I'm not sure why just the nurse called.....thanks for the info! I appreciate it!
  • Siege_Tank
    Siege_Tank Posts: 781 Member
    Options
    Sure thing. I'll keep my fingers crossed for you! Hopefully you'll find a treatment that works!

    Our western diet has gotten a bit crazy.. when you think about it, how do you not eat sugaaar?

Categories