Anyone else out there with Fructose Intolerance?

jessieszmanda
jessieszmanda Posts: 11 Member
edited September 21 in Motivation and Support
Back in the fall of 09, after going through tests and tests, I was finally diagnosed with Fructose Intolerance. I took the breath test, my base with 16 ppm. And the doctor told me anything over 36 ppm. would have shown I had Fructose Intolerance. I did the test and it came out to 309 ppm. He literally laughed when he told me because he had never seen numbers that high before. I get to be miserable, and it seems to get worse. I have tried the no fructose diet, but that seems to be completely impossible. I went into see another doctor, just a general doctor, and they told me they think Fructose Intolerance is a joke. So now I am wondering if Fructose Intolerance really is a condition, or if I have something worse, like Crohn's or Colitis. My grandmother has ulceritive Colitis, and her sister has Crohn's disease. They told me they started having symptoms about around the same age I am now.

Food goes right through me. Sometimes I can eat and be completely fine, other times I can eat anything and it will go right through me. I have woken up in the middle of the night feeling like I am going to throw up. I also am beginning to get more and more hemorrhoids.

I am just wondering if anyone else out there has Fructose Intolerance. If you do, what are your symptoms? What were your results? and what do you do to help with the pain, and sickness?

Replies

  • PaulaDygert
    PaulaDygert Posts: 148 Member
    I have just found out that fructose is the only sugar I can have. It is very hard to find foods without any sugar :( I understand how you feel, I get sick to my tummy and horrible migraines. The doctor has me doing a 3 week diary then we will go from there on how to treat it.
  • lilmissy2
    lilmissy2 Posts: 595 Member
    Fructose intolerance (well, we usually call it fructose malabsorption but guessing from the testing that you describe that it is the same thing) is a very real thing but often overlooked. It's estimated that some ridiculous percentage like 25% of women have some degree of fructose malabsorption.

    It is a very difficult diet, for those who don't know about it... it's not just cutting out sweet things like you might think, you can't have gluten and loads of different fruit and veg including onions and other basic staples.

    Usually, dietitians who work in this area (not me thank goodness!) will have patients remove all fructose, well all FODMAPS (google it if you are interested) until symptoms subside then gradually add small amounts back in because you should have some tolerance for fructose but it differs person to person.

    Some people think it's worth it to get rid of their symptoms (I guess it depends how bad the symptoms are), some feel they'd rather have the foods and the pain!
  • lilmissy2
    lilmissy2 Posts: 595 Member
    Oh, just as an addition... it's definitely worth pushing your dr to send you for further examinations to make sure there isn't something more sinister happening to your body as well as the fructose malabsorption. Obviously the symptoms can mask other things like the things you mention.
  • jessieszmanda
    jessieszmanda Posts: 11 Member
    I am so back and forth. I went on the no fructose diet for a while after meeting with a dietician, and all I was eating, was literally baked potatos with sour cream and cheese. It got so old, I wanted some good food. And trying to eat at restaurants on that diet was ridiculous, for one nobody knows about it so when you tell them how specific of food you want they look at you like you are crazy, and two when they cook they area always cooking with seasonings like Garlic (which has fructose) or Onions (which also has fructose). I definitely notice I get sick if I eat out, a lot more than I do making my own food. I wish it was so much easier, like lactose intolerance, where you can take a pill to help...
  • BiloxiBelle
    BiloxiBelle Posts: 680 Member
    My sister was JUST diagnosed w/this! At first we thought she had a yeast problem (leaky gut its called), but just came back as testing positive for fructose intolerance. She is just like you in that she feels like her pain/sickness is so severe that it just has to be something else. She's had a colonoscopy, endoscopy...I can't even remember what all she's had at this point...just trying to find out if its something else. Her pain is SEVERE. When we thought it was yeast she did a yeast free diet and felt quite a bit better....but probably b/c many of those same foods are gluten/sugar/wheat free. I don't have any information that can help you except to tell you that you are not alone & I think it's very normal to worry about it being something else. My sis has had a biopsy from her uterus taken as well...like I said, tons of stuff, to try to figure it all out.

    Good luck in your health journey. I hope you find some answers. :flowerforyou:
  • jessieszmanda
    jessieszmanda Posts: 11 Member
    Thank you Kara! Your sister sounds exactly like me! I had a colonoscopy too, they found ileitus (?) I think that is what it is called. I guess it can be a sign of Crohn's Disease, but I guess it wasn't severe enough for them to do more testing for crohn's. Then later I did the breath test for fructose intolerance. I just constantly feel like it has to be something else, but it is interesting to see that other people with it have the same symptoms as me, it must just REALLY effect your digestive system. The only thing that I question is, since it is such a new thing, maybe it is the beginning to something worse, like Crohn's or Colitis.
  • fructmal
    fructmal Posts: 2
    Check out my website www.not-ibs.co.uk for info on fructose malabsorption, hope this helps!
  • fructose_friendly
    fructose_friendly Posts: 4
    Hi all,

    I was diagnosed with fructose mal about a year and a half ago. For me it is very very real. I went to see a leading expert in the field Sue Shepherd here in Australia and got eating fructose friendly down to a fine art, She has a range of cookbooks which you can buy. I feel lots better, massive decrease in symptoms and my diet has improved in general. I noww eat loads of different veggies and have been able to creep some fruits back into my diet in small doses. Not saying it's the case for all IBS sufferers but it's one diagnosis that can provide answers for some. Hope this helps.
  • fructose_friendly
    fructose_friendly Posts: 4
    Thanks fructmal! Basically everything in your link is spot on with my experience. It's great to know people like you are out there with helpful advice :)
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