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Fructose Malabsorption--Dietician

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Irritable Bowel Syndrome
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Posted 3/17/2011 5:48 PM (GMT 0)
Hi,

I was recently diagnosed with Fructose Malabsorption and am having a hard time figuring out what to eat-as there is a lot of conflicting info out there!  I went to Mayo and saw a dietician there who was not very helpful.  Does anyone know of a good nutritionist/specialist?  I am located in Phoenix, but would be willing to travel to see someone good!

Thanks!

Mindy

Posted 3/17/2011 9:03 PM (GMT 0)
mindyiac

do you have "Hereditary fructose intolerance" OR Fructose malabsorption?

http://www.mayoclinic.com/health/fructose-intolerance/AN01574

Find a registered dietitian they are more knowledgeable.

There is also

the book

Fructose Malabsorption: The Survival Guide

although I am not familar with it.
Posted 3/17/2011 9:05 PM (GMT 0)
I have fructose malabsorption. i will check out the book. thanks. i was surprised that the dietician from the mayo clinic was not more helpful with me. she seemed clueless.
Posted 3/17/2011 9:07 PM (GMT 0)
Find another register dietician though, not really a nutritionist.

That is odd, they should know.
Posted 9/20/2011 9:12 PM (GMT 0)
Hi mindyac and other folks who have been diagnosed with Fructose Malabsorption.

 

I face the same issue you do as I was diagnosed 5 weeks ago as a fructose malabsorber (hydrogen breath tests positive for fructose, negative for lactose.. .having SBIO test tomorrow). I've been on the FODMAP diet, and find it extremely restrictive and confusing. Safe and unsafe food information from my GI doc was sparse and some items inconsistent with other info out there. I am having problems with "safe food" as well. Quanity seems critical. 

 

There doesn't seem to be a lot of info published in the US. Is this a common disorder but people (like me) go undiagnosed with these horrible chronic symptoms forever? Many years ago, I was diagnosed with IBS but no help or instructions as to how to feel better came with that "catch all" diagnosis. I am relieved to finally have the right diagnosis to explain why I've been suffering. Doc said many people who have an IBS diagnosis actually have malabsorption issues that haven't yet been diagnosed. The testing for FM was easy enough (although it takes 3 hours for each test). I wonder why other docs didn't test me for it over the years...especially when they didn't seem interested in helping me relieve the so called IBS symptoms. Getting this diagnosis 10 years ago would have saved me from a lot of pain and distress. I've also been vit  D, calcium, and iron deficient for many years also with no one testing me for absorption. I wonder how much  medicine didn't get absorpbed over the years?

 

Anyway, sorry you have FM also and can relate to your concerns. I plan to ask for a consult to a dietican and I pray that that person has experience with FM. I don't need someone who will add to my confusion. I need better food lists, meals plans, and good recipes. Would love to hear from you to see how you have been doing.

Hopefully, I receive comments here on this forum. Thanks for reading.

Posted 9/21/2011 12:26 AM (GMT 0)
Hi,
You know I have been feeling terrific since July/August and I will share with you what has happened. I was SO sick. Eating the darn FODMAP diet (which is so confusing), spending half my life on the internet searching for answers, etc. I tested negative for SIBO and lactose and positive for fructose. In July I got a random UTI and was prescribed Cirpo. Within two weeks, I was fine. And months later, I am eating whatever I want. I asked my dr @ mayo why the sudden recovery when I tested negative for SIBO and he responded by saying sometimes tests are wrong. Dont hold a lot of weight on the tests. If i ever get those horrible symptoms again, I will force my doc for cipro asap. hope that helps!!
Posted 11/21/2011 3:20 AM (GMT 0)
Hi Mindyiac,

Thanks for your reply and I 'm glad you feel better. Following up from my post to you...I did test positive for SIBO. I was prescribed the antibiotic Refaximin 3 times daily for 2 weeks. I've maintained the FODMAP diet for fructose Malabsorption (as challenging and restrictive as it it). Having both problems is like a double whammy. No wonder I was so sick. Thankfully, I have felt better and been free of symptoms. I've stopped losing weight which was a concern. My weight seems to have stabilized. I'm told the bacteria will come back at some point in time and I'll have to be treated again.

 

I'm finding that if I introduce an "unsafe food" into my diet the dreaded FM symptoms come back immediately. I have experimented with some foods without success. I'd rather be symptom free so I press on with this confusing FODMAP diet.

 

I'm still searching the internet for help with diet plans, recipes, etc. Not finding much help. My GI doc said he wasn't aware of an area dietican who had experience with FODMAP and FM. I was hoping he could refer me to one so that was a disappointment. Wishing you continued better health.

Posted 7/6/2013 2:05 PM (GMT 0)
Follow-up to these posts after having been on the low-FODMAP diet for my GI symptoms for 2 years....
I am doing GREAT as long as I adher to this diet. Yes, it was initially very daunting as there wasn't easy access to updated, accurate information. I was eventually fortunate to find a dietican/nutritionist who was trained in Australia at Monash University where the FODMAP food testing takes place. I traveled from CT to the Boston area to meet with her. With her guidance, I now have the latest, greatest information so the diet is really working for me. There is a list online somewhere if you need a dietician who has been trained. Sorry, I can't remember where I found that.
New foods are tested periodically so overtime, some new items have been added to the 'safe' list...yeah!

Portion sizes of 'safe' foods are critical, and you must understand that the food categories you comsume from in one meal are cummulative. If you exceed what your system can tolerate, you WILL experience symptoms.

It had taken me a long time to get to where I am right now...feeling so much better...normal if you will. It takes knowledge, diligence and planning though. But, it's all worth it to be symptom-free.

I had 3 episodes of re-occuring SIBO that required treatment...with good results...just to let you know that bacteria never really ever goes away for good...drat! Also, even though I tested negative for Lactose Intolerance...I just CANNOT tolerated milk products. I use lactose free milk and yogurt and hard cheeses are lower in lactose so a small amount doesn't usually bother me.

Feel free to ask me questions about Fructose Malabsorption, SIBO, and the low-FODMAP diet. If I can share anything that helps someone else, I'm happy to do it. :-)
Posted 5/8/2017 4:06 AM (GMT 0)
i was recently diagnode with fm and the fodmap diet i see is confusing to me when i type in fm the fodmap diet comes up....



hope floats said...



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<font color=#0000ff>Anyway, sorry you have FM also and can relate to your concerns. I plan to ask for a consult to a dietican and I pray that that person has experience with FM. I don't need someone who will add to my confusion. I need better food lists, meals plans, and good recipes. Would love to hear from you to see how you have been doing.



Hopefully, I receive comments here on this forum. Thanks for reading.

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