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Post by tatyanasmom on Dec 18, 2009 15:15:00 GMT -5
My daughter now 12-yrs. was diagnosed 3-09 with HFI. Starting in jan. 09 she has had excruciating pain in her abdomen. We have been sent to several different hospitals around the country. She is in such pain that they end up keeping her at the hospital and do all kinds of tests. Hida scan,ultrasounds of belly and female parts,drink this so we can see it run through her,(had sugar in it got very sick) ,CT scan,lactose intolerance test,echo-cardiogram,many urine tests,blood work, and Hereditary Fructose Intolerance test back in March which came back positive. Been on strict diet since still bad pain. Had exploratory surgery in May took out appendix and some fluid in abdomen(Doctor could not explain why she had excess fluid that had to be drained that was not in ultrasound from week before.) Still to this day she is in extreme pain on a scale of 0-10, 10 being the worst. She is at 8-10 an 8 being a good day. About 7 weeks ago she started feeling nauseous all the time. She does take miralax every night.It is not constipation.She goes 3 times a day. It is not IBS either.It is not celiacs, it is not chrones disease.Please help! Any ideas? She gets no sugars at all. I do not think this could be from HFI with her strict diet. If you have any ideas,comments,thoughts,please respond. She needs her childhood back. Thank You
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Post by colormist on Dec 18, 2009 16:14:51 GMT -5
I know you say it's not from her diet, but can you list everything she eats in any given day? Maybe some sugars are sneaking in.
I usually have severe kidney pain when I accidentally eat fructose.
If you're extremely concerned, you might want to limit her to an EXTREMELY bland diet of plain chicken breast (make sure this chicken breast is NOT plumped with "natural flavors" or any "chicken broth" as these tend to have fructose. You want straight chicken.
White rice, plain, is usually a pretty safe grain.
If her condition betters under this diet, you can begin slowly adding back in other foods--one at a time. Don't ever force her to eat anything she feels weird/wrong about eating. Her body might know what's making her sick but might not be able mentally figure it out yet.
I also like white milk and plain potato chips--but you might not want to try those until later.
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Post by jejns1 on Dec 18, 2009 18:06:14 GMT -5
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Post by jejns1 on Dec 18, 2009 18:37:14 GMT -5
Hi,
This may be already posted but Sorbitol and Splenda are also no,no's. I have found Sorbitol in many medications, prescription and over the counter.
Janice
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Post by Tammy on Dec 19, 2009 21:11:07 GMT -5
I agree with Laura in that I'd like to hear what she may be eating. It's very possible that sugar is sneaking into something that you'd never guess. It's amazing the things you find it in. If you give us an average days food maybe we can pick it apart for you.
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Post by charlie on Dec 20, 2009 11:49:08 GMT -5
I'll my bit to that Tammy and Laura, for ages we were told vegetables except carrots were OK but it wasn't till I took Megan off all veg as well that she significantly improved. I would go with the very plain diet for at least a week and keep a detailed diary of what she eats and how she reacts. It also seems to take months for the system to settle so patience is essential.
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Post by meaniejean on Dec 30, 2009 16:18:53 GMT -5
We don't know how or why this happens, but my boys get excruciating abdominal pain from eating meat. We just tried some challenges with it again recently and poor Calvin was in the worst pain - I took him to the ER because I thought he might have appendicitis.
He has been lactose intolerant since the meat trials, so it must have done a number on his intestines.
Like I said, we don't know why this is happening, but perhaps your daughter might be experiencing the same thing. We are not sure if it is a protein or a fat thing, but we are sticking to a low-protein, low-fat, high carb diet and things have been great. So great, in fact, that we may have been a little overconfident with the fructose lately. Calvin is having a rough day today due to his mommy's denial ... uggghhhh!
Best of luck to you and your daughter. I hope she feels better soon.
-Sandra
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Post by mballerina on Jun 2, 2013 15:13:45 GMT -5
onlinelibrary.wiley.com/doi/10.1111/j.1365-2036.2006.03186.x/fullConsequences of malabsorbed fructose Delivery of free fructose and fructans to the lumen of the distal small intestine and proximal large bowel may have potential clinical sequelae of importance and these might occur for any of several reasons. Osmotic load Being small molecules, fructose, and to a lesser extent FOS, will exert an osmotic effect and deliver more water with it to the distal small intestine and colon.42 Increasing the liquidity of luminal contents can affect gut motility, such as hastening transit. This effect is utilized by laxatives such as lactulose, sorbitol and polyethylene glycol.
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Post by mballerina on Jun 2, 2013 15:15:07 GMT -5
onlinelibrary.wiley.com/doi/10.1111/j.1365-2036.2006.03186.x/fullConsequences of malabsorbed fructose
Delivery of free fructose and fructans to the lumen of the distal small intestine and proximal large bowel may have potential clinical sequelae of importance and these might occur for any of several reasons.
Osmotic load
Being small molecules, fructose, and to a lesser extent FOS, will exert an osmotic effect and deliver more water with it to the distal small intestine and colon.42 Increasing the liquidity of luminal contents can affect gut motility, such as hastening transit. This effect is utilized by laxatives such as lactulose, sorbitol and polyethylene glycol.
Lactulose almost destroyed me and I have the same effect with PEG...to a smaller extent because I was very careful. But I basically took all my PEG and just lit it on fire lol.
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Post by fred on Jan 17, 2014 16:15:19 GMT -5
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