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After a year of tests, my dd has been diagnosed with a fructose intolerance. She tested positive after a hydrogen breath test at the hospital.
We were given a small booklet and told that we may get a telephone appointment with a dietitian. There doesn't seem to be much info in the web.
We don't see the consultant until the end of July (she has to have another hydrogen breath test for lactose intolerance too) so I'm feeling a little unsure with how to deal with this.
Has anyone got an experience please?
Hi, sorry I can't answer your question but may I ask what lead you to ask for the test? What were the symptoms?
Hi there, I have two children with Fructose Malabsorption. The eldest (now 6) has suffered for the last 3 years or so. The only way to manage the symptoms are through a low fructose diet. The diet can be a bit complicated as there is quite a bit of conflicting information out there. However essentially it involves avoiding high fructose fruits and vegetables, fructans (wheat) if you find that causes a problem and some sweetners that are fructose/fructan based. I would be very happy to share more information/recipes if that is helpful as I know how confusing it can be. Our local dietician had never heard of it so I hope you have better luck!
Hi Olive. My dd had been suffering from loose stools, bloating, tummy pains, low iron. Initially she was tested for coeliacs and although she has the gene, her ttg was negative. She's also being tested for a lactose intolerance.
Thanks Lucy. So good to hear from somebody else who knows about this! People keep looking at me as if I'm mad or making this up . We've been given a booklet from the hospital with lists of food to avoid (fruits, veg, gums, sweetners etc) but it doesn't say anything about bread/fructans. That is something I will ask about when we see the consultant next month.
What about sweetcorn? Also tomatoes...our list says that cherry tomatoes are ok. What about normal or tinned tomatoes? So confusing!
Have you managed to work out what your children can tolerate? Can they manage small amounts?
Likewise as I've never come across anyone else that has children who suffer with this. My children are desperate to find others 'like them'! The information you have been sent sounds great, we had nothing like that and have had to research a lot ourselves. I would be interested to see your booklet.
Sweet corn has always been fine for both of mine. We excluded tomatoes to start with whilst they were on the exclusion diet but they can now eat fresh tomatoes. My eldest can tolerate canned tomatoes but we haven't got that far with my youngest. Tomato purée is definitely out though as it is too concentrated. I have never noticed any difference between cherry tomatoes and other tomatoes!
We built it up very slowly after the initial exclusion diet and both can eat raspberries/strawberries but struggle with other fruits. My youngest can't tolerate any wheat but my oldest can. Vegetables generally don't cause too many problems except for garlic and onion (fructans) which do bother them both.
Have you come across glucose powder and tablets? If they have that at the same time as the fructose it can help minimise the symptoms after.
As a substitute for fruit flavourings in puddings etc we use vanilla, lemon/lime and elderflower. Very happy to share recipes.
Can I do a quick hijack to ask about the breath tests you are talking about? My DD has had blood tests and skin prick tests for lactose and soya which have all come back normal. However she has had digestive problems (loose explosive stools, tummy pain, and now some constipation mixed in too) for about four years. She's been on a dairy free diet for about a year which seems to have helped, and we are doing soya free as well now. However we did a soya trial recently and it seems to have set her right back unfortunately, with a bad tummy all evening for several weeks despite since having stopped the soya. So I'm wondering if there's something else going on, possibly fructose but it's so hard to work out what the problem is. We are due back to see the consultant in a few months, but I don't have high hopes from him tbh!
Sorry that your dd has been suffering too Tum. Was there anything in particular you wanted to know?
My dd has never had skin prick tests or blood tests during her diagnosis, just the breath test. From reading, I think they can either do the blood or the breath test to diagnose though.
Your dd could well be suffering from FM. The symptoms for fructose and lactose malabsorption are quite similar so it would be worth asking your dd's consultant.
We're back on Thursday for her lactose test. Keeping everything crossed she doesn't have that too!
Hi there. To test for fructose malabsorption they do a hydrogen breath test. They have to drink a sugary drink and the blow into a breathiliser every half an hour for 3 hours. It takes a reading each time which shows whether the fructose is being absorbed or not. You therefore get the results instantly.
My children both had dairy intolerances as well and they couldn't to,erase soya either, which I think is quite common,
Thanks Lucy, we're slowly finding our way. She's still having some tummy problems but we both feel they've reduced since going fructose free. I don't think we've managed to cut out everything though so still some work to do. Just hoping it's not fructans causing a problem too (there was a small and brief sentence in our booklet about fructans. If symptoms persist we would have to cut out wheat etc).
Ugh, she had the lactose intolerance test today which was positive too .
There is a lot of info online about the fodmaps diet. Fodmaps stand for "Fermentable Oligo-, Di-, Mono-saccharides And Polyols- fructose is one of those. The diet is a treatment for IBS.
That could be useful for you as fructose is one of the main culprits and a lot of fodmaps literature is goes into a lot of detail about which foods are high and low in fructose. It might also give you some clues about other substances that could cause problems- like lactose, fructans etc.
It all sounds very complicated, but once you get a hold of the fact that chicken and white rice is an absolute safe zone that you can really rely on, it gets a lot simpler than you think it's going to be.
One thing that really snookered me for a while was homemade chicken/beef stock. It's just emerging that collagen is a fodmap as it has a fermentable saccharide in it- so things containing meat stocks and gelatins could be triggers too. Not all literature mentions this as it is something that has just been found out. I was on a low fodmaps diet with no fruit or obvious sugars for over a year and couldn't understand why I was still getting symptoms sometimes, turns out the homemade chicken soups and gravy with roast beef was doing it. So this means no haribo or percy pigs :-(
Oh and regular exercise can help increase tolerance too as it promotes the production of glut-5 transporters in the gut which means that more glucose can be processed and glucose absorption aids fructose absorption.
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