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Allergies and intolerances

Coeliac disease & fructose malabsorption?

24 replies

freefrommum · 19/01/2012 19:20

DD1 was diagnosed last April with coeliac disease. She went gf and her symptoms improved almost immediately. However, from Sept onwards she began to deteriorate. Nothing major just lots of little things, tired, pale, dry skin & eyes, generally not herself then more recently tummy pains again. Have taken her to GP 3 or 4 times but apart from giving us various creams for her skin (which don't work) they don't seem to have a clue what's wrong with her. I've been at my wits end as people keep coming up to me and asking what's wrong with her as she looks so awful all the time. Then just now I read something about fructose intolerance on one of these threads and decided to look it up. In fact, fructose intolerance is a nasty hereditary condition but fructose malabsorption simply means the body can't absorb fructose properly. Turns out it quite often goes hand in hand with coeliac disease and doesn't manifest itself until people go gf due to change in diet. I am going to phone DD's consultant to ask for her to be tested (breath test apparently!) but wondered if anyone else had any experience of this?

OP posts:
caskie · 20/01/2012 09:21

No advice from me but will be watching this one.... ds who is nearly 7 was diagnosed in July 2010 and has been gf since then. His health improved so quickly and he felt do much better but his symptoms seem to be returning and his growth is slowing down Sad. He hasn't had a negative blood test yet (the first one was borderline and the most recent was positive) and is due to have another one next month. Dd was diagnosed last year and will be having her first blood test then too. They basically eat the same things and we don't have gluten in the house so they should both be negative (fingers crossed).

I hadn't thought that the symptoms might be linked to something else so I'll ask the consultant at his next appointment.

freefrommum · 20/01/2012 14:28

Thanks for your post caskie. My DD's TTG test results were back within normal range by November (went from over 90 before diagnosis to 8 in less than 7 mths) so I know that she's definitely gluten free so there must be something else going on. I hope your DC's results are negative next time. Will keep you posted on anything I find out from DD's consultant.

OP posts:
nightcat · 20/01/2012 22:46

OP, do you use a lot of substitutes, esp corn/soya based? Coz I noticed with my ds that he was reacting to corn quite a lot after a while of being gf. So we quickly ditched all cereals and most substitutes as many are corn or soya based and tbh you can't live healthy eating what looks and feels (mostly) like cardboard and is loaded with processed sweeteners.

If you research, glucose-fructose syrup, it's made from corn and it affects metabolism in a more complex way than sugar, especially if gut has been damaged by gluten. Despite what drs say that you get better almost instantly on gf, it's not always the case, my ds was tested 2 years after starting the diet for absorption of vits etc, and was still found deficient in many that's why I removed all substitutes. I would say limit substitute gf products and use fruit/veg and go easy on sweet stuff.

If the gut hasn't recovered completely, you will find that there is going to be a weakness anyway and you need a wide variety of nutrients, as eg replacing wheat with corn or soya or even rice overload will still cause problems.

nightcat · 20/01/2012 22:51

PS, meant to add that neither my ds nor me can tolerate genius bread, we get stomach cramps.

freefrommum · 21/01/2012 10:51

Rang dietician yesterday and she spoke to consultant. They want DD to go dairy free for 4 weeks to see if that makes a difference. She asked me all the usual questions about making sure no gluten was sneaking in but having a younger child with life-threatening food allergies means that I'm extremely careful about reading labels and avoiding cross-contamination so I know it's not that. DD is going to be so upset when I tell her tomorrow that she's got to go dairy free from Monday :(

OP posts:
auntevil · 21/01/2012 22:58

I have ds1 who is fructose and sucrose intolerant - but seems ok with gluten, but DS2 and DS3 are CFGF - but fine with fructose/sucrose. I didn't know there was a link.
Does your DD like fruit? Apparently, our gastroenterologist said that most children actively avoid fruit if they are intolerant to it. DS1 hates all fruit - and is completely projectile with bananas. Yet he will happily eat most veg that he tries, so not a beige food addict.
Gastroenterologist also asked what fruits I liked, and suggested that he must have inherited it Blush as I am very particular on what fruits I like, and they happen to be the fruits with the lowest fructose levels.

TheHumancatapult · 27/01/2012 08:38

hi Ds2 has just had this test has crohns and other issues .It is avery easy test to do

depending on how old they are they need to be able to breath into a machine much like a peak flow

they fast for 12 hrs then go in do furst breath and hat will indocate what the levels are( also if they have eaten ) and then given a drink with the sugars in and then blow into macheine every 15 mins

Ds2 was negative but it seems he is a non prodeucer of the gas they measure !!.But that is unursua but were pretty sure frutose is not aisue for him

TheHumancatapult · 27/01/2012 09:19

opps sorry missing keys on laptop

freefrommum · 28/01/2012 12:53

Thanks everyone. auntevil funnily enough we've always struggled to get DD to eat fruit and veg but I guess that's not particularly unusual in kids! TheHumancatapult good to know the test is pretty straight forward just hope they offer it at our local hospital as I'm not sure how common it is. DD has been dairy free since Monday but no change is symptoms at all. She's had terrible tummy ache since Sunday evening and no sign of improvement but I guess it's still early days? I had thought that if there was going to be an improvement that we would have seen it by now but I'm probably being hasty. She was devastated when I told her she had to go dairy free but thankfully she came round to the idea quite quickly because she really wants the tummy aches to stop. Feel so sorry for her :(

OP posts:
TheHumancatapult · 28/01/2012 13:31

Hi is it lactose or protein which causes the problem and for it to work you need to be dairy free for a month to get a proper idea if i the culprit

freefrommum · 28/01/2012 17:04

We don't know if it's lactose or casein which is why dietician said to remove all dairy and in fact we don't even know that dairy is really the problem at all (I suspect not but am happy to be proved wrong!). I guess we'll just have to stick with it for another 3 weeks to see if it makes a difference or not.

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MotherElle · 29/01/2012 09:51

Hi freefrommum, there are tests for lactose intolerance (which, as you say, is not the same as casein/milk intolerance). Your GP/family doctor can arrange this.

Temporary LI is often found with Coeliac Disease.

Cutting out high lactose foods for a few weeks should help improve lactose tolerance in coeliacs but get the LI tests done before cutting out milk.

If you just cut out milk without testing you don't know if it is temporary LI associated with CD or not.

Obviously a strict gluten free diet is necessary, too.

freefrommum · 29/01/2012 15:30

Hi MotherElle I did ask the dietician about testing but she said that they don't test they just try removing dairy and seeing what happens. As you said, if there is an improvement we won't really know if it's the lactose or the milk protein that caused the problems but I'll ask about that when we get to see the consultant. I'm hoping they will do the fructose test but who knows?!

OP posts:
Bumply · 29/01/2012 16:30


Mr son was diagnosed as coeliac age 2 and is now a thriving 10 year old. He's not had any issues since on a gf diet, but I did get lots of advice from this message board when starting out.

Maristela · 04/02/2012 22:27

Hi, my DS is 5 and has just been diagnosed with Fructose Malabsorption. We've been trying to find out what was wrong for 3 years so are now hoping we can help him with new diet.
In regards to symptoms, he is always very bloated - his poor tummy is blown out and really hard. He sometimes 'leaks' mucus/poo, has very noisy stomach gurgles, is explosive on the toilet and sometimes complains of tummy ache. I think he's used to it so doesn't realise how uncomfortable he is. He isn't overly tired or pale or anything.
He had the breath test which was really straight forward (as TheHumancatapult described above) and now we have just been given a diet sheet, so hopefully we'll notice an improvement soon. He has to cut out sucrose as well (it contains fructose!) so it's quite a big change.
He's upset about not being able to have apples (V high in fructose) carrots and other of his fave things but we are lucky that it's malabsorption not intolerance.
Hope you get an answer to what ever it is.

freefrommum · 05/02/2012 16:05

Thanks Maristela that's very interesting. My DD doesn't have the 'toilet' symptoms you describe but then she never did before she was diagnosed as coeliac either even though most people do. She does have many of the symptoms listed on the net for fructose malabsorption though inc. acid reflux, tummy pains, sore eyes, lethargy, wind, bloating, just no diarrohea. We are seeing the consultant on Thursday so will see what he suggests. It's really upsetting me as she's just so ill all the time. Have to say, I'm really hoping it's not FM as it looks like a really difficult thing to avoid, especially on top of avoiding gluten. At least food labels have to list cereals that contain gluten but they don't have to state 'contains fructose'. If DD is diagnosed, I'll be coming back to ask you for ideas!

OP posts:
BarbarianMum · 05/02/2012 21:30

Thank you for starting this thread. I was diagnosed with coeliac disease last summer and have had constant problems with acid reflux since going gluten free (but not previously - the coeliac related symptoms were different). Am now off to google fructose malabsorbtion in hope of an answer.

Divster · 08/02/2012 18:59

Maristela - you just described my dd! She was last week negative for lactose, and is having the fructose this Friday.

Her symptoms have seen her in hospital 10 times, but she is complicated do to a laparotomy she had in Nov 2010, so when she has stomach pain and the terrible bloating it pains everyone, as it looks like bowel obstruction. She is neg for coeliacs, but doesnt have IgA in her blood anyway.

She had an apple when she came home from school today, and within half hour was in pain, within 1 hour stomach blown up.... Hmm

At least Friday we will know the result straight away, I just want her better and pain free

How do they know if its malabsorption not intolerance?

She has fat malabsorption as well.

freefrommum · 09/02/2012 09:22

Fructose intolerance is a very serious hereditary condition that some babies are born with and can be fatal. The symptoms are very severe and usually start as soon as a baby is given formula or foods.

OP posts:
Divster · 09/02/2012 18:31

Just looked at her paper work and its a sucrose breath test, is that different?

Maristela · 09/02/2012 21:42

How did you get on with the consultant freefrommum? What did he say? Any joy? Hope they are offering some helpful suggestions.
The FM diet is pretty restrictive and I'm finding getting the right information difficult. It's trying to think of healthy snacks which is hard but DS has been a star. And he can have glucose so I made some biscuits with that and they taste fine.
So far there's not been a massive improvement but it's only been a few days...I've read on some sites how FMs should also cut out wheat but that's not the advice from hospital so we haven't.

Divster - hope the test gives you some answers tomorrow. I don't know why they decide to test for sucrose as opposed to fructose or vice versa - I guess they'll tell you when you're there? Fat Malabsorption must be tough, have you had to cut out all fat? Good luck at the test tomorrow.

Divster · 10/02/2012 09:15

No change to diet yet, as they dont know whats wrong with her yet. The fat malabsorption, isnt a condition itself, but symptom of something else. She keeps getting bowel obstructions, so they are not sure if she has adhesions due to her surgery


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freefrommum · 10/02/2012 11:09

Appt with consultant didn't go very well. I'm feeling very angry and frustrated. He basically said 'well, she's growing and putting on weight so what more do you want?'. What I want is for her NOT to be in agony every day! She was growing & putting on weight before she was diagnosed as coeliac so that's clearly not the point. He also said that apart from her skin she looked fine to him, which I pointed out was because she wasn't doubled over in agony at that particular moment. He further annoyed me by trying to make out that she must be having gluten in her diet somewhere even though her last blood tests back on Nov showed that her Ttg was back within normal levels. They took more blood so we'll see what that shows but I'm 99% certain she's not having any gluten. When I suggested fructose malabsorption he clearly didn't know what it was because he started saying 'oh no, can't possibly be that, we would have known about that when she was a baby' etc etc until I interrupted and explained that I wasn't talking about hereditary fructose intolerance but fructose malabsorption which is different. He didn't want to know though, think he was annoyed that I'd caught him out. Only positive was that he got us in to see the dermatologist and he was great. Prescribed some different steroid ointments and emollients and hopefully we can sort that bit out at least.

Dietician said she doesn't need to be dairy free anymore as that's clearly not making any difference but she is staying on the 'super sensitive' coeliac diet for now to see if that helps (no Codex wheat starch or barley malt no matter how low). Consultant also suggested I keep a food & symptoms diary and I informed him that I'd already been doing that for the last 2 & half weeks so handed it over to the dietician. I will see how DD gets on over the next couple of weeks but if she shows no signs of improvement I will have to ring up again and either ask for a second opinion or demand the fructose breath test, even if it's just to rule it out. I'm not saying it's definitely that, in fact I'm really not sure it is but I just won't be happy until it's been ruled out. Problem with asking for 2nd opinion is I'm pretty sure he's the only paeds gastro specialist at our hospital so would have to be referred to another hospital.

Sorry, rant over :(

OP posts:
Divster · 10/02/2012 18:21

Why is it, that they think its fine for our child to be in pain? I am so sorry you are up against it! I myself have been fighting for a year now, to get some answers for my own childs daily pain and distension

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