FM or HFI?

[eika]

I was really happy to find this place as I have been trying to get to the bottom of my sons fructose issues, with very limited help and understanding from the health care system. I have been reading some of the post her, and understand that you people have much more insight into this than the doctors I have spoken to so far.

My 5 yrs old son has had stomach issues for all his life; loose and pale (yellowish) stool several times a day. As a baby he did not have pooh diapers, instead it was running out of him constantly. Ever since he could express himself, he has been complaining about stomach pain. Sometimes, needing to take a bath or having a hot bottle on his stomach to ease the pain. Besides that he has struggled with his moods and his temper, often being fuzzy and unable to sit still. He has also had reflux since he was a baby.

Before starting on a diet, he particularly reacted to cakes, chocolate, raisins. He would stop eating after a few bites, refusing to eat any more, even though he obviously liked the taste. His stomach would get really bad after maybe 20 minutes.

He has been checked for food allergies, celiac disease (both blood test and gastroscopy), lactose intolerance test, and fructose breathe test. The fructose breathe test came out positive. After drinking the fructose drink, his stomach really hurt and after about an hour he was really running around at the hospital and it was difficult to talk to him and get contact with him.

The doctor concluded that he had fructose malabsorption and he started on a low fructose diet. Everything improved, but not completely until he was also gluten free. He now eats no fruit or berries, very little vegetables, no gluten products, no sugar and no milk. The hospital wants us to try to introduce and test some fruits (like banana, raspberries etc) and small amounts of sugar as it should be okay to eat fructose in the presence of excess glucose. However, such trials always fails, and the stomach pain returns and also his mood issues.

I therefore questions, since he is so sensitive, whether he really has fructose malabsorption and not hereditary fructose intolerance. We have tested him for the most common mutation, seen in 50% of cases, but he is negative. But I read somewhere that there are 50 known mutations. The doctor does not think it is HFI as he would have expected him to get really ill at a very young age. I am not familiar with the clinical spectrum of HFI, but find it strange if there is not some kind of heterogeneity among patients.

I now ask myself, whether we should take this further and try to exclude HFI with more tests? In such case, which tests? I do not want to end up concluding FM and finding out later that it actually was HFI and then blaming myself for not keeping him on a stricter diet.

I also wonder about mood issues and hyperactivity - is this commonly seen in HFI patients? It clearly is related to fructose ingestion in my sons cases, and I wonder whether this speaks againts HFI or not?

I also wonder whether pale yellowish stool could be explained by HFI?

Has anyone else here, children having a similar symptom and disease picture?

I will be more than grateful for any replies and feed back as I am so tried of trying to come to the bottom of this, and feel so alone with these worries.

:-)

[colormist]

Hi Eika,
From his history with food, it sounds like his reaction is typical of people with HFI. Doctors also seem to think that kids will die as babies if they have HFI. Was he breastfed or formula-fed?

There are some more tests you can do if HFI comes back negative. Did he not have ANY of the known mutations? You have to have two mutations to have HFI, if he only had one that might be a good indicator that he has HFI. The other test that I know of is a liver biopsy (which requires surgery).

An easier route would just to be to put him on a strict HFI diet and see how he does. Since it sounds like he's tempted to cheat (my brother does too, and he's in his late 20's), you might want to hide (or put out of reach) anything that would tempt him. I started a Pinterest board with Fructose-free food. Please read my notes on the photos to make sure the food you're preparing is fructose-free. pinterest.com/colormist/fructose-free-diet/

The best part about the HFI diet is that it's safe for FM. If he does better on it, you can try adding back in low fructose items to see how he reacts.

And yes, mood and hyperactivity are common with people with HFI. Our blood sugar levels are hard to maintain when we don't have a fructose-free diet.

[charlie]

Hi Eika

yes, what a familiar history. welcome on board and the best news.............. you are not alone. Read all our posts about our kids, we all started trudging the same path until we came across fructose problems.

As colormist has said, start low fructose, if he has tested positive for FM then he needs to clear the system first whichever one it is.

Where are you in the world?

One big thing you will find is that the doctors and dietitians rarely understand the full implications about fructose content of food. alot like the low fodmap diet for FM but many of us are finding our kids can't even tolerate that so you are best to take out as much fructose as you humanly can to start for at least 4 months then maybe try low fructose back in to see.

Sadly the road for answers is very slow and alot of the solution will be reached by your experimentation. There seem to be different triggers in everything and there seem to be different sugar tolerances in each as well.

My daughter seems to much better off all fructose if possible, lacto-free milk and low wheat at the moment (but we are still trying to work out if it is FM, HFI or CSID) as she doesn't fit all the FM or HFI symptoms.

Irritable mood is one of the first signs she has had something she shouldn't have, and hyperactivity can start if her blood sugar is plummeting but also if I give her certain foods, noodles and semolina being the biggest triggers (and I can't for the life of me work out why but she starts as though she is drunk!)

Anyway, welcome, have a rummage around the posts to get some answers and don't be afraid to ask

Charlie

[ukbill]

Hi Eika, and welcome to the site.

Hopefully you will find information sadly lacking in the general medical professionals here.. but please check with your medical people before trying anything not on their lists etc..

I would not normally expect Hyperactivity with HFI quite the opposite in fact.. lethargy, failure to thrive etc.. particularly after ingestion of Fructose / sucrose, are the norms..if such a thing as "normal" exists with this condition and surrounding "side conditions" which are sort of similar but not quite.. If you get my meaning?

We are a friendly group and sometimes agree to disagree over subjects occasionally.

Please let us know where in the World you are because advice has to be different depending on Country, as foods are different (even Branded foods) Hence something advised as safe in the USA might not be in the UK Europe of Australia for example and Visa verse of course.

Also advice on which Medical Professionals / Specialists to approach as well.

Any questions please ask.

Regards

Bill A.

[eika]

Hi and thanks a lot for your answers and support!

We live in Norway. The doctors have very limited knowledge and a very simplistic view of HFI. The hospital only offers to test for the most common mutation. This test came back negative (but I do not know if he was positive for the mutation in single dose). I am trying to figure out whether I can send a sample and test for all known mutations somewhere abroad. Anyone knows?

He could of course have FM as the doctors have concluded but I cannot settle with this until HFI has been excluded, particularly given his non-tolerance for fructose. I forgot to say that before he started on a more or less fructose free diet (1 year ago) he also had several episodes of vomiting and his GP commented on his liver being enlarged (which was not followed up but instead she said it was likely due to an infection even though he had not been ill for a long time). I did not think much about it at the time since I then had never heard about HFI. If it had really been due to HFI, would going on a fructose free diet make his liver get back to normal or would it still be enlarged?

I also read somewhere that people with HFI have glucose in their urine after digestion of fructose? Is this true? Is this something I can try to measure? I bought some urine sticks for measureing glucose, but I have hestitated to uese them, both because I not want to give him fructose and see him suffer and also I do not know whether this would be expected to lead to a detectable change in glucose in his urine (maybe he would need to eat a lot and not only 1/4 of a banana which is enough to give him pain).

By the way, Charlie, what is CSID? Maybe that is something to look into regarding my son as well.....

You really are a nice and helpful group. Good to be here!

Eika :-)

[charlie]

CSID is congenital sucrase isolmaltase deficiency (which Lucky put us onto) and reading the symptoms made alot of sense for me about my daughter.
www.csidinfo.com/symptoms.htm
have a look as another idea.

As regards the liver, the liver can heal over time so yes, it is possible if you have done a fully fructose free diet that things there would improve.

there seem to be several types of FM too and some of these kids that have symptoms earlier don't seem to tolerate any fructose, limited wheat and possibly dairy issues too, but so it may be with CSID. So welcome possibly to the grey area club.

You may find a slow process of trial and error is the only answer but start with the basic fructose free diet and build up. We were originally told Meg may need to stay off for 4 years then may recover (only along FM lines - if HFI they never recover, just heal) and then you could start adding stuff back in. Meg was 5 when they gave that advise, last year when she was 9 they tried her on the low fodmap diet and it all started to go wrong again so we are back to the drawing board.

You may just have to keep experimenting until you find your answers unfortunately. Have a look at my board for FM too if you haven't already, link at bottom of my posts.

As for sending off for other tests, in one post I found various places that test, its under Gene Testing in England if you search that in miscellaneous, you may find somewhere there.

[lucky]

If it makes it easier to remember, CSID is also known as "Sucrose intolerance"...