Suspect HFI - help?

[NicoleH]

I"m not certain if I can post on this forum without registering so I won't type much. If this shows up, my next post will be the real one. thanks!

[NicoleH]

Great, that worked!

Anyway...
My DD 12 months old has a serious fructose issue, but I'm confused as to whether or not it could be HFI and what to do from here.

My other girls have dairy/gluten intolerances (or did, until we healed up their guts) and so when I started DD3 on solids I did so one food at a time, carefully checking for reactions. She does not tolerate any fruits at all, coconut, peas, pumpkin, carrots, choko, snow peas, beans. She does tolerate meat, poultry, fish, prawns, eggs, olive and macadamia oils. I have narrowed her diet down to just those tolerated foods plus zucchini and avocado in small quantities. Based on today's symptoms, she definitely doesn't tolerate 2 avocados (12 hours apart from eachother) OR she no longer tolerates zucchini, at least not as much as she had yesterday (1.5 zucchinis.)

These are the only foods I have tried to introduce her to. I tried 5 fruits, all to no avail. She is also breastfeeding 5-6 times/day.

Whenever I tried to introduce a fruit, she would gobble it up with gusto on first tasting; 2nd tasting would cautiously eat a few bites, 3rd tasting would point blank refuse to eat it. I noticed that whenever she refused something, if I forced the issue, she would react - and in retrospect, had reacted to it the first couple of times as well. With the veg, the refusal would usually take longer, though the sweet veg she did put up with for hardly any time. Pumpkin was an exception - she'd eat it sometimes, but not others.

Now she has a strong aversion to sweet food. Her other symptoms are severe diarrhea and I've just noticed that when she has eaten any fructose, she pees huge quantities and is very thirsty too. Prior to solids introduction she had none of these symptoms, though was always a very very vomity baby and reacted badly to a number of things I ate, including dairy and gluten.

I'm not sure what testing to pursue. With her diarrhea, rather than vomiting, it seems like frucmal, however when I look at the lists of what people with FM can tolerate she's WAY more severe than that. Plus my mother has a history of vomiting on ingesting sugar (all her life since weaning) and a strong anti-sweet taste preference, AND has awful trouble controlling her blood glucose levels and goes into hypo crashes with great consistency. Has to go to bed if she eats 5 pieces potato etc. So SHE looks like classic HFI, but my DD is more the diarrhea. what confuses me is that she has really only had incredibly small amounts of fructose, so question is: would she be "crashing" or vomiting if I did give her larger amounts? Also, her symptoms (diarrhea and thirst/urination) seem to be worsening - I don't know if that can happen with HFI? She's just had 21 days almost continuous diarrhea (as we've been gradually removing each vegetable that we thought she tolerated until we were back to proteins only, when it cleared up for a day - only to come back badly when I gave her the 2 avos today).

Your thoughts would be appreciated. So far all we've done is a faecal occult blood test and microorganism culture (results not back - I'm sure they'll be negative - it's clearly not infective diarrhea, she seems too well for that, plus her siblings haven't "caught it"). We have also done a faecal calprotectin reading (measure of intestinal inflammation) which showed highly elevated results.

I'm not keen to do bloods if not really necessary, and she is completely well if kept on meat/eggs/oil only. But I will do them if I need to. I wish I could to a hydrogen breath test - but how with a 12 month old?? Does anyone think this sounds like it could be HFI?
THANKS in advance!
Nicole

[charlie]

Hi Nicole,

welcome on board firstly, you have definately found the right place to start. As you have found, yes you can post as a guest but you may find it better to join if you think we can help as then we can send you private messages and other things run smoother for you for posting etc.

Where are you in the world firstly, I am guessing Australia?, if you do join add it to your profile in location and it will show up then every time you post. that way people most local to you may be able to help better with where to go, foods etc.

Right, where to start................. Firstly you are doing absolutely the right thing by trusting your instincts and only going with what suits your little girl and being led by what she instinctively wants to eat as she still has that inbuilt natural protective mechanism. My daughter point blank refused veg and fruit when I was weaning her and the first thing she ever ate was potato after baby rice. She had vile diarrhea that used to burn her as she started to eat more foods and serious projectile vomiting for years.

But what is it........... certainly it seems your family has a food tolerance problem that obviously has passed down the line. with HFI most due have a natural aversion so that could be your first indicator. Your safest, quickest test is a genetic test. Now there is a new one called 23andme that is cheap and uses a swab test but we don't know how accurate it is. If you don't want to draw blood from your daughter and you think your mother may have it as it is hereditary then you could get her DNA tested first, if she has it then the chances are that is what your daughter has and just keep on the HFI diet, there are several young kids here perfectly healthy on the HFI diet once their parents get the hang of it. The trouble with the DNA test is not all mutations are detected so a negative isn't absolutely a negative and you are still left guessing.

If this happens, welcome to the Grey Area Club of which I am a frustrated member............

HFI is a liver problem. However what is becoming more and more apparent is that there are alot of youngs kids out there with some sort of sugar malabsorption problem but working out which it is is the hard part. Most sugar malabsorptions occur in the small intestines (the bit after the stomach) where they don't get broken down and absorbed properly so they end up producing watery, fermenting diarhea and serious gas.

Fructose malabsorption is one of these and it seems that those that get it early on have it more severely and cope best on the HFI diet but also off wheat due to the fructans. Here they are lacking the protein enzyme that carries the fructose molecule through the villi in the small intestines to be absorbed into the blood and transported to the liver. You may then find as she grows older and her bowel and liver mature that she can tolerate more. It is only diagnosed medically by the breath test but that isn't really feasible until she is older so the only other way is the elimination diet which is more or less what you are doing. For more details on this visit my proboard www.fructosemalabsorb.proboards.com for more info. there is a yahoo group but they tend to go a bit obsessive on Sue Shepherd etc and I don't think her low fodmap diet is any good for these children who have it badly as it has too much fructose.

The other condition worth bearing in mind and you may find your other daughters have milder versions of it is congenital sucrase-isomaltase deficiency also known as sucrose intolerance and disaccharide deficiency. This is now what I suspect my daughter has and there they cannot breakdown sucrose (and alot of fruits and veg contain sucrose as well as fructose) but also starches and sometimes lactose. that is another genetic problem but getting the gene test for that seems to be harder so sometimes the only diagnosis is again by food elimination or by trialling the enzyme replacer. And that is the good new about this condition in most countries now you can get a medicine to replace the enzyme so they can tolerate more. go on www.csidinfo.com for more details, also there is a good yahoo group on it, I'll paste the web address for that in a minute.
health.groups.yahoo.com/group/CSID/

Anyway, hope this helps for starters. Please feel free to ask anything, there is a fount of knowledge on this board already so hopefully you will get the help you need.

all the best

Charlie

[NicoleH]

Thanks for your reply Charlie.
yes, I am in Australia.

I totally agree about FODMAPS - way too much fructose for my DD. One of the reasons why I suspect HFI is that she is far more serious than 'most' FMers, so thanks for your info on the fact that some little ones are this serious even with FM.

I forgot to mention that she's never thrown up her solid foods - she was really vomity when fully breastfed. She's actually improved with having less liquid foods in her tummy - though since this diarrhea started in earnest she has often vomited in the morning - but still only while she had only breastmilk in her tummy - so I doubt it's a link to HFI.

I know the problem is fructose and not sucrose - muscle testing says this for a start plus her symptoms are very severe on some fruits that have practically no sucrose but are high in fructose.

My daughters are now both 100% well. We did the GAPS diet program and kinesiology to adjust microflora and they now tolerate all foods extremely well without any digestive aids at all - exception of capsicum for my oldest which I can live with! So I'm certain they don't have CSID or anything, but thanks for the info anyway.

Getting my mum tested is what I want to go with first, if I can convince her - but she's going away for 6 weeks very soon so it will have to wait.

If I'm going to go with the HFI diet for the moment, as it seems to be needed, where can I find info on the likelihood of her tolerating nuts?

Thanks so much for your help,
Nicole
PS - I"ll join later, in a rush off to an appointment

[charlie]

Sounds like you are well on the way already, that's great. Nice to meet a sensible mum.

If you are sticking to the HFI diet watch for the slip ups. You sound like you have access to alot of food info already but if you don't use it www.nutritiondata.com is good.

Also follow Colormists blog and pinterest, maybe she can post the links here for you save me going back and forth to find them, she has been building up alot of great recipe ideas very HFI safe,

the best thing for now, especially with a little one is to think as savoury as possible with foods and at that age they really don't care if they have the same food three days in a row, just avoid the parent trap of thinking we have to give them variety.

That would be good if you can use your mum as a guinea pig.............. and might give her firm answers too.

Nuts, google it in the search here (put over 999 days to bring up as many posts as you can). they do all have fructose in them, even peanuts but some dietitians say they don't so for now i really would avoid them until she is much older just incase.

Good luck,

Charlie

[nicoleh]

Thanks Charlie.
Muscle testing today with kinesiologist says she does have HFI with the A149P mutations which will show up on our dna tests here in Aust. Also had consult with medical doctor who treats a lot of unusual cases (autism etc) and he is convinced by muscle testing plus mum's symptoms so he has ordered DNA test for her. She tried to get it today but the lab tech had no idea what to do and so she has to go back next week. Until then, DD is eating meat, seafood and eggs. I will experiment with her tolerating leafy greens and tiny bits of avo and zucchini after she stabilises. Thank God for diarrhea - she has hardly absorbed any fructose so her liver should be great.

Quick question: everyone keeps talking about the 'safe list' and 'tolerated list' etc. Where, pray tell, are these mystery lists? I can't find anything! I've got the HFI diet links from the BU website but they're all contradictory. IS there something that doctors give out or something?

[lucky]

Hello Nicole,

I am Lucky, nice to meet you.
I am unfamiliar with the muscle testing you referred to.
Is that similar to a muscle biopsy?

[Tammy]

Hi Nicole. Nice to meet you and glad you found this site.
As far as the lists, most of us start with the BU's lists and go from there. All lists we have ever found contradicts with something else.

When we are talking "safe" and "tolerated" it's usually about the sugar list that is listed on the BU site.
www.bu.edu/aldolase/HFI/treatment/sugar_table.ht

There is an ongoing debate on the issue of sweets. Since your daughter doesn't like sweets, then cherish that and encourage it. The problem is with the kids that don't have a natural aversion to sweets and crave them. Then this list is a godsend.

[charlie]

Nicole, personally I would hold off on any veg for now as her system is so little, there really isn't any rush to try them and she stands a better chance of a healthy system if you keep it that way for now. Lots can't tolerate avocado, or only certain types and also greens. Spinach leaf seems to be one of lowest, but not all kids like that.

I would build up a good sound base diet of everything safe first, ie home cooked meats, egg, fish, potato (but only old white potatoes) and then wheats and dairy to see how they go. by then by the sounds of it you may have your genetic answers. White rice is a great fallback and every time Meg had a reaction i would put her on chicken and rice for a few days to settle things down.

I can email you the british list of safe foods we were given which is quite comprehensive.

I'm amazed what they have picked up on with the kinesiology I must say, I really didn't think they could use it to be that specific?

[fred]

Hi Nicole

If you join this group and send me your email address via the private message feature, I would be happy to email you a HFI diet that originated at a hospital in Queensland.

Fred

[nicoleh]

Thanks for all your replies; now to respond...

No lucky, it's not a biopsy - it's kinesiology based. not at all accepted by mainstream medicine but it has literally cured massive food intolerances (gut based ones) in 4 of my family members and has also dealt with other issues so I trust it. OF course we still get the mainstream testing too.

Hi Tammy,
I have already read a few of the posts about sweets. I haven't discussed with hubby yet about DD but at this stage I think my mum will use 'safe' sweeteners. She doesn't like sweets much but does want a treat for special occasions and she seems to have quite a high tolerance threshold. Once we see what shape her liver and kidneys are in we'll know whether or not she can handle veg - I suspect she might be able to have much more than most people here. As she is 50 years old she can make sensible decisions about her limits and therefore I think dextrose sweetened foods will be ok for her. With my daughter, my inclination is not to give her sweets as I agree with bill's idea that we should allow her to keep that natural sweets aversion so she isn't tempted to cheat when we're not looking. Once she is old enough to truly understand the implications of eating fructose and is able to read her own labels etc, we'll let her use something safe if she wants to - not artificial sweeteners though as I don't like them at all. I think she will have an easier childhood if she doesn't WANT any of her friend's treats.

hi Charlie,
the reason why I want to try some leafy veg is that she won't tolerate gluten-containing grains (yet, fingers crossed!) or dairy - at least not for a few weeks on the latter, once her gut heals it might be ok. According to GAPS theory and practice (and my experience) giving any grain feeds unhealthy bacteria in the gut and while her flora tests as excellent, I don't want to give any grain that might encourage 'invaders' until her gut is otherwise healthy either, as she will be more susceptible to colonisation with nasties while it is inflamed. So I'll be holding off on rice and potato for a couple more months. Thus making the leafies a high priority to try (plus I want her to get used to the taste of them whiel she's young). On the other hand, if they cause any gut inflammation at all I'll not be happy with that. We'll see I guess!

She has reacted badly to mushrooms in the past. kinesiologist told us she had antibodies to these, which she can fix. However I'm now wondering if it wasn't fructose in the mushrooms. I know most of you can eat them - are they totally safe, or just tolerated? (her diarrhea was 'different' after mushrooms, so I'm willing to consider it's not fructose, but want to be sure).

I'd love your list of safe foods, thanks. I'll PM you.

The kinesiologist is the best in the country by a long shot. She works with multiple different medical fields and the mainstream doctor who uses her services relies on her heavily. her results almost always turn out to be right after dna or other mainstream tests are used to verify (in fact sometimes she's more reliable than the tests). She has a wait list of 6 months! (luckily I've known her all my life so I get special priveliges to get in quickly) I secretly hope she might be able to change the expression of DD's HFI genes - but I'm going to pursue that possibility only VERY cautiously - you never know, there's no harm in trying it.

Thanks Fred, that sounds like a fabulous thing. I've already joined, will pm now.

Thanks everyone,
Nicole

Hang on, one last question: how long does it usually take for diarrhea to clear up on a meat/eggs only diet?

[charlie]

Diarrhea - If you are on the right track then it should clear up within a few weeks but will reappear quickly if you give her something wrong.... often a good indication. When Meg was younger it would appear very quickly after she ate something wrong but now she is older it isn't as explosive which is good.

[nicoleh]

EW! I just had to rinse the MOST digusting nappy EVER! foul black diarrhea that smelled of rotten meat (because it was, basically rotten meat). culprit? I gave her some stock yesterday that I had previously cooked zucchini in. There were a few small seeds and bits of the soft, centre flesh left in it. Would have been less than 0.5g zucchini. I think I'll put my plans to try veg on the backburner!

Tell me - is it true that lemon and lime juice are totally fructose free? Are there ANY vegetables that have NO fructose?

DD had her first hypo yesterday too - that I've noticed. In retrospect, she had the stock at my mums and mum had to call me to collect her early as she was "really tired" and when I got there she was really over-tired looking and fell asleep instantly when I nursed her though she wasn't due for a sleep. bingo! now I know why.

[colormist]

I think it was Fred that once said that anything that grew from the ground has fructose in it. So it's not that lemons and limes are fructose free, but rather that they have a very teeny tiny amount of fructose and given the amount of lemon/lime a person might use in a given meal, that it would be such a small amount that it shouldn't be an issue given the quantity.

So, say you put a lemon wedge in your tea. That amount of lemon should be fine. However, if you go drinking large quantities of lemon in a short period of time, then you're going to have issues.

I don't think there are any vegetables that are fructose-free. All seem to have some level of bad sugar, so (if the child is confirmed HFI) it would be best for her to be off veggies entirely or at least until you get her diet and reactions under control and know what a normal/healthy state is for your child.

[nicoleh]

thanks for that. depressing, but thanks.

She's still not well. jaundiced, black diarrhea - going for bloods tomorrow. I've put her on just meat and breastmilk and water. lucky she's not fussy!

[ukbill]

Nicoleh

I can only add my vote that you are doing the right thing.. only hold all fruits and veg for now..

Yes Limes and lemons do contain Fructose.. only the amount is very variety dependent (like potatoes)

IF you are worried about vitamin C then a little ascorbic acid in a bottle of water will give her all the vitamin C she needs.

IF she has Jaundice.. her liver is really not in a good shape..

I would also recommend not eating sugar in your diet while you are breast feeding.. I know the "accepted" knowledge is that the sugar will not come through but I do not believe that is not true in all cases, given various reported problems from mothers here and observing my own children's breast feeding habits / reactions.

Alcohol certainly comes through in breast milk! which is a tip if you want a good sleep one night.

Keep up the good work and excellent advice.

Bill A.

[nicoleh]

Thanks Bill,
she's not jaundiced according to my doc today. She acknowledged that her skin has yellowed, but since the whites of her eyes aren't changed she says that's not jaundice. She suggested that yellowed skin could be due to pumpkin or carrot eating. um, she's not eating any vegetables!! So I have no answers about that.

we had liver function, iron studies and FBCs done today. I sure hope they show something useful.

I'm a bit worried- her stool has changed from diarrhea to once per day, a small (tablespoonful sized) amount) of black tarry stuff. that's it. Anyone else seen this when coming off fructose? a sign of liver stress maybe?

[colormist]

I'm a bit yellowish, too. Might be genetics or HFI--who knows. I always thought it was olive skin, but I'm not Mediterranean.

I have no knowledge about the stools. What color is the food she's eating?

[lucky]

Nicoleh,

Long long ago, my son had black tar-like stool. I believe it can be an indicator of bleeding/irritation higher up in the tract. If stool has a pinkish/red tinge, it means the irritation is lower (and closer to the "exit" point). Perhaps follow up with one of your specialists to rule this out as a possibility. My thoughts as a parent are, if it is different than the norm, it is always good to look into it with a medical professional.

One question. My son went from very acidic/loose stool to normal to constipated, before the situation was eventually corrected. Now, he (and his digestive system) thrives on the HFI diet. But watch out for constipation. It can be a bigger problem than many understand.

Is your daughter having any discomfort voiding?

[nicoleh]

Thanks Lucky,
I've had faecal blood tests done and it came back negative, but we are repeating as her stool was dark green, not black at the time (last week). The doc is rather puzzled.

She's definitely not constipated - it's liquid and she's never missed a day's stool - liquid for the last 29 days now! it comes out pretty quick.

Hi colormist,
she's never been yellow before - always pink. It is carotenemia as no eye change, but that apparently can be a sign of liver and kidney stress. She's only eating red meat and chicken, plus breastmilk, at the moment.

On a good note: she just did an orangey poo - full of worms. lovely. I imagine they've been enjoying the undigested sugars in her bowel recently.