liver enyzmes still elevated??

[alisha1234]

So even after putting my daughter on a HFI diet, her liver enyzmes are still elvated. She's been on this diet for exactly a month and we've been testing her liver enzymes ever week or so. I am very confused. Her DNA test came back negative. We did a liver biopsy and that ruled out any major diseases/conditions. I thought It would rule out HFI but it didnt. Basically, we're back to square 1 and no one can figure out why her levels are up and down and why she has a fatty liver. Her diet consists of Asian white rice, which is not processed or has any other added ingredients, meat, mostly chicken and dairy. Lately, I've noticed that she loves the trashcan. I find her eating things from the trashcan and she's been very irritably and fussy lately. I'm starting to question HFI. I asked the Dr about FBpase and was told that if my daughter had that, she would have a more severe case of problems and show more signs of illness which she is the oppostie of right now. I am officially confused, upset and looking for answers.

[ukbill]

Firstly welcome to the forum

Secondly

Do not panic.. help is at hand.

First question:- Is she feeling appearing to be better on a low Fructose diet?

It can and will take 6 months or more before her liver will start repairing itself and her liver "stress" to decrease.

Well this is what we have observed with other children after diagnosis or before but after going on the HFI safe diet.

It is possible that her enzymes will remain high for some considerable time.

An Adult will have a Tolerance level of around 100mg that's for and Adult of around 100Kg

So the amount that will "elevate" her enzymes can be so low as to not be measurable.

There is a difference in elevated enzymes and liver damage. As far as I am aware while there is damage the enzymes will be higher than normal. I am not sure if or what level would indicate further damage is occurring.

If your Daughter is HFI then eventually on the diet you have her on she should recover and grow like any "normal" child. and the enzyme level will eventually drop although this may take years.

Second Question:-

How did your daughter react to sugar or sweet foods?

3rd Q :- Was she formula fed or Breast?

4th Q :-The key question is is she better on a HFI safe diet?

I would suggest giving her some Liver pate on HFI safe bread or crackers, and maybe a vitamin C supplement too.

Ascorbic acid is vitamin C you can buy it in its pure form from a chemist (drug store) Check with your Doctor / physician how much she will need but a tiny amount in cooled plain boiled water will make a refreshing drink for her particularly on a hot day.

Red meat is good for Iron and B vitamins. If you do a roast Joint (in the UK its traditional on a Sunday the dark jelly fat and scrapings form under the joint on bread are a great source of vitamins and minerals as well as being very tasty! (do not put too much salt on your joint if you are doing this for your daughter)

Making Beef Tea is good also.. which is simply something like stewing steak chopped small and slowly cooked in water to produce a good beef broth. A few dried herbs added will not cause any problems and add to the taste as well.

Mushrooms are HFI safe also.

With HFI food you have to turn upside down everything you thought you knew about healthy eating..

The HFI diet is very healthy only it appears to be everything you are told not to eat.. (meat, cheese, eggs, animal fat etc.) and these things are bad for you if you add highly refined sugars hydrogenated vegetable fats. and refined starches (flours). These are what cause high blood pressure, cholesterol and heart problems etc..

Above all else do not loose your sence of humor.

Keep smiling. all will be good.

Bill A.
PS knowing where in the world you are helps with local advice.. we have members from all over the place (nearly) who can give local advice and share experiences.. OK?
You are not alone anymore.

[alisha1234]

Hi Bill,

First off, going to answer your questions in order.
I have not noticed any changes in my daughter since starting the fructose diet besides the diarrhea going away but the diarrhea only started after we put on her whole milk and after she had a bout of the stomach flu.

2nd question was how my daughter reacted to sweet foods/sugar? -She seemed fine. Never had any reactions. She actually went through a phase where she loved oranges and grapes and would eat alot, around 9-11 months of age.

She was formuala fed and we had some issues with that, had to switch her formulas 4 times until we found one that worked for her.

Last question is hard to say. I never noticed any problems with my daughter when she had fructose. Being fructose free now, I still dont notice a difference whether that be behavior wise or weight wise.

I try to be as positive as possible but it's been a very tough road we've traveled here. I guess with time, we hope to find a diagnosis. It's hard being a parent and watching your seemingly healthy child go through all of this. She's always been on the small side and eating is a nightmare. She has days where she will eat and days where it's a struggle to get her to eat but she's only 15 months so I guess that's normal. Thanks Bill and thanks for this wonderful site. Life would be harder without this amazing wonderful site and all the amazing ppl who come no here.

[ukbill]

OK this is not traditional type HFI then.. although it may be.. I believe that because the avoidance of sweet flavours is a Pavlovian response.. ie we learn to avoid them and can likewise learn not to avoid them.

Most people with HFI have this protective response and some of us have it removed by well meaning parents incorrectly feeding their HFI children glucose and artificial sweeteners, this is unfortunately very common now.

However there are a third group who seem not to avoid sweet flavours or show "traditional" responses.

This might be for a number of reasons including your daughter or another Child might not have HFI.

But it is also possible that if she has never been "well" so to speak she will not know what is a poison and what is safe.

I know children even before they are born can react to food the mother is eating, and also if breast fed.

We have been told that Fructose cannot pass the breast / milk barrier but this is not true and Fructose can easily pass from the mothers blood into he baby causing problems with the babies Liver even before its born.

This I believe is more common now because never in all of human evolution have we consumed so much refined sugar and constantly in every meal and drink almost everything or type of prepared foods contains added sugar (unless you cook from scratch and positively exclude it)

Your Daughter has only been fructose free for 4 weeks this is not a long time..

Can I guess that you have a sweet tooth so to speak and eat quite a lot of sugar and sweetened foods?

Although if you had eaten a lot of sugar and your daughter is HFI then I would not expect you to have carried her to full term.

There are supposed to be 1:10,000 to 1:25,000 of the population as HFI but we are far fewer on the ground so to speak than we should be.

So something is killing us off before we ether get born or in early childhood.

You say she cannot take milk .. can she take milk products (like cheese) and have you tried her on Goats milk Goats cheese?

I know people can have an "allergic" type reaction to cows and beef in particular. Childhood eczema (pronounced Xema) is usually a cow/ beef allergy and if treated early enough, after 6+ months of a totally beef meat, beef fat and dairy free diet, sometimes it can be reintroduced and the eczema never comes back. !

We once milked 13 goats and sold all the milk to patents of many Doctors who recommended us to patents. We had many, many "cures" if the parents kept to the diet and avoided all possible forms of Dairy cow or beef protein and in particular fats.

Goats milk and cheese and meet were fine.

Keep smiling

[nicoleh]

Hi Bill,
I've seen quite a few cases of eczema myself and while I've certainly seen dairy allergy, I've never ever seen anyone have a problem with beef. Usually the allergy is to casein protein in the milk which is not present in any meat. My own 2 were badly allergic to cow's milk for a while (and goat's too at one point) but never had any dramas at all with beef meat or fat. Interesting!

In terms of breastmilk, I'm seeing more and more evidence that DD is getting better when I remove fructose from my diet. much less excessive drinking and urination. However I doubt fructose ingestion would affect the foetus as they use aldolase A and Aldolase B is only present from birth (or very shortly before, I can't quite tell from the literature).

I think you'll find the missing HFI patients have either been labelled SIDS deaths or are simply undiagnosed. So they're either sick, or they just 'don't like fruit and vegies' and the doctors aren't looking for HFI. Goodness, we have a child with obvious reactions to fruits and the doctors still won't test for it because they consider it too rare!

[alisha1234]

I think that Bill could be right about the fetus possibly having issues with the liver while still in utero. You see, with my daughter, for some reason while in utero, she was labeled as IUGR (Intrauterine Growth Restriction) meaning, her fetal weight was smaller for her gestational age. At one point, I was told she probably wouldn't make it. I had monthly check ups and they never found out the reason why she was growing the way she was supposed to. The Dr's told me most IUGR cases have something to do with the placenta, but not in our case. My placenta was healthy and functioning fine. My daughter was just somehow, not growing very well and at one point, measured 3 weeks behind her gestational age. She's always been on the smaller side at and almost 15 mths, she could still fit size 9 and 12 months clothes.

Sometimes, I wonder to myself if my daughter had liver issues in utero already. In my opinion, I think she did. I guess I will never know. But one thing I do know for sure is that there is something wrong with her that's causing her to have a fatty liver and elevated enyzmes, we just dont know what it is yet. The dr's haven't completely ruled out HFI yet but for now, she's back on a normal diet and doing pretty well. She's actually been sleeping through the night and very happy. I'll have to watch her stools though. If they become runny again, it could be HFI...

[lucky]

Hello all,

I also agree with ukbill and alisha1234 with potential fructose transference in utero and through breast milk.

I especially had a severe heightened instinctual aversion to the smell of fruit (ripe, and in mass amounts displayed in a confined area at the grocery store) during my 3rd pregnancy. Whether it was because I was carrying a child with a (future) severe fructose sensitivity, or because I am FM (both of us found to be FM later through son's metabolic investigation at 7) it is interesting...

I also think fructose transference through breast milk may be a factor in infants who show gastro issues, less than favorable growth, or metabolic signs. 2 of 3 of my children showed issues. Myself, and the two have FM. Because the youngest (now 11) is so severe with diet still, he leads the way in metabolic testing for definitive answers to his fructose issues. Only time will tell if our family is dealing with just FM -and his being extremely severe- or something still like FBPase deficiency...or other...

[nicoleh]

Hi Alisha,
certainly if your daughter has any other condition, she could well have started off with issues in utero. Is this something you've mentioned to your doctors?

Lucky - I agree with you that fructose is definitely transferred from mother through placenta and into breastmilk. What I debate is that it would have any effect on an HFI foetus. The embryological development is such that foetuses express Aldolase A which we know is fine in HFI. Aldolase B doesn't exist in any foetus until birth, so whether or not it is defectively encoded in the DNA remains irrelevant until that protein starts to be needed.

On the other hand, a foetus with FM or FBPase deficiency may well be needing their enzymes before birth and finding them insufficient to deal with mum's fructose load.

I suspect the fact that you have FM was key to some of the things that you describe in your pregnancy. Sense of smell increases a heap during pregnancy. I think that you may have always been turned off by the smell of high-fructose foods but weren't as able to sense it until that sense of smell increased in pregnancy. And I've found myself that with each pregnancy that sense increases more than the previous one. For me, I couldn't stand the smell of any meal I'd eaten in the past fortnight, so we had to have lots of variety in meals and no leftovers!

Plus, who knows how much the stress of eating foods that don't agree with us affects our pregnancies?

I definitely agree with you that the mother has heightened instincts at that time.

For us, (and yes, we aren't confirmed HFI yet but I'm 99% sure), all pregnancies were smooth sailing in terms of baby. I was pretty unwell with chemical sensitivities with this DD3 but that was because I stupidly didn't take folate. DD3 (HFI suspect) was the largest of ours, with perfect 10:10 apgars at birth, cried even before she was fully born, didn't have even one blue toe! carried to around 41 weeks (my others were 14 and 11 days late) and weighed 8lbs 11oz. She measured and sounded fine all the way through - no difference at all compared to my other 2 girls who have no fructose issues.

Our troubles started at birth. Within a week she was vomiting and screaming all the time. Kinesiologist muscle tested a whole heap of foods I had to avoid to help her. Gluten and dairy I expected as my others had reacted to that in the breastmilk, but I was surprised when she added pears and apples to the list of things to avoid, which I did. She stopped screaming, but I was eating other fruits (though less total fructose as a result) and she vomited up huge amounts of her milk and also often refused to feed even after a whole night without milk. Neither of my other kids vomited like this. Even now at 12 months, she has always chucked back a tiny bit of her milk in the morning. Until this last week when I've cut back a lot on the fructose in my diet. Bingo, no vomits. I feel so bad knowing that my little one had no choice but to drink a milk that made her feel better in some ways but then started the cycle all over again. I only wish I'd known what was wrong with her.

[alisha1234]

Hello Nicoleh,

I dont think my daughter has HFI. The dr's think now think that too. She never had any problems like vomiting. She was actually a good baby until she was about a month old. And then she started crying all the time for who knows why. We switched her formula about 4 times until we found one that she was doing much better on. When I introduced fruits, she loved it. By the time she could cruise, she wanted banana's, oranges and grapes. She esp loved grapes. She never once vomitted or acted differently.

Today she went in for another liver enzyme check. She's been back on a normal diet now for about 5 days and she's looks and seems better than ever. Her gaunt eyes have disappeared (gaunt eyes were from lack of food probably as she barely would eat on the HFI diet) Her enyzmes came back just a little bit higher than last week but not by much. The heart echo didn't go well. She'll have to be sedated.

I wanted to share with you guys something my daughter did that teared me up, the first thing her dad and I introduced to her when we were given the ok to put her back on a normal diet was a popsicle. She grabbed ahold of the popsicle and started to run towards the corner, as my husband and I inched closer to her, she would run to the other corner. She was so afraid we would take it from her. It was the cutest thing I had seen in a long time. She was soooooooo happy. Now I'm not saying she may not have HFI, that could still be a possiblity in the future, but for now, besides elevated enzymes and a fatty liver for no reason, she seems perfectly normal and healthy. I just hope that one day, I can look back and just smile. I hope you find answers for your daughter, as well as mine. Take care

[nicoleh]

HI Alisha,
I'm glad you were able to get some dietary relaxation going without a spike in liver levels. Your daughter definitely doesn't sound as HFI typical as mine. Mine would scream at me and bite me if I tried to put a grape or something like that in her mouth.

On the other hand, just a little tip - while veg will be great and fruit in small quantities won't harm, do remember that food is a huge factor in our health and especially while she is unwell for any reason, sugar won't do her any favours whatsoever. I'm sure she enjoyed the popsicle and it would have been nice for you to give her that treat - now her body would probably appreciate lots of butter and broth and mineral rich foods - but sugar depletes nutrients and fructose stresses the liver significantly even if there's no HFI. Just some information for you to research and take or leave as you wish.

Good luck with her!