Elevated Liver Enzymes- need some help!

[rysmom14]

Hello Board Friends!

I am in need of some help.  My son has been diagnosed for about 2 years and we have made a lot of great progress. He was getting labs drawn every 6 months and they were trending downward to a more normal level. He had his routine blood draw this past week and this liver enzymes ( particularly the AST and ALT) have doubled. Aside from the numbers, I have noticed that he is more grumpy and when he gets home from school and is starving. He is wanting cheese and crackers and milk and whatever else he can get his hands on. daycare does give a snack at around 3pm and he gets home about 6pm.  He has also been having more night terrors/ night sweats and restless sleep. We check his sugar and it is always fine.

Of course we are very worried, and my husband and I have been racking our brains to try to figure if we started something new, or starting giving something in a bigger quantity since his last draw 6 months ago. I am hoping that a fresh set of eyes will be able to help us find the problem food.

So this is what we have come up with so far:

1. Prior to labs being drawn he was eating sausage a couple mornings a week. He was eating more of a variety of breakfast foods like eggs and oatmeal and cereal. Within the last 6 months he has been eating sausage every morning. Almost 2 small links. He has been refusing eggs and oatmeal, so he would mostly eat the sausage and maybe cereal.
2. We also starting giving him salami. It’s Hillshire farms by the hotdogs. He loved it and would eat that a couple times a week.
3. Can olives and green beans. I have been going back and forth with these. Sometimes I notice that his butt is red after he eats the olives. They are just canned black olives and look safe? But I was planning on cutting them out altogether even before this bloodwork came back bad. Same thing with the green beans.
4. He goes to daycare 2 times a week, and while we pack everything for his whole day, there is always a chance that he grabs something from someone else’s plate, or the teachers give him something he isn’t supposed to have, like add butter to his pasta but it isn’t real butter.


The ingredients in the Salami are : pork and beef, salt, 2% or less of dextrose, spices, natural smoke flavoring, acetic acid, lactic acid starter culture, garlic, BHA, BHT, citric acid.

The ingredients in the sausage are : pork, water, seasoning salt. 2% or less of dextrose, spices, spice extractives, maltodextrin, natural flavor, potassium lactate.

Some of the other foods he eats are: pasta with butter, ground beef turkey or chicken ( pure with no additives), cheese, plain yogurt, milk, cheese its, pirate booty popcorn, Annie’s cheddar bunnies, eggs, canned white beans, Hebrew national hotdogs, Nabisco brand oyster crackers, safe saltine crackers, McDonalds Chicken nuggets and French fries, Mrs. T’s pierogis- regular cheddar, gluten free chicken nuggets, Oreida French fries, Applegate turkey from by the deli, Crumpets, Laughing Cow cheese- plain Swiss. Lays original potato chips. Home made “ cookies”
The ingredients for the frozen French fries- potatoes, vegetable oil, salt, dextrose, disodium dihydrogen pyrophosphate, annatto.

The ingredients for the frozen chicken nuggets- boneless chicken breast, water, corn starch, salt. The breading is- water, rice flour, tapioca dextrin, corn starch, salt, spices, spice extractives (paprika and turmeric) garlic powder, onion powder, ground celery. He has been refusing these for a while, so he may not have eaten any in the last 6 months.

The ingredients for the cookies are flour ( had been using regular white flour and it did have malted barley), butter, salt and water with cinnamon sprinkled on the top.

Since we have gotten the lab results back , we have cut out the sausage, salami, olives, and green beans altogether.  He doesn't eat a lot of the home made cookies, but I bought a new flour and got rid of the kind with the malted barley.

I have also ordered him a button to add to his shirt for when he is a daycare so incase a different teacher is there, he has something on himself to notify them that he needs special attention.  He wont keep an allergy bracelet on.  I have also spoken to the director about making sure no liberties are taken with his food.  If it isn't in his lunch box, he does not eat it.

Thank you all for reading this long post and offering suggestions.  I am open to anything at this point.

Emily

[ukbill]

OK as you are surmising he is getting something sweet at school.. Hence my repeated insistence that sweet foods are not given to HFI children!

Rant aside dextrose is frequently put on labels but I have been caught out myself on something that stated Dextrose.. but clearly was normal sugar.

Companies will stuff anything in if they are short of stock (or the price of dextrose is too high) yet not change the label for that batch.

Cinnamon powder might have added sugar in it as a bulking agent best buy your own cinnamon sticks and grind them if needed ( I occasionally put them in rice as its cooking to flavour the rice) also "Malted Barley" might not really be malted just ground barley flour and sugar added. (for cheapness)

I'm afraid what food companies are allowed to get away with is criminal a "Beef" burger to be use the name "beef" has only to have 4% cow derived contents for it still to be called "Beef"!

Glucose can be 40% other sugars and still be sold as 100% pure glucose!

I think you need to have a talk with the school and see if your child is being given sweets by other children or swapping foods between them.. Actually is a silly ask because all children will do this it is a given.

Given that he is going to swap and taste other childrens foods no matter what you say to him because of peer pressure or just liking the look of other childrens food.. whatever the reason you need to be ready give him some clean carbs (fastest to turn into blood sugar ie starches and white bread and butter) as soon as you get him home or on the way home (a drink of milk will help)

PLEASE do not feed him sweet flavoured foods like Diet coke etc. etc. you are now finding out why its not a good idea he really needs to learn that sweet = ill

Sorry but there is no other way to keep him safe away from your tender caring eyes.

If he keeps eating sweet foods his concentration at school will be much lower and he will fall behind other children of his own age group. Another mother with an HFI child who followed the advice of another member here is now finding out her child is 2 years behind his age group.. This may be coincidental but I know 1st hand how hard it is the think straight when brain fogged after a little too much fructose even 2 or 3 days previous.

At school I was lucky I got to go home for my lunches until senior school but had a few problems even then. Well there was a pudding with my lunch.. and I was always hungry so I tried to eat it if I could... not with good results I can tell you.

IF you "kick off" at the school or make too much of a noise about it they may well decide they cannot keep him safe, and they cannot.. so walk carefully there.

All my thoughts and best wishes to you if I can think of anything else I will let you know. I am not being critical in a negative sense and I also fully understand the peer pressure you are under to make him "conform" to normality, whatever that is, and to eat "healthily" i.e lots of veggies and fruit.. but for us this is the absolute opposite of what we need to be healthy.. but people just do not understand or comprehend I did not myself for many many years.. and suffered unnecessarily as a result. I have yet to meet a medical Professional who has more than an vaguest idea what its like either.

So all I can do is offer my advise.. and suffer the arrows and flames from people who disagree with me. However all my aims are for your child to grow fit and healthy and be able to go around in the world safely and with good health. If I have to upset people on occasion then so be it.

[rysmom14]

Hi Bill, Thanks for responding! The daycare that Ryan goes to is the same one he has been going to since he was little. They knew how sick he was when he was hospitalized, and while they have no idea what to feed him, they know it is a serious condition and follow the guidelines we give them. We send all of his food, breakfast, lunch and snacks, so I don't really think the problem is daycare, but there is always a possibility because I am not there to know for sure. I just wanted to cover all my bases.

My thought is that its something that I am giving him that I thought was safe, or something that should only be eaten sparingly. the foods that stuck out to me was the sausage and the salami. those are things that he was eating a good bit of. Both of those items have dextrose listed, so it's interesting about your experience with dextrose. Since my hubby and I don't have HFI, we wouldn't be able to tell if there was a bad batch before we give him. the other items that have dextrose in it are the chicken nuggets and frozen french fries. he has been refusing them recently, so he hasn't had any of them in the last couple months.

we stay away from sweet stuff too. I think the diet can be tricky enough without adding diet coke an other sweet, but technically safe foods or drinks.

I am hoping I am on the right track by cutting out the dextrose foods for now.

[ukbill]

Sounds like you are on the right path anyway.. potatoes are a bit of a mixed bag.. if he's been shocked recently he will be hypersensitive to all sweet flavours and by the sound of it avoiding them which is good news.

After I had my "challenge test" in which the Drs got the decimal place wrong and gave me 150g direct into my veins.. and nearly killed me.. instead of 1.5g I was very very sensitive to everything sweet flavoured for at least 6 months. Even white bread that I knew was safe tasted sweet, as with Slattern crackers which are broken down into Glucose in the mouth with the action of enzymes in saliva.

My young wife and I were at our wits end as to what I could eat.. I just felt ill all the time. (1981)

Some fries are safe and sound because the chipped potatoes are soaked in water (they say to remove the loose starch.. but it also removes much of the Fructose too) some are coated in a mix to make them go golden brown when cooked quicker .. this is usually Fructose that caramelizes into a brown colour quicker than Sucrose will or GLucose of course. So if you see "Caramel" or Caramelised xxxxx expect it to eat least caramelized HFCS or Fructose itself. So these fries might be made without a water soak if someone has figured out they can seal the loose starch in with the Frozen French fries they will reduce the Manufacturing time and costs if they can miss out the soak in water.

Yes I would expect the "dextrose" to actually be sugar in this case or to mask the high Fructose variety of potatoes used to make the Fries..

He will recover by himself if he can keep on a low enough Fructose load.

[jenn123]

Sorry to hear you guys are having a tough time right now.

The butcher is making encased sausages with just ground chicken/pork, salt, pepper and Parmesan/feta. Both sprouts and Whole Foods have made them for us. Just need to buy 5-10 lbs at a time. I just make the breakfast patties myself with ground pork, a touch of fennel and salt. Our daughter can not handle even the slightest bit of garlic. Any premade meats, even those that look safe, cause a reaction. Green beans, even canned, cause reaction and only five or six black olives (Lindsay) is all she can do. We have needed to cut out all processed foods. So our slow cooker, rice maker and bread maker are on nearly every morning and our freezer is full !

Hope this helps.

[rysmom14]

Thank you! I will look into whole foods. That sausage sounds really good. I don't mind loading the freezer either! we have 2 and they both are always filled. Jenn123 Where are you located? I am wondering if I should try to buy all his meats at whole foods?

Do you have a giant Eagle by you? That is where I buy his food now. I only buy him the natures basket brand because it is butchered in the store and they can assure me nothing else is added, but my son refuses some of the meats. maybe its just that he doesn't like chicken, but really.... who doesn't like chicken? so I am wondering if I should be getting everything from whole foods. The closest one to use in about 1.5 hours away, so I would need to make it well worth my while and really stock up!!

what do you make your bread with? If you wouldn't mind sharing your recipe? I changed his flour to eliminate the malted barley, but he really isn't eating the cookies with the new flour. sigh....

[colormist]

Emily,
If you are certain it's not happening at school (I would ask a caregiver to keep a close eye on him during snack time just in case and make note of everything he's eating--I would worry another kid might be "sharing" or that another caregiver might be being "nice" and giving him a "treat"), my guess is that the culmination of foods might be overwhelming. Things like "natural smoke flavor" and "natural flavors" can include things like onion, sugar, carrots, celery--anything really to get the flavor they're looking for.

Beans all have fructose in them. Green beans have the least amount. The canned white beans really have too much for a child to handle.

I recently went in and tried to buy Pierogies and every single package had added sugars/onion/honey. It was very frustrating since I had consumed them previously and they didn't have sugar then. Check your package just in case. (We live near one another, right? If we didn't, I might think you had sugar-free pierogies available in your freezer section, but the fact that we live nearby one another is another flag on the pierogies.)

Have you noticed him having less symptoms on, say, Sunday? Like he wasn't at daycare on Saturday or Sunday and Sunday he starts to perk up a bit? Either way, that would be a big clue that he was either ingesting the fructose at home or at daycare.

I'm really hoping it's not daycare because I know how difficult it is to find a reputable daycare, get in, and train the staff about HFI.

Good luck!

[colormist]

Ah! I wanted to add about elevated liver enzymes!

So mine was OFF THE CHARTS. Like both the ER doctor and my primary care doctor kept looking at my eyeballs and expecting them to be yellow--which confounded them that I looked so normal and yet my liver reports were saying otherwise. The elevated liver levels occurred a day after and two days after eating an unsafe amount of fructose (I really wanted funyuns and I am weak). Day 0: eat Funyuns (I love Funyuns, please do not feed Funyuns to an HFIer). Day 1 after eating fructose-filled Funyuns, levels were near 600. Day 2 after eating fructose, levels were near 300. At this rate, I presume I was back around a normal range around Day 4-5. A month later I had my liver levels tested a third time and they were normal.

So long as you find the fructose, remove it from the diet, your baby should be back within a health range in under a week (presuming his liver is anything like my liver). You might want to try an elimination diet to track down what might be causing the problem.

Keep us posted!

[jenn123]

It is a lot of work keeping up with this diet. We are in Northern California. Whole Foods can get expensive real quick so from them I stock up on ground pork. I believe it is labeled as their own line. I also special order a gluten free pizza crust from them by a brand called Against the Grain. You need to purchase by the case when you special order. (They carrry prepared frozen pizza in store, but these have tomato). I Generally get meats and cheese at Costco. I get their organics and we have not had any trouble. I usually will cook a beef roast or pork roast in oven then slice for sandwiches to replace packaged lunch meats. I generally Whole chicken, drumsticks, pulled pork, pot roast in slow cooker. During Holiday Season, I stock up on turkeys. This year I found an unbrined turkey at Safeway. I generally just season everything with pink Himalayan salt (supposedly most nutritionally dense) and oregano (supposedly natural antibiotic quality). I also have little pump sprayers that One has olive oil and one has white vinegar. She sprays on her food for a little taste.

The gluten free flour that seems to work best is called Cup4cup. It can be expensive so when it is on sale I stock up plus get a rain check for like 10 more bags at that price. I will post the recipe in a bit on its own titled thread so that it is easy to find.
Hope this helps. Just saw colormist comment - for young kids it doesn't take much hidden fructose to kick them over the edge, but a couple days of no fructose clears symptoms quicker than I ever expected. 😊

[hfimomof3]

What cereal is he eating? I find that I can eat few cereals, usually they have too much sugar. Olives seem ok to me but I can't tolerate green beans. I would also remove the McDonald's chicken nuggets, the pierogies, and the deli meat. Potatoes should be ok but I have found sometimes they make me feel ill. I don't know if their underlying biochemistry makes sense with that, or if it's my imagination. But if his liver enzymes are up, I would probably remove the potatoes, at least for now.

I make similar "cookies" as you describe -- if you are making it without sugar then it is basically pie crust. It should be fine. I do it without the cinnamon. I don't know if I believe the small amount of cinnamon in pastry could have significant sugar, but if you make it without the cinnamon, I think it will still be tasty from his viewpoint.

For bread, I use a recipe by King Arthur flour, called "No-knead crusty white bread"
www.kingarthurflour.com/recipes/no-knead-crusty-white-bread-recipe

It is extremely easy to make. No kneading required! You just need some room in your refrigerator. I make this a couple times a week usually. It tastes like gourmet but without the sugar. If you are gluten-free you can query them in their comments section to ask for help how to modify it so it's gluten-free but also still sugar-free.

I do not go out of my way to buy special chicken or beef. I just use whatever is plain in the grocery (ie no additives but the usual salt that is added to keep it looking plump). I have never had a problem with store-brand chicken. If I want to splurge I buy Purdue! If you are finding the diet expensive then this is where I would start cutting costs.

Is he on a multivitamin? Were you able to find one without sugar? If you are going to have to restrict his diet while you try to figure this out, you will likely need some kind of vitamin support. Nature Made makes a vitamin C that is just vitamin C, no rose hips or orange flavor or anything. I have not found a kids multivitamin without sugar.

You might also add in an extra mid-morning snack for him at daycare, that could help him avoid the temptation of stealing other kids' sweet food.

My diet, even now, relies a lot on dairy. I usually go with 2 scrambled eggs for breakfast, my homemade bread with cheese for lunch and a glass of milk, maybe with a small kale salad (I can do kale, rocket/arugula, and small amounts of green lettuces. I avoid iceberg lettuce. I do broccoli in small amounts. Mushrooms. That's about it. I can tolerate the sugar in spinach but it makes my mouth itch so I avoid), and then chicken or beef with white rice or pasta for dinner and another glass of milk. I can do oatmeal, but in small amounts. My only other cereals are Cheerios and Cream of Wheat. I eat beans, myself, but I tend toward black beans and lentils. Kidney beans I find a bit sweet. Never tried white beans. Garbanzo beans are ok for me too. That's my fiber.

Sometimes yellow onions will be too much for me and then I switch to green onions which give a delicate flavor but with less sugar coming from the onions. Or onion flakes, which will again add some flavor while keeping the added sugar to a minimum.

Cheese: you have to be careful with cheese too. Avoid Velveeta (sadly) and be careful regarding American cheeses. Sometimes they have added sugar. Like Ukbill I am only partially trusting of things with added dextrose. Dextrose just means glucose (right handed form), so should be fine, but it's in deli meat and sometimes after deli meat I feel poorly.

I know it is a lot of work to cook without being able to use most convenience foods. Unfortunately that part does not change. If anything the trend in convenience foods is toward more added sugar every year (that's how it seems to me). I get a lot of mileage out of fried or scrambled eggs, milk, and cheese.

[colormist]

Ah! I didn't know about Velveeta! I've never been fond of American Cheese, so this development doesn't surprise me too much.

[ukbill]

Remember he might be going Hypo simply because he is growing and exercising a lot.

I lives a sea/ saw life when young. if I ran around like everyone else I got ill and shaky and had to eat.. bread and butter and a glass of milk was favourite (or if avalable bread and dripping! food from the gods with plenty of salt and pepper on it.

[rysmom14]

Hi HFImomof3.

There only cereal that he eats is the Cascadian farms Purly O's, and if you want to count oatmeal as a ceral. That's all that I have found to be safe.

I really like the bread recipe you linked too! I am all about something with few ingredients that will last me a long time, and I especially love that you can bake off smaller portions at a time. As far as the multivitamin, that whole dilemma has been a yo yo. I know many people with younger kids use the nanoVM, but say that i's hard to get the large dose into their kids. I haven't found anything that was made for kids that is safe. This is something that I have been trying to work with his Dr's and now the dietician to help find a good option. so far no one has come up with anything. I may just try the NanoVM and see how it goes.

since we have limited his food back a good bit since the blood results, I think he eats pasta and cheese and plain yogurt and ground beef and ground turkey the most. He drinks a ton of milk too.

[jenn123]

Someone on this board had a link up for krkman children's multi vitamin/mineral capsules. Our docs looked at them and approved. We have been using and it is a smaller amount to get your kid to ingest to meet needs than the Nano vm.

[ukbill]

So long as you HFI child eats red meat (Beef Lamb Mutton) and I would suggest liver from some sort of animal (chicken liver pate if nothing else or Meat loaf) then vitamins (except for Vitamin C) will not be really needed.

Vitamin additions to diets are only really required for Vegetarians and Vegans in particular because contrary to common misconception Vegetables have very little vitamin content that is usable to a human.

Green Cabbage or leafy spinach (not tinned) with stalks removed (fleshy white veins cut out in cabbage) briefly cooked so still slightly crunchy will add all additional vitamins that may be missing. Only feed small amounts though over feeding of any vegetable can cause adverse reactions for an HFI.

Vitamin C is an easy fix the chemical being available in all cook shops or chemists by its formal name of L-ascorbic acid.

A little but often will do the job, its almost impossible to overdose on it.

A tip of a teaspoon of L-ascorbic acid in a glass of water makes a refreshing lemony type drink too! Which is good news on a hot day when refreshing drinks for HFI children (HFI safe beer being not advisable) are hard to find.