Tests to request

[antonia]

Yes, the last time we were in to see genetics we were told Palmera's creatinine was high.

[rachael]

My son's labs show creatinine at 38mg/dl, but that's so much higher that I wonder if it's a different test? It doesn't show a normal range for creatinine and the test is called "AMINO ACIDS QUANTITATIVE WITH CREATININE, URINE" The Protein Creatinine Ratio is solidly in the normal range. (I may have figured it out, his was a urine test, was your child's test blood? I found creatinine in the blood test results and it was only .30)

[antonia]

It was a long time ago so I'd have to look up those labs. It was a blood test and I'm pretty sure it was creatinine because I remember wondering if the high protein breakfast she ate before having her blood drawn would have affected it. When I asked what it meant that it was high the doctor didn't have much to say about it. Just said we would see what her labs looked like the next time. I remember looking it up and reading that it can be related to kidney function and reading about the BUN ratio test. BUN ratio was not part of our labs though. Sorry, I'm not much help. I'll see if I can find those labs.

I do worry about Palmera's renal system. Before eliminating the fructose her ultrasounds showed signs of bladder and kidney inflammation. The inflammation gone after several months on the HFI diet, but she still has poor bladder control. I wonder if there is permanent scarring or something. Urologist told us that ketosis or acidic urine could have been the cause for the inflammation.

[antonia]

At least I don't remember taking a urine sample during that visit. Pretty sure it was blood.

[colormist]

I'm not sure what causes it, but after I accidentally (or on purpose) eat fructose, I notice my urine feels very hot. Drinking more water helps flush things out more quickly. I can't find an answer for it specifically, but if the fructose 1 phosphate we flush out of our livers is acidic, then that could be the cause of the inflammation.

[antonia]

The urologist was referring to the high level of ketones produced by the body which make blood and urine more acidic. When the body can’t produce energy from sugars for some reason, it produces ketones instead which produce energy through a different pathway. I’m not sure if fructose byproducts would significantly alter blood and/or urine pH balance or not, but that’s an interesting question. So much we don’t know or understand.

I have long wondered why doctors don’t tell HFIers to monitor ketones or ketoacidosis like they do diabetics. Many of the symptoms you experience could be from blood acidosis rather than hypoglycemia. Thirst is one of the symptoms of acidosis as the body needs more water to flush ketones out. In another thread, Ukbill described a difference between hypoglycemia symptoms and fructose poisoning symptoms. I have never forgotten that description and have been thinking about the role of acidosis in HFI ever since. If you look up the symptoms of ketoacidosis (you’ll find mostly in reference to diabetics) this is more what that poisoning sounds like to me. The higher the level of ketones the more severe symptoms will be. In diabetics ketoacidosis can be life threatening. This is why they monitor it on a regular basis. Maybe since HFIers won’t experience dangerous ketone levels as long as they refrain from eating fructose, this is why they don’t feel it’s necessary to monitor it.

[colormist]

Since I'm totally expecting some accidental fructose ingestion this holiday season (I really cannot remember a holiday where I didn't have fructose poisoning), I'm ordering some keytone testing strips. I'll report back my findings.

[ukbill]

antoina I have noticed my urine smells often like what I have eaten.. this might be Ketones (because Ketones are smelly compounds) particularly if I have vitamin B supplements or eat anything full of vitamin B like the thick brown stuff from the bottom of a Roast joint of meat! (YUM!).

Also if I have been a bit lax in my diet my urine is very frothy in the toilet bowl. Not something the Female of our species would tend to notice partly because of the different heights involved I would hazard to suggest?

With Urine tests my Dr usually says there is some protien in it but is not concerned about it.

[antonia]

I have searched for ways ketones affect urine, appearance and odor, but come up with nothing. I know that ketones will make the breath smell sour, fruity or like acetone/nail polish remover. I noticed this breath on Palmera when she was a toddler and mistook it for gingivitis. To me, it reminded me of orange juice that had started to go bad or ferment.  Not a good fruity smell but a sour, unpleasant one.  

Finding information on ketosis is tough.  It doesn't help that the ketogenic diet has become a trendy diet for weight loss, people purposely put themselves into ketosis by restricting carbohydrates, so there's just a whole lot more noise and crud out there on the internet. It is noteworthy to understand the difference between ketosis (mild to moderate levels of ketones) verses ketoacidosis which is when ketone levels are too high or high enough such that they make you sick, and if left unchecked can even lead to death. It's considered normal to experience ketosis under certain circumstances such as fasting, illnesses or even for athletes who undergo heavy training. But, in the case of my daughter, it is not normal for her to produce ketones when she does not restrict carbohydrates or do heavy exercise. Even when she is ill, I was told that she produces 8-10 times the level of ketones a "normal" person does.

I have read that protein in urine causes foaminess. And this makes sense to me given proteins do produce foams upon agitation. (Think culinary, egg whites and meringues.) Never noticed this with Palmera, but she's at the age where she uses the bathroom independently and, yup, there is the height difference between males and females too.

[antonia]

I'm thinking about purchasing a blood ketone meter. Even though Palmera doesn't experience ketoacidosis anymore (this is where she starts throwing up and has severe stomach pain), I wonder if she still produces smaller amounts of ketones on a regular basis. Another sign of metabolic abnormalities can be the teeth. When she was three, the dental hygienist told me she had the mouth chemistry of a diabetic. She said this mouth chemistry caused what she called black stains on the teeth (they look more brown to me than black) which she observed in her diabetic patients. These stains are not to be confused with cavities, they are not related to tooth decay but are simply stains. Since diabetics usually have high blood sugar (unless they're taking too much insulin or other blood sugar lowering meds), not low, I assume the similarity observed in my daughter is from ketosis as opposed to other chemical changes in the breath or saliva due to sugars. Anyway, Palmera still gets these stains on her teeth, so maybe I should start monitoring her ketone levels.

[ukbill]

Antonia could it have been too much fluoride? I know that permanently stains teeth?
Might she have been swallowing her toothpaste?

[antonia]

Hm, well I don't think so because when she was three I stopped using toothpaste on her and switched to just brushing with water. She ate some toothpaste (with sorbitol) once, after seeing her Grandpa try her toothpaste she decided to do the same, and it made her really sick. So at that time I just stopped using it. HFI and metabolism not even on my radar at that time, was just learning about fructose malabsorption and that's what I attributed her reaction to it to. But the stains continued regardless. They do come off with mild abrasives like baking soda, so they're not permanent. And the hygienist specifically inquired about whether Palmera was diabetic, she didn't mention fluoride. When the stains continued after we'd been on the HFI diet for some time I thought maybe the enamel on her baby teeth had been damaged by ketones in her saliva or something. But now she's got several adult teeth and these get stained as well.

I just recently, in the past few months, starting allowing her to brush with toothpaste again because she understands she cannot swallow it and rinses her mouth really thoroughly with water after brushing. This toothpaste does not contain sorbitol. The only ingredient I'm unsure about in it is glycerin, but figure it's okay as long as she's not swallowing it. It is a fluoride paste though and our water is also flourinated. So, I will look into it.

[colormist]

I got my strips the other day and tried them after eating Doritos (do not eat doritos). My urine was the typical "Laura has been eating fructose somewhere" color and smell, but the ketone strip didn't change color at all (registering 0 ketones). I'm going to test again over thanksgiving, but I won't be surprised if I receive the same results.

[antonia]

If not ketones, I wish we knew what caused the changes in your urine that you observe. Did you feel any other symptoms? And, yes, the mom in me says stop eating Doritos.

In order for the body to produce ketones it has to go without sugars or the ability to process any sugars for some time. Maybe if you tested in the morning they might show up because throughout the night you're not giving your body any other safe sugars or glucose to burn. Or maybe you don't produce any ketones unless you've had greater quantities of fructose, enough to impair the liver from processing safe sugars too? I've never tested Palmera, so I have no idea if she produces smaller amounts of ketones. The only time her ketones have been tested is when she's sick enough to take her to the ER. In which case, if we're there!, that means she's already gone into full blown ketoacidosis.

Either way, just like hypoglycemia, it's probably difficult to "catch" before you become sick and it's really obvious. I'm still thinking of getting a blood ketone meter though. Apparently urine sticks are not a very accurate method. So I've read, even diabetics don't find them very reliable for catching ketosis before in turns into ketoacidosis. Plus trying to test a seven year old, little girl's urine is less than an easy task. I hate to poke her though. It would just be nice to have some way of detecting when she's gotten smaller amounts of fructose. And blood glucose doesn't seem to work for that.

[rysmom14]

ok, so this may be weird, but some mornings my son's pull up is super smelly. and darker colored. would you say this is same as the " I must have eaten fructose somewhere" pee? he has been super grouchy and clingy for the past couple of days and then has the smelly darker, more orange pee.

Thanks!

[colormist]

Yup, dark and smelly. My husband says it smells sweet. It's the easiest way for me to tell if one of the foods I recently ate with "natural flavors" added actually had sweeteners in the mix.

[ukbill]

Drink more Tea, milk and water!

I easily seem to get dehydrated so I must drink 2 or 3 liters a day and I judge how much I am drinking by the colour of my pee.

I got seriously dehydrated on a trip to Paris (my 1st solo overseas trip) before I could get some water. I had very dark almost dark red thick pee.. not good.

2 liters of water later things got a lot better, even if I felt almost sick with that amount of water sloshing around in my tum, drinking it slower would have made more sense.. however read the list of side effects I get.

If I eat high vitamin B type foods (chicken livers or liver from any source) then the colour will darken almost instantly.

Never eaten enough Asparagus to make the colour go green but I am assured this can happen.

Last night (I work nights) I was needing a pee just about every 2 hours the result of having eaten too much salt 48 hours earlier and holding the excess water I drank because it made me even more thirsty than normal.

When I am dehydrated I seem to almost have a "reaction", many of the symptoms are the same however I do not feel anything like as bad.

Key symptoms are Confusion, irritability, poor(er) eyesight than normal and very clumsy to the point of appearing quite drunk. This is an extreme case however.

A glass of milk followed by some water to clear the mouth works well, giving a (lactose) sugar boost as well as rehydrating.

In the case of really bad illness when vomiting and diarrhea are a problem (something like the winter vomiting bug Norovirus) the standard rehydration sachets are no good for us because they contain sugar!

However adding a little salt to a glass of water and I mean a little!

No saltier than tears is a good guide, helps the body adsorb water much quicker.. before your body can expel it again.

I aim for a like straw colour to my pee. Medical documents all seem to recommend this as ideal to reduce risk of kidney stones.

Hope this helps?

[antonia]

I remember times when Palmera was a toddler, she would crawl in bed with us in the morning and the smell of her diaper so awful we could not stand it. I recall at least once noting the diaper also very dark in color, like an orangy-brownish color. I would try to think of what she ate to give it such an awful smell because I know some vegetables cause urine to smell such as asparagus. But then my husband and I were eating the same things and our urine did not smell. We would call into the doctor and they would tell us to bring her in and get her checked for a urinary tract infection/UTI. I can't tell you how many times she was tested for a suspected UTI. When she was sick with anything involving fever, eventually it would turn to stomach pain and vomiting. I'm sure now this was hypo and ketoacidosis, but what was she tested for.... UTI!

I also know she drank tons of water as a toddler too. I realized this after having a discussion with one of her preschool teachers on potty training. She told me she encouraged kids to use the toilet by telling them they get to watch the water turn yellow with their pee (I guess that's exciting to toddlers, lol). And I remember telling her that Palmera's pee was usually too light in color to turn the water yellow and she simply got tired of going to the toilet so much, it constantly interrupted what she was doing. So we had occasions where I noted it was dark, especially when sick or in her night time diaper, but on the whole and during the day really light because she drank so much water.