unsure of FM vs HFI

[charlie]

Hey Bill, sorry to hear about the food poisoning, hope you are feeling brighter now, it takes a long time......... but i did tell you not to open those food parcels that Tammy sends you............

Ann, I am getting somewhat concerned that things are getting very muddled for you here, I do think you need to strip back to basics and deal with one thing at a time, keep it simple, then when one question is answered, then try and help another. you need to prioritise what you feel is your fundamental problem and start there. I for one am getting very confused about your history and symptoms so feel we aren't necessarily giving you correct advise.

[Tammy]

Oh Charlie, you do make me laugh. Lets see..........how can I poison Bill next since you now warned him..... hmmmmmmmm will have to be trickier ;D

[ann]

OK, makes sense, Charlie. I think a lot of the problem is that I've been a low fat vegan for so long, and just getting worse, and then trying to do an about-face too quickly and taxing my very de-conditioned GI system to cope with meat and fat (and psychologically I'm struggling with it too.)

Just cutting out the fruit and most of the vegs has made a big improvement in how I'm feeling though not what I would call great yet. Still working on a firm diagnosis. One of my docs has just agreed to order the DNA test through Dr. Tolin's lab, though, and I contacted Dr. Tolin who said the next batch of tests will be run end of this month or early to mid July. So working on getting this together before I leave town for about 6 weeks. It's actually a load off my mind, though, to feel I don't HAVE to eat vegs so much anymore...i had been eating more and more of them before I heard of FM or HFI in an attempt to improve my health.

Ann

[nicoleh]

Hi Ann,
it is rather taxing on the system to make big changes sometimes, and Charlie has a good point - that you should perhaps focus most on the fructose-free element as highest importance. The supplements I recommended and guidelines for eating certain fats above others should help with the transition but do remember that it's transitioning to a fructose-free diet that is more important.

it's always tempting to think that you can just cut back a little here and there and that you'll be ok with 'small amounts' of something. However in reality it's always a lot clearer to work forwards to determine tolerance rather than backwards. i.e. go to zero grams of the thing you think causes a problem (Fructose) and then after a while, if you're well, add in a little to determine when you react. If you cut back more and more, it's much harder to know when that reaction has taken place. to that extent my comment that you should be able to keep in some dark leafy greens at one meal per day might not be helpful. you may be better with none for the moment. As I said, cutting out all wholegrain will be reducing the fructose a lot, and you MIGHT be able to manage greens at some stage if you're not on any other fructose. for now though absolutely none might be preferable - only you can determine that.

[ukbill]

Tammy I should have been warned off by the 1945 WWII symbols of the food packets you sent me.

I had no problems keeping food down so to speak but then I've had a lifetime of trying to keep down things I have eaten things that make me want to throw..

100% better now and 1/2 a stone (that's 8lbs for our american cousins and about 3.5Kg for our metric ones) lighter as a result.. just so damn hungry now all the time!

[ann]

Just a quick update...had the hydrogen breath test 2 days ago, for fructose malabsorption, and it was negative. I was really surprised, as I have thought I probably had it. The test, however, made me feel lousy, and I still feel lousy. Day two of migraine (which is why this will be a brief update!), very fatigued, depressed, no energy, and mild nausea. During the test, I got very sleepy, some very mild stomach cramps, and some dizziness/lightheadedness, and some chills/sweats (felt hypoglycemic) but when I checked with my glucose meter, the numbers were NOT too low. Actually the numbers didn't really go up or down from beginning to end, and I was checking every 30 minutes. So I don't know what's going on. It's still hard for me to think the dna test would show anything, because I just don't seem intolerant as most, if not all, of the confirmed cases I've read about here. But, waiting for this load of fructose to clear from my system...showed me, at least, that whatever's going on, fructose is not good for me.

Ann

[nicoleh]

Hi Ann,
with the amount of sugar present in the fructose drink your numbers definitely should have gone up if there's nothing abnormal going on with you. pity you didn't check a bit more often, maybe you missed the spike. Still, sounds very unusual. I"d progress to the dna test if it was me. you may actually be 'tolerating' less than you think. good news that you don't have malabsorption though, that's one less thing to worry about! Hope you feel better soon.

[charlie]

Hi Ann,

There are several possible answers here.
1). You don't have a fructose related problem but your body is showing otherwise.
2). The test wasn't done right. I can't link you to it today as not on my computer but on my probord has a link to an article about the correct way to do the test. Sometimes the results are affected by what you had the day before.

I do have another theory too about do you have to be in a reactive state when you take the test. The first time they did it on Meg she blew the graph but she was still on stuff then. A couple of years later they re did it but she had been on the hfi diet and it was only just positive.

So maybe you do need to follow your instincts and stick to the diet obviously being cautious with the diabetes factor if you are feeling better, sod what everyone else thinks about it. hFi sounds less likely due to what you have been eating but sounds like your body is struggling some kind of sugar reaction. When Meg does her sucrose challenge next week they are taking full bloods and urine too as the hydrogen didn't rise but her behaviour dramatically changed and I do wonder why they don't do this as a matter of course.

[ukbill]

Refined Fructose is not good for anyone just ask any type 2 diabetic!

Interesting though who did your genetic tests?

Also lets discuss the test for a min.

If you can answer these 3 questions it might through some light on the subject.

What did you eat the 24 hours before the test?
How long was it from the last time you ate food to the test?
How much Fructose did they use in the test ?

Can you check to see if the Glucose tester is actually testing Glucose or All sugars in the blood (for a diabetic this would be all that is necessary)

What were your reading both before the test and during the test?

If you were metabolizing Fructose properly your blood glucose might have gone up .. but I am not sure about the metabolism of fructose?

Is it converted into glucose at any point in the process??? or straight to Glycogen or Glycogen / high density cholesterol (if in excess) I will have to watch Dr Lustigs video again to make sure.

[ann]

Thanks for all the thoughts on what this does/does not mean. I, too, wondered whether I had unintentionally skewed the results by having drastically reduced the fructose in my diet for about 3 weeks before this test was done. I also question the accuracy of my glucose meter, as the test strips, I regret to say, are outdated. As far as I know, it only tests for glucose.

I think the test was probably done accurately. They had me, from noon on, the day before the test, eating only white rice and chicken. I was fasting from 8 pm on, the day before the test, and of course on the day of the test. It was given at 12:15 pm. The fructose load was 25 gm of fructose dissolved in 250 cc of water, which I sipped over about 5 minutes. (nausea, pretty quick right after that!). My fasting blood sugar before the test was 77 mg/dl (this was after about a 16 hr fast), and the maximum value during the test was 90. It stayed pretty much right at 77 for the first hour or so. I do wish they would do the blood testing, because even with non out of date strips, they always warn that these are not nearly as accurate as lab testing.

I haven't had the genetic test yet; I was really thinking I had FM and the genetic test would be an unnecessary expenditure. As Charlie says, however, regardless of what the tests show, my body is giving me plenty of test results as it is, and telling me what to avoid....

Still feeling pretty unwell today, headache all day, continuing nausea/no appetite, and crampy intestines. As Bill says, pretty convincing that fructose is not a friend, to me and to anyone in excess.

Thanks again,
Ann

[nicoleh]

if only you knew if those strips are accurate! staying at 77 after such a huge load of sugar is NOT normal.

[ukbill]

What is your body weight in Kilos? the dosage for the challenge test is usually 0.15g / Kilo for the traditional challenge test.

If your blood sugar went up at all (and the strips are testing Glucose only) then you cannot be classic HFI. but it should have gone up after 20 min to above the starting level.

A 12 hour fast should give a blood glucose level of around 5 (50 USA type measurements) as a starting point.

Can you get pure Fructose? if so test the strips with that in solution to see if they react. Or use fresh grape juice which contains a lot of Fructose. (but not sure how much Glucose)

I have heard of FM people being given very much more than 25g for the hydrogen breath test .. up to 150g I have heard before.

I am right about that??

[ann]

Yes, I was surprised I didn't see the bs go higher. I'm not sure if I can get pure fructose; will have to look around. Would wonder how contaminated it might be with dextrose. I don't think I'm a classic HFI; a lot of what I read about the rest of you coping with is more extreme than I've had to cope with, though interestingly, Fred's description of experience doesn't sound as extreme as many of the rest of you, yet he tested positive. Still, I think he is certainly more symptomatic than I am!

Before I went very low fructose, I would frequently wake with a morning preprandial bs of around 66-70, but this has improved since reducing the fructose. I am small, 5' tall, 80 lbs, which I believe is about 36 kilos. Yes, I'm underweight, but no, I'm not anorexic. My father is small and underweight too. Gee, if they'd given me 150 gm of fructose for the test, I'd be done for, even without HFI! Maybe the 0.15 g/kilo is for an IV challenge? Mine was oral, of course. Seems like an IV challenge could be about lethal for many people...

Finally, I'm starting to feel better, but not back to baseline yet.

thanks for your thoughts, as always.

Ann

[nicoleh]

hi Ann,
I myself am seriously underweight after 6 years of almost constant breastfeeding, however at 51kg and 5'11, I'm feeling very well and have no adverse symptoms so I'm not too worried. however if I was your weight and height I'd be very concerned about my health. If your weight isn't a typo - that's technically classed as emaciated. I highly recommend you start seeing a qualified holistic doctor and registered nutritionist to build yourself up nutritionally and gain some weight. I know that can be really hard, but it will be much easier on a non-vegan diet. Remaining at that weight puts you at serious risk of osteoporosis, yes, even if you get enough calcium. bones need weight to build strength (thus the importance of weight bearing exercise). I hope you can find someone local to you that can help you with this. I would recommend that you try contacting the office of Dr Thomas Cowan in California (i'm sure he'll google easily) and see if they can recommend someone a bit like him close to you.

The IV challenge tests I've read about on pubmed use 200 or 250mg/kg. I imagine there are some people that make it to a 150g dose - by accidently missing a decimal place in the dosage calculations! is that what happened to you Bill? If DD ends up having one I"ll be sure to triple check the nurse's maths - myself!

[lucky]

Hello all,

In Canada, the FM Hydrogen Breath test solution consists of 25-50g of fructose dissolved in 150-250ml of liquid (water).

My son (and later the rest of the family) was given 25g.

The i.v. version (where fructose is administered directly into blood) is not used here, as it is considered too dangerous.

From what I understand, the benefit of the latter (unused) version was that by directly challenging fructose into the blood it bypasses any type of potential gastro malabsorption issue (that may only be letting a fraction of the test fructose into bloodstream). For me, this leaves the interpretation that malabsorption could potentially skew or dilute results, unless that variable is excluded.

Regardless... testing by injecting fructose directly into an iv (into blood stream) is not utilized (at least here) anymore. Although I very much understand and respect the reasoning, I wonder if some -with suspect HFI type issues but not as severe- are being 'missed' by being protected to some degree (if even possible) by the mere malabsorption itself. What if the malabsorption IS the protection in some? And the more severe the malabsorption, the more the protection? And as such, the less the fructose (load) transported to the liver, the more discrete, diluted/mild (and slower) the metabolic symptoms? Perhaps this is the reason some with on-going severe FM also seem to demonstrate a vague metabolic connection, but show conflicting results in tests. Can you imagine if it all comes down to a technicality of an FM person (but severe and suspect for HFI or other) not releasing the full fructose amount into their bloodstream (after eating/drinking) because some of it may stall in digestion? If so...the parameters for the tests/results would then be flawed for these particular people, as they are wrongly being tested/evaluated as if full amt given is also circulating (and no additional fructose malabsorption issue/potential is present). Perhaps this may be a possible factor in conflicting or inconclusive lab results and symptoms. Who knows...

Unless, of course, it is simply a situation where there is no genetic issue involved in the metabolic signs being seen in some with severe FM. Perhaps it is just a case of mistaken identity. Although there may be a serious FM issue, the confusing metabolic signs may simply be due to a severely taxed and unbalanced body. And not a direct link to consumption of fructose (HFI) -but- a destructive consequence of long term mismanagement of personal FM diet requirements. And as such, is correctable (and metabolic symptoms reverse) once the 'strain on the system' is dealt with strategically and the body allowed to heal.

So, the difficulty for a specialist is to decipher if issues in a chaotic system eventually resolve after eliminating other variables (infection, illness, vitamin/hydration/electrolyte stability, other health/genetic factors) - or- if it continues to show suspect for something other than just 'simple' FM.

This is how some of my son's testing was approached:

* Hydrogen Breath test : Fructose
-oral fructose solution
-breath sample testing / no labs done

* DNA: HFI, FBPase deficiency
-both negative (but symptoms suspicious)

* Fasting Test
-tests fasting strain on body (FBPase..) / labs done
-in-hospital / on protective iv

* Fructose Challenge
-in-hospital / on protective iv
-another hydrogen breath test but WITH all labs (blood, urine)
--fructose is NOT put into iv--

The reason for the protective iv is to easily extract blood through out (and monitor levels during test) and for safety in case of emergency (quickly declining blood sugar). It is far safer/faster to inject stabilizing solutions into an iv when time is of the essence.

* Interesting side note: It is exactly this iv (and possibly two others before it in earlier childhood) that metabolically corrected my son. Yes, it was a safety measure to these particular tests, but it also rebalanced our son as a bonus. It was a missing piece to part of his puzzle and pleasant surprise for our specialists. So don't discount how deceptive imbalanced electrolytes/dehydration can be. Among other things, it is needed for blood sugar/electrical balance, digestion etc... But at it's onset, slowly sliding symptoms can be subtle -even to doctors- as they focus on other 'bigger' genetic issues needing exclusion. And simple vitamin deficiencies are equally serious and therefore need to be checked through FULL blood counts (also including B12, C, D, zinc etc...) until health is fully restored long term.

These can be overlooked or initially dismissed...and yet be a crucial issue (as to why the body shows metabolic difficulty w/o a direct genetic link). Any imbalance that has the potential to show metabolic signs (genetic link or not) needs to be thoroughly investigated and corrected, to not become further dangerous or life threatening over time.

So now, I'm a big proponent of any situation or test that gets a person an iv alongside it. If nothing else, it benefits a very worn out body. Rehydrate/rebalance, and then (with your specialist) work all the other variables of safe diet/vitamin balance and further testing. For us, it was a win-win combo.

[nicoleh]

HI Lucky,
what you say about FM potentially disguising HFI is absolutely true. I have looked over and over at my daughter's condition and blood work, and had her seen by an FM specialist, and it looks just impossible that malabsorption is her only issue. The FM specialist agrees. I think that dropping the IV fructose tolerance test from the possible diagnostic options has resulted in quite a few cases of HFI being missed. Let's face it, how your body handles fructose is the basic question! what your DNA says or doesn't say is only a guideline. I think in suspicious cases where DNA doesn't show anything, that an FTT should be performed - intravenously if the oral doesn't show anything.

For a start, has the medical profession considered that there may be things other than a DNA mutation that may disable the Aldolase B enzyme? what about a tissue toxin? what about cells that don't transcribe the DNA properly? what about a nutrient that is undersupplied and is vital for Aldolase B function? what about cellular conditions that result in another metabolite competing for the Aldolase B enzyme and making it unavailable for the fructose-1-phosphate? I think there are potentially a lot more causes of poor aldolase B function than simply the DNA that codes for it.

For this reason, if we continue to see any abnormalities in DD's lab work when she eats fructose, I'm going to really push the docs to do an FTT properly. Especially since there's a 10-15% chance of your DNA mutation not being detected on the test she has had done.

[ann]

Thanks, Nicoleh, for the name of the holistic guy. Yeah, I'm concerned about osteoporosis, too, and am scheduled for a bone density test in the fall. Some months ago, I cut way back on cruciferous vegs, of which I'd been eating a lot, and then found out about a month ago, that I was overmedicated with the synthroid, even though I'd been on the same dose with good blood levels, for years. It explained to me why I'd lost ten pounds without trying, and why it was hard to gain it back. So, I stopped the synthroid cold turkey 3 weeks ago (maybe not a wise thing to do, but the weight loss wasn't the only hyperthyroid symptom, the other symptoms I'd thought were menopausal now are pretty obviously from the thyroid). Anyway, hoping the weight will come back more easily now. I did already decide, I won't be seen in a bathing suit this summer, until the weight comes back!!!

Lucky, your post, and then Nicoleh, your thoughts, too, on other things that can go awry to cause a person not to be able to metabolize fructose, make so much sense to me. Thanks for posting.

Ann

[nicoleh]

Hi Ann,
cruciferous veg do suppress the thyroid so you would have needed more synthroid while eating them, and thus seeming like it was too much once you stopped. If cruciferous veg affect you like this, you should definitely stay away from soy foods as well, though a little fermented soy sauce won't hurt. I guess it's got fructose anyway, but just in case you later decide that fructose isn't your problem, you'd still want to avoid soy. My aunt was a 'test bunny' for a new soy drink as part of their market research. she drank it 3 times a day and developed low thyroid within 3 weeks. she'd never had a thyroid problem before. scary stuff, given how much soy is throughout our food supply these days.