HFi or FM?

[tikitavi]

Hello all, I am new here and wanted to ask for your feedback. Unfortunately I can't afford to go to a doctor or get genetic testing at this time, but I was wondering if based on my experiences and reactions if you think I am HFI or FM. I understand that this would not suffice for an actual diagnosis. But it might help me until I can afford an actual diagnosis.

For many years now I have only been eating plain unseasoned meat, eggs, white rice, white homemade bread, and plain dairy. I can't seem to to tolerate ANY fruits or veggies. Also nuts and seeds seem to be problematic too. I also do not seem to tolerate any sweets at all either. I remember having these problems all throughout childhood and my adult life too.

When I "cheat" and have something sweet or fructose-y, I get these reactions, often lasting up to 4 days:
-what I call "oogy feeling": kind of like nausea all over, sickliness, weakness, fogginess, sometimes completely "crashing out"/falling dead asleep
-gut pain, discomfort, bloating, nausea, diarrhea usually but sometimes constipation too
-urethra pain, bladder pain
-night sweats, insomnia
-raise in bodyfat percentage (water retention?)

I did like Pixie Stix and Smarties as a kid. I did NOT like any fruits or veggies and would beg my parents to not have to eat them. I remember as a little child, I would ask for white sauce instead of tomato sauce on my pasta, and white chocolate instead of regular chocolate in my Easter basket. I do not have an instinctual repulsion towards sweets though, and even as a adult still sometimes stupidly eat sweets when offered to me, and really regret it later.

I thought at first it might be FM, but I can't seem to tolerate ANYTHING with fructose at all, and all the FM/FODMAP guidebooks and "safe lists" were NO help at all. Also I tried taking Fructosin, which is supposed to help with FM, but it seems to only mask the symptoms for a few hours or until the next day. Taking balanced glucose does not help. It seems if there is ANY fructose at all, despite having as much or even more glucose, I still feel like complete crap.

I also don't tolerate fructans well either, although I seem to be OK with homemade white bread as long as I take a digestive supplement for the gluten. Otherwise I get very irritable, groggy, brain-fogged and angry. I am also casein intolerant and take a supplement for dairy or I get constipation from the casein.

I have read through the postings here, and people's recipes and "safe" lists, and it does seem to me that perhaps I do have HFI.

Please let me know your thoughts, thank you!

[charlie]

Hi, nice to meet you.

First question, let us know where in the world you are, as people near you may have ideas of where you may be able to get tested. If you modify your profile you can fill in location then it shows up each time you post so you don't get asked over again.

As to which one you have, if any doubt to start with treat it as though it may be HFI and completely detox as this is a more serious condition if you do keep having fructose. From your symptoms and my experience it could be either condition but the best way to start is with completely NO fructose ie no fruit, veg and sugars for several months to settle the system. If you feel better then it may be worth carrying on for some time. Or start challenging lightly with safer FODMAP foods little by little and see what happens. If you can tolerate them then you have FM, if you react it sounds more like HFI and that means the diet for life.

HFI don't usually have a problem with fructans unless you have a separate gluten issue, that is more FM.

If you could eat fruit and veg as a child without reacting and being ill the chances are you have FM that has gradually developed into a more sensative issue.

Have a read and a think, check out my FM proboard too for ideas, although that has only recently started so not so much general info on it yet.

Like we always say tho, this is only our personal info, the safest thing is to get proper medical advice if you can.

all the best

Charlie

[colormist]

Your symptoms mirror almost identically my own as a child. My guess would be that you have HFI. I would suggest continuing eating things you feel are best for you (ignoring any dietary guidelines that you feel wrong following) until you can get to a doctor for proper diagnosis.

I just wrote a reply to someone on my blog that mentioned taking dextrose before eating fructose to help digest the fructose. It may be okay for people with FM, but is definitely not okay for people with HFI. It just delays your reaction to the fructose.

[tikitavi]

Thanks for your responses!

I forgot to mention another of my reactions is a sickly-sweet taste in my mouth, that lasts for up to a day or two after having the offending item.

I will go forward then as if I have HFI for now, and continue to be very diligent about avoiding fructose.

I am in the midwest USA, but I don't think I can post a location yet in my profile. Maybe when I have more posts?

I did always have reactions to veggies and fruits as a child. I remember punching my bloated gut to try to get it to go down! Luckily my parents weren't too pushy about it and often let me adjust my meals. So I kind of self-adapted. I think that is why it has taken me so long to finally figure out the problem. I seemed to naturally avoid the problem foods.

So white flour is OK, right? Does anyone else make their own bread? If so, what do you use for the yeast to feed on instead of table sugar?

[charlie]

Yes, for HFI white flour is OK, brown anything grain is not its higher in fructose. You don't actually need sugar to prove the yeast the starch on the grain does enough, but if you do want to use some use glucose/dextrose powder.

Good luck.

[colormist]

Also, Panera Bread makes some awesome fructose-free breads. They're a little expensive, but delicious and they slice the bread for you.

[tikitavi]

I made my homemade white bread this afternoon with dextrose in place of table sugar, it came out great! Thanks for your help!

I also feel much better after eating it too. This is all making so much more sense to me than FM! Thanks again!

[tikitavi]

P.S. I didn't realize it was possible to have the yeast feed on just the flour and no sugar was needed at all! I will try that with my next batch of homemade bread! Thank you!

[tikitavi]

Oh - I just went to Fineli (the Finnish nutrient database), which I think has the most updated info on fructose, and the only grains they list as having zero fructose are long-grain rice, and corn meal and corn starch!

Here's the link:
www.fineli.fi/topfoods.php?lang=en

I chose "Foods containing most and least" then chose Fructose under "Component", then under "Number of foods" I filled in 600, and then clicked on the button for "Least". This shows a listing of all the foods with zero fructose.

I also looked up wheat flour, and it does contain fructose. So does short-grain rice. They list eggs as not having fructose.

So I guess white bread isn't safe after all, even without sugar in it?

[ukbill]

It purely depends on which form of HFI you have.

Most of us can still tolerate a tiny amount (less than 1g a day is common) Fructose as we still produce a small amount of the missing enzyme in our Kidneys.

A few people are what I call "double zero HFI". They cannot tolerate ANY fructose at all.

Believe me if you had that you would have spent most of your life in hospital!

So don't panic about white flour.

If you eat something and still feel good or better than you did before eating it, 20 min later (unless its very oily or fatty) then its most likely OK for you to eat. This is a rough and ready test.

OK

[tikitavi]

Thanks, that is a relief!

I've been reading through the recipes here too and I'm pleasantly surprised! I've been actually quite strict and haven't been having anything much besides just plain meat, dairy and my homemade white bread or white rice, for many years now. So I'm looking forward to trying some new dishes! Especially as the holidays approach, so I can bring some things to gatherings that I can eat.

Thanks everyone!

[tikitavi]

I made my homemade bread without sugar or dextrose at all as you suggested, Charlie! I just proofed the yeast on some flour. It worked GREAT!! In fact, it tastes MUCH better without the sugar! Thank you so much for the suggestion! It was so good I actually had three slices in a row with some farm fresh butter. MMM, wow that is good! Thanks again!

[tikitavi]

I just wanted to thank everyone for being so informative and helpful! I am feeling SOOOOO much better since getting rid of all the fructose and sucrose (and dextrose)!!

I still felt so awful when I was trying to follow the fructose malabsorption or low-FODMAP guidelines - which makes sense now! There's still a LOT of fructose and sucrose in those recommendations! But now, I am like a new woman! I feel 100% better!

I really appreciate the help and support here. I feel like I am much better prepared now too, I know what foods and ingredients to avoid now, and what is safe! And how to make substitutions in recipes. Thanks again, everyone! And especially for being tolerant of someone without an official diagnosis. I really, really appreciate it!

[esmee]

tikitavi,

In case you are interested in getting the genetic testing, here is what I just found out...

I spoke with Dr. Tolan this morning and he said they just ran a batch of blood samples for the HFI gene test 2 weeks ago. They need 4 people to run the test. I will be the first person signed up for the next batch. He expects to have enough people to run the test again in late February or early March. You do not have to pay for the test until after it has been completed, and then you will be billed by the University. So, I will get my blood drawn this week or next and send it off to him. He was a very nice man.

I am glad to here that you are feeling so much better. How long have you been fructose-free now?

esmée ♥

[tikitavi]

Thanks Esmee! I can't afford it for now, but I'll keep it in mind!

It has been about two months since I've really been strict fructose/sucrose/dextrose free. Except for some few special occasions like when I stupidly had some sweets at Christmas and one instance early last week, I had a horrible head cold and took some cold medicine which had sucrose in it (made me want to throw up! gak!!). I have been low-fructose for quite a long time, BUT, I just thought I had FM and not HFI, so I still was having some sucrose and dextrose here and there. Getting rid of them both has been VERY helpful. Also, I have been more careful too about completely avoiding foods that I used to think were OK: potato, dehydrated onion, etc. I know better now and avoid those items. I am now only having local 100% grassfed dairy, white wheat products (homemade), simple white wheat pasta, local free-range eggs, small amounts of 100% grassfed locally raised meat (just once or twice a week), and some mushrooms. As I mentioned before, I do take enzymes for dairy and gluten. They work great. So I am feeling amazing now! I can't even describe it. I feel WHOLE again. Like before I was in a fog, and now I am fully here. Interestingly too, I've lost a few pounds and some bodyfat percentage too (probably water retention). I feel very slim and strong and just great!

[colormist]

tikitavi,
You don't have to strictly avoid dextrose. It is true that dextrose might be contaminated in production, but it should be safe if it's pure. I think the reason for avoidance rose here because some of us were particularly addicted to pixy stix and other dextrose-based candies. They are very addicting, but certain flavors are sweetened with "natural flavor" aka fruit flavor and would make someone with HFI sick. And, has Bill has mentioned, dextrose doesn't have any purity rules around it, so they could have been making dextrose in the same plant as fructose or sucrose. Even though pixy stix are delicious, they could cause a bad reaction to all the dextrose masking the effects of the bad sugars.

Also, certain potato products are okay (definitely avoid red, baby/new, and sweet potatoes). If you're feeling good one week, I would suggest trying a small bag of plain Lays potato chips. They are my vice, so I kind of feel bad even telling you that they're okay. I've been known to eat almost an entire bag of chips when I'm feeling ill. Also, french fries. I love McDonald's french fries.

[esmee]

That is such good news, tikitavi!

Can you give me a picture of exactly what you eat and how you space your meals?

In other words...
do you eat pasta and dairy together?
do you eat pasta and eggs together?
when you do eat meat, do you eat it by itself?
what kind of dairy do you eat? cheese, milk, yogurt?
do you used butter on you pasta and bread?

also, do you have any trouble with constipation? as there seems to be NO fiber in your diet at all. (sorry to be personal--answer if you wish).

[tikitavi]

colormist
I seem to have problems with the dextrose that I bought ("Now" brand). I think it is not pure. Or I have some OTHER problem....which I hope not!

I tend to have problems with potatoes too, I looked them up and they are around 300mg fructose which is a bit on the high side for my tolerance. I seem to do best only with 100mg or less fructose per 100g serving. I've been using the brown-skinned, Russet potatoes. But, maybe once in a while some plain Lay's potato chips might be OK!

@esmee
Yes, I usually eat pasta and dairy together, or dairy and eggs together, and when I have meat, there's usually dairy too. I cannot tolerate plain homemade yogurt or kefir or creme fraiche, I've gotten a fructose reaction to all of those. I read that it's possible that the fermentation process produces fructose. I can safely have locally raised 100% grassfed raw milk, raw milk cheeses, and raw milk butter. I use butter for all of my cooking, and to put on pasta and bread. No, I never have any problems with constipation at all. My digestion is the best it has ever been, so that's wonderful! I would likely have constipation if I have the dairy without my enzymes. But, as long as I take my enzymes anytime I have dairy, I am fine. Fiber has always been my enemy, actually - I do best when I avoid it.

A typical day for me would be something like this:
Breakfast: French toast with some butter on top, glass of milk
Lunch: Macaroni and cheese
Dinner: Scrambled eggs with cheese, with bread and butter

I might add meat here and there, too.

When I hosted a dinner party a few weeks ago for friends who were vegetarian, I made:
Cream of Mushroom Soup, Buttermilk Biscuits, and a crustless, sugarless Cheesecake.

[esmee]

Thank You!

How long have you been eating this way now? It is so bizarre to have to avoid all veggies including leafy greens. I honestly don't think I could do that, but I guess if my symptoms were bad enough from it I would.

You are so smart to use the raw, grass-fed dairy.

Do you eat your meat raw also? I ate raw grass fed beef 3 X a day for about 2 years and did pretty well on that program.

[tikitavi]

For quite a few years, I mostly just ate meat and some nuts and seeds, but still had problems. Now I know it's because nuts and seeds are quite high in sucrose and some of them have fructose too. Then in the last year or so I started to try white rice and leave out the nuts and seeds. And since about July when I started to try dairy and gluten instead of white rice.

And yes, I figure if I can't eat fruits and veggies, I should get the absolute most nutritious food I can otherwise, so that's why I get the locally raised, 100% grassfed raw dairy. Honestly though, I feel soooo much better without the green stuff, it definitely seems I am better off this way.

No, I don't eat the meat raw. I've tried it, I made some carpaccio for a while. But I prefer it cooked. Plus my husband thought I'd lost my mind.