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Post by ukbill on Feb 20, 2010 12:07:30 GMT -5
Hi, Speaking as a diagnosed HFI'er I agree with colormist, we can "balance" a meal which contains fructose with other carbs or hide it with added Glucose.. However the breakdown products of Sucrose / Fructose will get us in the end! It is these which are the most damaging and if we eat enough Fructose then permanent damage to the liver is inevitable! Colormist, thanks! You have also just explained the occasional Kidney pain I get, and I am wondering how much of the back pain I get is from my slipped disk at the base of my spine or from kidney pain? Sarosh. your main problem is not with Tomatoes but the base for all curries.. (well here in the UK anyway) which is loads and loads of boiled Onion mashed into a smooth base and is used for all commercial available curries. I too have been eating sugar free gum.. but not any more.. since I found I was getting Sorbitol poisoning! So nothing tasting sweet is safe! I make my own curries regularly but without the onion base ingredient or tomatoes and they still taste pretty dam good!  (well to me and my family anyway.. ;D ) In the past I have been known to cheat a little and add a very small amount of concentrated tomato paste which seems to be far less sweet (to me) than fresh tomatoes. However since reading about some of the peoples experiences here on this site with severe liver problems as a result of ingesting far too much Fructose I am now on a much stricter diet and feeling the benefit already! A question? Is anybody sure how pure the Glucose some of us buy is?? It is after all made in the same plant and using in the same methods and equipment as is used for Fructose syrup and Fructose / Glucose syrup! Just a thought...  Take care.. |
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Post by charlie on Feb 20, 2010 13:59:42 GMT -5
I'm not convinced the stuff we get here in the Uk is pure or safe, its either coming off wheat or glucose or the combination of that has solved Megs problem. I'm going to ask at the hospital next time we go as after her fasting tests they gave her a glucose drink which was a pure glucose so I want to see if I can get some to help incase of blood sugar crashes after exercise.
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Post by sarosh on Feb 21, 2010 1:36:06 GMT -5
I agree that we need to be very careful not to take in any fructose as it will get us eventually , but of equal importance is paying attention to vitamin, mineral and enzyme supplements as we don't take any fruit or vegetable.
I have been suffering from bone, joint and muscle pain for about 10yrs ( I am 53 now) and have been on pain killers. Recently as the mucscle pain got very bad my rheumatologist decided to put me on disease modifying drugs but as an afterthougt she decided to test my vitaminD levels and guess what- my levels were much below the desired levels ( I live in the midst of a desert where there is sunshine all year round!). I must admit that I had been a bit negligent about my supplements. I went to see a nutritionist again who put me on much stronger supplements than I had been taking and added multiple enzymes as well. Also they are giving me vitamin D injectins to bring the level up
Take care and supplements.
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Post by ukbill on Feb 22, 2010 22:18:28 GMT -5
With regard to supplements.. Yes I was worried about this myself so I started taking Multi Vitamin tablets.. I did feel a benefit.. however after a short time I started getting very painful joints. First my elbows became extremely tender to the touch, then my knees went so bad it took me 20 min to get up if I bent down. I am not a weakling and can take quite a lot of pain.. So off I went to the Doctor and was sent to the Hospital for xrays of my knees and was told to expect to have replacement knee joints in a year or 2! The xrays came out clear no damage to the joints.. So it was something else.. When I went back to see the Doctor I asked if it could be the Vitamin tablets.. The answer was YES! I had too much vitamin A which was crystallizing out in my Joints. So I was giving myself the equivalent of Gout! On coming off the vitamin tablets I fully and rapidly recovered. The only Vitamin I have found that seems to help is Vitamin C. So I'm taking one slow release Vitamin C with Zinc per day and two if I feel I'm fighting a cold. It seems to be working .. Bird Flu only took 1 week to get over Last November. The rest of my family were down with it for weeks! It was the first infection I've had in 3 years. I hope the Vitamin D works and you find an answer soon.  Keep smiling.. |
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Post by mstamat on Mar 9, 2010 17:23:50 GMT -5
Wow. All I can say is wow! I just discovered today that I potentially have HFI. This came from some clever internet searches from a friend in med school. We found the wiki article and matched my symptoms exactly.
For years, my sister and I have fought off the jesting from friends and family about how we don't like sweets. We clung to pixie sticks, sweet tarts, and fun dip at birthday parties as kids. Currently, I'm 23 and she's 21 so it's good to have caught this while we're young and without children. Thankfully, the pestering from kids has stopped, but the questioning from adults continues. I can't even go out to eat without questions. Especially when the dessert menu comes around. Most of the time I just say I'm not hungry too avoid the unexplained subject all together.
My sister and I never experienced GI and bowel problems like I've seen here, but when we did eat sweets we did get some incredible stomach aches. We decided early on to cut out sweets all together. Mainly because they just don't taste good--a fact that I still don't quite understand to this day.
julienc, we know exactly what you mean when you said the pediatrician would just shrug their shoulders. As a kid I got so sick and tired of adults telling me "Oh, you don't like sweets? That's good! That's healthy!" Yeah that's great, but you don't tell that to a 12 year old kid who can't even eat his own birthday cake.
Anyways, I'm going to try and get my blood tested ASAP. I'm going to navigate the forums to look for labs and submit it for testing. Thanks for all the posts. Keep'em coming. Knowing that others share this disorder is a surprise, but also a relief.
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Post by colormist on Mar 9, 2010 19:22:22 GMT -5
Oh AWESOME Mstamat! I totally just updated that wikipedia article a week ago with the Common Traits section. I had been deliberating over it for a while, but I figured we're the experts here and not some random doctor who only knows what a patient would report. I can't believe how many sibling HFI members we have now. It's really awesome. I think I discovered my diagnosis around your same age using the fabulous internet and various search terminology. The food you eat that is sweetened with fructose doesn't taste good because your body has associated sweetness with nausea and vomiting. Simply a conditioned response. It only seems to get worse as you get older, sadly. GI & bowel problems tend to be more of a fructose malabsorption issue and not a HFI issue (at least from my understanding and personal experience). Where are you located at? |
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Post by CJSculpts on Mar 9, 2010 23:59:55 GMT -5
SO, in terms of DNA blood testing, the general consensus has been to use Dr. Tolan @ Boston University. I have sent my blood to him & I am still waiting for my results. They should arrive any day now. It is well known that he has only mapped the genes to 80% accuracy. The chances are better for non-Asian, non- Latino.
Some of my recent frustration stems from the fact that the testing done at Baylor may be more effective. My previous searched for finding HFI testing at Baylor were fruitless. (Hehehe.) Some members here had been diagnosed by Baylor but it was years ago.
I had told a staff member at UCSF Genetics Department that I was about to have my blood drawn to be sent to Tolan prior to my UCSF appointment to help speed up the process. It was not until my appointment that the other staff members told me that they were disappointed that I had not waited because they send blood to Baylor for testing which, according to them, is 100%.
It just gets harder & harder to know what is right.
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Post by colormist on Mar 10, 2010 12:18:22 GMT -5
I'm surprised the two labs aren't sharing data results. Seems odd to horde that information. That's like one doctor discovering a cure for AIDS, then not letting anyone else know what the cure is.
Hmmmmm...
Anyway, let us know when you get the results!
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Post by Deb Mc on Mar 10, 2010 13:14:57 GMT -5
...but I figured we're the experts here and not some random doctor who only knows what a patient would report. I see that as part of the problem behind the HUGE data gap in the literature currently available. Babies can't talk to tell us what hurts and how. And most babies w/HFI who are not diagnosed and treated in a timely manner don't make it, they die. According to one of the neonatal clinical geneticists we saw, only mild cases of HFI surivive infancy if left untreated. That does raise a question as to how I fit into that pic as I am missing Aldolase B and severely deficient in the other two fructose enzymes. We're currently waiting on the results of my older son's liver fructose assay. It'll be interesting to compare his results to mine. [=quote]GI & bowel problems tend to be more of a fructose malabsorption issue and not a HFI issue (at least from my understanding and personal experience). [/quote] Again, I think it depends on type and severity. I, too, have HFI (diagnosis confirmed via liver fructose assay) and have had GI problems my entire life. Both of my sons presented w/classic GI symptoms in infancy, in addition to failure to thrive, developmental regression and neuphrological and liver issues. Those GI symptoms included chronic constipation severe enough to cause anal fissures alternating w/explosive diarrhea, chronic projectile vomiting, buddha bellies or bloating, malabsorption and incessant crying due to stomache pain) and persisted throughout most of their childhood. They still get acute episodes from dietary indiscretion or accidental exposure. I'm not so sure Baylor offers the same testing as Duke. As I understand it, Duke's liver fructose assay is the only definitive diagnostic testing available for HFI and FBP/FDPase Deficiency. Deb Mc |
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Post by mstamat on Apr 20, 2010 18:05:51 GMT -5
colormist, sorry for the late reply. I've been in the process of moving in the last month. I'm now in San Antonio which is only about three hours from Baylor. Is there someone I can email or a phone number I can call? How likely are they to call me in for some testing?
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Post by colormist on Apr 21, 2010 11:01:15 GMT -5
No worries.
I don't have an answer to your question though, so I'm going to field this to the masses. I'm not sure if anyone else is on the east coast of the US or not.
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Post by julienc on Apr 23, 2010 9:58:58 GMT -5
colormist, sorry for the late reply. I've been in the process of moving in the last month. I'm now in San Antonio which is only about three hours from Baylor. Is there someone I can email or a phone number I can call? How likely are they to call me in for some testing? Finally seeing these posts - welcome to the boards!!! Lots of brother/sister pairs, too! I'm just so fascinated with how we all discovered Pixy Stix and Fun Dip! I was tested 3 years ago at Duke (not the fructose assay that keeps being mentioned), and my labs were sent to Baylor. It is my understanding that you need a doctor to facilitate the test. I don't think you can call up Baylor and send a blood sample over there. The process for eliminating the "middle man" doctor is to get a blood sample over to Dr. Tolan in Boston directly, and he will test for you. It does seem odd that Dr. Tolan's lab and Baylor wouldn't share information. My process with Duke was a bit time consuming (mainly waiting for appointments), but I'm glad I went this route. Now I have a local geneticist and clinic that I can turn to for information, which was particularly helpful when I had children who may be affected. The route I took (once I discovered HFI existed and that I was a potential candidate for this condition), was to get a referral from my family doctor to see a GI. They examined me, confirmed HFI was a possibility, and then gave me a referral to a geneticist at the metabolic clinic. Had I known this, I would've tried to skip the visit with the GI and gone straight to the geneticist. I really didn't know who I was supposed to see, and neither did my regular doc.  Bottom line - this is a DNA test, so they need a geneticist to order it. Baylor is simply doing the labs and spitting out the results. Tolan is a bit different since he is a researcher, and this (appears to be) his life's work. On his own, he opened up the doors to potential HFI'ers and offered up this testing option. Hope that helps. Also, just want to comment on the GI issues. Both my brother and I have these symptoms BAD when we consume fructose. So...it definitely can be an HFI thing. |
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Post by julienc on Apr 23, 2010 10:07:18 GMT -5
It was not until my appointment that the other staff members told me that they were disappointed that I had not waited because they send blood to Baylor for testing which, according to them, is 100%. My doc said it was in the 90% range, if I remember right. They definitely said that it wasn't 100%, but it is getting better and better with time. As I mentioned in my post above, I don't think you can go directly to testing labs and get them to do it (Tolan being the exception). These labs work for doctors and just process whatever tests the various doctors send them. It does sound like most geneticists use Baylor, though. Anyone hear of any other labs? |
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Post by CJSculpts on Apr 24, 2010 1:04:33 GMT -5
Yeah, the 100% sounded pretty unlikely. ANyhoo, my test from BU came back negative. During my appointment at UCSF I was told that the plan would be to go for further testing. Now they are saying that their staff dietitian thinks that I have too much fructose in my diet still to have HFI so they are not pushing for further testing. I found this quite odd because there are only about 25 ingredients that I eat on a regular basis. If I restricted further, I would be able to eat a full meal. If you all would bear with me, I would like to post the data that I sent to her and see what your reactions are. So, here we go: AVOIDED PRIOR TO LEARNING ABOUT FM/HFI: iceberg lettuce - queasy have avoided almost completely since childhood whole wheat - makes me pass out/fall asleep have avoided since college foods with "chemical/unnatural" ingredients (i.e. I ate one Jenny Craig meal in 2008 and was violently ill) white wine (some) - makes me wheezy TESTED w/REACTIONS SINCE STARTING FF DIET: unknown item at restaurant opening - after starting partial FF diet...severe abdominal pain/bloating muffaletta sandwich from Delessio- after starting partial FF diet...severe abdominal pain/bloating heirloom spinach [winter/bloomsdale/savoy] - after starting full FF diet...extremely ill for two weeks w/lingering migraine for two more weeks wheat flour - after starting full FF diet...slight reaction...will avoid unless cornered w/no other choice (tried in pasta form) garlic - after starting full FF diet...slight reaction...will avoid unless cornered w/no other choice onions & shallots - have not tried since starting diet but assume that they might be the same as garlic leeks - brilliantly ate them every night for a week before 2nd round of FF diet and was very sick *everything else that is listed as either "unsafe" or "maybe" on HFI & FM diets other than what is listed below* EAT: popcorn corn nuts cheesy corn puffs (only brands w/no unsafe ingredients such as corn syrup solids) corn pasta rice pasta quinoa pasta pearl barley grits polenta white rice [basmati, sushi, etc.] arborio rice potato chips french fries baked potato baby spinach celery avocado daikon radish berries kiwi citrus nuts [almonds, walnuts, pistachio] beef (no brine or marinade) lamb (no brine or marinade) poultry (no brine or marinade) pork (no brine or marinade) fish/seafood (no brine or marinade) eggs cheese (frequent but limited quantities to avoid reaction) rye crackers (no wheat) gluten free crackers (Glutino brand) natural peanut butter mushrooms champagne vinegar wheat free soy sauce wasabi grapefruit juice (3-4 oz only) milk/cream (small amounts) olive oil greek yogurt Bon Maman preserves (only a teeny spoonful on rare occasions) wine (one glass dry) tea [mint, green, black] coffee Pixie Stix (dextrose) Smarties (dextrose) dark chocolate herbs [parsley, mint, cilantro, basil] cracked pepper fleur du sel cinnamon seaweed canola oil
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Post by CJSculpts on Apr 24, 2010 1:09:58 GMT -5
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Post by Tammy on Apr 24, 2010 9:06:16 GMT -5
You still have quite a bit of fructose in your "safe" list. If you feel good on all these things, then I would probably agree in that you aren't HFI.
Some of these items I'm not sure about as I'm not sure what they are. Some that I know would make Regina terribly sick are:
Berries
Kiwi
Citrus
Grapefruit juice
preserves
dark chocolate
I would also question the greek yogurt, as I'm not sure what it contains.
Also your choice of nuts. I've never let her try walnuts or pistachios, so will throw these out to the rest as I think I remember someone saying pistachios were too sweet.
I know DFI allows some of these things, but even to start I think they limit them in the beginning.
Good Luck
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Post by charlie on Apr 25, 2010 3:19:58 GMT -5
I'll add my tuppence here. If they rule out HFI, look into DFI or Fructose Malabsorbtion as otherwise known, it used to be listed as not so much of a problem but it is becoming more apparent that it can produce just as many bad symptoms but affecting in different ways. You may have already followed this line so forgive me if I am repeating what you already know but have researched it now for Megs it has made major improvements to her symptoms that the HFI diet only made half.
the big change was eliminating the fructans, ie wheat which you say you avoid anyway but also barley and recently a further improvement after taking out maize/corn products. Avoid alot of the gluten free pastas in this case as they are either made with brown rice which is higher fructose or with corn. I use white rice noodles instead. Also some of the flours have maize in them.
So sorry, looks like between us all we have ruled out most of your foods but boy, if it works then its worth it. Megs gets very affected at night and when I cut out corn I got 5 whole nights sleep last week, only broke last night not sure why.
I use the yahoo group on malabsorbtion for advice on this, it is an australian based so alot of the makes of foods are only available there but once again great advice is given.
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Post by anastazya on Oct 4, 2010 17:57:06 GMT -5
Hi.
I haven't formally been tested for HFI yet. My appt at Mayo is Thursday, but I think I might have it. Where to begin.....
My Mom told me that she started me out on veges and I was fine until I stared having fruit at age one. At age 1.5 -2 I was but on a low sugar diet for hyperactivity. It helped, not all the symptoms went away, but it helped. At age 4 I told my Mom that I wasn't going to have cookies again because they made me sick. Some time in my teens, I was feeling sick and I decided to do an experiment. I decided to eat some fruit to see if I would be better if I ate fruits instead of any sugar. (In my mind, it was processed sugar vs. natural sugar. I felt sick off the fruit as well, so I decided that it didn't matter what sugar I ate, I was going to be ill. I have never been able to tolerate sugar very well. I remember many occasion that I would throw up due to excess sugar. Didn't really have any bowl issues, but was moody and hyperactive.
At age 15, I started having severe cramps that lasted til I was 31...then I got rid of the problem organs. At age 19, my gall bladder went bad. AT age 25, my thyroid went on me and I was diagnosed with Hosimotos Disease. At age 34, I lost all foods. No good reason. I was having allergic reactions to them, but all my tests came back negative for food allergies. I was finally diagnosed with Oral Allergy Syndrome...a very severe case of it. What that means is that while there is pollen (May-Oct or Nov) I can't eat anything that could come from grass, trees, or ragweed. So all veges are out. When I tried to reintroduce the foods, I would have a slight reaction with: avocados, pineapples, mangoes, bananas, oranges, and red potatoes. This year, I just kept getting sick no matter what I ate. So I stopped eating everything except: white rice, goat meat, and chicken.
Since I am also allergic/intolerant to all preservatives/chemicals/additives, and I am intolerant to: soy, wheat, yeast, and milk. (I have been tested for Celiacs and milk allergy. Both came back negative.)
Any thoughts?
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Post by anastazya on Oct 4, 2010 18:20:11 GMT -5
Also forgot to mention that I went on a Fructose free diet, and with in one week, I started feeling really good. But now, anything (and I mean anything) with fructose in it makes me sick ..even my probiotic which might have a small amount of wheat in it.
Also, my Great Aunt (on my Dad's side) got gout and then could only eat a handful of things. My cousin and I get the same symptoms and her Father (my Mom's Brother) has never felt well.
Just an added note. : )
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evelyn
Junior Member
Posts: 63
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Post by evelyn on Oct 4, 2010 21:59:32 GMT -5
Also forgot to mention that I went on a Fructose free diet, and with in one week, I started feeling really good. But now, anything (and I mean anything) with fructose in it makes me sick ..even my probiotic which might have a small amount of wheat in it. Also, my Great Aunt (on my Dad's side) got gout and then could only eat a handful of things. My cousin and I get the same symptoms and her Father (my Mom's Brother) has never felt well. Just an added note. : ) Hi Anastazya, do you become hypoglycemic when you eat sugar? |
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(well to me and my family anyway.. ;D )
Bottom line - this is a DNA test, so they need a geneticist to order it. Baylor is simply doing the labs and spitting out the results. Tolan is a bit different since he is a researcher, and this (appears to be) his life's work. On his own, he opened up the doors to potential HFI'ers and offered up this testing option.