Joined: Jan 2012 Gender: Female Posts: 128 Location: California, USA
Re: Which members have a definite HFI dignosis? « Result #2 Today at 9:37pm »
Thank you, tummyache, for such a detailed response. Your history is really fascinating. Much of what you have shared is similar to my own history. I had tummyaches a lot as a child and always wanted my mother to "rub my tummy." I wet my bed until I was 10 years old. I had a chronic sinus infection/headache pretty much my whole childhood.
I was an extremely picky eater and, looking back, most all the foods I liked had low-to-no fructose in them. It seems that many people on this forum can tolerate cow's milk products (except Fred, per his interview by colormist) but, like you, I cannot. I, too, was cranky after a nap, and woke up every morning with what I can only describe as a "hangover." I had to eat something substantial in the morning or I would be sick before lunch.
I have suffered with migraines (and occassionally visual auras too) for years, and I always knew they were triggered by hypoglycemic episodes, but I never made the connection that fructose (specifically) ingestion is what caused the hypoglycemia until I found this site and started reading everyone's stories. I knew it was the food I was eating, but I could not figure out the common denominator in the foods triggering them was fructose.
I have also experienced the "water blisters" on the roof of my mouth and the inside of my lips. A clear gooey sour-tasting liquid comes out if I pop them.
I stopped eating wheat about 15 years ago and getting the wheat out of my diet was definitely beneficial, but it did not really fix me. I have a lot of digestive problems and seem to react negatively to practically every food in one way or another. Interestingly, I had an intestinal biopsy performed to check for flattened villi and it came back positive. This is generally considered indicative of celiac, but I had not eaten wheat for 8 years before having this test. Usually, if wheat is the culprit, they say you must be eating wheat for the villi to show the effect, but my villi were flattened even though I had not eaten wheat for a very long time.
The villi in my small intestine should have healed pretty quickly once I stopped eating wheat. Since it apparently did not, this makes me wonder if chronic fructose ingestion can cause flattened villi in people who are fructose intolerant?? I never had the genetic test for celiac because I was told that you had to be eating wheat for that test to come back accurate also (though I cannot understand why this would be the case since it is a genetic test, but maybe the phenotype stops expressing itself once wheat is removed from the diet.)
Like you, I seem to be able to handle the small amounts of fructose present in green vegetables. I have a liter of celery juice 2-3 times a day and (according to cron-o-mter) it has 5 mg of fructose per liter. But it does not have any negative effect on me that I can tell.
On the other hand, I recently ate 8 oz of raspberries on an empty stomach in the morning, which also has 5 mg of fructose, and it really affected me negatively. Within 30 minutes I was getting underarm sweats (adrenal stress), and I could feel my blood sugar dropping very quickly. I became restless, irritated, agitated, cantankerous, and aggressive. I got mad at my housemate for no reason and literally "created" and argument where none existed! I also became ravenously hungry and ate twice as much food as I normally do on that day. I continued to be abnormally hungry for the next few days.
What is interesting about this experience is that I went through a period several years back where the only thing I ate for 2 whole years was goats milk yogurt and raspberries. I never experienced the above symptoms after eating the raspberries and yogurt together. After reading everyone's posts here, I see that most go to dairy to recover from an accidental fructose ingestion. So, now I am thinking that the yogurt was masking or moderating the negative effects of the fructose in the raspberries, even though it was still most likely causing problems else where in my body (liver/kidneys).
Based on everything I have read on this forum, I have decided to get the genetic test that is offered by Dr. Tolan's lab at Boston University. If I do have HFI, and it seems like a strong possibility, I really want to know. I have been too sick for too long and, if this turns out to be the underlying cause, it will give me more information to work with in trying to figure out what else has gone wrong in my digestive tract as a result.
I just sent my blood sample to Dr. Tolan, but he needs 4 samples to run the test, so it might be 6-8 weeks before I have the results. This might be the time for you to have your GP order the test for you as well (then we might not have to wait so long to find out!). If it comes back negative, that is not a finally verdict, of course, but it is definitely the best place to start.
Joined: Dec 2011 Gender: Female Posts: 6 Location: Panama and Texas
Re: Which members have a definite HFI dignosis? « Result #3 Today at 6:41pm »
I don’t actually have a traditional medical diagnosis of “HFI”, but I was told to avoid fructose and sucrose. No surprise there! I always have had an aversion to anything sweet. In the 1980’s, I was lucky enough to be chosen as a research subject by a biomedical research group at the University of Texas, which accidently discovered when they tried to grow my blood cells in a sugar medium, the cells would die. At first they thought it was a fluke because, evidently, it had never happened to them before. So, the physicians and researchers said I was “fructose intolerant.” I was a patient/subject for many years. During that time they recommended a therapeutic level of vitamins + minerals – especially C, B’s, D and calcium – which I still take.
Actually, I began having digestive problems shortly after birth. As a formula feed newborn it became apparent that cow’s milk was problematic – with ”projectile vomiting”, failure-to-thrive, etc. So, the doctor had Mom switch me to goat’s milk which was a little better tolerated. [This was in the early 1940’s so who knows what was in the formulas in those days.] Growing up, my Mom said I was very cranky, especially following naps and early in the morning, became shaky if I missed meals or “got too tired,” always a very fussy eater, and had trouble in school concentrating and learning to read. As far back as I can remember I had tummy aches and nausea. As a little kid, I would beg for candy and then only take a bite or two before setting it aside. I remained under weight with frequent episodes of flu-like-illness, ear infections, and rashes, sometimes bed wetting and nasal allergies. Actually in my 40’s, I made a special effort to try and figure out what was causing all the problems – it seemed obvious it was something I was eating. One allergist helped when we did the elimination diet - he’s also the one who sent me to the UT research group. Except for these two situations, I saw so many doctors over the years that were clueless… and some even dismissive.
Anytime sugar sensitivity was mentioned, doctors liked to order a oral glucose tolerance test- so I’ve had three, all producing a ‘flat curve’ results. When I eat sugary foods: [1 ] I feel nausea usually within 20-30 min., [2] mouth tissues feel raw + at times there’s tiny watery blisters on the soft pallet and down the throat, and [3] I can feel my digestive tract having muscle spasms all the way through. But, what’s really bad, are the sporadic episodes of diarrhea, vomiting and extreme tiredness. During one really bad episode in 2004, I went to the ER, where they threatened to remove part of my small intestine since it was almost totally closed due to swelling. [Fortunately, it wasn’t necessary.] Soon afterwards we discovered Celiac Disease on the internet. Since we were traveling at the time, I added gluten free to dairy free + a very low sugar diet. Wow, what a difference that made! In fact, I haven’t had one sever episode of vomiting and diarrhea since adding gluten free. Recently though, I had the opportunity to have a DNA test for CD. What a shock to discover that I do not have either HLA DQ2 or DQ8 [found in 98% of folks with CD]. This means there’s a very low probability that it’s celiac. Can’t help but wonder, since we feel pretty sure I react to wheat, is it to the fructans rather than the gluten?
I also have Hasimoto’s hypothyroid, Sjogrin’s [mucosa membrane tissue dryness], osteoporosis, and visual auras + mild headaches every 3-9 months apart [most likely migraine related]. Hummm, could sugar be the trigger for the auras and headaches?
I have read that HFI can be mild or so severe that it’s deadly. I must be more toward the milder end of the spectrum because I can eat one natural unsweetened apple sauce cup without a problem, but a raw apple gives me a terrible stomach ache. [Many fruits make my mouth sore or cause GI problems… veggies not so much, except sweet potatoes]. Forget candy, dried fruit, jams and syrups, cookies, cakes, dairy free ice cream, sodas, or alcohol drinks [except I can sometimes tolerate ¼ cup of dry white wine]…yak! Alcohol sugars [0 calorie sugars] or anything with HFCS are bad news too! My drinks of choice are water, water with lemon, or unsweetened tea. I frequently crave spinach or French fries…and prefer simple, fresh cooked foods like grilled meats/fish, rice, steamed veggies, salad with oil + vinegar or just lemon juice dressing… a few tolerated fresh fruits [usually berries] if there is desert.
Next time I see my GP I’m hoping to talk her into ordering a genetic test for HFI. I know it’s not perfect, but I really don’t want to do either of the other two invasive procedures. I would really like to verify officially that it's HFI. It could be important to my kids and grandchildren.
Joined: Nov 2011 Gender: Female Posts: 149 Location: Midwest USA
Scottish Crowdie « Result #4 Today at 5:41pm »
I made this for my friend's Burns Night party. I made quite a lot of changes to make it HFI-safe. I left out the berries and the sugar and the vanilla, for one. Also since I'm very sensitive to fructose/sucrose, I replaced the oats with a serving of cream of rice instead. So my version is just whipped cream with cream of rice in it, actually. But, still tasty as a nice safe dessert anytime!
Joined: Jun 2006 Gender: Female Posts: 878 Location: Michigan, USA
Re: Weather preference « Result #5 Today at 4:41pm »
So sorry, Charlie. It's about 18-degrees Calcium (64F) where I'm at right now and has been off and on for a few weeks. I'm more used to -20C (-10F) January and February temperatures.
I almost prefer the colder temperatures because I'm worried what summer is going to be like.
Mother of Megan 8yr old diagnosed DFI, possible HFI
Joined: Jun 2005 Gender: Female Posts: 489 Location: Sussex, Great Britain
Re: Weather preference « Result #6 Today at 3:11pm »
Brrr, what do you mean warm. Britain is in the grip of the "Beast from the East"!!!!???? Well we do like to dramatise things, apparently we are heading for -6C!!! Apparently it is a cold spell coming from scandinavia, thanks you lot!!!
Now Megs is considerably better in the summer, has more energy, sleeps better and gets a stunning tan instantly in hot weather - I am very jealous of her!! I assumed the melatonin she absorbs helps her. But then we are talking about British heat!!! She tends to go into hibernation in the winter especially in long grey spells without sunshine.
Mother of Megan 8yr old diagnosed DFI, possible HFI
Joined: Jun 2005 Gender: Female Posts: 489 Location: Sussex, Great Britain
Re: Gene testing in England « Result #7 Today at 3:02pm »
Hey, thats great news, glad it has helped. Its amazing what you suddenly come across with some sideways googling. There seem to be a few people springing up from the Netherlands recently so you may be not as alone as you think!!!!
Carolyn, I don't know yet how we get checked in Britain, I will contact them this week to see, had hectic few weeks with Dad in hospital so not followed it up yet. Yes, I think you are right you do need to know and your kids, that is so unreasonable of the gastro to say that. Unfortunately in Britain they really don't know much at all about it, I was told Megs definately not HFI because liver tests were fine, I did point out they tested those a year after she stopped virtually all fructose. ...We definately need to do more education on it. She may not have HFI but FM but to be honest everything pointing more to HFI at mo.
Joined: Nov 2011 Gender: Female Posts: 149 Location: Midwest USA
Re: Weather preference « Result #8 Today at 12:33pm »
I'm with you! I hate heat, sweating, bug bites, poison ivy. I love fall and winter! I especially love "bracing" cold weather of winter, I feel like I am pitting my wits against the cold and it makes me feel more alive!
Joined: Jun 2006 Gender: Female Posts: 878 Location: Michigan, USA
Re: starting up an HFI blog « Result #10 Today at 11:57am »
A couple new silly articles. Sometimes I think I should take more of a reporter-like stance to my blog, then I realize would run out of things to write about in a day.
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