New with question

[serene]

Bill,

You are absolutely right about going through my life without knowing what it was that would trigger my symptoms. It is such a relief now to finally know! It was like playing Russian roulette with food every day.

I definitely feel like my body is starting to go through a healing detox over the past few days as I have settled into the HFI diet. I am noticing that I am finally able to sleep after so many nights of restless sleep. My body is craving so much sleep.

The big thing that I am noticing is the absence of the hypoglycemic attacks is making my energy much more steady throughout the day. I used to feel starving after eating, and now I feel full and don't feel like I need to eat again right away. This must be how other people feel all the time, so weird.

I am thrilled to find that I am able to eat wheat (white flour) and corn products(corn meal and corn flour) again after years of thinking that they were the problem. I had been really scared to try these, but as you said I think that it was a psychological association as most foods that have these ingredients in them, tend to have sugar. I had an aversion to sweet foods but always thought it was because I was trying to avoid corn and wheat!! I am finding that I can tolerate the dairy fine as long as I take the Lactaid.

I don't find the diet to be boring, as you mentioned that is not uncommon with HFI that when I find a safe food, I am pretty comfortable with eating the same thing day in and day out.

I think that its been harder for my partner to get his mind around that I can be healthy without eating vegetables. I am finding that my tolerance is pretty low right now, but that may be because I am not healed yet. I need to limit the amount of potato products for example. I made the mistake of having a couple pieces of iceburg and a slice of cucumber and that was enough for me to know to stop.

The most exciting thing this week was having a pint of German beer and for the first time ever to be able to have alcohol without any problem, whoo hoo!

[ukbill]

I'm sure your husband will forgive your "poor" diet if you can drink the odd beer

Its funny I have spent 55.5 years thinking the same as your husband!

Every health professional I have ever seen, has commented about my "poor" diet. while at the same time not being able (other than vitamin C) point out one nutrient or vitamin I would be short of!

Such is the Global thought process! EVERYONE believes that not eating vegetables is a bad thing!

So I have gone through life not expecting to live very long..

I am now realising after all these years how wrong all this advice has been!

Provided, and this is the key point, as our HFI diet is made up of a mix of Milk products and meats from different sources (type of animals and fish) there is absolutely nothing wrong with our diet.

Other than vitamin C (and Folic acid it your planning a family) there are no supplements vitamin or mineral that we need, so far as my studies have shown so far.

It is actually much healthier than a "Normal " persons diet which will contain all sorts of nasty additives preservatives, emulsifiers, artificial sweeteners that convert to nerve gas after being eaten! And not to mention high levels of very unhealthy fats (hydrogenated fats) and of course the worst thing possible refined sugar!

So Eat HFI, Be healthy, live a long and happy life

Your tolerance should improve with time as will your stable blood sugar levels. however your ability to detect sweet flavoured foods will increase the less of them you eat!

Keep us posted to your progress please, good news stories are very valuable guide for parents and others with HFI

[serene]

I've got some good news. I just spoke with the nurse and the doctor reviewed the results and confirmed the fructose intolerance from the fructose breath test. The nurse suggested that I go on a fructose free diet to see if I notice any change in my symptoms. I told the nurse that I have been doing this and that I have had positive results. I told the nurse my suspicions about HFI due to the hypoglycemic response to the test. I don't think they were familiar with it, but going to research it and ask the doctor about ordering the genetic test. Yeah! I feel like I am getting somewhere

[colormist]

That's great news, serene! It's so nice when doctors listen to their patients and consider their suggestions and ideas.

[serene]

Thanks Colormist, I agree! I found your blog and have found it to be very helpful. Thank you so much for putting that together. It is so exciting to find food that is safe to eat. What a gift from someone who has been navigating these waters for a while

[ukbill]

Serene that was a classic HFI reaction!

In the Chemist shops in the UK (Drug stores in the USA) they sell blood glucose meters for Diabetics.

IF you get one of those and you can self test yourself.

IF after eating anything containing sugar your blood sugar go's down then as far as I can see you are HFI!

I have asked several times if anyone knows of any condition other than HFI that will reduce your blood sugar level after eating Fructose and no one has come back with a condition.

So the "challenge test" is done this way (if done correctly)

1/. 12 hours without food (not easy I know) test blood sugar level. Depending on test system it should read around 5 (with 11 being the high 20 to 40 min after eating a good meal with no fructose or sugars in it)
2/. Drink a little sucrose sugar (the official test level is 0.3g per Kilo body weight NOT the 1.5g I was given!)
3/. Re check blood levels every 10 min for 2 hours.

A "Normal" result should show the blood sugar level rise smoothly over 20 / 30 min when it peaks then slowly drops back down over 2 hours to the "resting" level of 5.

An HFI result with Sucrose is an Identical smooth rise to 20 min followed by a sharp fall down to the 5 level or below. the blood sugar level will slowly rise back up to the 5 level over 2 hours or more depending on the dosage give.

If inconclusive re test with the same with pure Fructose but with only 0.15g per kilo body weight.

With the first test the blood sugar level should rise for the first 20 min, (the Glucose is used first by our bodies) then it should drop.

With the Pure Fructose test there should be no rise in the first 20 min but after 20 min (or sooner) it should drop below the starting point.

I am not a Doctor however so I suggest you print this and show it to your medical practitioner before self testing.

This is a legal disclaimer if you get ill from doing this please don't sue me OK?

Its your body, your, decision, your life... OK?

It sounds to me like we are on our way to accepting you in as a diagnosed HFI

Congratulations ! in that case.

Your life will be so much easier from now on!

This may be a bit premature but I do not think so

Take care. and I hope you feel better soon.

PS This is why I think the FM hydrogen breath test is dangerous for HFI's we all react the same way.. so why stress our livers this way in a pointless test?

Before a Medical prationer tests with the Hyrogen breath test they should ask one SIMPLE question..
"Have you had this all your life?"

IF the answer is YES then they SHOULD NOT do the test because HFI is a very plausible diagnosis!

If Not sure then maybe they should still not do the test because its generally though of as a useless test anyway.

IF the patient is positive that the condition has only appeared in later life then maybe the test is worth doing.. it certainly will be safer anyway because no HFI "develops" the condition in later life.

Keep smiling

[serene]

Bill,

Thank you for your welcome! The nurse said that they should get back to me within the week about the genetic test for HFI. She was going to check first to see if they could do this at the hospital that I am being treated at. I think that they had concern about sending the blood work to another facility. If I don't get anywhere with the genetic testing I will try the test you suggested if only to confirm it for myself. Although the thought of ingesting fructose again combined with pricking my finger several times is not such a pleasant one!

[ukbill]

True, apparently it is important because as you live in the USA to get the official diagnosis actually its essential, many IV medications used in the USA contain Sorbitol which can be fatal for us.

Apparently the hospitals will only give the more expensive Sorbitol free IV fluids if your Insurance company knows you are HFI and have an official diagnosis.

I am not sure if this is universal for all insurance companies but apparently it is for some.

Luckily in the UK we don't have to worry about this only about medical people not checking and hospitals using IV fluids which contain Sorbitol, it was supposed to be banned in the UK because several undiagnosed HFI have died as a direct result of Sorbitol in IV drips, but apparently its still in use.

At lease this is what someone else on the forum posted a short time ago, (about the American Insurance based Medical scheme).

There is info on the Genetic test on the forum. Its done at Boston I think.

[serene]

I decided to go ahead and order the 23andme genetic test kit after reading about it here. The price has now dropped to $99 and it says it has a 75% of detecting the HFI gene and tests for 3 mutations. It looks like it takes a couple of months to have everything processed. I will keep you posted!

[charlie]

Hmmm, that sounds very cheap, I hope it is accurate enough, I just wonder how they can do it so cheaply, does it say where it gets sent to test. Maybe a diagnosed with mutations with a bit of spare cash could use this system to check it out?

Mind you, just googled them and they seem to have accurate info on HFI so maybe?
www.23andme.com/health/fructose-intolerance/

[serene]

Hi Charlie,

They knocked down the price on the test from $300. It says that they are doing a research project with the collected genome information and they are trying to get the genotypes of a million people in their database. So both parties benefit, cheap test and they get their data. I looked over the confidentiality information and it sounds like they are well read about that. You would have to sign release form for them to give information to a third party. Seems like the accuracy is not too dissimilar to Tolan's lab.

[serene]

The 23 and me lab now has my DNA sample, so I am just in the waiting period now for them to get me the results. It said it takes about 6 to 8 weeks from when they receive the sample. Will update as I get the results.

[ukbill]

[serene]

I wanted to check back in with you all and first off just wanted to give a big shout out of thanks to Bill, Charlie, Tammy and Laura for all of your support as I have gone through this journey of trying to sort out my health issues.

I apologize in advance that this is a long post. I have gotten some information back, but am still struggling with a lot of uncertainty about what my condition is and what will be a safe diet for me.

I had tried going back on a gluten diet, but within a short period of time I began to experience significant peripheral neuropathy, numbness in my legs and pain in my joints. I looked back at my old endoscopy results and the feedback I got from the GI at the time is that my results were inconclusive and likely that I had gluten sensitivity. I don't have the typical villious atrophy that is found with Celiac. This is not surprising, as I don't have the typical symptoms of diarrhea and abdominal pain with gluten. But, it did show decreased duodenal folds which the report said could be caused by Celiac. The genetic test they did showed I do have one of the Celiac genes. I decided to have the blood tests done after being back on wheat for a couple of months this year, as I never had those done. It was negative, but it looked like I was starting to develop antibodies to gluten in the TTG test. For me, all of these factors combined are enough for me to accept that it is in fact Celiac, even though I don't have the formal diagnosis. I didn't want to risk going back on wheat for a longer period of time just to have a positive blood test.

I just got back my results from the 23 and me test that was negative for any of the HFI strains that they test for. This wasn't too surprising to me as I don't fit the typical profile of having been born with a natural aversion to sweet foods. (I'm not sure though if that is because I react to so many foods that it is difficult to tell what is causing my symptoms.) I then went into self-doubt about my condition and thinking that it is just regular FM and I should be able to eat the regular FM diet. But no, unfortunately not the case. I tried on an empty stomach grapefruit and then a few days later raspberry which are pretty low fructose for the FM or FODMAP diet. But, my reactions were to become lightheaded and dizzy and later some stomach pain/cramping. Bummer! It is probably not HFI but severe FM.

I am also trying to come to acceptance of all of my food allergies that had been diagnosed via skin prick test years ago. I had tried eliminating some/most of these at various points over the past several years, but it is nearly impossible to avoid all of them. I tested allergic to wheat, corn, egg white, scale fish, shellfish, pork, cocoa, black pepper. I am also off the charts allergic to mold, which means that I should really avoid all foods with mold component: alcohol, cheese, mushrooms, soy sauce, vinegar, yeast, fermented foods. The corn allergy is probably the hardest to live with because it is in literally everything in some type of derivative, including produce, dairy and meat products. (I do the best with direct from farmer foods).

I tried over and over with milk products, but I am finding that I get the stomach cramps from dairy. I tried the Lactaid, but with my other allergens, most medications are not safe for me and so I was reacting to the Lactaid too.

I have found that for now my safe food is chicken, beef, rice, buckwheat, spinach. Been experimenting with adding other foods but not having a lot of luck.


I thank you all again for all of your support and tips. This board has been a true blessing! I am thinking of pursuing some Eastern medicine/accupuncture to see if it can help to alleviate some of my food allergies to be able to expand some of my options.

[Debra]

My story is similar in that I experienced hypoglycemia and constipation for years with occasional kidney infections. It took 15 years to figure out that I had HFI. I also had fluctuating liver enzymes tests. Now I only have normal liver enzyme tests if I adhere to a strict diet of meat, fish, dairy, white rice and refined white bread with no sugar. I take daily supplements to replace vital nutrients.

I did not experience urinary burning sensations. There are individual variabilities in symptoms with any condition. Have you ever had a liver enzyme test?

[charlie]

Hi Serene,

OK, one thing at a time. HFI or not, unfortunately not all mutations are picked up still so not an absolute negative, just a less likely. No natural aversion, yes, maybe even less likely.

Usually wheat isn't a problem for HFI so yes even less likely.

So as you ask, what is it?

If you have a change to your villi structure then you could have multiple sugar malabsorptions going on along the lines of CSID, sucrase isomaltase deficiency or disaccharide deficiency. Basically a multitude of absorption processes occur through the villi in the small intestines which is why they are designed as they are to increase the absorptive surface thousands of times. so if that surface area is decreased as they are not as healthy then less is going to get absorbed properly and is going to end up staying in the bowel in the wrong form causing an explosion of reactions as a result.

You have the advantage that you are an intelligent adult (and female!) so you can work with your instincts much better and use that to work out what is going on.

You say you felt much better when starting the HFI diet but maybe you need to take it further and do a complete elimination for a while of not just fructose but also milk and gluten (including all starches if thinking along the CSID line for a while). yes it will be a nightmare to start with, involve alot of forward planning and special shopping and cooking but the end result may be really worth it. Villi take months and months to repair, may never completely so you have to eat what you can to help. Your best option is little and more frequently so that there is less to be broken down each time but more chance of what there is getting absorbed. And keep a diary of what you have and how you respond.

The problem with the FM diet is that many have found it just doesn't work (the low fodmap one that is) as their tolerance level is just too low so it is a matter of trial and error. But to even begin you need the gut as healthy as you can first so you may have to clear your diary for some time and just go with the flow for a while longer.

You may also find you have an acid alkaline balance problem so trying new things on an empty stomach may not be the best idea as a result of that, you may find it copes better when something else has woken up the system.

The good news with alot of villi related problems is that with time they improve alot, probably you would always have to be careful though, and yes acupuncture may be helpful. Or if you have access to a nutritional doctor that does very specific blood tests to check your mineral and electrolyte balance you may find you get alot of help balancing those up as they all get absorbed through the villi too.

So HFI may just be a starting step for you but if you feel good on the diet then stick to it if you can as it is obviously doing you good.

[serene]

Debra,
Thanks for the feedback. I looked back at my full blood panel done a while ago and didn't know what all the tests meant, but when I googled liver enzyme tests, I found that my test results were nomal. That is a relief, and another indicator probably not HFI.

Through much experimentation and elimination figured out that the "bladder pain" and frequency I sometimes get is related to my severe mold allergies. It is only triggered when I drink alcohol or have vinegar or other moldy type food. I don't get this reaction if I have other foods that have fructose in them but not mold

[serene]

Charlie,

Thanks for the feedback. Yeah, it seems to be a severe FM and not HFI.

Last summer, when I had eliminated all sources of gluten, mold, pork, sugar, fruit, egg and only ate foods from the farmers market that weren't treated with any chemicals I did the best and tolerated the most foods.

I think that I was hoping against hope that I didn't have these severe food allergies because they so severely limit what I am able to eat. Most food from the grocery store is not safe for me because it is treated with corn derived chemicals in some form.

I think that I am able to tolerate the FODMAP diet if I only eat locally grown non chemically treated meat, vegetables and dairy.

It's tricky especially for me through the winter and spring until there is local foods available through the farmers market.

I have been thinking more about it and suspect that what seems to be hypoglycemia is probably more likely a mild type of anaphylaxis to my allergens. I get a racing heartbeat, lightheadedness, dizziness, stomach pain and when it is severe I get difficulty breathing and wheezing. I have risked it too much in the past with not taking my allergies seriously and my mom has allergies as well and ended up in ER not breathing because of them.


The good news is that I found a brand of whole milk that is from grass fed cows and no added corn based vitamins and I did just fine. Yeah, no lactose intolerance after all. It is just hard to find non corn treated dairy, so I was mistaking the corn allergy symptom as lactose intolerance. So maybe its not disaccharide intolerance after all?

Sooo...it seems that I am likely dealing with the gluten intolerance, food allergies and FM.

Blessings!