New to DFI, need some guidence...

[leigh]

Hello! My 5 year old middle son has just been diagnosed with dietary fructose malabsorption. They had checked his liver enzymes prior and I am guessing that he is not HFI but I understand that treatment is the same for both.

This diagnosis has come after years of awful GI problems. In addition to this, he has reflux that he has battled since birth. He is still undergoing testing as the GI feels that there may be another underlying issue at play here.

In addition to fructose malabsorption, he has the sucrose malabsorption and in fact a suspected total carbohydrate malabsoprtion. He had high hydrogen readings after ingesting the reccommended rice and plain meat diet for the night before the test. Just to make things fun, he has a milk allergy (that we are going to be challenging this coming weekend) and also peanut and treenut allergy (carries epipen). It is a wee bit of a nightmare right now to find things that he can eat. We will do the milk challenge and hope it works to open up a bunch of foods he has not been able to eat and perhaps make a DFI diet feasible. Does anyone else here have this problem with milk allergy, too?

I am desperate for a bread recipe that does not use fructose, sucrose, nor milk. Should I just beg for the impossible now?! lol

One thing that is looking up is the treats for my son. He hardly ever has had treats as he reacted to them so much. Now we think we know why. With the advice of another Mommy I met who has a fructose malabsorber, she told me about rockets and sweet tarts. I have not found the latter yet but he LOVES the rockets and so far so good! Valentine's Day is looking up!

I look forward to seeing what you have found works for your children. We have been instructed to give him a diet high in protein and fat, low in carbs, essentially an Atkins Diet of sorts. He can not tolerate high fibre at all, either. We will see the GI dietician at some point as we are newly diagnosed but I would love to have a head start here to stop his pain.

Thank you!

[Tammy]

Hi Leigh,
My daughter has HFI and I've been dealing with her diet for 20+ yrs now. I sure do understand how hard it is when, as a mother, you just don't know where to turn. We don't have a problem with dairy so that will be included in a lot of the recipes I have posted on this site. Like Fred's bread, sometimes you can just leave it out, and others it may be possible to subsitute water, just to replace the liquid.

The very best way to start out is to just go very plain, and keep things very basic.

So welcome, and we'll be more than happy to help in any way we can.
Tammy

[leigh]

Thank you, Fred! I will be sure to try out the bread recipe if you say it works without the milk and such. I bought dextrose this weekend and am staring at it wondering what to do with it. lol I shall get the hang of it. We have done so many elimination diets for him already (just missing gluten free I guess) and I must say that this one is by far the absolute worst to plan and work out. This weekend will be the milk challenge. I have the milk already in the fridge and ready with the lactese drops in it. Just have to wait until the weekend in case he reacts.

Tammy, I thank you as well. I have NEVER heard of this before. Certainly 20 years ago it must have been fun to try and figure this out. When the GI mentioned to trial a reduced fructose diet I pretty much laughed. And saw a change. Did not clue into the sucrose part at all, but so many questions have been answered. Unfortunately, so many more have cropped up.
Has anyone had problems with pancreatic enzymes at all as well with this disorder? I fully realize that HFI and DFI are light years apart in terms of severity and long term damage, but as my son seems fine for the liver enzymes I was surprised to see our GI is testing his pancreatic enzymes now. Just curious.

We are still trying to figure out a plan for meals for a week and for daycare and school. It is proving to be a tremendous challenge. If I can get some bread made up then it might make things easier as he loves bread. Now we understand why he vomits bread so much, though.

Are there only HFI people on this board, by the way?

[alice]

How wonderful that you found this board. I did the Happy dance when I found it and was in a similar boat as you!

This board welcomes HFIers and DFIers. There are many difficulties with figuring out what falls into either catagory. So I actually go to 2 boards now for my information.
I visit this board daily and I also visit another board that is an offshoot from this board for the information that may not apply to a diagnosed HFIer. My daughter is on a very strict HFI diet, but does not have an HFI diagnosis.

www.mfipb.com/?mforum=fructoseintoler

there is a Yahoo board also, and I will have to figure out how to direct you there.

Candy with dextrose and no "sugar" or corn syrup:
Wonka Bottle Caps.
I also know that the "Rockets" that you spoke of are what we call Smarties. Be sure to read each label. We have found that the Wonka brand ingred. are where we head. We have bought "pixie sticks" that were not Wonka and they had sugar. But we assumed and my daughter ingested sugar! ughhh
"CANDY" is another area of debate with HFI vs. DFI... Not sure which is right, but we did the happy dance when we found smarties and pixie sticks too!

Hope this helps!

P.S. Tammy does Regina tolerate unsweetened cocoa? I want to try those brownies and am leary. Also, if you don't mind actually posting the recipe, I have the Hershey brand and found something on the Tollhouse website and not sure it's the same.
Alice

[Tammy]

Regina does fine on the unsweetened cocoa. She drinks chocolate milk made with Nestles sugar-free chocolate daily.

There are many questions regarding the sugar alcohols. When we first started this diet, the diet lists from Boston U. said no sorbitol, but all other no-calorie sweetners were ok. So that is what we did. It works for Regina. That is all I can say for sure. You do have to watch the amount of some kinds, but that is true for everyone, not just HFIer's. The only exception to the above "rule" is the new Splenda. We tried that once, and she got very sick from it. Other seasoned HFIer's from the Swiss site also had trouble with it. Some are doing well with Stevia, but I've never tried it as I've never had a reason to. So........ with all this in mind..............Regina can also have Werthers SF Butterscotches, Bob's SF Peppermint candies, and there are several other little "smarties" type things that I can get at Wal-Mart sometimes. Also, Gertrude Hawks SF chocolate midgets and SF choc covered pretzels are a big hit, especially in the easter basket. I did find some SF non-fruit jelly beans one time in a chocolate specialty store, but forget the name. I only mention it to point out that it is worth looking for.

I thought I saved the package for the brownie recipe, but I just checked and it must have been thrown out. So the next time I get to the store and pick more up, I'll post the recipe (unless Kelly has it on hand, she found it originally) I would think the one on the web site would probably be the same, though.

School lunches were always a bit of a problem. You can get some luncheon meats if you look. Sometimes ham or turkey. We would just roll up cheese (depending on dairy) inside the slices of meat if we didn't have bread. Chips, Triscuit crackers, Cheez-its (now in fun Shrek and Scooby Doo shapes), or cheese curls would usually be packed along. Most days she would just have a cheeseburg (minus the bun) and french fries. tuna and chicken is another option now that I heard about Dukes mayo. It would have been nice when she was in school. Dill pickles usually makes a big hit.

If he likes bread, maybe he'll also like the bisquik biscuits. We use these for a bun.

I don't know much about pancreatic enzymes as she's never had a problem with them.

Sure hope the dairy test works our for you Leigh, that will sure make things a little easier.
Tammy

[Tammy]

Following the sugar chart on Dr. Tolan's Boston U site, All the candy I mentioned are still ok.

[cjsmom]

Hi all,
My Son is 2 1/2 and has Celiacs and Dietary Fructose Malabsorption. I am getting used to the Gluten free after 6 months but now I am trying to deal with the Fructose and sucrose. His list is getting smaller all the time. You may have luck with some of the rice breads. There are also some pancake recipes you can make with little sugar and I use pancakes as bread. I also found out that Smarties are GF and only contain Dextrose and Maltodextrin. I too would love to hear about more recipes that you can use Dextrose in. I just ordered my first bag and hope to find more uses than lemon-aid and yogurt smoothies. It is very helpful to have treats available for a 2 year old. I am trying to plan for Halloween.

[boron]

Just one theoretic note on DFI:

DFI person has to stick with LOW-FRUCTOSE (not necessary fructose-free) and LOW-SORBITOL diet. Many DFIers are intolerant to FRUCTANS (wheat, onions...), and many have other intolerances as lactose intolerrance or celiac disease. Allergies are also common in this group.

Some DFI persons need to stick with FODMAP diet. This is a low-sugar diet, but it is not Atkins diet. Starch should be tolerated by HFI and DFI persons.

Fibers may be a problem because of bloating which aggravates fructose malabsorption symptoms. Some people recommend probiotic Lactobacillus plantarum Lp299v, which degrade many fibers, and thus prevent bacteria to do the same, and so less gas is produced.

More about HFI and DFI and special diets in this links thread:
hfiinfo.proboards42.com/index.cgi?board=links&action=display&thread=495

[lisa]

There are very few tolerated differences between the diet of my DFI son and folks with HFI so far. Really it amounts to being able to have a limited number of berries, but there are small consequences like behavior quirks from ingestion.

There are some things that many HFI can have that he is unable to like cocoa/chocolate, lettuce, spinach, and items containing small amounts of polysorbate 80 (as in SF Cool Whip and some creams).

In my opinion, following the HFI diet is the best bet for someone starting out as it will allow the body to recover most fully. Yogurt with active cultures also played a big part in his initial recovery.

[boron]

Aug 18, 2008 14:37:41 GMT -5 lisa said:

There are very few tolerated differences between the diet of my DFI son and folks with HFI so far.

There are some things that many HFI can have that he is unable to like cocoa/chocolate, lettuce, spinach, and items containing small amounts of polysorbate 80 (as in SF Cool Whip and some creams).

Most HFIs can eat WHEAT and can't eat NUTS, in DFI is just the opposite. In general HFIs are mainly only intolerant to fructose and sorbitol, but DFIs also on fructans and fibers in general. DFIs often can have oranges, lemons, bananas.

[lisa]

My son can eat wheat and eats lots of peanut butter sandwiches. For nuts he tolerates walnuts, sunflower seeds, and peanuts, a small amount of pistachios, but almonds and cashews are a definite no.

He does not tolerate oranges or bananas.

He eats cereal like Grape Nuts, shredded wheat, or Purely O's (all whole grain) a few times a week without any issue. This is actually the reason he is not constipated which was an issue when we first started him on the diet.

[Susan Crawford]

Thank you for creating the HFI diet info. Following this diet has made me a new person. I also lost thirteen pounds and wore a bikini for the first ever at age 44. I have been able to discontinue a lifetime of antidepressant use which caused me more constipation really. I still have pretty bad splenic flexure pain and bloating even after multiple rifaximin treatments. Do you have any answers for this? again, thank you for all your work. Susan

[anastazya]

Wow...I can't have any fructans or fructose. I wonder if I have both. But the DFI/FM diagnosis came back negative. If I have HFI...it doesn't get to the transportation part...it can't get broken down that much. Wonder how many people are both HFI and DFI/FM?

The only way to test that in a HFI is give them a solution of fructose that is already broken down....hhmmmm....

[meaniejean]

Actually, since about 1 in 3 of those of Northern European ancestry malabsorb fructose (though most are asymptomatic) there is a very high probability that those with HFI also might malabsorb fructose. Perhaps those without abdominal symptoms - who only ever show liver or neurological symptoms - are those that DO NOT also have DFI ... hmmm ...

When I had my fructose breath test it showed that I was significantly malabsorbing fructose. But, blood tests also showed some pathological changes associated with HFI or FDPase deficiency but not overly dramatic. So, I'm malabsorbing the fructose AND whatever does make it into my bloodstream is also causing me some problems. In order to experience the symptoms of HFI the fructose first needs to be absorbed through the small intestine. People with DFI have a limited ability to absorb the fructose in the first place, perhaps meaning some liver protection for those with DFI and HFI.

If you had a negative breath test but had symptoms, then you probably do not have DFI, but instead HFI or FDPase deficiency. But, a positive breath test does not exclude an HFI/FDPase diagnosis.

[ukbill]

Lisa you are wrong when you say:-

"There are some things that many HFI can have that he is unable to like cocoa/chocolate, lettuce, spinach, and items containing small amounts of polysorbate 80 (as in SF Cool Whip and some creams)."

No HFi can take chocolate or Cocoa, they both contain Fructose, that I have heard of and eating anything sweet for an HFi'er is not a sensible option.

Peanut butter is very high in both Fructose and Sorbitol and a definite NO_NO for any HFI'er as are most nuts.

How is a child supposed to tell if a sweet is safe or not for him/her to eat??? just don't give them at all, its the only "SAFE" option.

Also the Sweets made form Dextrose and Glucose will dissolve the teeth literally so fast monthly visits to the dentist will only prolong the eventual loss of most or all teeth!

Meaniejean I think you are incorrect when you say HFI'ers have to adsorb the Fructose through the small intestine. 25% of sugars in food are adsorbed directly through the tissue in the mouth and throat (assuming you can keep the horrid stuff in your mouth that long.)

I go HFi reactive in a few seconds to 5 min max after eating Sucrose or Fructose containing foods, long before it can reach the small intestine.

Grape Nuts in the UK have added Sucrose and also are high in digestible plant fibre..

It will not matter if you are HFI or DFI digestible plant fibre will brake down in the gut to produce Sucrose!

This in turn will inflame the intestine and cause bloating and all sorts of problems.

The only answer is a low fibre diet and NON digestible plant fibre.

Psyilliam Husks are Non-digestible and gel forming and do the job a treat and have transformed my life.

[anastazya]

No true. Since they test on fructose and not the broken down fructose, there might not be enough fructose being transported to make a positive diagnosis. I had my hydrogen/methane numbers go up...but not high enough.

Wonder if I had the fructose that was already broken down if the numbers would go up?

[anastazya]

Ukbill....I still love my kelp!

[ukbill]

And Why not?

Kelp is sea weed and so has lots of good stuff in it like Iodine and trace minerals.

I like my lettuce (Green leafy varieties not the cabbage like Iceberg) and Spinach in small amounts, but these are not high in Fibre.. Potato skins are and High Bran cereals too.

If I could get Kelp I would try it for sure. Although the thick Brown slimy stuff I sometimes pull up attached to my Sea Fishing hook instead of a tasty Fish seems very unappetising.. but then so is a whole Cow or Pig I suppose.. and they are Very tasty

Can you tell I'm hungry while typing this?

Think I'll go and cook then eat as big a part of one as I can find in the fridge.. Keep on Smiling.

[meaniejean]

That's true, ukbill - some is absorbed through the mouth, but the majority comes through the small intestine.
I'm not sure they could give a test with "broken down fructose" as fructose is a monosaccharide.

[anastazya]

Fructose gets broken down in our bodies with enzymes. HFI is due to the fructose getting broken down to a toxic. The enzyme we are missing would allow it to get broken down to a usable form by our bodies. So, if we can get the form that is usable by our bodies, HFI should not have a reaction because it by-passes the enzyme we lack.

Was trying to fond a good web page to illustrate what I am talking about, but can't seem to find a good one. Will post link if I find one.

There is a blue-green algae that already have it broken down. Wonder if that an be isolated or just drinking the algae would do it. Need to get with a scientist about that one.