What to eat?

Fructose Intolerance
#1

Hi -

My 4 year old is celiac, allergic to milk, eggs, soy, nuts and a few other items, and is now based on the breath test fructose intolerant. But, I didn’t get any guidance from my doctor. She gave me this list to avoid like ALL fruits, ALL sugars, etc. But from what I have looked on the Internet it seems that people can tolerate some items like a lemon once in a while or maple syrup on pancakes if a good grade. I’m wondering things like can one eat chocolate or carob or do they too have fructose in them? Any direction would be most helpful. Thanks.

Dorothy

#2

Hi Dorthy,

Yeah, I know its hard to figure out what to eat and what not to eat. Plus most of the guidelines can be different. I have HFI so my diet is the most strict of the Fructose Intolerant diets. I can not have any fruit, very few vegetables( even thou all vegetables have Fructose) Honey, Chocolate(sweetened with sucrose or Sucanat) Mollases, any legumes, nuts, and some more. Basically I dont eat anything with Fructose. But, fuctose is also in regular table sugar(sucrose) so stay away from that also. I have been reading more about younger children with DFI that are becoming Lactose intolerant and being diagnosed with Celiac disease. I was tested for both of those earlier this year, and did nto have them. But, I have GI problems, because of this disorder. I was diagnosed when I was 4.5 years old. I am now 33. Most of the allergies that your child has are related to what seems like a case of DFI(dietary fructose intolerance). I know that most children are being diagnosed with the Breath Test and if you have the money, a doctor back in Boston is doing a DNA test. I was diagnosed using the Fructose Challenge, which is not use anymore, because it is dangerous and has to been done in a very controlled environment.
Oh, and I almost forgot, but since your child has Celiac, brown rice has fructose in the outer shell and so does whole wheat. So watch out for the sugar content in brown rice. I know that your child will not beable to eat Flour at all, so hopefully the rice flour is white rice flour, cause it will have a lower almost NIL content of sugar. I found this great magazine which might also help you with the Celiac, its called: Living Without. They have a web site also.
You can also go to the FDA website, I think they have a list of sugar content in all food. But, one thing is the age of your child, how long they have been on a Fructose Free diet, and also height and weight, for this all plays a role in how the body reacts.

I hope this helps, you can e-mail anytime.

take care,

Daniel

#3

Hi

My ds is also almost 4yrs old and has a lot of the same issues…he has
not been diagnosed with celiac though but seems gluten intolerant
He has a very limited diet now
He eats 1/2 pear per day (seems to tolerate it, so i’ve been keeping it
in his diet for now, he can not tolerate grapes, banana, raisins,
corn…VERY bad reaction)
He eats safe white rice pancakes and muffins and cookies…only
sweetened with stevia
Besides that he eats chicken, and rice cakes (I think these are brown
rice which he seems to tolerate in small doses)
Since removing all gluten and most fructose, I have been able to add
cheese back into his diet and he seems to tolerate that…
Still trying to understand the puzzle

GOODF LUCK, Kim

On Jul 20, 2007, at 4:19 PM, Daniel wrote:

#4

Here is a great link that has helped us tremendously along the way:
http://www.nal.usda.gov/fnic/foodcomp/Data/Other/herr48.pdf.

Dietary fructose intolerance can occur from damage done through other allergies or disorders.
I wouldn’t recommend maple syrup since it is straight sucrose, 50g+, (glucose and fructose combined). Some people can tolerate small amounts of sucrose (table sugar) since the fructose in it is bound with glucose which aids in carrying it out of your system, but we have never had any success with it at all.
Pears are also a bit high in the fructose and sucrose amounts. Each person has a different tolerance level though. Citrus fruits are the lowest in fructose, hence why some tolerate lemon etc occasionally.
The only fruits my daughter has tolerated have been extremely small amounts of citrus so far and not on a daily basis. Maybe one-two times a week she can have something like broccoli or one of the other extremely low fructose veggies, but she obviously doesn’t tolerate much of them either.
Her diet is mainly chicken, white flour products, white rice products.
She also deals with a dairy allergy and lactose intolerance, but tolerates goat’s milk with lactase enzyme drops. She has problems with beef and any corn by product out there so we too deal with extra challenges.
HTH.
Brandi

#5

Hi -

Thanks for everyone for responding. It really is difficult adjusting to our new world. Daniel, would you mind sending me the info on the doctor in Boston. I’m curious as to what he is doing.

One thing that I have been wondering is how my doctor can just say off the cuff that it is dietary and not hereditary. So far, she is not tolerating any fruits or veggies. I think she’s even having a hard time with nuts. Looking back on my family, my Dad has gout (which I guess is related) and not a fruit lover. And, I never eat fruit unless its cooked into something. Growing up, I was a meat & potatoes girl. Now, I never had gastro problems but its just something nagging on my mind. How can you diagnose one rather than the other?

Thanks again to everyone.
Dorothy

#6

There are certain things that will flag it as a metabolic issue versus a
gastric-only issue. This is how the Dr should be able to tell…although
everyone is different and reactions can vary, so I don’t blame you for
doubting his Dx. Here is a document that begins to describe the 6 types of
FI:

http://www.ajcn.org/cgi/reprint/58/5/788S.pdf#search="FDPase%20glycerol%20Intolerance%20pyruvate%20lactate"

But at the end of the day, the treatment is pretty much the same for all.

DFI - low/minimal fructose diet
HFI - very low fructose diet
FDPase - very low fructose diet & avoid long stretches w/o food and high fat
items
DGA - like FDPase, plus some proteins should be restricted

So my advice would be eliminate fructose completely for a good period, then
slowly add one low fructose item back in at a time to find the tolerance
level. I’m not a dr, but I am a mom, and I know how hard it is to see your
baby hurting…slow and careful is the way to go here!

It’s been almost 2 years since restriction for us and my son still can’t
tolerate even the lowest of fructose content items…it’s only been in the
last couple months that he’s able to eat celery…this is not a quick
process by any means…but results can be seen immediately. Within 3 days
of restriction my son was a completely different person.

Good Luck!!!

Meantime, here is another site that you might find helpful, lots of moms
going through what you are:
http://www.mfipb.com/index.php?mforum=fructoseintoler&act=idx

KJ

----- Original Message -----
From: "momofgirlswithcurls"
fructose-intolerance-cpt5326@lists.careplace.com
To: kristenmjoyce@comcast.net
Sent: Thursday, August 02, 2007 12:00 AM
Subject: Re: [fructose-intolerance] What to eat?

#7

Hi Brandi

Sounds like my ds Zachary
His diet also consists only of chicken, turkey burger, white rice
products…
He can tolerate 1/2 pear per day but does horribly with corn, banana,
apples, grapes, raisins etc
I’ve been told he can’t have FI if that’s the case…I’m just confused
He loves nuts but can’t tolerate them…
I don’t know what to get him to try now to expand his diet
I am curious what other flours I may be able to cook with…he doesn’t
tolerate oat flour…I’m looking into sorghum etc?

Kim
Zach and Ava’s mom
On Aug 1, 2007, at 6:26 PM, litlangelkins wrote:

#8

Kim who told you Zach can’t be FI & why?

----- Original Message -----
From: “kimber” fructose-intolerance-cpt5326@lists.careplace.com
To: kristenmjoyce@comcast.net
Sent: Thursday, August 02, 2007 10:10 AM
Subject: Re: [fructose-intolerance] What to eat?

#9

HI

I haven’t really spoken to any Dr about it…they all blow me off and
think Zach is just ‘constipated’…SO NOT TRUE
I’ve tried to explain how he reacts to food and how he has a Dr
Jekyl/Mr Hyde personality…
He can be the sweetest most well behaved boy on the right diet… or a
miserable, aggressive, angry, for lack of a better word…monster boy!
He gets lethargic, pale, dark eyes, red rimmed…stomach pain, gas etc

I was doing some research on line and a few mom’s said if he had
fructose problems he def. wouldn’t be able to handle ANY fruit
especially pears

Open to any advice, opinions, suggestions etc?
I’ve tried dairy/soy/corn free…i’ve tried dairy, soy, corn and gluten
free…I’ve tried FS and researching amines/sals
I don’t know if he has a true fructose problem of if the too much
fructose causes IBS symptoms…I don’t know??
It seems a lot of the fructose free or safe foods some kids eat he
can’t handle either like French’s potato sticks or potato chips…don’t
know if it;s the grease or oil?

Kim

On Aug 2, 2007, at 10:28 AM, ColeysMom wrote:

#10

Ok, first off take a deep breath…

second I would strongly advocate for a visit with a metabolic specialist
ASAP. If the Drs aren’t game, tell them you want it just to be sure, to
scratch it off the list…say whatever you have to…just get in there!

ok, there are (as you know) several forms of FI. DFI, being the most common
in the discussion groups, it deals mostly with GI issues. Since I don’t have
it, I don’t mean to simplify or minimize it at all…but that is largely the
bulk of what they deal with. I have read about several people that also
deal with low energy and fatigue as well.

The more complex FI forms deal with a lot more. They are metabolic issues
not digestive issues. This means that you will be dealing with an upset to
body chemistry as a result of ingestion of fructose not an upset to the GI
tract (although that can also happen). That reflects differently in
different people, and probably defy logic in children versus adults. As
often happens when children ingest a substance that reacts one way with
adults, it has the opposite or completely unexpected result in children.
When dealing with a substance that (although a food) the body isn’t able to
metabolize, I don’t think it’s far fetched to see crazy and unique
reactions…just working off logic here.

Ok, in addition, all you need to do is read some of the posts from the FI
forum and you will see that infact your situation is not at all unique.

His coloring sounds a lot like low blood sugar to me, it can also be a sign
of seizure activity, so be careful!!! All of which would be clues that
Zach is dealing with a metabolic version of FI versus DFI.

So, assuming that’s true, and again I’m not a Dr…there are a couple
things you need to look at to determine which hereditary form of FI you are
dealing with. Now, nothing is really carved in stone, but a couple things
are:

Aldolase B deficiency will experience GI and BS issues, but depression and
withdrawal has also been mentioned by a few…
Fructose 1, 6 Bisphosphatase deficiency is like the above but also deals
with reactions with long stretches between meals, and must also limit fats.
Some Drs say eliminate fructose 100% some say it doesn’t need to be
restricted as much as Aldolase B.
D-glyceric aciduria is alot like above, but there is also some protein
restrictions and has a lot more noted as far as neurological issues.

Now…sorting out which from which (in the absence of a definitive test)
means time and trials. But at the same time you are dealing with a
polluted/damaged body. Your first goal is to get Zach to base line, then
you can try to determine what’s what.

Before I began restricting Coley’s diet I thought he was tolerating all
sorts of things that I now know he wasn’t. Even after I began restricting
(and realized I didn’t have my facts straight) I though he was handling some
things: nuts, whole grains and legumes (which are all no go’s!)…course I
was comparing him to the kid that was eating all sorts of fructose all
day…him reacting to just those things was a HUGE improvement behaviorally,
emotionally AND developmentally…but when I corrected my mistake…hello
an even bigger improvement!

We had a period of time when dairy and corn products were an issue
too…that has passed, but I’ve read about it in others too…sure Zach
could have sensitivities to more than fructose, but there is a very real
possibility that his body is just all banged up and as a result things that
should be ok, aren’t.

Sorry to say, there is really only one way to figure it out…

alright, as for those fries…I can’t tell you what the heck goes on with
those things…my best guess is trace contaminants…you are SOOOOO not
alone with reactions to fries in the beginning!!! Although it may be the
oil, as many of us have seen issues with certain oils too…our worst was
with hydrogenated types…

If it’s any consolation, we just ate mashed for a few months…we are past
that now…although he prefers McCain’s steak fries now over all those
toddler types he used to love, you know before restriction…

so, with all that, I’m going to repeat…restrict everything…keep it
simple: plain meat, plain fish, plain pasta, plain rice, plain
potatoes…and build from there. Find Zach’s happy place, and see what else
you can add…I know that doesn’t sound very encouraging, but trust me, when
he feels good he won’t want more than that!

I hope this helps!
KJ

----- Original Message -----
From: “kimber” fructose-intolerance-cpt5326@lists.careplace.com
To: kristenmjoyce@comcast.net
Sent: Thursday, August 02, 2007 10:34 AM
Subject: Re: [fructose-intolerance] What to eat?

#11

Thanks so much for your response and for all the information
I was having a rough day :slight_smile:

Are there any good cook books out there…sites with recipes?
I’m still a little uncertain what to feed Zach…as far as grains etc
I found a cookbook geared towards celiacs and people with fructose
issues but it listed oranges and plain old sugar as ingrediants…am I
missing something??

Kim

On Aug 2, 2007, at 12:07 PM, ColeysMom wrote:

#12

I am new to fructose intolerance I had a positive breath test 2 weeks ago the dr really was no help at all I am very confused does wheat have fructose? Do I also need to stay away from Sucrose? what veggies can I have? thank you

#13

Hi Whitecottage,

Did you send this just to me? If so you need to post to the whole
group. The group can help you much better than I can. Joan

whitecottage wrote:

#14

Hello,
daughter just recently diagnosed with fructose intolerant. she is 10. we were told by her GI that this is strictly dietary.
as I’m reading posts on this board and others… so many of you talk about other disorders and issues, DGA, FDP ase, etc… what type of doctor do I go to to see is she has any other issues. Her GI admitted that she has no other FI patients and other than eliminating fructose from her diet, offered no direction at all for further testing. I am wondering if she has other issues…? who do I see?
thank you!
Karen

#15

Hi Karen,
That is to bad about your dau I hate having this but I especially feel sorry for kids and parents of kids. I have found a lot of help thru another board look on this forum for “other helpful sites” its written by Coleysmom that site is most helpful.
What I have learned is everyone is different some tolerate small amounts of fructose others not any. Its finding your dau balance which at first will be a pain.At My first couple weeks I ate only safe food I found bread without fructose stay away from wheat bread look in the freezer section of health food store. I ate peanut butter toast in the morning or eggs or cream of rice for lunch a turky pattie and potatoes or white rice I started feeling so much better so then I started adding things small amounts at first my diet is vary plain but I like feeling good so its worth it. I cannot tolerate any maple syrup and very little white sugar no tomatoes at all. any other questions let me know I will keep my eye on this forum now.