Fructose Malabsorption
The disconnected puzzle pieces may finally be starting to fall into place.
It seems fairly well-established now that Baby E is, in fact, definitely not lactose intolerant. She tolerates breastmilk, yogurt, and whole cow's milk just fine.
But we know from her symptoms and from the positive reducing substances tests that she malabsorbs some kind of sugar. Ruling out lactose as the problem sugar set me to researching again.
Sucrose intolerance or congenital sucrase-isomaltase deficiency doesn't seem to fit.
What does seem to fit--so far nearly flawlessly--is fructose intolerance. Yes, fructose. Apparently being able to tolerate orange juice, white grape juice and organic strawberries doesn't rule out fructose intolerance. Fructose absorption (in the non-hereditary form of intolerance) is affected by glucose levels, not just fructose levels alone. Oranges, white grapes and strawberries are less likely to cause problems for a fructose malabsorbing person because they have a good balance of fructose and glucose.
Also, now that we know better what to look for we're realizing that "tolerate" is all relative. It's hard for a baby to tell us whether she's experiencing stomach pain or intestinal cramping--especially if she's experienced those feelings almost constantly for most of her life.
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Almost all of the foods we know she has issues with (including corn, soy and other legumes) are problematic for people with fructose intolerance.
So many of the symptoms that have seemed chronic or random suddenly make sense now. Also, many of the issues we thought were the result of trace amounts of corn derivatives could have been caused by fructose instead.
Almost every single time Baby E has had a non-rash food reaction, we can correlate it to consumption of fructose or fructans (chains of fructose molecules found in certain vegetables and grains, such as artichokes and whole wheat).
All those "healthy" foods I was making with honey in them would be problematic if fructose is really the issue--honey is worse from a fructose perspective than cane sugar. So are agave nectar, grade B maple syrup, and all those other "healthy" unrefined sugars that I could never figure out why E didn't seem to tolerate all that well.
Most of the times we've been at gatherings and I thought she was reacting to trace amounts of food others were eating, I'd brought along some kind of "safe" treat for her--usually fruit or something with honey in it.
Every time we've tried whole wheat bread with regular yeast, she hasn't seemed to tolerate it well. She does much better with unsweetened sourdough bread. But it may not have been an issue of the yeast being grown on corn after all. Whole wheat contains fructose, and the yeasted bread had a small amount of honey in it. Sourdough culturing breaks down the sugars and the fructans in the grains.
E digests unenriched white rice better than brown rice, and brown rice better than wild rice. White rice has the least fructose/fructan content of the three.
Remember the probiotics that made her so miserable, that contained FOS? FOS and inulin are fructans.
The weekend we went to the coast with Malamute Rescuing family, Baby E did great at first, but got increasingly miserable throughout the weekend. We were eating a lot of fruit and artichokes while we were there. Artichokes are high in fructans.
On our last trip, Baby E kept getting increasingly uncomfortable. We were eating quite a bit of zucchini brownies that I'd made to take along as a treat. They were sweetened with honey. Zucchini is rather high in fructose also, for a green vegetable.
Now that we understand how to watch fructose and are avoiding it most of the time, we can finally see a pattern. A quarter of a pear, banana or plum gives her stomach cramping and a very soft BM within an hour or so. Her reflux gets worse, she gets a bit grumpy, and has trouble falling asleep for naps. 4 blackberries resulted in the same symptoms yesterday.
We thought she tolerated grapes well, but when we tried them this week after 24 hours off fructose, she got fussy/sleepless/gassy/diarrhea for the rest of the afternoon with some red and purple grapes. We still need to trial white grapes to see if she can tolerate them better.
We're probably going to have to do some more testing to verify this, and to make sure what she has is fructose malabsorption (a.k.a. dietary fructose intolerance) as opposed to the much more rare, severe and limiting hereditary fructose intolerance.
With hereditary fructose intolerance she would have to pretty much completely avoid all fructose and sucrose of any kind, which would mean essentially all fruits and vegetables, legumes and whole grains--as one sufferer put it, "pretty much anything that grows out of the ground". The only kinds of sugar she could have at all would be glucose (dextrose) and lactose. We would probably have to worry about cross-contamination and trace amounts of sugars in her food and medications.
But with E's symptoms and history, I think dietary fructose intolerance (fructose malabsorption) is much more likely than hereditary fructose intolerance. HFI is extremely rare--somewhere between 1 in 10,000 and 1 in 100,000, while 1 in 3 have some level of FM (many people have it so mildly they never know it, or just get diagnosed with something like IBS--I've known my own IBS was at least partially sugar-related for some time now).
Baby E's fructose malabsorption seems to be fairly severe (4 blackberries?!), but it does (at least in my internet-educated opinion) seem to be malabsorption rather than the more serious form.
With fructose malabsorption, we'd just have to figure out her tolerance level in order to find out which foods she can tolerate. She may be able to tolerate things with a good balance of fructose and glucose (like cane sugar, white grapes and oranges) just fine, or in moderation. The good thing about FructMal is that we probably don't have to worry about trace amounts of foods--just what she's actually ingesting.
Either way, it's most likely not something she'll grow out of. And her diet will probably be very limited and complicated, especially if she continues to have issues with even fructose-free corn and soy products. But we specialize in limited and complicated here at the Kangaroo Cottage, right? :)
Interestingly enough, from what I've been reading the very safest foods for people with fructose issues are meat, peeled white potatoes, and (for those that can tolerate lactose) plain dairy products.
Baby E's favorite foods have always been meat of all kinds, potato chips and plain unsweetened yogurt.
It seems fairly well-established now that Baby E is, in fact, definitely not lactose intolerant. She tolerates breastmilk, yogurt, and whole cow's milk just fine.
But we know from her symptoms and from the positive reducing substances tests that she malabsorbs some kind of sugar. Ruling out lactose as the problem sugar set me to researching again.
Sucrose intolerance or congenital sucrase-isomaltase deficiency doesn't seem to fit.
What does seem to fit--so far nearly flawlessly--is fructose intolerance. Yes, fructose. Apparently being able to tolerate orange juice, white grape juice and organic strawberries doesn't rule out fructose intolerance. Fructose absorption (in the non-hereditary form of intolerance) is affected by glucose levels, not just fructose levels alone. Oranges, white grapes and strawberries are less likely to cause problems for a fructose malabsorbing person because they have a good balance of fructose and glucose.
Also, now that we know better what to look for we're realizing that "tolerate" is all relative. It's hard for a baby to tell us whether she's experiencing stomach pain or intestinal cramping--especially if she's experienced those feelings almost constantly for most of her life.
#################################
Almost all of the foods we know she has issues with (including corn, soy and other legumes) are problematic for people with fructose intolerance.
So many of the symptoms that have seemed chronic or random suddenly make sense now. Also, many of the issues we thought were the result of trace amounts of corn derivatives could have been caused by fructose instead.
Almost every single time Baby E has had a non-rash food reaction, we can correlate it to consumption of fructose or fructans (chains of fructose molecules found in certain vegetables and grains, such as artichokes and whole wheat).
All those "healthy" foods I was making with honey in them would be problematic if fructose is really the issue--honey is worse from a fructose perspective than cane sugar. So are agave nectar, grade B maple syrup, and all those other "healthy" unrefined sugars that I could never figure out why E didn't seem to tolerate all that well.
Most of the times we've been at gatherings and I thought she was reacting to trace amounts of food others were eating, I'd brought along some kind of "safe" treat for her--usually fruit or something with honey in it.
Every time we've tried whole wheat bread with regular yeast, she hasn't seemed to tolerate it well. She does much better with unsweetened sourdough bread. But it may not have been an issue of the yeast being grown on corn after all. Whole wheat contains fructose, and the yeasted bread had a small amount of honey in it. Sourdough culturing breaks down the sugars and the fructans in the grains.
E digests unenriched white rice better than brown rice, and brown rice better than wild rice. White rice has the least fructose/fructan content of the three.
Remember the probiotics that made her so miserable, that contained FOS? FOS and inulin are fructans.
The weekend we went to the coast with Malamute Rescuing family, Baby E did great at first, but got increasingly miserable throughout the weekend. We were eating a lot of fruit and artichokes while we were there. Artichokes are high in fructans.
On our last trip, Baby E kept getting increasingly uncomfortable. We were eating quite a bit of zucchini brownies that I'd made to take along as a treat. They were sweetened with honey. Zucchini is rather high in fructose also, for a green vegetable.
Now that we understand how to watch fructose and are avoiding it most of the time, we can finally see a pattern. A quarter of a pear, banana or plum gives her stomach cramping and a very soft BM within an hour or so. Her reflux gets worse, she gets a bit grumpy, and has trouble falling asleep for naps. 4 blackberries resulted in the same symptoms yesterday.
We thought she tolerated grapes well, but when we tried them this week after 24 hours off fructose, she got fussy/sleepless/gassy/diarrhea for the rest of the afternoon with some red and purple grapes. We still need to trial white grapes to see if she can tolerate them better.
We're probably going to have to do some more testing to verify this, and to make sure what she has is fructose malabsorption (a.k.a. dietary fructose intolerance) as opposed to the much more rare, severe and limiting hereditary fructose intolerance.
With hereditary fructose intolerance she would have to pretty much completely avoid all fructose and sucrose of any kind, which would mean essentially all fruits and vegetables, legumes and whole grains--as one sufferer put it, "pretty much anything that grows out of the ground". The only kinds of sugar she could have at all would be glucose (dextrose) and lactose. We would probably have to worry about cross-contamination and trace amounts of sugars in her food and medications.
But with E's symptoms and history, I think dietary fructose intolerance (fructose malabsorption) is much more likely than hereditary fructose intolerance. HFI is extremely rare--somewhere between 1 in 10,000 and 1 in 100,000, while 1 in 3 have some level of FM (many people have it so mildly they never know it, or just get diagnosed with something like IBS--I've known my own IBS was at least partially sugar-related for some time now).
Baby E's fructose malabsorption seems to be fairly severe (4 blackberries?!), but it does (at least in my internet-educated opinion) seem to be malabsorption rather than the more serious form.
With fructose malabsorption, we'd just have to figure out her tolerance level in order to find out which foods she can tolerate. She may be able to tolerate things with a good balance of fructose and glucose (like cane sugar, white grapes and oranges) just fine, or in moderation. The good thing about FructMal is that we probably don't have to worry about trace amounts of foods--just what she's actually ingesting.
Either way, it's most likely not something she'll grow out of. And her diet will probably be very limited and complicated, especially if she continues to have issues with even fructose-free corn and soy products. But we specialize in limited and complicated here at the Kangaroo Cottage, right? :)
Interestingly enough, from what I've been reading the very safest foods for people with fructose issues are meat, peeled white potatoes, and (for those that can tolerate lactose) plain dairy products.
Baby E's favorite foods have always been meat of all kinds, potato chips and plain unsweetened yogurt.
Labels: health issues, interesting tidbits
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Posted by purple_kangaroo at 4:30 PM[Permanent link]
15 Comments:
Yowza! What a relief to know that it isn't corn/soy allergy and to be narrowing it down to the actual culprit.
You are an amazing mommy and have done an incredible amount of detective work.
Well, we don't actually know at this point whether we're dealing with fructose AND corn/soy allergy, or if once we deal with the fructose issue then her gut will heal from the corn/soy allergy, or if she's grown out of the corn/soy allergy. The corn and soy issues are separate from the fructose issue, even though corn and soy also happen to be problem foods with fructose intolerance.
Fructose intolerance wouldn't cause problems through breast milk, and doesn't cause symptoms like rash, facial swelling and itching.
Oh. Well that sucks.
OTOH, if it is two separate problems, that's better in a way than if it's one big formerly unheard-of by the medicos problem.
I'm so glad you're finding more pieces to this puzzle! A diet that is complicated and limited seems like it will be a lot less frustrating when you know precisely what it is you are limiting. Interesting that so much of the "healthy" foods seem to, in fact, be less healthy for Baby E.
Oh, and I tried plain unsweetened yogurt once. Blech! I had to add a couple tablespoons of strawberry jam to make it palatable for me. So, good for her, if she's liking it!
(((A))) wanted to pop in and let you know y'all are in my thoughts. God is amazing in carrying us through the trials in our lives and it seems like he is guiding you at just the right pace for your own benefits! (((more hugs)))
A big pat on the back to you (mum and dad). We are going throught the same slow battle with our baby daughter and are just beginning to see some light at the end of the tunnel. I have consulted a dietitian who has given me invaluable practical info and lists of suitable and unsuitable foods. She has reccommended two cookbooks by Sue Shepherd called "irresistables for the irritable" and "two irresistable for the irritable" . I am yet to get them, but they are supposed to be especially good for fructose malabsorption.
All the best with your journey and here's to our girls growing out of this limiting and uncomfortable problem.
Angela.
Problematic foods in fructose intolerance are:
- fructose, especially when fructose:glucose ratio is greater than 1 (apples, pears, oranges), High Fructose Corn Syrup (HFCS)
- sorbitol (prunes, "low calorie" foods, "sugar free" chewing gum) OR other "sugar alcohols" as xylitol, maltitol, mannitol, hydrogenated starch hydrolysates (HSH).
- fructans (onions, wheat)
Many fructose intolerant perons have problems with
- galactans and raffinose (beans)
- maltose - a disaccharide often found in some breads and in snacks like Scickers bar
Guide for LOW FRUCTOSE DIET:
http://www.allhealthsite.com/212/low-fructose-and-fructose-free-diet/
More extensive FODMAP DIET:
http://www.allhealthsite.com/223/low-sugar-diet-or-fodmap-diet-helps-in-ibs-and-chrons-disease/
I am not doctor official yet but I am sure I have HFM. I almost had liver shut down after finishing a bottle of blue agave over a about 2 weeks. I am 43 and they told me I had a bad reaction to mold when I was a baby. I thought I had celiac disease but the biopsy was negative. Fasting made me better, but now it is 12 years later and it came back and I was laxed off my anti gluten diet. It was the fructan not the gluten and the Fructose the whole time.
I think my daughter and I are in the same boat. I am just realizing the pattern, I thought previously it was just hypoglycemia but then why are bananas tolerated better than apples? Right now I am trying to figure out if probiotics and/or yogurt are contraindictated due to encouraging bacterial growth in the gut, which worsens FM symptoms. Do you know about this?
A sucrose molecule is a glucose molecule and fructose molecule linked together. When sucrose is digested, it breaks down into glucose and fructose.
If you are avoiding fructose, you also need to avoid sucrose.
Some grains and vegetables also contain fructans (fructose molecules linked together). Those foods also need to be avoided.
Robert H. Lustig, MD, UCSF Professor of Pediatrics in the Division of Endocrinology - Fructose/Sucrose Metabolism
Food tables: fructose and fructans
To the most recent anonymous: Sucrose is only a problem in the more severe hereditary fructose intolerance, not so much in simple dietary fructose malabsorption. The body uses glucose in processing fructose, and since sucrose is equal parts glucose and fructose it is not as likely to be a problem for the milder form of fructose intolerance.
In fructose malabsorption, the foods most likely to be a problem are those foods with a very high ratio of fructose in relation to the glucose, which is why foods like bananas and white grapes are more readily digested than apples and pears. Apples and pears have the highest amount of fructose in relation to glucose of the fruits, I believe.
Ebee still can't tolerate much pear or apple, but she does fine with moderate amounts of most other foods now.
JenT, the type of bacteria in yogurt and probiotics is the type of bacteria you DO want growing in the gut, and will actually help fight the bacterial overgrowth you're worried about.
I am reading your blog with much interest and empathy: I have a 6 yr-old daughter who recently outgrew her reflux (from birth). Almost 2 yrs ago we discovered, after much trial and error and much frustration with the medical profession for its narrow understanding of intolerance, that my daughter is severely intolerant to fructose (malabsorbtion, not the hereditary kind). Despite her testing way above the baseline (20 times!) on the fructose breath test, her GIs (past and current) still are reluctant to accept that she cannot have wheat for instance.
I now have a 3 month-old baby with reflux. I wonder if you would recommend avoiding fructose in my diet and in her reflux medication just to be sure. Did only your young one suffer from FM? Is her diet less restricted now?
it felt so good to read your blog. wishing you and your family well.
Lauren
Lauren, yes, Ebee does have a dietary fructose intolerance. It's much more mild now, but apple juice and some other high-fructose foods will still give her diarrhea.
She seems to have grown out of all the other issues, including the food allergies and reflux. She's a very healthy, happy child now who will be turning 5 years old soon.
I am close to 60 years old, and just realized that my continual ill-health (and bad moods) throughout my life was probably due to a severe fructose malabsorption. I am seriously considering going onto a pemmican and fresh meat diet, with a few potatoes occasionally. If I had only been diagnosed (HA!) many years ago, I may have been able to save my first marriage, and my kids would have had a much saner mother while they were growing up.
And even though someone seems to have "grown out" of a food sensitivity, it is possible that the damage done by the food sensitivities can mask small symptoms, which then can become big symptoms in later years. There is a lot of peer pressure to "eat normal". A baby can't control their misery, but it is quite possible for an older child to ignore some of the small pains in order to please the people around them. This just postpones problems.
We are thinking this is the issue our 4 year old daughter has been having for years now. She also has a dairy and soy intolerance. She's never been able to tolerate strawberries at all. They send her running to the toilet immediately.
She LOVES apples and apple juice so that has been a horrible problem. But since she was a baby all she would eat is meat and leave most every thing else. Bananas are safe for her and blueberries. But that's about it. We wondered if she was celiac but she tested negative for that.
She has a pediatrician appt in 2 weeks and I mean to ask about her being tested for Fructose Intolerance. I don't know if they do the testing here in Canada though.
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