Sugar Intolerance Information

[To skip the technical stuff and go straight to the update about Baby E, click here.]

I've gotten a number of comments and e-mails from people who have or suspect some sort of sugar intolerance or malabsorption in themselves or their children.

I thought I'd put up a post sharing some of the best resources I've come across and what little I've learned so far on the topic. If anyone reading knows of other good resources, please feel free to post them in the comments.

Obviously, I'm no expert, so if you see any errors in this post please let me know. I'm just sharing what little I've learned by reading articles posted on the internet and talking with people who have been diagnosed with various conditions.

One thing to know is that there are many different types of sugar intolerance. These can vary drastically in severity of symptoms, as well as in the foods tolerated.

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The various sugar malabsorptions or intolerances can coexist with each other, can be affected by each other, can be secondary to (caused by) other issues (such as food allergies, celiac disease or anything that damages the digestive system), or can be misdiagnosed as each other (for instance, other sugar intolerances are fairly frequently initially suspected or diagnosed as lactose intolerance). Problems digesting sugars can be either inherited or acquired later in life, and depending on the cause they can be temporary or permanent. They can be caused by multiple factors--possibly including an imbalance of intestinal flora, a genetic defect, lack of certain digestive enzymes, intestinal damage, various diseases, or a number of other causes.

Problems with sugars can include lactose intolerance, hereditary fructose intolerance, fructose malabsorption, trehalose intolerance, glucose-galactose malabsorption, congenital sucrase-isomaltase deficiency (a.k.a. disaccharide intolerance I), and more. According to this article, "There are more than 30 less-common human diseases which cause malabsorption of one or more nutrients" [including sugars].

Some notes to be aware of:


• Sugar malabsorption can be linked to or misdiganosed as irritable bowel syndrome (IBS) or other functional bowel diseases.



• People with fructose malabsorption can usually tolerate sucrose or other foods with equal amounts of glucose (a.k.a. dextrose) and fructose. (Sucrose is equal parts glucose and fructose bonded together.) Apparently somehow the presence of glucose assists in fructose absorption for people with fructose malabsorption.



• People with hereditary fructose intolerance cannot tolerate fructose in any form, whether glucose is present along with it or not. This means that they also cannot tolerate sucrose, since it breaks down into fructose and glucose.



• For many people with a fructose issue, fructans are also a problem. Fructans are not technically a sugar, but they are long chains of fructose molecules and therefore cause problems for many who cannot tolerate fructose. Some of the foods high in fructans include onions, leeks, artichokes, asparagus, green beans, and a number of other foods.



• People with CSID cannot tolerate sucrose, but many can handle foods with 1 gram or less sucrose per 100 grams. There is a supplemental enzyme that helps some CSID patients to digest small amounts of sucrose. CSID involves the digestion of starches and maltose (the sugar found in grains) as well as sucrose. There are various groups of people with CSID--some can't handle starch at all, while others can tolerate various amounts. The tolerance of things like honey can vary, too.



• Some people with problems tolerating various sugars may also have issues with artificial sugar substitutes, sugar alcohols (anything ending in -itol), oligosaccharides (fructo-oligosaccharides [FOS], inulin, chicory, etc.) and polysaccharides (fructans, gums, etc.). Many of those substances are difficult to digest anyway, so they can cause increased discomfort in someone with digestive problems.

Here are a few resources I've found that might be helpful:

Dietary Carbohydrate Consumption. This page explains some of the chemistry behind the different types of sugars and starches, as well as giving some examples of foods which contain each type of saccharide.

Fructose Malabsorption Australia Yahoo! group--these people are very helpful and nice. They have a bunch of information in the "files" section on recommended diets, and can answer questions too. They can give lots of information about fructans and how they affect people with fructose malabsorption.

USDA food database--you can search for a food here, and in many cases it will tell you the amounts of each type of sugar in that food, along with other nutritional information.

Chart of sugar content of various foods (PDF).

CSID information site--this is about sucrose-isomaltose intolerance, but is helpful for general sugar intolerance information as well. They a lot of helpful information about sugar intolerance and also some charts of the sugar and starch content of various foods.

I would not recommend embarking on a diet of trying to exclude sugars without help and advice from a doctor and/or nutritionist or dietician. With the possible exception of lactose (milk sugar) intolerance and maybe trehalose (mushroom sugar) intolerance, these conditions are not easy to self-diagnose and the required diets can be difficult or impossible to follow without becoming nutritionally compromised. You need help from people who know what they are doing.

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[The rest of this post is an update on Baby E's possible sugar intolerance issues.]

We still haven't figured out yet exactly what's going on with Baby E with regards to a possible sugar intolerance of some sort.

Initially our GI specialist (the nurse practitioner) diagnosed Baby E with lactose intolerance. This was based on a postive reducing substances test she had while consuming fruits and small amounts of other sugars, but very little dairy (she'd had a small amount of yogurt one to three days earlier). The GI specialist diagnosed lactose intolerance even though E had no symptoms and a negative reducing substances test when consuming breastmilk and removing fruits and added sugars from her diet.

After we had added and removed dairy products several times, it seemed clear that lactose was not the sugar causing Baby E's issues. So I called the GI specialist to tell her (yet again) that lactose did not seem to be the issue. We felt that fruits and possibly other natural sugar sources were triggering E's symptoms.

At that point the GI specialist told us to try removing "all sugars" from Baby E's diet for several weeks to see if that helped with her malabsorption symptoms, and then reintroduce foods one at a time to try to figure out which sugar was causing the symptoms. But she didn't tell us how strict we needed to be about this or what to feed Baby E instead. Since we had already removed added sugars and knew that Baby E's symptoms were being caused by things like small amounts of whole fruit, the initial recommendation of just taking out things like table sugar and corn syrup (which she wasn't eating anyway) obviously wasn't going to do the trick.

Since essentially everything that grows out of the ground contains sugars of some kind, eliminating all sugars is next to impossible. We could probably eliminate fructose, sucrose and lactose completely by giving Baby E nothing but meat and eggs. But I would never try this without a really compelling reason, very specific instructions and good follow-up from a doctor.

I have called the GI specialist several times to ask exactly what we should feed Baby E, and whether we should try to keep the amounts of various sugars below a certain number of grams per dose (for instance, 2 grams or less of sucrose per 100 grams of food) or whether we actually needed to completely remove all sugars from her diet. I said that if we were going to remove sugars, I would need a list of exactly what to avoid and/or what to feed her for the duration of the trial.

At this point I've left a number of messages over a period of many weeks, and still haven't heard back. Meanwhile Baby E is still having intermittent GI symptoms, but these seem to be mostly mild as long as we limit the quantities of sugars in her diet and avoid corn. Thankfully the extreme watery diarrhea and huge amounts of mucous she was having a few weeks ago has not returned. We're still not sure if there was a sulfite issue, virus or something else causing the extreme symptoms, but I'm happy that she's back to just intermittent diarrhea and mostly mild to moderate discomfort similar to what the rest of the family has.

The GI specialist's nurse did finally tell me, when I happened to catch her with one phone call, that the GI specialist we see (the nurse practitioner) is doing research to try to figure out the answer to my question. She hasn't forgotten about me; she just doesn't know what to tell me.

It's rather frustrating that the GI specialist would recommend making specific dietary modifications but be unable (even weeks or months later) to give guidance or answer questions about how to do that.

Meanwhile, months go by while we make little to no progress in figuring out what is causing the symptoms and why Baby E's reducing substances tests were positive.