Sugar

Well, the GI specialist's nurse finally returned my call after I left several messages over the course of the last 3 weeks.

At first she thought I was asking about allergy issues, which frustrated me because I had already clarified several times that the issues E is having with fruits do NOT seem to be allergy-related and that the allergist can't help us with them. She said that if we suspected a problem with a sugar other than lactose, we should take Baby E off all sugars for a month and then gradually add them back in one at a time to see what she can tolerate. She started listing off things like corn syrup, table sugar, etc. that I needed to remove from E's diet.

I told the nurse that Baby E has been off of all that stuff (especially the corn syrup) already, and that it's pretty obvious that the amount of sugar in fruits, vegetables and probably whole wheat is enough to give her problems. This is a kid who gets sweet-smelling diarrhea from 4 blackberries, not a kid who is having problems from being fed sugar-laced drinks or sweet breakfast cereal. I really wish these people would listen and pay attention to what I've been trying to tell them all these months.

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I asked if we needed to take E completely off all sugars for a month. Fruits, vegetables and starches all contain sugars of some sort. I told the nurse that if we're really going to take her off ALL fructose, sucrose and maltose, including fruits/vegetables/grains, I need someone to give me a list of what we CAN feed E. I'm not about to try to do that with no guidance.

The nurse said she didn't know, and she'd make a note that I had more questions and would have the GI specialist call me. That was several days ago, and I haven't heard back yet.

I'd hate to just indiscrinimately remove all fruits, vegetables and starches from Baby E's diet for that long. Taking something like corn out of her diet isn't going to nutritionally compromise her, but taking out everything with any kind of sucrose or fructose in it certainly will. I think she would essentially be left with nothing but meat and dairy products to eat--not a complete diet by any means, especially considering that breastmilk, butter and yogurt are the only dairy products she really eats.

A number of people have suggested to me that we take E off refined sugars, which is rather humorous because she's really never been on refined sugars in the first place.

Baby E has had very little refined sugar in her lifetime. Mostly it's been lots of whole grains (mainly brown rice), fresh fruits and vegetables, and local additive-free meats. Because of the corn issue she can't have pretty much anything bleached, enriched or refined.

Also, she just has never really liked most sweet things. She'll eat fruit, but anything like cookies or cakes that I've made--even corn-free--she's mostly taken one nibble and refused to eat any more. For the most part she wouldn't touch anything with maple syrup, agave nectar or stevia in it. Anything sweetened (mostly baked goods for special occasions) was made with honey or brown rice syrup. I'd very occasionally make something with a little brown sugar in it, but E usually wouldn't eat it.

She greatly prefers most food unadulterated with sweeteners or other flavorings. She eats things like pancakes, waffles and muffins made with no sweetener and eaten plain with maybe a little butter.

Her "treats" were almost always plain whole fruit. That usually ended up with her being uncomfortable afterwards. So now we usually give her things like potato chips or rice crackers when we want to give her a special treat.

We used to occasionally give her a piece or two of Panda Licorice (made of whole wheat and molasses--about 1 gram of sugar per piece), but we were mostly using that as an incentive to get her to take her medicine when she was taking the Omeprazole months ago. I can't remember the last time we gave her licorice.

We have very occasionally given her one Yummy Earth lollipop (organic, made with unrefined sugar and no artificial colors or flavors--less than 6 grams of sugar) on special occasions. These are usually situations where she is watching other kids eat a lot of special treats that she can't have. I haven't given her any lollipops for a while because she complains of tummyaches after eating them.

Other than that, any sugar in her diet has been mostly in the form of organic fruits and vegetables.

I have given her small amounts of sugar 4 or 5 times in the last month or two, trying to test whether sucrose bothers her or if it's just fructose.

Cake made with whole wheat and brown sugar gave her problems, but I don't know if that was from the wheat, the sugar or both. So I've resorted to feeding her sugar cubes made of pure cane sugar in a brand I know to be corn-free. It feels so strange giving my baby sugar cubes. It's the kind of thing I wouldn't normally do. But it's the only way I know to reliably test whether she can handle sucrose or not.

Sucrose tolerance seems to be the key to differentiating between ordinary fructose malabsorption and the more serious hereditary forms of sugar intolerance. People with fructose malabsorption supposedly should be able to tolerate moderate amounts of sucrose, while people with the other conditions cannot.

I've discovered that 4 grams (1 teaspoon) of sucrose doesn't give her any noticeable symptoms but may make her a bit grumpy, 6-8 grams (1.5 to 2 teaspoons) gives her a tummy ache, and 12 grams (3 teaspoons) is enough to give her mild diarrhea.

When we are trialing sugar, E gets no fruit other than the few tablespoons of additive-free orange juice we use to flavor her thickened water and the teaspoon of black cherry juice she gets with her medicine. We haven't yet figured out how to get her to drink those things without adding juice. This week she's not getting the medicine because we're getting ready to do the corn challenge with the allergist, so it's just the tiny amount of orange juice. I've been trying to get her to drink just plain thickened water, but so far that isn't working very well. Maybe I should try pumping some milk to mix with it instead of the juice.

We also have her off wheat and any vegetables that are high in fructans or other sugars. At the moment she gets no fruit except the juice flavoring her thickened water, and whatever we're trialing that day.

That means that Baby E is basically eating meat, eggs, plain yogurt, rice (cereal/crackers/cooked rice), seaweed (I even found seaweed nodles that don't taste like seaweed), 100% rye sourdough bread (though she doesn't eat much of that), tapioca (as bread and to thicken her beverages), small amounts of rice or soy milk (in cooking or on her rice cereal), potatoes and low-sugar vegetables (no tomatoes, onions, etc). She's still nursing a lot, too.

If she's not already having GI symptoms that day and has fully recovered from the last trial, she also gets a small amount of whatever we're trialing--which might be a carefully measured amount of a particular fruit, or something like that.

Her symptoms usually begin within a few minutes or an hour of consuming the food, so I don't think we're looking at delayed allergies. She doesn't seem to have other symptoms or a clinical picture pointing to candida either (although she certainly could end up with a Candida overgrowth as a secondary issue, I'm guessing, since she doesn't seem to digest sugars).

We have to remember that she has had stool tests positive for reducing substances. I'm no expert, but my understanding is that the positive reducing substances test means that she is not digesting a sugar. I don't think that test result could be caused by allergies or candida--I think it has to be a sugar malabsorption issue.

Some type of sugar malabsorption certainly seems to be the best fit for the data so far.