Semolina Pasta

[antonia]

Is wheat semolina pasta safe? I was under the impression this was a safe HFI food but upon reading labels it has a lot more sugar than I thought! Most say 2 grams sugar per 56g serving, I even saw one with 3g. Does not seem to matter the quality or region of manufacture either, even the expensive, imported brands are the same.

I could only find data on the Finnish Food site. It lists only 0.4g sugar per 100g. 

My daughter has been doing okay with homemade wheat foods (made using red, hard wheat flour) so I thought I would try some wheat pasta, but maybe I need to make pasta from scratch too. She's doing so well, I don't want to mess it up. 

[heatherp]

I don't necessarily feel qualified to say it is safe, as my son is the HFIer and, well, who knows what he feels since he is young. But he eats a lot of semolina pasta. At 2 and a half, he is in the midst of that "for the next month I want only these three foods and that's that" moment in life, and, well, pasta is currently one of those foods. I mean, he'd likely be dead if it weren't a safe food. He lives off if it. I will think about the sugars question now. I have some semolina flour in my kitchen so I will look at it and post that food label tomorrow.

[antonia]

Thank you Heather. Well, knowing how little and sensitive Wyatt is, that certainly makes me feel better in trying it. I guess the quantity of sugar is not nearly as importantly the as the type of sugar. The quantity in the pasta though is similar to potato and Palmera has been doing considerable better since we removed potato from her diet. I guess that's why it made me so nervous.

In regards to the picky eating, Palmera has just started to be picky about her food, and I've decided that's a good thing. At first it kind of freaked me out because she's always been so hungry, she would eat pretty much anything I put in front of her. I feel like for the first time ever we are not chasing blood sugar anymore, she can go much longer between meals before getting hungry and then be selective about what she will eat to boot!

[fred]

Hi Antonia

I would suggest you use "http://www://nutrition.data.self.com Nutrition Data website when you need the above kind of info. The amount of sugar that is safe depends on the persons tolerance. My tolerance for fructose or sucrose is only 100mg per day and I am 75 years old. My tolerance was tested when I was in my twenties.

Fred

[antonia]

Thank you Fred. That is amazing that you were able to get your tolerance tested. I'm not sure how that is done but would imagine it's not an easy process.

I looked at the nutrition.data.self site and found spaghetti listed. Compared raw verses cooked and although not able to make direct comparison (not sure what a said amount raw equates to when cooked) I can see how sugar is certainly less by weight upon cooking. Of course you are just adding water weight, diluting, but wonder if some sugar is also drained off in the cooking water? But, my goodness, 100mg per day is not very much. A cup of cooked pasta has more than that. Do you eat semolina pasta? And I wonder how accurate that data can be. Can any of these data bases reach the level of accuracy needed for HFI?

When I first started a HFI diet with my daughter, I thought for sure she was not as sensitive to fructose as many HFIers seem to be. How could we have gotten to age 5 on only a low fructose diet (assuming she had DFI, not HFI) without more serious complications if she was that sensitive? But the more fructose we cut out the more sensitive she has become, or the better her body has become at detecting it, I guess. It's a mystery.

[colormist]

Antonia,
As regards to the sensitivity issue, at the age of 25, I knew that eating fruit made me nauseated and I would avoid cookies, cakes, and other sweet things. Event at that age, I would still eat stuff that would cause me to be seriously ill nowadays and not even feel a thing.

I think, maybe before diagnosis or discovery, we were sick all the time. Like constantly nauseated to the point that we didn't even notice we were sick? Then, once you go completely off of fructose, you realize what "feeling healthy" actually feels like. Of course, it makes us more susceptible to smaller amounts of fructose because we're not sick all the time and actually notice it when we don't feel good. Before diagnosis we would actively avoid things that tasted really sweet (like cookies and cakes), but still try to eat other things because we thought they were good for us or because we didn't notice them making us ill.

Not sure if this makes sense at all. But yes, sensitivity to fructose increases as the fructose is omitted from the diet. The fructose is harming the HFIer's body regardless, but maybe they don't notice it because they have always been ill and always felt ill, so feeling ill is normal. It's those days where they don't feel ill at all (because they completely avoid fructose) where an HFIer comes to realize what feeling normal and healthy actually feels like.

[antonia]

Yes, Colormist, that does make sense. But before you were diagnosed how much of those fructose containing foods did you eat? Did you ever eat sweets? Did you eat them as a child and do you remember how much you were able to tolerate before making yourself really sick?

Palmera did show aversion to fruits, vegetables and sweets as an infant and young toddler. I remember trying to give sweets, usually at a restaurant, like pancakes with syrup, ice cream or apple crisp, and she would shudder like I was feeding her a lemon or something. And I remember trying to tell people that she would not eat sweets and no one really believed me, their response would be "Oh, sure, RIGHT". So I just didn't talk about it. I think they thought I was some kind of health nut or something and didn't want to give my baby junk food. But eventually she grew to like them if they weren't too sweet, like tart berries, starchy, lightly sweetened desserts, even bananas that were not too ripe. But I always kept servings really small and never gave them to her alone, only with a meal. Even though it didn't make sense, on some subconscious level I had figured that out. But I think back on that and just wonder how that could be. Seems like most with HFI would get much more sick under those circumstances.

[antonia]

Yes, Colormist, that does make sense. But before you were diagnosed how much of those fructose containing foods did you eat? Did you ever eat sweets? Did you eat them as a child and do you remember how much you were able to tolerate before making yourself really sick?

Palmera did show aversion to fruits, vegetables and sweets as an infant and young toddler. I remember trying to give sweets, usually at a restaurant, like pancakes with syrup, ice cream or apple crisp, and she would shudder like I was feeding her a lemon or something. And I remember trying to tell people that she would not eat sweets and no one really believed me, their response would be "Oh, sure, RIGHT". So I just didn't talk about it. I think they thought I was some kind of health nut or something and didn't want to give my baby junk food. But eventually she grew to like them if they weren't too sweet, like tart berries, starchy, lightly sweetened desserts, even bananas that were not too ripe. But I always kept servings really small and never gave them to her alone, only with a meal. Even though it didn't make sense, on some subconscious level I had figured that out. But I think back on that and just wonder how that could be. Seems like most with HFI would get much more sick under those circumstances.

[colormist]

Dec 5, 2015 19:30:45 GMT -5 antonia said:

Yes, Colormist, that does make sense. But before you were diagnosed how much of those fructose containing foods did you eat? Did you ever eat sweets? Did you eat them as a child and do you remember how much you were able to tolerate before making yourself really sick?

I would get really sick if I ate half a cookie or a bite of a candy bar. I refused cake, pies, and all dessert sweets. I opted for pancakes without syrup. I used to eat berries (strawberries, raspberries, blackberries) and unripe apples all the time and I could eat a lot before I noticed I felt ill.

I also regularly ate bread (all kinds), sweetened sausage, sugar-cured bacon, lunch meat, pizza and occasionally blueberry yogurt. I would take free glazed donuts and pick off the outside of the donut so I could eat the less-sweet insides. I had just begun to start to integrate tomatoes into my diet (slices on sandwiches) when I found my diagnosis.

Just thinking about all that food I ate makes my stomach roll. I'm not sure how my liver looked in those days, but it couldn't be pretty.

[123oregongal]

I was just diagnosed last week (via genetic testing)with HFI. I am 38 yrs old, and have not been in to see a healthcare professional about this yet. But I have noticed that I am constantly nauseated, and I do have abdominal pain frequently throughout the day (near where my liver is). I have realized that this has been "my normal" for as long as I can remember. I feel like I have "found my people" through this forum seeing other people describe my odd eating habits (sweet tarts, eating the insides of donuts, unripe apples and berries, lunch meat, bread). On one hand, it has been very validating to know that I have not been making up these symptoms, as I have often felt that these are all in my head. On the other hand, I am mourning the foods that I am realizing I will have to give up. I love eating in restaurants, having a good beer, eating gourmet savory treats. I am really afraid that I have really damaged my liver or kidneys, now that I am aware and realize that much of my abdominal pain is centered around these areas (aside from the nearly constant nausea). I am waiting for a call back from metabolic clinic to set up an appointment. I am very encouraged by all of the members here who have successfully navigated through these dietary changes!

[colormist]

123oregongal,
I also recently had abdominal pain (really quite horridly painful--my usual response was laying on the bathroom floor writhing in pain and screaming/crying) and it ended up that I had to have my gallbladder removed. It was not working at all and very close to popping. I chalk this up to the sheer amount of cheese I eat. Cheese is my one constant companion. The pain went away completely when I ate fat-free foods (which are few and far between for people with HFI).

So, yeah, get that pain checked out ASAP.

The good news is that you can still eat out at restaurants (you just have to be more explicit with your order) but I would hold off on alcohol for a while--at least until you get your liver pains checked out. For people with HFI, both alcohol and fructose are bad for your liver, so you want to baby that live like your life depends on it (because it does). The good news is that livers regenerate like starfish (my doctor's exact words), so after a long while off of fructose, you'll probably be able to start drinking German beers again.

In the meantime, you need to get a grip on your diet. Let us know if you need any help or guidance!

[antonia]

I do wish we could just take you along on our doc appts Colormist

Oh boy I just get so tired. So very tired.

[colormist]

Doctors can be trying. They have years of education telling them what's best and then you have years or experience knowing what's best for your daughter. With my surgery, it was exhausting telling the same story over and over and over again to make sure every nurse, doctor, and practitioner knew that I could not have anything but glucose as a sugar in my IV or meds. Even then, I have to stop them as they gave me a med "what is in this drug? Is there a sweetener?" and then go through the whole story again.

So very exhausting. I want to take a nap just thinking about it.

It'll be nice when Palmera is a little bit older and you will have a teammate to help fortify the defenses against fructose.

[antonia]

Colormist, prior to diagnosis when you were eating fruit and such did you ever get your liver enzymes tested, and if so, were they elevated?

Palmera has only had hers tested twice now and both times they've been slightly elevated. The first time was before going fructose free, eating very low fructose by normal standards but not by HFI standards, similar to what you describe before your diagnosis. This test was done a day and a half after being treated for hypoglycemia though with IV dextrose and several days before she was relatively fructose free due to illness and not eating much. So I don't know, if she had HFI should they still have been elevated?

She had hers tested again this last Thursday (went hypo in fighting suspected stomach bug, landed in ER). Again, slightly elevated, but this time she is fructose free.

[colormist]

I never have had my liver enzymes tested as a child (that I know of). I was raised in a rather poor family with little-to-no healthcare insurance, so we only went to the hospital in the case of extreme emergencies. By the time I discovered my diagnosis, I had already learned what foods were not safe and stopped eating fruits.

The one thing I have noticed is that it takes a long time for fructose to leave the body completely. I find myself experiencing hypoglycemia up to a week (or more) after accidental fructose ingestion. If I keep eating food every four hours, I don't notice the hypoglycemia, but if I fast or exercise, it comes on fast and heavy.

We're still not certain how the fructose is flushed out of the body (since it doesn't go through the intestines, and assuming one hasn't vomited the fructose back up) and we have no idea how long it would take the kidneys to flush it out of the liver completely.

My liver levels were extremely elevated one day and two days after eating sugar (funyuns--probably about 1-2 grams of sugar) when I had my recent ER and subsequent doctor visit. But having the same test performed after being on a very strict diet for two weeks, my levels were back down into normal, healthy range. My doctor looked at my ER liver level results and looked surprised that I was standing upright and not on my deathbed. She said I looked at acted perfectly healthy, but my test results that day showed something completely different.

So, just making an assumption here:
Day 1: Eat 1 gram of sugar - extremely elevated liver levels, feeling queasy
Day 2: Sick enough to go to the ER - extremely elevated liver levels, kidneys hurt, hypoglycemic
Day 3: Feeling better, but still significantly hypoglycemic - Very elevated liver levels
Day 4: Feeling fine, still hypoglycemic - Elevated liver levels
Day 5: still hypoglycemic if fasting or exercising - Slightly elevated liver levels

Not sure where this would drop off and be non-hypoglycemic. I'm assuming (given that youtube video of what happens in the liver when a HFIer eats fructose) that the presence of hypoglycemia means the liver levels will be elevated as there is fructose in the liver.

The only time I've ever been completely fructose free was when I was eating nothing but white rice, skim milk, and chicken breast for a month. At that point my liver levels were within a normal range and I was hating food with a passion.