need guidance for possible HFI for my son from DNA test....???

[annemarie]

Hi,

I am so glad to have found this site. My son is 9 and was diagnosed on the autistic spectrum at age 3.
He improved greatly with a gluten, casein and egg free diet. He is anaphylactic to eggs and has tested positive for sensitivity to dairy. I have tried so many different diets trying to help him. Many were grain free with lots of meat and veggies. I never understood why he did poorly when I tried healthier diets. I have been wracking my brain for 7 years. I have been going back and forth trying to figure him out because it just didn't make any sense to me. He has always had aversions to anything sweet and I now realize he vomits after consuming the a certain of fruits, like a whole avocado. He also vomited after taking motrin when he was younger. A few years ago, we went to Europe for 3 weeks and we didn't have access to any veggies he liked. So he pretty much and red potatoes and meat. When we got home he returned to school and his teachers noticed that he was greatly improved. His focus, attention and learning improved and his body didn't have any tics ( they call it stims in the autism world). And then after a few months he declined. His tics returned and his focused did too. Again, I couldn't understand this ( I included veggies) . A roller coaster ride that just didn't confused me. We started seeing a functional medicine doctor. She requested 23 and me DNA testing. She also noted out of range elevations in his liver. We just received reports from 23 and me. My husband and I both have a HFI variant. My son has 2.(rs1800546 and i5012664)
I know this is not a diagnosis but I have started a fructose free diet anyway. I am confused and I don't know how to proceed. Does this sound like HFI?
The doctor suggests seeing a geneticist because he might have HFI. And she feels if he does, then what is the severity. She feels that it's a rigid diet ( especially with his other restrictions) so if it's less severe perhaps he can have some veggies. Providing my son with this diet doesn't bother, it's a blessing to finally possibly understand him better so I can help him. He is verbal but can't express well how things he eats affect him. I live in NYC, does anyone know what type of geneticist I need? And is brown rice okay? He likes rice cakes and crackers and I can't find any with white rice. Also, are some white potatoes ok for him right now.

thank you so much for this forum...

[colormist]

Definitely get him tested properly through a geneticist. If he does have HFI, it needs to be on his medical record. There are so many medicines in this world that have added sugars and he could end up in a situation where someone gives him an IV with an unsafe sugar in it (sucrose, sorbitol, etc).

There are no "severities" of HFI. Either you have the disease or you don't. Either your liver can process fructose or it can't. Either you can have fructose or it will poison you. He can not have veggies. All vegetables have fructose. Any fructose that a HFIer eats will damage their liver.

Some of us have a carefully managed diet and eat a single serving of vegetables every few days--more than that and we will get sick.

There is a geneticist in Boston that is amazing and should be able to help you: Doctor Tolan. He's kind of the HFI expert. If you can't see him, you might be able to find a pediatrician that has dealt with the condition before in your network. My doctor in WV did manage to find a doctor in her office that has encountered HFI a few times before. My geneticist in Michigan also had a colleague in his department that had encountered the condition before. Since you are in NY, chances are that you'll be able to easily find a doctor that has experience with the condition.

Brown rice is not okay. No whole grains are okay. You need refined grains. Whole wheat and brown rice have fructose.

White potatoes are okay. Stay away from new potatoes, red potatoes, yams, sweet potatoes, and probably yellow too. Stick to those big white baking potatoes.

I'm not sure if you've come across my HFI Pinterest board, but it might be helpful: www.pinterest.com/colormist/fructose-free-diet/
(please be sure to read my notes)

[anne marie]

Dec 28, 2015 10:58:43 GMT -5 colormist said:

Definitely get him tested properly through a geneticist. If he does have HFI, it needs to be on his medical record. There are so many medicines in this world that have added sugars and he could end up in a situation where someone gives him an IV with an unsafe sugar in it (sucrose, sorbitol, etc).

There are no "severities" of HFI. Either you have the disease or you don't. Either your liver can process fructose or it can't. Either you can have fructose or it will poison you. He can not have veggies. All vegetables have fructose. Any fructose that a HFIer eats will damage their liver.

Some of us have a carefully managed diet and eat a single serving of vegetables every few days--more than that and we will get sick.

There is a geneticist in Boston that is amazing and should be able to help you: Doctor Tolan. He's kind of the HFI expert. If you can't see him, you might be able to find a pediatrician that has dealt with the condition before in your network. My doctor in WV did manage to find a doctor in her office that has encountered HFI a few times before. My geneticist in Michigan also had a colleague in his department that had encountered the condition before. Since you are in NY, chances are that you'll be able to easily find a doctor that has experience with the condition.

Brown rice is not okay. No whole grains are okay. You need refined grains. Whole wheat and brown rice have fructose.

White potatoes are okay. Stay away from new potatoes, red potatoes, yams, sweet potatoes, and probably yellow too. Stick to those big white baking potatoes.

I'm not sure if you've come across my HFI Pinterest board, but it might be helpful:

(please be sure to read my notes)

[anne marie]

Thank you so much for your reply. I have set up an appt. with a clinical geneticist for next month. I asked the genetic counselor there, if they would be able to do non invasive further testing diagnose HFI if needed. They mentioned that probably no further testing would be needed based on his DNA results. Instead they are going to do a history and analyze the results. Does that sound right? I didn't think a 23 and me saliva test would be enough. I figured he would need a blood test too. But maybe I am wrong.
In the meantime, he is on the fructose free diet. With all his restrictions, there's not much variety in food for him. He is egg free, gluten free and dairy free. I have found a brand of crackers that he likes. They are made by Nabisco and they are called Rice Thins ( white rice flour, high oleic safflower and salt). Do you think it's HFI safe?

As of know, he is eating white rice ( abborio or basmati),white rice crackers, russet potatoes and meat, poultry and seafood. We use olive oil to cook. He is eating a lot of meat, which concerns me. Is there anything else I can add? Is quinoa or millet okay?
I know potatoes are okay. Would giving potatoes once a day be too much to okay?

[colormist]

I do okay with a serving of potatoes a day (usually in the form of potato chips!). Potatoes are high in potassium. Some form of potatoes have fructose in them, though, so keep an eye on his health while he's eating them to make sure they're okay for him.

Is your son diagnosed with celiac's disease? I am just curious about the gluten avoidance. It would open up his diet significantly if he could have wheat. Oatmeal is also pretty yummy with cinnamon (no sweeteners). Not sure how it would taste with water, though.

Is there a non-dairy butter? Cream of rice is pretty yummy with butter, as are grits.

I'm not sure about quinoa or millet. Maybe some other members can answer that question. :\

[Anne Marie]

Thank you for the information! Mark is not diagnosed with celiac. He did have positive IGG Gliadin antibodies from a lab test years ago. That was probably due to his leaky gut issues. I would like to try wheat again at some point in the future to see if he can handle it.

In the meantime, I am looking for a multivitamin for him that is dairy free and HFI friendly . Any suggestions ?

[colormist]

I'm not sure about dairy, but Nature Made vitamins (the ones that aren't gummmies or flavored) are usually fructose-free. They're pretty common in most stores.

[Anne Marie]

Inositol - does anyone know if it's okay for HFIers.

[colormist]

I didn't see it listed on the BU Sugar chart and I'm not seeing a definite answer on the wikipedia page (https://en.wikipedia.org/wiki/Inositol).

It is a sugar. As to whether or not it is safe, I'm uncertain.

[Anne Marie]

I noticed potato chips are fried in various oils. Are any of the following safe: safflower, cottonseed, corn
Or sunflower ? What chips brand do u eat ?
Thanks for the help!

[colormist]

Currently stocked up on Conn's Potato Chips, but those are only available in Ohio. I also like Lays, Ruffles and Cape Cod. Pringles are not safe.

I'm uncertain about the oils you listed. I've cooked with vegetable, peanut, olive, and canola/rapeseed oil before without noticing any issues.

I have come across plain potato chips before that were seasoned with sugar, so (as always) be sure to read the ingredients!