Health problems HFI Question

[anastazya]

I get hypoglycemic if I go longer then 4 hours without eating.

[anastazya]

I found out last night (and this morning) I don't do well with glucose either. It gives me a horrible stomach ache (almost threw up) and some IBS as well. So I have given up on all sugars. Will stay with my chicken and rice.

So glad I'm heading out to Mayo tonight!

Will report back what they find.

BTW- my name is Sara...but since that is always taken, I go with Anastazya. : )

[meaniejean]

Good luck at your appointment. I just wanted to let you know that I have a very similar history. Hashimotos in early 20s, food issues, chemical sensitivities, family history of gout, joint pains, neuropathy.

My son has the same stuff and he is being treated for Familial Mediterranean Fever with colchicine. Not sure he really has FMF, but the colchicine is working.

We are pretty sure we are dealing with a uric acid disorder, but not sure which one. I was diagnosed with fdpase deficiency, but I am not confident of their findings since they botched my biopsy.

Best to you and let me know what you find out!
-Sandra

[anastazya]

Can you please explain what fapase deficiency is?

Thanks. So far the Allergist I saw believes that it's not all oral allergy syndrome. So he did lots of blood work and a chest x-ray. Next I get to take a carbohydrate breath test...twice. Then I get to see a Dermatologist (I have very sensitive skin...metal sensitivities, rash when I get out of salt water, sensitive to adhesives, and dry skin) and a Gastroenterology. Then I get to see the Allergist again. I might even see an Endocrinologist at a later date. So a pretty good start to try to figure all this out.

As soon as I know anything, I will post it! : )

[anastazya]

BTW- My Grandmother has neuropathy as well. But she's the only one we know of.

[hfimomof3]

Anastazya, I am so sorry you are dealing with this. It sounds very complicated. I wonder if you are dealing with having a couple of separate conditions simultaneously: HFI (possibly with neuropathy, gout, etc, from damage sustained due to long-term low level fructose intake) and eosinophilic esophagitis, or something. Have you ever been to www.kidswithfoodallergies.org? That sounds like a website that might have helpful information for you (even though you are not a kid). They deal with issues such as elemental diets, tube feeding, extreme allergies, etc.

[jen]

I am a new member and this message board has been revelation. I already knew a long time ago that I had fructose intolerance but since I moved over here, from the Netherlands to the USA, I started to have more physical problems. I think I have to take a closer look at my diet.

I have been reading about the do’s and don’ts on what to eat. But isn’t that different for everybody? Some one mentioned a coke. I never drank a coke or any other soda’s in my life. The only soda I drink is Sparkling Mineral Water. And Kiwis. Try that once, had to flush it away with water because of the taste, I guess that was a warning sign, and was sick for 3 days.

What still bugs me that it is hard to explain to people what I have, why I can’t eat sweets, fruits etc. When I was a child, people thought I was weird or spoiled. It is hard to go to a new restaurant and ask the waiter all the necessary questions about the menu. Or going to a diner party and have to ask the host up front what s for diner. Anybody else have these problems?

[jen]

15 minutes later... Reading the message board.

What I have been reading is, that not all food products contain fructose, there some food products that just are disliked or give someone a bad feeling but has nothing to do with HFI. For instance the subject 'Do eggs contain fructose'. No they don’t. Just because it makes you sick or whatever doesn't mean it has to do with HFI.
There is food that I can eat but I just don’t like it. Knowing the difference is important.

[meaniejean]

Eggs, particularly egg yolks, do contain fructose. Not a ton, but if you ate enough you could have trouble depending upon your sensitivity and other food choices for the day.

Also, for fdpase deficiency, the high fat content can be a problem. It certainly is for us. Things got much better when we switched to egg whites.

[meaniejean]

Oh - someone wanted to know about fdpase deficiency - it is fructose 1,6 biphosphatase deficiency. It causes fasting hypoglycemia and metabolic acidosis. The treatment is frequent carbohydrate-rich meals. Fructose should be limited but does not need to be as strict as HFI. Liver swelling can occur, but not usually liver damage. Infection, fasting, high fat intake and large amount of fructose (especially after fasting) can all cause symptoms. It is diagnosed via liver biopsy.

[anastazya]

Thank you @hfimomof3 and meaniejean.

Hfimomof3....I pulled up the website and will be looking it over. Thank you for the recomandation!

Meaniejean...TThank you for the info. I've seen it talked about on here, but I haven't been able to find a good description of it.

Jen...someone posted a month ago...think it was Evelyn...a full nutritional print up of eggs, and yes fructose was on there. The link is on one of the boards. Sorry I can't give a better description then that.

All the foods I lost (Yes, I lost foods in July 2008.) are related to fructose. I am finding I can have no sugar other then glucose and galactose. I don't even handle glucose well when it's alone.

I do want to say that you are right. In many people not all food issues are HFI related. The only one I find that I lost that doesn't seem to be linked to HFI is my inability to tolerate yeast.

[jen]

@ anastazya: That is so weird about the eggs. I asked a dietitian about eggs and she said there wasn't any fructose in them. Well good to know. I have to ask her again and tell her what I read on here.

[jen]

anastazya: Well I did some research and you were right. 1 egg (17 gr) contains 0.0119gr of fructose comparing to 1 ounce (28 gr) of coca cola which contains 0.902gr of fructose. I guess the question is how much fructose can someone with HFI handle without getting sick.

[anastazya]

jen - Glad to hear that you can help a dietitian out. I talked to one and she said she couldn't help me. I wish more people were knowledgeable about FM and HFI. I hope to be getting my Master's in Nutrition and will focus on HFI as my thesis. Too little info for the professionals....it's too bad.

[hfimomof3]

Anastazya, that's great! Maybe you could design an info sheet for nutritionists and doctors so if they have a patient with HFI they can just go onto the web and download your sheet. Don't forget pregnancy and breastfeeding!

[jen]

Wow that is great. It so weird that so few professionals know about HFI. It is not something that developed overnight.

[hfimomof3]

I guess it is so rare. I have not met a physician (ok actually my child's allergist was interested because she worked on it for research in med school) who was interested in knowing more about it. Usually they say, "Huh! Ok, let's move on."

[julienc]

Yeah, no big slam on dietitians, but honestly none of them seem to get it. I met with one at Duke after my diagnosis, and she gave me the food print outs from Dr. Tolan's website and basically said, "Sorry, you know more about this than me. I just can't help you." Huge waste of time.

As for the egg thing, I tolerate them fine. I don't sit and eat 5 of them at once, but usually two per serving, along with other things like grits, toast, etc.

Good luck. I'm glad so many people are finding this board.

And Jenn - I can definitely relate about the restaurant thing. Chain restaurants are my friend. Once I find a safe meal at a place, I'll just keep going back there. It's too exhausting to pour over a menu, drill the waiter, manipulate various meals to try to eliminate the fructose, etc.

[hfimomof3]

Yeah, I am the same way. If the chicken korma works for me at restaurant A, then that's the only thing I'll ever eat for take out for the next 5 years until restaurant A goes out of business. I found it very limiting for dating. Guys who were really into Chinese or Japanese food, I just couldn't be their girlfriend because they found it so irritating that I couldn't eat there, or that I would just eat plain rice. Mexican food was ok, sometimes, but there is way too much tomato. That is why I eventually married an Italian. I can eat italian food!

It is funny, because now that I'm an allergy mom, I have met other allergy moms who say they find it very irritating that our culture is so centered upon food, because it makes it awkward for their allergic child who cannot participate. I can understand that, but I also think it is just our nature to be invested in food. Taste is one of the five senses and it contributes to our happiness. We are unlucky to be unable to enjoy some of that because of our genetic makeup, but I can understand why other people build social events around food.

[anastazya]

Hfimomof3 that's the plan. I am looking up all the foods for me. Since I can tolerate no amount of fructose, sucrose, or sorbitol (can't even have cinnamon) I save all the info. I will put it onto a spread sheet, then people can print it off.

I will go from lowest amount to highest amount. That way, it's not a crap shoot. And it gives a starting point. If you can tolerate the lowest amount, move up from there. If not, stay with what you are eating.

I already have great recipes in my head for homemade pasta with a cream sauce spiced with allspice and pumpkin seed butter sandwiches made from homemade bread. (All the bread/pasta will be made gluten free, sugar free, and lactose free). I am becoming a creative cook! : )