And Celiac too.....

[anastazya]

So I had Quinoa today for dinner. Everything I ate was fructose free and lactose free...yet I am now reacting to something. It's similar to a fructose reaction, but not as severe and nothing like the lactose reaction.

I have a stomach, I don't feel really good, a horrible headache, depressed, and nauseous.

My family has Celiac Sprue (my Grandmother, my Uncle ...her son...and my cousin...his daughter. Is it possible I have Celiac too?

Mayo tested me with 3 different blood tests for it, so I guess I'll find out in 2 weeks, but was looking for your unofficial opinion.

Thanks.....

[evelyn]

Doesn't quinoa have fructose in it?
Do you get canker sores in your mouth?
Have you ever had a TTG blood test done for Celiac?
You could get gene tested for Celiac as well if your blood tests come back negative and you can always do a endoscopy or testing through enterolab.
Even if your celiac blood, gene and endoscopy testing are negative you can still have an autoimmune reaction to gluten.

The best way to know is to keep a food diary for a couple weeks on gluten and then off gluten for a couple weeks.
I think our instincts are pretty good and it seems that yours say it's gluten so it probably is.

[anastazya]

To answer your questions in order:
No...I look up everything to make sure there is no fructose in it before it goes into my body.
Not now....as a child I used to get canker sores all the time.
No...but Mayo just ran 3 gluten tests on me....1.Tissue Transglutaminase AB S (IGA)
2.Tissue Transglutaminase (IGG) 3.Celiac Associated HLA
Rush did an endoscopy 2 years ago and didn't find anything. But In July of 08, I lost all foods but white rice and chicken and they did the test on me in Nov or Dec. so would that be enough time to have everything fix itself? I also have a partial malrotation of my small intestine (it's all on the left side of my body and looks like an accordion.) Could something have been missed?

I do not eat anything with gluten in it...I don't want anything with gluten in it, so I'm not sure what that tells you. All I can say is that my reaction was similar to my fructose reaction but not nearly as debilitating...except my headache was much worse, and I'm a bit depressed today.

Every time I think I've figured things out about food, my body throws me a curve ball....gggrrrrrr

[anastazya]

I found out that there is fructose in the quinoa flour...gggrrrrrrrr....

Will still stay on gluten free diet until I hear back about my tests.

[evelyn]

What guide do you use to look up fructose content?
I only know about this one: nutritiondata.self.com/facts/spices-and-herbs/9743/2

[charlie]

fructose malabsorbtion has a problem with fructans which are a fructose polymer found in things like wheat, onion, garlic, artichokes etc. it may be that this is what you are reacting to as I belive quinoa is a wheat product

[anastazya]

It very well could be. The symptoms were not as severe, but close...except for the horrible headache I got. Either way, I'll stay on a gluten free diet too. It works for me and I am learning to just not rock the boat when it come to food.

Thanks for all your help. : )

[ukbill]

Quinoa is not good for me too.

I think it (Fructose) could be in the germ of the grain, it is in all other grains so why not? Also the fibre of the grain might be more digestible than usual which will cause problems lower down in the digestive tract.. (bad gut feeling)

Best not panic about possible other conditions just avoid quinoa in the future.

I get a similar reaction to Soy oil, its like a Fructose reaction.. but missing part if you get my meaning.. also very dry wine (the only type I can tolerate) will give me a very bad head in seconds of tasting more than a teaspoon full. And there should be no Fructose in that as its supposed to have all been converted into alcohol.

That's what this forum is good for exchanging experiences and reactions to foods particularly for people who care for HFI people, as not being HFI puts them at a major disadvantage.

Just ask my mum, or anybody who has tried to cook for me.. its rare for Anyone to get it even close to being right, no matter how much they read and try, they usually slip up somewhere.

That's the biggest disadvantage to being HFI, I find the embarrassment when I cannot eat something someone has gone to a lot of trouble cooking for me, or a meal in a restaurant arriving with a sweet sauce all over it (and no warning on the menu).

When Younger I would just eat it and hope to get away from everyone before I became too ill.

If your liver is not on top form you can show all sorts of odd conditions which are just a result of your liver not coping with the amount of Fructose its trying to deal with and loosing the plot for a time.

Take care

[anastazya]

Thank you ukbill.

Mayo found out I have the Celiac gene, but since I was on a Gluten Free diet for 2 years, they can't test me for it. As long as I stay on the diet, they won't test me. And to be truly honest, I don't want to eat anything with gluten anyway. Even though I was on a Gluten free diet for so long, and I didn't get much better. But being on a strict Fructose free diet...I feel much better! And it only took a couple of weeks for it to happen. I have allergy meds that I have been on for 2 years as well. Only got off of them for 1 month last year. After only a couple of weeks of eating Fructose free, I have been able to be off of them for 2 months now...and counting.

Will be talking with my Allergist Monday (since no other Dr will truly listen to me) and see if he can test for HFI.

[ukbill]

Congratulations!

Yes it seems to be the case if your liver is taking such a hammering from trying to deal with fructose all the time it eventually stops being able to deal with other things and so you start with lots of other apparent illnesses.

After my "challenge" test in hospital to prove I had HFI (they slipped up and gave me 10x the correct dose of Fructose and sucrose!)

It took me 6 to 7 months to feel full fit again so I suspect you will continue to feel better and better for some time yet!

I have a big grin just thinking about the improvement in your life!

Take care and keep smiling

[anastazya]

Ukbill......Thanks!