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Post by tikitavi on Feb 14, 2012 7:00:08 GMT -5
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Post by tikitavi on Feb 14, 2012 7:35:23 GMT -5
UKBill, I used to make homemade bagels and sometimes I would make celery seed bagels. MMM! Great suggestion. I'd forgotten all about celery seed! It packs a lot of flavor in a very small package.
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esmee
Full Member
gluten, lactose, fructose, histamine, and salicylate intolerant
Posts: 236
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Post by esmee on Feb 14, 2012 14:57:25 GMT -5
Collards have way less fructose/sucrose than kale.
CRON-O-Meter does not break down the sugars, but the total for collards is 0.4 gms (of all sugars) per 100 gm, while for kale it is 1.3 gms (for all sugars) per 100 gm. So, collards have 1/3 as much sugar in them as kale.
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Post by tikitavi on Feb 14, 2012 16:14:05 GMT -5
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esmee
Full Member
gluten, lactose, fructose, histamine, and salicylate intolerant
Posts: 236
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Post by esmee on Feb 14, 2012 17:51:34 GMT -5
I also think it is less sugar if you remove the stems and only eat the leafy part.
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Post by colormist on Feb 20, 2012 9:10:21 GMT -5
Wrote about Wonka candies on Friday. It made me sad.
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Post by tikitavi on Feb 21, 2012 5:36:38 GMT -5
It is a really good post!
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Post by julienc on Feb 21, 2012 9:52:44 GMT -5
I did a little happy dance seeing the picture of Tart and Tinys. Those were the best. Remember Wacky Wafers??? They had a banana flavor one that was sooo yummy.
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Post by colormist on Feb 21, 2012 11:47:52 GMT -5
I looked up Wacky Wafers, but I couldn't remember trying them.  I do love banana flavored dextrose candies--and now I've realized I've forgotten Runts. D: Do the Runts still have Lime, Orange and Banana? |
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Post by julienc on Feb 22, 2012 8:36:03 GMT -5
Do the Runts still have Lime, Orange and Banana? They replaced lime with a green apple (boo, hiss), but they still have orange, grape, banana, strawberry, and a red (red apple?). |
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Post by colormist on Feb 22, 2012 9:40:03 GMT -5
And blue, don't forget awful, awful blue.  EDIT: I did an interview with Tammy over the weekend and updated the blog. Thank you, Tammy, for sharing. I know Regina has a different pallet than us oldbies that got a diagnosis later in life and I thought that was important to share. I think she's actually lucky to be able to eat sweet foods. These stories get me all misty-eyed. I think it's definitely something that people NEED to hear--specifically families and doctors. I know they're not a medical interview or even a professional journalistic interview, but getting all this information in one area is helpful for those wanting to know more. If you have confirmed diagnosis and wouldn't mind getting your story out there (I try to be somewhat vague so you don't get stalkers), I would love to add your story to the blog. Also, let me know if you ever manage to find the blog via some other means (aside from clicking my link here, typing in the url, or using a bookmark). I can't seem to get it to show up in google. :[ fructose-free.tumblr.com |
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esmee
Full Member
gluten, lactose, fructose, histamine, and salicylate intolerant
Posts: 236
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Post by esmee on Feb 22, 2012 12:28:35 GMT -5
Great interview with Tammy. I LOVE these interviews. They show the similarities and the differences which I think is very important. So many people on this forum with HFI do seem to have blood clotting issues (too thick blood) that it is hard to imagine that it is NOT related. I think that by collecting this information in one place, this forum will advance a more comprehensive understanding of this disorder.
It sounds like Regina has needed to continue to live with her mother due to the mental and physical impairment (which may or may not be HFI related). This makes me wonder what would happen to Regina if something happend to Tammy? Would Regina be able to take care of herself and eat a diet that is safe for her? Hopefully Tammy will live a good long life and be here to look after Regina for many years to come, but the thought must come up for her. Hopefully there are other family memebers who understand the issue and would be there to help look after her.
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roman
New Member
Posts: 31
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Post by roman on Feb 22, 2012 15:28:48 GMT -5
esmee, this paper: www.ncbi.nlm.nih.gov/pubmed/20955963, title and abstract: Best Pract Res Clin Gastroenterol. 2010 Oct;24(5):607-18. Inborn errors of carbohydrate metabolism.Mayatepek E, Hoffmann B, Meissner T. Source Department of General Pediatrics, University Children's Hospital, Moorenstrasse 5, 40225 Düsseldorf, Germany. mayatepek@uni-duesseldorf.de Abstract "Glycogen storage diseases (GSD) and inborn errors of galactose and fructose metabolism are the most common representatives of inborn errors of carbohydrate metabolism. In this review the focus is set on the current knowledge about clinical symptoms, diagnosis and treatment. Hepatomegaly and hypoglycaemia are the main findings in liver-affecting GSD like type I, III and IX. Diagnosis is usually made by non invasive investigations, e.g. mutation analysis. In GSD I, a carbohydrate balanced diet with frequent meals and nocturnal continuous tube feeding or addition of uncooked corn starch are the mainstays of treatment to prevent hypoglycaemia. Liver transplantation has been performed in different types of GSD. It should only be considered in high risk patients e.g. with substantial cirrhosis. Many countries have included classical galactosaemia in their newborn screening programs. A lactose-free infant formula can be life-saving in affected neonates whereas a strict fructose-restricted diet is indicated in hereditary fructose intolerance." clearly states that HFI is associated with "coagulation disturbances" and "derranged blood clotting factors", on p. 615. |
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Post by charlie on Feb 22, 2012 15:42:39 GMT -5
That's a great interview and love the photos of Regina, it was also great for Megs to see, she sees me looking through this board and loses interest, but perked up and asked questions about Regina when I said it was another girl like her. (Something to be said for Bills idea of a kids board).
Will post the address on the other board but other than that haven't a clue how to get it onto more searches. Mind you, this board comes up regularly now on searches I do so maybe it is volume of content that brings it up.
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Post by Tammy on Feb 23, 2012 3:20:42 GMT -5
Esmee,
You are right in that Regina still lives with me. She is still and always will be a child physically, mentally, and socially. She thinks she is a child which is actually a good thing because she doesn't know what she "should" be doing at this age. She will tell you that someday, when she is big, she will drive a car like Stevie does. She knows she is 29, but no concept that 29 is not a kid anymore.
Because of this, yes, I often think about what if something would happen to me. Several of my family members, and a couple of my friends are very familiar with her diet. I can even let her stay for the weekend with them. The entire rest of my family knows a little about her diet, and even though they don't know what it is, they know they don't know. I never have to worry about someone giving her something at a party or picnic.
Of course no one knows her like I do, but at some point in the future the plan is my son will become her guardian and take care of her.
I have a cousin that has 4 girls from age 7 - 14. Regina fits in perfectly with them. She spends several weekends with them, and even close to a week once a year (my vacation lol) Even the girls are getting pretty good at knowing what she can and can't eat.
While at home, she knows what is hers. We have a snack cabinet that she can reach and she helps herself. She also has items in the freezer that are hers. The bottom of the refridge has her candy and cold snacks like dip and cheese. She can also reach "our" snacks and cookies, but never does. She understands it will make her sick. I never have to watch her as far as getting anything she shouldn't.
The problem is that she would be too trusting. She can't read, so she would not know if something is HFI safe. If anyone tells her she can have something, she'd eat it, trusting them. We're working on that. She won't take something from other kids anymore, and she'll take something from an adult, but then just hold it until she shows it to me. When she was younger I would pin a note on her at things like wedding receptions because there are too many people there we don't know.
I also printed off most of the recipes on this site and put them in one notebook. Although my close family already know what she can have.
I just hope I take after my grandmother. She's alive and giving all kinds of grief to my aunt at the age of 98.......
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esmee
Full Member
gluten, lactose, fructose, histamine, and salicylate intolerant
Posts: 236
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Post by esmee on Feb 23, 2012 11:54:27 GMT -5
Thank you, Tammy, for that detailed response. It sounds like you have done a remarkable job with Regina. I am glad you hear that you have both immediate and extended family who understand and will be able to step in if necessary. This must bring you some peace of mind.
Does Regina take any vitamin/mineral supplements?
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Post by Tammy on Feb 23, 2012 12:10:24 GMT -5
Regina takes a calcium antacid - Care One brand that we get at Giant supermarkets. She also takes Vitamin C daily. Nature Made which I get at Walmart. This seems to be all she needs as her blood work is always good.
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Post by colormist on Feb 28, 2012 11:26:59 GMT -5
Another couple updates about iced tea and exercise.  |
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Post by charlie on Feb 28, 2012 14:29:46 GMT -5
Love the blog about iced tea, but one bit of advice.......
Just go ahead and spit it out over the counter next time.......... They certainly won't do it again!!!!!!! If Megs and Regina can projectile when given the wrong food in a public place, why can't you!!!!!
OK so you may not feel you can go there again, but your point will have been made!!!
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Post by colormist on Feb 28, 2012 15:39:56 GMT -5
Knowing my luck, it would all end up on the front of my shirt/in my lap/on my spouse.
I hit a panic wall when I realize the drink I've just attempted to guzzle is sweetened. My first reaction is OH CRAP. My second is I DON'T WANT TO BE GROSS OR MAKE A MESS. Third is REVERSE DRINK SO I DON'T GROSS OUT EVERYONE AROUND ME.
Also, this tends to happen a lot while I'm driving, so I don't want to wreck or mess up my car.
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I do love banana flavored dextrose candies--and now I've realized I've forgotten Runts. D:
