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How Long Before You Figured It Out?


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13 replies to this topic

#1 Twister2

 
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Posted 03 December 2004 - 06:56 AM

HI all! I have been relatively gluten free for about 2 weeks now, but I still feel like am in the dark about being "totally" gluten free. How long did it take for you to get the gluten worked out in your diets? It seems like so many Celics sometimes disagree on some products that are "safe".

Cheers!

Twister2
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Antibody positive, diagnosed October 2004.
Mother and two sisters with Celiacs also
Edmond, Oklahoma

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#2 haans42

 
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Posted 03 December 2004 - 09:14 AM

Hi,

Wow, I think it takes years to get this completely figured out. There is gluten in lots of foods you would not expect. Some medicines and vitamins use starch as a binder, this starch may or may not be gluten-free. Carmel color may be made from wheat, the list goes on and on. Cereal with malt flavoring is not gluten-free. Many soy sauces are made with wheat. Basically if it is a processed food and is not labeled as gluten-free read the ingredients very very carefully.

Haans
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#3 FreyaUSA

 
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Posted 03 December 2004 - 11:34 AM

Eight months gluten-free and this entire last week I've been symptomatic! No idea what I've gotten in to, maybe it's something that has changed its ingredient supplier recently. So, eight months apparently is not long enough :unsure:
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#4 pixiegirl

 
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Posted 03 December 2004 - 01:58 PM

Well I'm about 8 weeks trying to gluten-free and I was doing well until Thanksgiving, but I think, generally.... I have a good idea of what is what. I'd say if it wasn't for reading this list every day I'd still be so far in the dark.... I've really gotten a good handle on how wide spread gluten is from all the posts here.

I've also come to realize that people who have been gluten-free for years sometimes can get glutened accidently. So I'm just going to do the best I can. I've copied all those big lists and am making a sort of Master list for myself.

Susan
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#5 darlindeb25

 
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Posted 03 December 2004 - 02:16 PM

:( sorry twister---i have been at this for over 3 years--3 yrs 4 months, to be exact and i still make mistakes--manufacturers change ingredients without telling us-- :rolleyes: what are they thinking--anyways, sometimes we become to trusting of a product and may not look at the ingredients for a while and bam :angry: they change it or they have a product that looks so much like the other and it has gluten---i barley'd myself and didnt know it for 2 weeks, it didnt have the same effect on me as wheat--it didnt give me any symptoms, but i bet it was in there telling my villi to lay down :ph34r: and now i have finally realized i have to be soy limited too :( we celiacs can never let our guard down and we are always learning--this is our lifestyle :P like it or not---it does get easier, but we always have to watch :) deb
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#6 mommida

 
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Posted 03 December 2004 - 02:24 PM

I've been trying to be gluten free for about 12 months. I forgot to check out the lip gloss I wore yesterday. No need to call the manufacturer, since I reacted to it.
The thing that bothers me most is the codex system rating for "gluten free" foods. As long as the product is within the range of parts per million it is labeled gluten free.
Laura
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#7 Guest_NancyNet_*

 
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Posted 03 December 2004 - 03:02 PM

Hi Twister, I agree with Darlindeb25, I have had Celiac since 1996 and thought I pretty much knew it all about what to stay away from. Well, I just recently learned the the EQUAL sugar substitute I had been putting in my tea every morning had gluten in it! All of the sugar substitutes do!! I am now back to using regular sugar, haha... It is always a trial to try and stay Gluten Free, you have to read the labels when shopping all the time. Eating out is the hardest I think, restaurants to not help at all :angry: I usually order very basic things when out not sauces or processed foods. You can write or call companies like Kraft ect. to find out what they offer as gluten free..look on the labels of the packaging. Take Care, and good luck, we never feel good all the time... NancyNet :D
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#8 Guest_imsohungry_*

 
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Posted 03 December 2004 - 03:44 PM

Hi Twister!

Unfortunately, I don't think there is an average amount of time for figuring all of this out. It can be a slow (and very confusing) process. :blink:

I know that I draw a lot of parallels (I hope ya'll don't mind)...but the same thing goes for my epilepsy. I have been diagnosed for over 12 years; I've researched epilepsy as a patient, and even studied neuropsychology in college...and just this past year I found out that a trigger for my seizures is sudden hot water/temp. change (i.e. showers). After doing MORE research, I found out that this is not unheard of.

My point??? After 12 years of REALLY studying my health and self-care, I learned something new to avoid (I now take tub baths) to avoid those unnecessary seizures.

Anyway, I think that I (and you) are going to find that this is a continual learning process. However, I will tell you that I have been diagnosed for two months, and that initial "thrown to the wolves" feeling has lessened. As you learn to understand labels and do research, you will gradually build up confidence. Even the "old-timer" celiacs occasionally gluten themselves. We all do the best we can do.

So, for now, make your best effort and slowly "perfect" your skills as you learn.

Much hugs and welcome! -Julie B)
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#9 FreyaUSA

 
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Posted 03 December 2004 - 04:06 PM

Nancynet, I've been using DaVinci brand of flavored sugar free syrups (sweetened with splenda,) I called the company and they are all gluten-free. I've also been using the splenda packets :blink: never called them! Do you know if this has gluten? I guess I call the company Monday. (Maybe that's what's been getting to me this past week? I hope not.)
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#10 Guest_NancyNet_*

 
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Posted 03 December 2004 - 04:23 PM

FreyaUSA, that was how I found out they all have gluten, I was going to switch to Splenda, and I read the label to make sure and saw malt-dextrin or dextrin on the label.. Then I checked all the others and saw they all carried that same ingredient, but check anyway and let me know ok? and thanks for the info, I need the help, as we all do... Nancy :rolleyes:
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#11 lilliexx

 
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Posted 05 December 2004 - 08:05 AM

splenda is gluten free.....( unless somethings changed very recently)

anyway...in my first few months of being gluten free i was soooooo careful!! but in the last month i havnt been that careful ( stopped reading labels, becuz i thought i had it down) but i have been having pretty bad stomach problems in the last couple weeks. so even when you think you have everything figured out, you still need to be careful. i always learn my lessons the hard way <_<
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Gluten free since July 2004

I have made it one year and feel much much better!!!!!!!!!!!!!!!!

#12 darlindeb25

 
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Posted 05 December 2004 - 02:03 PM

;) geez. i about flipped when i read equal contains gluten :o ---then i was relieved when you said maltodextrin ;) ----maltodextrin in the US is safe ;) --it is made from corn--i believe they must state if it isnt made with corn, anyways, my sister the dietician checked it out and it is safe :D --i know that equal, nutrataste, sugar twin, splenda--most all sweeteners are gluten-free---i dont want to go back to sugar :( deb
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#13 Guest_NancyNet_*

 
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Posted 05 December 2004 - 04:18 PM

Thanks Deb for letting me know about EQUAL, I never heard that MaltDextrin is always corn in US unless otherwise stated.. I was told by doctor and websites to stay away from it all these 8 years! Ugh!! Thanks Again Wow,Iam happy! I also want to apologize for saying SPLENDA was not GlutenFree. I looked up there Website and they do not list themselves as glutenfree in there info., but they do give gluten-free recipes using Splenda, so it looks like you are right there also.. I wish they would make it easier for us to see if we can use a product right on it's label! :angry: Have a Good Day and Feel Better...Nancy :huh:
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#14 tom

 
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Posted 05 December 2004 - 04:19 PM

I ended up making 2 gluten mistakes after starting gluten-free.

At the beginning tho, i felt SO much better it didn't occur that gluten was still sneaking in. Then maybe 2 mos in, i'd realized that i'd plateaued and started rechecking EVERYTHING.
Although i was sure i'd checked every ingred in every pill b4, i ended up finding that the Vit C i'd been taking every day had a modified food starch that turned out to probably be from a grain source. (wheat or barley, not corn)
Ahhh here's the quote:
The only Longs Drug Stores brand of vitamin C that contains modified food
starch from a gluten-containing grain is Longs Vitamin C 500 mg tablets
with a product ID number of LG 4210 PL 440. This is according to Liener
Health Products, the manufacturer of Longs Drugs Stores vitamin C.


So w/ a gluten-free replacement, i started feeling like i was getting better again.

The other error was caught much quicker. Silly mistake and i like to blame it on the fog still bein around at the time. I'd checked toothpaste prev and it was fine. THen it ran out and i just grabbed the tube i had layin around. I didn't check it. I think it was Aim, but whatever brand it was i know it wasn't on the safe lists i've seen. Second day in, i realized what was different and checked it and stopped using it and i think i've been 100% gluten-free ever since.
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07




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