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Hidden Foods! Was Doing So Well!

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Posted 15 May 2013 - 04:38 AM

So at my Dr's suggestion of going gluten free to see if it would help with my health issues of truncal weight gain, bloating, nsusea, burping, rashes, joint pain and fatigue, i started a gluten-free diet last Friday. It went amazingly well! My bloating went down to barely noticeable, i lost 3 pounds, no stomach pain, gas or bloating etc i was thrilled!

I made pizza last night using bob mills gluten-free crust mix and it is the first time for me to eat pizza snd not feeling sick or instantly ballooned tummy!

After dinner, my bf offered me a strawberry twizzler, I had 2 without thought that it might gave gluten in it and within the hour, i got little white bumps on my arms, stomach and puffy look in my legs, thrn burning and tingling hands, sore tummy and nausea, swollen red lymph node on jaw line near my ear!

I woke up this morning still feeling sick and bloated, bumpy and itchy.

I feel depressed, how will I get through this without making mistakes?

Is there a site that has a comprehensive list to type in and see if its gluten free that is accurate?
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Posted 15 May 2013 - 05:03 AM

I am not aware of a source such as you are looking for, and would not recommend it even if I did.


The problem with a list--any list--is that products change all the time. A list is based on a moment in time. The example of the product you have in hand may be newer, or older, than the information in the list.


It does seem overwhelming at first, but over time you get to know what isn't safe and what to question. If in doubt, read the ingredients. Wheat must be clearly disclosed in both the US and Canada. Rye and oats don't appear in unexpected places, but barley can be listed as malt without disclosing the source in the US.


Canada adopted new rules effective August 4, 2012, that require all gluten sources to be explicitly disclosed by naming the grain in question. Products packaged prior to that date may still be in stores.


Read the ingredients.

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Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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Posted 15 May 2013 - 05:11 AM

The easiest rule to live by right now is:


Read the ingredients on everything with an ingredient list and don't eat anything you haven't prepared yourself or seen prepared. 



There are apps but they are limited.  There is no way they have info for every brand of everything.  Some compensate for that by saying the unlisted items have gluten, even when they don't.

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"Children in a family are like flowers in a bouquet: there's always one determined to face in an opposite direction from the way the arranger desires."
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Posted 15 May 2013 - 07:16 AM

Twizzlers have wheat in them and it's clearly marked on the package.  Like others have said, you have to read all labels from now on.  This will become second nature very quickly so relax!

You will get there, even if you feel overwhelmed right now.

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Posted 15 May 2013 - 07:29 AM

yes, you will get very good at 'package flipping' - remove package from shelf, flip package over, read package (til you see gluten), flip package back over, put package back on shelf.


it's a little easier now with the allergy warning following ingredients if it's not clearly listed in the ingredients.

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misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010


only YOU can prevent forest fires - smokey t. bear


have a nice day :)

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Posted 15 May 2013 - 07:53 AM

I live by the motto of every label, every time. I'm buying something I bought last week? I read the label. I'm buying more than one of something? I read all the labels. At home when I pick something up in the pantry, if I can't remember the actual store trip when I purchased something, I read the label. Eventually it will become second nature.


And just so you don't get disappointed later, if you walk into the grocery store and start picking up licorice, nearly all of it has wheat. Enough that it took me no time at all to realize I would never find good licorice in a store again.

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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."


Celiac DX Dec 2012

CRPS DX March 2014



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Posted 15 May 2013 - 09:07 AM

Yup, no more casually accepting offered food. Ask: What is it? what's in it? where's the package? I need to read the label. If you can't find out what's in it, don't eat it!

It's a learning curve, definitely. we've all messed up, and feel horrible, then get better, then mess up again, but you get better at it, and eventually it'll become second nature.


In the meantime, it sounds like the gluten-free diet it working for you! Which is great! This is just a bump in the road. Too bad it has to be so unpleasant.


I don't like licorice anyway, but I do believe you can find it gluten-free in health food stores on occasion, but just the black stuff.


Happy Healing

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~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.



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Posted 21 May 2013 - 05:09 AM

"package flipping"! I love that definition....

May I add my Italian experience? We have a very active AIC association here (Associazione Italiana Celiachia). They actually print (and also have on their website, constantly updated) a list of all gluten-free products on sale in Italy, including those you find in normal supermarkets(which mayonnaise to buy? etc). Also a list of all hotels and restaurants in Italy guaranteeing gluten-free food. Plus, they give out certification to gluten-free products.


However, while I do trust them, it is not enough. Plus, I'm lactose-intolerant and a good part of those gluten-free foods is still going to make ME sick. Plus, they deal with food and proclaim for instance that lipsticks and hairspray and cosmetic creams are not ever a problem.  My own experience has been different. So - it's back to the learning curve and reading all labels, always.... and to package flipping!

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Posted 21 May 2013 - 05:42 AM


Yep...package flippers are us!

Take a look at the "Newbie 101" thread -- it gives wonderful advise that will speed your transition to your gluten-free life. The transition is tough...I was brought to tears regularly during grocery store missions out of package flipping -- especially when I had to start carrying "cheaters" to read some of the teeny tiny print. It does become second nature....the best thing to do is think outside perimeter shopping - you see al the whole foods without many ingredients - meat, dairy, fruits and vegies are all found here....limit the processed foods...even processed foods labeleled gluten-free can be tough on your healing digestive system.

Hang in there and focus on that first piazza that didn't make you ill.

Read the newbie thread and ask lots of questions...it really does speed the transition :)
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Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS


ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)

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