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Afraid to be gluten free

 
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Sue777
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Joined: 19 Jun 2005

Posts: 382
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2017 Dec 17 - 7:26 PM



Location: Connecticut

PostPosted: Thu Jul 27, 2017 5:29 pm    Post subject: Afraid to be gluten free Reply with quote

Hi there.
I have stubbornly refused to give up gluten all these years, wanting to believe the docs and nutritionists that say diet has nothing to do with this. But now I want my life back so I'm willing to do what it takes. I gave up gluten today and am reading and researching what to eat, what not to eat, shopping, etc. But what scares the bejeezus out of me are all the things I've read about what happens to people when they've been accidentally glutened! As with a lot of things in the human body, is it better to keep a small amount of antibodies present in the system so that we don't get "hit by a truck" when we're exposed to something? (Rough example: we're told that being exposed to some germs is healthy and keeps our immune system protecting us).

If I get it all out of my system and then get cross contaminated or glutened, am I going to be really sick like some of the horror stories I've read? At that point I have to wonder if it's better to deal with colitis symptoms rather than live in fear and anxiety of getting accidental gluten. I don't want to be "one of those people" who are fanatical about this. I realize some people NEED to be because it's life or death for them, but I don't have celiac disease (and hope to know from Enterolab in a week or two how strongly I react to certain foods). But I'm scared that going this route is going to set me up for even bigger problems if I run across some gluten (which is bound to happen in my lifetime).

I hope I'm being irrational and I'm going to stick with this but it's making me nervous. No, actually, terrified.
Sue
_________________
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
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tex
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Joined: 24 May 2005

Posts: 30861
User's local time:
2017 Dec 17 - 5:26 PM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Thu Jul 27, 2017 6:06 pm    Post subject: Reply with quote

Sue,

Yes, early on, reactions to accidental exposures can get your attention. They can be heightened. But after you've been in remission for a while, and after your gut heals, that is no longer the case. I find that accidental exposures after healing are actually rather mild, much milder than they were initially and they don't last very long. Sometimes you only get a little bloating, or aches or pains (a warning sign). But if you continue to transgress, it will eventually catch up with you and you will begin to react again. The key is to allow your gut to completely heal those who cheat on their diet, only cheat themselves.

Tex
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cowboy

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Gabes-Apg
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Joined: 21 Dec 2009

Posts: 7276
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2017 Dec 18 - 9:26 AM


Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Thu Jul 27, 2017 6:21 pm    Post subject: Reply with quote

Sue
there is a product called 'Gluten eze' that other members have used for events such as eating out, attending functions etc that can help to minimise reactions to contamination / undeclared gluten.

the other aspect is, if your eating plan is low inflammation gut healing as much as possible, and you are taking the right nutrients, then your body will cope with the fluctuations of 'living life'

the main thing is to remove these fears/nerves about 'living life'. it has the likelihood of causing you more issue than gluten.
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Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Sue777
Gentoo Penguin
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Joined: 19 Jun 2005

Posts: 382
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2017 Dec 17 - 7:26 PM



Location: Connecticut

PostPosted: Thu Jul 27, 2017 6:46 pm    Post subject: Reply with quote

Thanks, you, two. I needed to hear that. Geez, I read about people who get accidentally glutened and end up either flopping around on the floor in seizures or in some sort of comatose state and being rushed to the hospital, or at the low end, vomiting violently and having blood pressure issues. Scary stuff!

Since I don't think I have "celiac disease" I'm hoping I will never see one of those reactions. Thanks for the warning, Tex, that an accidental gluten can make me ill in the beginning but that the longer I am gluten-free, the incidents will be less severe. I was afraid of the opposite: that the longer I'm gluten free, the worse an accidental gluten would be.

And thank you, Gabe, for the tip about the product. I took something similar to that when I was "low carbing" 15 years ago that supposedly blocked carbs. I will definitely get some because I'm big on placebos so just having it in my pocket book will make me feel better. :)

You are so right - my nerves are going to get to me much quicker than gluten does, but if I keep putting ReMag on my skin, maybe my anxiety will be a thing of the past, along with gluten! :)
Sue
_________________
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30861
User's local time:
2017 Dec 17 - 5:26 PM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Thu Jul 27, 2017 9:31 pm    Post subject: Reply with quote

Sue,

You must have read about those reactions on some other forum. I don't recall ever reading about a reaction that severe on this one. While you're healing, the immune system becomes slightly more sensitive, but nowhere near as bad as you describe. And as you heal, that increased sensitivity fades away. I'd be nervous about quitting too, if I read something like that.

Tex
_________________
cowboy

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Sue777
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Joined: 19 Jun 2005

Posts: 382
User's local time:
2017 Dec 17 - 7:26 PM



Location: Connecticut

PostPosted: Thu Jul 27, 2017 9:48 pm    Post subject: Reply with quote

tex wrote:
Sue,

You must have read about those reactions on some other forum. I don't recall ever reading about a reaction that severe on this one. While you're healing, the immune system becomes slightly more sensitive, but nowhere near as bad as you describe. And as you heal, that increased sensitivity fades away. I'd be nervous about quitting too, if I read something like that.

Tex


You're right, Tex.... I was on a celiac forum site. I was in the "Gluten Intolerance" section but apparently the severe celiacs must have been posting in there, too. Thanks for understanding my anxiety. :)
Sue
_________________
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
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Marcia K
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Joined: 03 Apr 2014

Posts: 895
User's local time:
2017 Dec 17 - 5:26 PM


Food Intolerances : gluten, dairy, tuna, chicken, oat, cashew, salmon
Location: PA

PostPosted: Fri Jul 28, 2017 6:53 pm    Post subject: Reply with quote

Hi, Sue. I taken Gluten Ease before dining out. It seems to work for me. When I have been accidentally glutened I would have a headache in the morning (not unbearable) and sometimes my joints would hurt but nothing like you fear. I am four years post diagnosis and if I have been glutened lately I'm not sure that I even know it because I haven't had a reaction for quite some time. I try to live as normally as I can with LC and I'm willing to take a chance by eating out with my family but I would never intentionally ingest gluten. The thought of that makes me shudder!
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Marcia
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
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Sue777
Gentoo Penguin
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Joined: 19 Jun 2005

Posts: 382
User's local time:
2017 Dec 17 - 7:26 PM



Location: Connecticut

PostPosted: Fri Jul 28, 2017 11:54 pm    Post subject: Reply with quote

Marcia K wrote:
Hi, Sue. I taken Gluten Ease before dining out. It seems to work for me. When I have been accidentally glutened I would have a headache in the morning (not unbearable) and sometimes my joints would hurt but nothing like you fear. I am four years post diagnosis and if I have been glutened lately I'm not sure that I even know it because I haven't had a reaction for quite some time. I try to live as normally as I can with LC and I'm willing to take a chance by eating out with my family but I would never intentionally ingest gluten. The thought of that makes me shudder!


Thank you for sharing that - I was reading the reviews and the differences between the Gluten Ease and the Gluten Ease with other stuff added.... not sure which one to purchase but I probably don't need the extra strength version.
Sue
_________________
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
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Erica P-G
Rockhopper Penguin
Rockhopper Penguin


Joined: 08 Mar 2015

Posts: 1274
User's local time:
2017 Dec 17 - 3:26 PM


Food Intolerances : Gluten, Dairy, Eggs, Soy, Tuna, Beef, Oat, Almonds, Walnuts
Location: WA State

PostPosted: Mon Jul 31, 2017 4:24 pm    Post subject: Reply with quote

HI Sue,

I'm not sure if I know when I have been glutened....I'm not celiac either, and I carry the Glutenease in my purse....I did have a piece of graduation cake June 10th (yes I was prepared for the outcome - it looked so good and I could taste it) and it wasn't long after that I sported a rash just to the left side of my nose above my lip, and it is just now starting to calm down and not be so red and bumpy with little water bumps. For me it could have been a duo of soy and gluten response, all I know is while I was detoxing all last year I would get these anomalies on the back of my ear lobes with little water bumps and I derived it was my bodies way of getting rid of what it didn't want systemically.

So with this little experiment out of the way....I may have figured out how to spot an irritant that I get into. I don't necessarily get joint aches that I am aware of....I may get a touch of a headache though...

I certainly don't get sick.....
E
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To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
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Sue777
Gentoo Penguin
Gentoo Penguin


Joined: 19 Jun 2005

Posts: 382
User's local time:
2017 Dec 17 - 7:26 PM



Location: Connecticut

PostPosted: Mon Jul 31, 2017 4:46 pm    Post subject: Reply with quote

Erica P-G wrote:
HI Sue,

I'm not sure if I know when I have been glutened....I'm not celiac either, and I carry the Glutenease in my purse....I did have a piece of graduation cake June 10th (yes I was prepared for the outcome - it looked so good and I could taste it) and it wasn't long after that I sported a rash just to the left side of my nose above my lip, and it is just now starting to calm down and not be so red and bumpy with little water bumps. For me it could have been a duo of soy and gluten response, all I know is while I was detoxing all last year I would get these anomalies on the back of my ear lobes with little water bumps and I derived it was my bodies way of getting rid of what it didn't want systemically.

So with this little experiment out of the way....I may have figured out how to spot an irritant that I get into. I don't necessarily get joint aches that I am aware of....I may get a touch of a headache though...

I certainly don't get sick.....
E


Glad you found your "clues" as to when you've eaten an irritating food - thanks for sharing!
Sue
_________________
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
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