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Determined To Try Gluten Relief


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#1 alicewa

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Posted 08 November 2011 - 06:17 AM

Hi,

I'm still so very new to this big gluten free diet and it often stresses me. I've heard that damage is often present years after in adults and am concerned I will never fully heal my gut even being gluten free. My antibody levels are still high, having recently found out despite being on the gluten free diet and I'm still not feeling better. I was a positive biopsy celiac.

Can you tell me has anyone on the board had experience with a product called Gluten Relief? Is it a genuine product that may be able to at least lower my antibody levels if not allow me to eat gluten again without damaging my intestines. I saw more details on this link that made me think it would be good for me.

There's a video featuring Jerry Block and he seems to know his stuff. The gluten relief appears to be by an endocrinologist, Dr Wise. They used Enterolab for the basis of their testing and doctors tell me that very few false negatives come from this lab.

Do you think it would help me? And even if I took it, should I remain gluten free. The lab results seemed so promising. :unsure:
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#2 IrishHeart

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Posted 08 November 2011 - 07:03 AM

Alice,

You state you are still new to the gluten free diet and your antibodies are still high. Perhaps you need to give it some time. I do not know your age, but if you are older, it make take longer.

People post this same question repeatedly, (and I think I have read several of your posts, too-- where you express your hope that something will allow you to resume a diet including gluten) ...do we think it's possible? And we keep telling you gently, NO.

Until a MAJOR MEDICAL BREAKTHROUGH occurs--and it WOULD BE FRONT PAGE NEWS, believe me!--the only "treatment" for this autoimmune disease right now is...no gluten.

I could explain all day long why this "cure" is not for real, but Dr. Ford's article does a fine job:


http://gluten-freepl...hic-remedy.html

Sorry, kiddo. There is no magic bullet.

In time, perhaps they will develop a vaccine. :) Until then, NO GLUTEN is the "cure".
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

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Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
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#3 alicewa

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Posted 08 November 2011 - 07:14 AM

Perhaps it's a stage I'm in. I read somewhere (I forget the link - I'll post it if I find it) a diagram of stages when on the gluten free diet. There's a range of things like relief, denial, anger, frustration, then acceptance.

I still don't feel perfect, which may be why I'm a bit annoyed. I don't seem to have any other food issues. I just had white rice for breakfast, lunch and dinner the last couple of days to cleanse but I still seem to have the odd sensations of discomfort. My mars bar experiment may still have affected me.

The makers of the gluten relief say that a vast majority have returned to their normal diets, more than 5 years ago. I'd wonder if there's any damage.

While I'd love a vaccine, I'd hate to think of what it would do to our gluten free range. :huh:

Maybe I'm a bit desparate.
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#4 IrishHeart

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Posted 08 November 2011 - 07:34 AM

Perhaps it's a stage I'm in. I read somewhere (I forget the link - I'll post it if I find it) a diagram of stages when on the gluten free diet. There's a range of things like relief, denial, anger, frustration, then acceptance.

I still don't feel perfect, which may be why I'm a bit annoyed. I don't seem to have any other food issues. I just had white rice for breakfast, lunch and dinner the last couple of days to cleanse but I still seem to have the odd sensations of discomfort. My mars bar experiment may still have affected me.

The makers of the gluten relief say that a vast majority have returned to their normal diets, more than 5 years ago. I'd wonder if there's any damage.

While I'd love a vaccine, I'd hate to think of what it would do to our gluten free range. :huh:

Maybe I'm a bit desparate.



We all know the stages of grief post-DX. And yes, it is likely you are experiencing the Denial part right now. Time to try and make peace with it all. It will come to you :)

The makers of this homeopathic remedy provide no evidence about whether or not there is villous atrophy after using this product. Not good enough, if you ask me. JMHO

"Odd sensations of discomfort"---well, that doesn't sound too bad! You're getting there! Give yourself some more time to heal. Stay strictly gluten-free.

It is difficult to be patient (believe me, I know--I have seriously debilitating and painful symptoms that I want gone right now!! <_< ) but TIME is what it takes.

Best wishes and hang in there. :)
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#5 alicewa

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Posted 08 November 2011 - 07:51 AM

Love your cat photo! Looks like he/she'd say the same thing. :D

I don't suppose it would do any harm, if I was willing to stay totally gluten-free would it? Maybe I'd be protected from 'incidents' :rolleyes:
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#6 mushroom

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Posted 08 November 2011 - 12:31 PM

I don't suppose it would do any harm, if I was willing to stay totally gluten-free would it? Maybe I'd be protected from 'incidents' :rolleyes:


Not only would it not do you any harm, but you absolutely must stay gluten free if you want to feel better and have your antibody levels go down. This is one instance where "a little bit" definitelly can hurt, a lot. Tough as it is, you must get through this bargaining stage and accept the fact that you cannot have any gluten, and get real serious about the diet. Otherwise you are dooming yourself to a lifetime of ill health, which I am sure you do not want. It is possible to feel much, much better, and feel better about yourself too for having the willpower to stick to it :) Time to organize your pantry and fridge right now so that you have NO MORE gluten and get on the recovery road.
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#7 kareng

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Posted 08 November 2011 - 12:57 PM

Love your cat photo! Looks like he/she'd say the same thing. :D

I don't suppose it would do any harm, if I was willing to stay totally gluten-free would it? Maybe I'd be protected from 'incidents' :rolleyes:


What Shroomie said!

Honestly. I could get an actor to say he's a doctor and talk on the internet. Take the money you were going to waste on this snake oil and buy gluten-free Chex cereal & Progresso soups for the food pantry.
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#8 heidi g.

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Posted 08 November 2011 - 01:17 PM

Bad idea i would think. Especially starting it when your new the healing and doing the diet. Plus, there's alot of scams on the internet. If it actually worked, im sure it would be all over the internet or the news. I mean, a cure for celiac disease is a big ordeal i would think.
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#9 Bubba's Mom

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Posted 08 November 2011 - 01:31 PM

If this suppliment actually blocked gluten from entering your system it would be huge news! They'd be charging hundreds of dollars for it and we'd all have an RX for it. It would be the treatment most prescribed by Dr.s because they love to write RXs. Unfortunately, it won't work.
The product is basically just digestive enzymes. It helps you digest things faster so they go out of your system faster. May help if you accidently ingest a small amount of gluten by accident?

There's NO WAY you can take this product and eat foods with gluten! Your immune system will stay inflamed and you'll get additional damage and illnesses. This is nothing to play around with! I'm jumping up and down here..because I don't want you to hurt yourself.

Treat gluten as if it's rat poison. There is NO safe dose!
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#10 heidi g.

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Posted 08 November 2011 - 01:40 PM

I agree!
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#11 IrishHeart

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Posted 08 November 2011 - 02:01 PM

Love your cat photo! Looks like he/she'd say the same thing. :D

I don't suppose it would do any harm, if I was willing to stay totally gluten-free would it? Maybe I'd be protected from 'incidents' :rolleyes:



Honey, even my CAT is gluten free! ;) She eats NO-grain cat food and her coat is gorgeous. She looked like heck --skinny with dull, patchy fur---when she arrived on our doorstep and now, she's healthy and happy. Why? Good lovins and NO gluten! :D

Not do any harm to stay gluten-free?? :blink:
Sweetie, the harm you are doing is by NOT staying gluten-free!! Didn't the doctor impress this upon you when he told you about the celiac? You risk major complications by continuing to consume gluten-- among them, possible fertility issues and other autoimmune diseases. You do not want any of that! Not for a lousy piece of bread!

The sooner you accept this, the happier you will be!! If I had known 30 years ago that this one thing was all I had to do to avoid the incredible pain and suffering this thing has caused me, I'd have gladly followed the gluten-free diet and my life would have been drastically different.

This is nothing to screw with, kiddo. We want you to be healthy--and live a long, happy life!
Cheers,
Irish
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#12 anabananakins

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Posted 08 November 2011 - 09:39 PM

Perhaps it's a stage I'm in. I read somewhere (I forget the link - I'll post it if I find it) a diagram of stages when on the gluten free diet. There's a range of things like relief, denial, anger, frustration, then acceptance.

I still don't feel perfect, which may be why I'm a bit annoyed. I don't seem to have any other food issues. I just had white rice for breakfast, lunch and dinner the last couple of days to cleanse but I still seem to have the odd sensations of discomfort. My mars bar experiment may still have affected me.

The makers of the gluten relief say that a vast majority have returned to their normal diets, more than 5 years ago. I'd wonder if there's any damage.

While I'd love a vaccine, I'd hate to think of what it would do to our gluten free range. :huh:

Maybe I'm a bit desparate.


You're right, we really do go through those stages. And that means, you'll eventually work your way through and it won't seem so bad anymore. You'll get there, you really will and in the meantime, vent here as much as you want! :) I feel sad for you because you're really struggling and from what you've said, I don't think you were in really bad health before your diagnosis so it's probably come as a pretty awful surprise to you. You probably want to lie on the floor kicking and screaming about how unfair it all is - well, go ahead and do so either for real or here! It helps :) One day, you'll be telling some other poor newbie how hard it was but you got through it. I believe that, 100%! *hugs*

As the others have already said, there is no magical solution right now. Just - no gluten. No more experimenting with little bits of gluten. But you're allowed to be sad, to grieve, and to rant and rave as much as you want (just best to do most of it here, we understand :) )

If you're missing mars bars, you can eat nutella. Not exactly the same, but still very good!
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#13 Skylark

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Posted 08 November 2011 - 11:03 PM

I looked at the so-called study and ingredients and I am absolutely appalled. Run, don't walk from these scam artists. There aren't even enzymes in it - it's homeopathic stuff and vitamins. There's no way it could cure celiac disease. Also, very few false negatives come from Enterolab because almost everyone is positive! :lol:

I'm sorry your antibodies are high and you're stressed. Hang in there. Many biopsy positive celiacs DO heal in time so think positive.
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#14 AVR1962

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Posted 08 November 2011 - 11:52 PM

I looked at those things too, posted something similiar months ago. It seemed I woke up one morning and was sick, almost like I entered someone else's body. Sure I'd had issues before my trip to ER which started my journey but until my symptoms went neuro things were managable. So it has been really hard for me to adjust to the idea that I will have to eat like this forever, especially when I still wasn't feeling god in the beiginning and wondering if I was even on the righ track. It has been 9 months since my ER trip. I have been gluten-free since April. I finally, after months and months of mistakes, made it to over 5 weeks without accidental glutening and I am NO LONGER DIZZY. This is HUGE! I have found other foods my body doesn't tolerate, and whilethey don't make me dizzy for 3+ weeks like gluten does, the damage is enough to keep me away from them. It does pay, it is worth it and you will get to feeling better. You will adjust and I think in the long run you will feel better than you have for a long time. It just takes time. It takes alot of adjusting and alot of acceptance. I am 48, was a Cinnabon addict, tortilla scramblers every morning for breakfast before. Now if I want those things I make them myself but I have found that my diet really wasn't good before. Now I have to pay attention to the nutriens I am putting into my body, and that is actually a good thing. Hang in here, you can do it!
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Yesterday is not ours to recover but today is ours to win or lose!

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#15 alicewa

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Posted 09 November 2011 - 01:10 AM

How come no one has posted online that gluten relief hasn't helped them then, if it doesn't work? The makers say they've sold over 2000 bottles in the video.

Here's the post that discusses why some cheat. Makes me sob just looking at it (especially the teary-eyed picture). I seem to really be able to relate, as well. :(
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