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Molecular Dude

Would You Be Among The First To Give It A Try?

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This is hypothetical. What if an experimental treatment for gluten sensitivity (ex. AT-1001, the zonulin inhibitor) proved to be very effective in preliminary trials, but little or nothing was known about possible side effects or long term effects. Would you be willing to participate in the secondary trials?

I think that I would because I really hate having to be on a restricted diet. But, it often takes quite a while for such trials to be conclusive and to reveal any unpredicted/unpredictable problems. Also, if the drug is not completely effective in blocking the autoimmune problems associated with celiac, this alone could cause long term problems. I'd be willing to give it a shot? How about you?


Life is to LIVE, not to suffer. Make the most of it, and have some FUN, regardless of your situation.

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No, I would wait to see if YOU would have long term effects first. ;) Seriously, because of being undiagnosed for so long I have irreversible damage already, I have no intentions of being a guinea pig and maybe die of cancer like my mother as a result.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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No, never, not worth it. How many drugs were deemed safe only to be pulled after millions of people took them? How many people have died, how many lawsuits have there been over approved medications that killed and maimed people? The pharmaceutical industry has repeatedly spun their own trials to get approval for drugs that wound up killing people.

I'd wait a good ten years just to see what the short term and long term effects are. And even then I probably wouldn't take it. What worries me more than side effects however is this attitude that if a pill can fix it we should all be taking the pill so we can become "normal". Normal for my body is gluten free. That is what my body has told me is the best for ME. I don't care about everyone else and what their normal is. I refuse to take a pill so I can be someone else's picture of normal.

Violet

This is hypothetical. What if an experimental treatment for gluten sensitivity (ex. AT-1001, the zonulin inhibitor) proved to be very effective in preliminary trials, but little or nothing was known about possible side effects or long term effects. Would you be willing to participate in the secondary trials?

I think that I would because I really hate having to be on a restricted diet. But, it often takes quite a while for such trials to be conclusive and to reveal any unpredicted/unpredictable problems. Also, if the drug is not completely effective in blocking the autoimmune problems associated with celiac, this alone could cause long term problems. I'd be willing to give it a shot? How about you?


"My mother always told me, it's okay to play with a man's mind

as long as you put it back where you got it when you're done with it."

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No.

The medical profession has done nothing for me. It would be completely illogical for me to use the last part of my life, however long or short it may be, to be nothing more than a research guinea pig to be used for a drug trial so some physician in the future could tell people like me that harmful drugs are better for them than just simply not eating wheat.... all to make a $ buck.

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Not for anything. Even when it is approved I will wait for at least 7 years before I try it for crosscontamination issues. I have already had enough maintance drugs that I was on pulled off the market. Nope, no thanks. I think the only thing this drug will really do for us is to get more of us diagnosed. Once there is a pill for the drug companies to push I bet diagnosis rates will soar. Hopefully doctors will clue folks in that they still need the gluten-free diet with this pill, it's main purpose (if I remember correctly) is to protect from CC issues.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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everyone already said what Iwas thinking but I counted in on the NO group!!!! I have terrible reactions to loads of things & mostly drugs...

I'm quite happy & satisfied with the diet & do not crave or miss anyhting anymore... There is so much now & more new products everyday so I'm a happy camper....

It is an interesting poll though.....

mamaw

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Edited - misunderstood topic.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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NO, I have already been messed over for various ailments by the medical profession and I really don't trust them to take me seriously. In their defense, however, they did save my dad's life from a potentially fatal heart attack. But, so often, when I go to the doctor (which is rare), they have such a condescending tone it angers me. ;)


Robin from Indiana

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Not for any price. The participants in the current trials are given a gluten pill everyday and all are given varying doses as well as no dose of the meds at some point. The participants in the current trials still have to be gluten-free and have other restrictions as well. Even if it works out it is my understanding that this med is not intended as something to be used daily to avoid a gluten-free diet. One would still have to be gluten-free and then it could be used occasionally like the lactaid pills.


Me: GLUTEN-FREE 7/06, multiple food allergies, T2 DIABETES DX 8/08, LADA-Latent Autoimmune Diabetes in Adults, Who knew food allergies could trigger an autoimmune attack on the pancreas?! 1/11 Re-DX T1 DM, pos. DQ2 Celiac gene test 9/11

Son: ADHD '06,

neg. CELIAC PANEL 5/07

ALLERGY: "positive" blood and skin tests to wheat, which triggers his eczema '08

ENTEROLAB testing: elevated Fecal Anti-tissue Transglutaminase IgA Dec. '08

Gluten-free-Feb. '09

other food allergies

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No way! No how!!

I've been told by an ALLERGIST that my full blown anaphylaxis to shellfish was a figment of my imagination (and my witnesses imagination). Another allergist told me it is not possible for adults to be allergic to milk while my skin test was growing bigger and bigger in front of his eyes.

If I get that kind of nonsense for something that obvious, I'm not chancing the more subtle and delayed reactions found with gluten!! I'll do the diet.


Shellfish free since 1980

Milk free (all forms) since 1991

Feingold in 2003

First gluten-free round 2007

Now entering full time Gluten free, egg free, almond/peanut free

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Count me as a yes.

I only intend to use it on the few social occaisions that I must rely on someone else to prepare me a gluten free meal. If it can open up the social horizon some for me, I will be happy.

While long term effects are a consideration, I don't plan to take it everyday, nor at every meal.

My social life is almost non-existant now, because of cross contamination. I cannot enjoy myself with groups of people or going out to eat, because I almost always get sick one way or another.

So, yes, I believe it would add to my quality of life.


Positive Bloodwork January 2007

Positive Biopsy Feb. 2007

Gluten Free since January 2007

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,9)

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I am very torn on this issue.

I work with Clinical Trials so I have seen both sides...now my trials are with cancer treatments so this isn't the same thing.

I may be willing to try it at some point, not as an everyday thing but a social thing....

I guess I am still up in the air.


~~~~Gluten Free since 9/2004~~~~~~

Friends may come and go but Sillies are Forever!!!!!!!

36_22_10[1].gif

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Not in this lifetime. Never again. I learned my lesson.

Years ago, I was put on medication for a severe case of ovarian cysts. The side effects of this

medication was mentioned as a slight risk, and glossed over. The medication worked for the

most part, but I got tired of taking pills every day, and my sister went through a battle with

breast cancer. Thankfully, she's a survivor. I pleaded with my doctor for surgical intervention,

to no avail. My options were either to keep taking the pill, or deal with being doubled over in

pain.

Last month, I was diagnosed with breast cancer. Two weeks ago, I went through surgery. For

the last two weeks, I lived with a balloon insert and a catheter dangling under my arm. Last

week I had CT scans and radiation every morning and every afternoon. Tomorrow, I get to

visit with my oncologist to discuss beginning five years of drug/hormone therapy to try to

prevent the cancer from returning. I'm very lucky that the cancer remained localized and

hadn't spread, and for the treatment and technology that became recently available. The ten

year prognosis is good, but I will have to spend the rest of my life being tested, on the lookout

for any signs that it may come back.

Would I take a risk with any type of medication again that wasn't absolutely, completely

necessary? Not on my life. For what I've gone through, for what my husband has had to

live through, - it's not worth it.

From my humble perspective, live life to it's fullest: embrace the moment that you are in,

value every person that you are lucky enough to meet, and share your love from the inside

out. Be as healthy as you can, and be happy; that's what really counts.

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Last month, I was diagnosed with breast cancer. Two weeks ago, I went through surgery. For

the last two weeks, I lived with a balloon insert and a catheter dangling under my arm. Last

week I had CT scans and radiation every morning and every afternoon. Tomorrow, I get to

visit with my oncologist to discuss beginning five years of drug/hormone therapy to try to

prevent the cancer from returning. I'm very lucky that the cancer remained localized and

hadn't spread, and for the treatment and technology that became recently available. The ten

year prognosis is good, but I will have to spend the rest of my life being tested, on the lookout

for any signs that it may come back.

The drug/horomone therapy is very normal for the 5 yrs. :) Good Luck.


~~~~Gluten Free since 9/2004~~~~~~

Friends may come and go but Sillies are Forever!!!!!!!

36_22_10[1].gif

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I would have to be put down as a YES. A person only lives once, so why should I have to be put on a restricted diet for the rest of my life?? I would totally try it. It wouldnt be used all the time, just on occasions where we were going out, or over to someones house. And if someone doesnt do the secondary trials how will there ever be something to fix it???


~~Jodi~~

diagnosed celiac around age 6

gluten free from age 6-age 12ish

Gluten free (again) since November 2007

People Say I am on a DIET, I tell them its a LIFESTYLE

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. And if someone doesnt do the secondary trials how will there ever be something to fix it???

Exactly, very well put.

If a clinical trial is a Phase 2 or Phase 3, that means that partical drug has been tested before and has done well so they are trying it for other things.

The Phase 1 is when the drug is first being introduced.


~~~~Gluten Free since 9/2004~~~~~~

Friends may come and go but Sillies are Forever!!!!!!!

36_22_10[1].gif

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As Amanda said, a Phase 2 or Phase 3, trial means that partical drug has been tested before and has done well so they are trying it for other things.

The Phase 1 is when the drug is first being introduced.

I have a feeling that in order to meet the criteria for doing this, there would be restrictions. Because of other medical problems that I have, I probably would not qualify.

If I did qualify, I would be willing to try.

Cindy


Diagnosed with Celiac Disease April 2005

Diabetic

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I cannot see myself being the first guinea pig, but the sencond or third trial i would have to try it.


~~Jodi~~

diagnosed celiac around age 6

gluten free from age 6-age 12ish

Gluten free (again) since November 2007

People Say I am on a DIET, I tell them its a LIFESTYLE

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And if someone doesn't do the secondary trials how will there ever be something to fix it???

This is why even though I "voted no" I extend my respect to those who are participating in the trials. My hope is that it may lead to something that can bring some relief to those who are suffering and not able to be gluten-free and/or are dependent on others who don't understand gluten-free for their meals(ie: institutional settings).


Me: GLUTEN-FREE 7/06, multiple food allergies, T2 DIABETES DX 8/08, LADA-Latent Autoimmune Diabetes in Adults, Who knew food allergies could trigger an autoimmune attack on the pancreas?! 1/11 Re-DX T1 DM, pos. DQ2 Celiac gene test 9/11

Son: ADHD '06,

neg. CELIAC PANEL 5/07

ALLERGY: "positive" blood and skin tests to wheat, which triggers his eczema '08

ENTEROLAB testing: elevated Fecal Anti-tissue Transglutaminase IgA Dec. '08

Gluten-free-Feb. '09

other food allergies

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This is why even though I "voted no" I extend my respect to those who are participating in the trials. My hope is that it may lead to something that can bring some relief to those who are suffering and not able to be gluten-free and/or are dependent on others who don't understand gluten-free for their meals(ie: institutional settings).

I had to think aobut it, and was a no, but when I really thought about it, i took into account the future, and if there were something like that out there, I would try it so that if my children(when i have them) were to have celiac, maybe they could have a little more options on what they could eat.


~~Jodi~~

diagnosed celiac around age 6

gluten free from age 6-age 12ish

Gluten free (again) since November 2007

People Say I am on a DIET, I tell them its a LIFESTYLE

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I have to say no. I do not like being restricted on this diet but I would like less another unforeseen side affect. I would rather play with the cards I am delt than be completely out of the game.


Confirmed by endoscopy and blood tests October 2007

Donna

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