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Ryan T

Potential Cure Getting Closer?

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You will find that this forum has a decidedly anti-medical profession bent; there's simply no denying it as any quick search will prove. We have many here who do not agree with any invasive testing, or that blood/genetic tests mean anything at all, or that vaccines are safe, or that any medicines approved by the FDA are safe; many believe that their doctors are only in it for the money and that the FDA is a corrupt organization in the pocket of the big pharmaceutical companies. The list goes on . . .

They might be right - I don't know - but you should probably know all of this before you start posting and riling people up! Ultimately we are all here to learn and to help so please keep that in mind.

I can only speak for myself and that is what I am doing here in response to the statement that I bolded.

I have very good reason to be a bit jaded with 'modern' medicine, it's tests and treatments. As a seronegative celiac who was almost dead before a doctor suggested trying the diet, as a arthritis patient who was given drug after ineffective drug only to see them be taken off the market, as someone who has been firmly diagnosed celiac without the 'recognized'genes, as a Type 2 diabetic who had to educate herself on things like the glycemic index of foods I have plenty of reason to be a bit skeptical about 'cures' or treatments.

I am not anti-medical profession, but frankly a doctor has to earn my trust with his knowledge not with a piece of paper from a medical school. And a drug has to earn my trust with it's time tested proven safety and effectiveness.


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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Its very discouraging reading peoples comments geared with negative attitudes toward what could be something that may help any of us in the future. I understand peoples frustration towards celiac and what it has done to alter some peoples drive in life; while others have seen it as a chance to build a healthy lifestyle and keep a positive outlook on life. I believe people need to be more optimistic and keep thinking of the positive!

The University of Alberta is one of the top research facilities in the world!!! This is not your everyday pharmaceutical screw over the planet organizations. ( And yes I do believe that pharmaceutical companies play a HUGE part of running our lives and making terrible moral and ethical judgments. But lets please keep that a separate topic. ) I would suggest people to look over the site www.med.ualberta.ca Please look at their background and what they have to offer.

Remember we are all in this together!!

Ryan

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I don't need to be "cured" of anything, but the food manufacturing and preparation industry needs to be able to respond to consumer needs other than prompting the Pharma industry to make another pill for their sloppiness and continued use of "mystery" ingredients source from "mystery" manufacturers somewhere on the planet.

Pharma research is a huge cash cow for these universities.

Here's another link from the Edmonton Journal:

http://www.edmontonjournal.com/Health/Eggs...0465/story.html

In September, Sunwoo and his team will work with U of A gastrointestinal specialists on the first phase of human clinical trials on about 20 patients.

He has applied to Health Canada for registration as a specialty food product rather than a drug, which would shorten the time to get it to market.

In other words, there will be no long term studies of how this "antibiotic" effects the humans taking it, before its general release in 3 years, and whether or not it will have any long term side effects such as taking away the body's ability to digest other proteins, or whether the glu- intols or celiacs will be at higher risk for developing cancer.

I know that the anti tumor necrosis factor biological agents for the treatment of some forms of arthritis were supposed to be the "cure" for rheumatoid arthritis and some other forms of auto immune diseases, but have proven to be anything but that. What they don't tell the patients is that these immune system altering drugs tend to lose effectiveness after a few years so the next drug in the series has to be taken, that eventually many patients run out of options, that they are overated for certain types of arthritis and the patient may end up taking a boatload of other dangerous drugs anyway, that the drugs have rare but life threatening side effects like dying of opportunistic infections, and that they increase the risk of lymphoma cancer. Given all that, it is still worth it to many patients to take these drugs. That is their right to do so.

What disgusts me about the pharmaceutical industry is how they have co opted many health message boards into pushing the idea that the only way to treat arthritis is by taking these drugs irregardless of pre existing conditions, or the genetics and the cause of the arthritic conditions, and how they have belittled, trolled, blatantly harassed, and even banned some people who attempt to guide others onto the idea that their symptoms match those of the gluten intolerant/celiac and that a diet change might be more appropriate and give better results. To me, this is immoral behavior to make people sicker for the monetary gain.

The medical industry is also partially to blame as I doubt there are very many adults here who were either diagnosed as adults or came to the self realization that it had to be gluten that was making them ill, that have not heard the phrases "it's all in your head," or "I find nothing wrong with you per the test results," or paraphrased as "fibromyalgia" or "IBS" or "there is no relationship between your (disease) and diet.

To get back to medical ethics, again, in a world where the climate is changing and the resources available to sustain ourselves with enough food, shelter, and warmth may also be changing, is the correct approach to a problem with the purity of the food supply re a significant percentage of the population, and people's eating habits to make yet another drug to enable people to eat it ?

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In other words, there will be no long term studies of how this "antibiotic" effects the humans taking it, before its general release in 3 years, and whether or not it will have any long term side effects such as taking away the body's ability to digest other proteins, or whether the glu- intols or celiacs will be at higher risk for developing cancer.

To get back to medical ethics, again, in a world where the climate is changing and the resources available to sustain ourselves with enough food, shelter, and warmth may also be changing, is the correct approach to a problem with the purity of the food supply re a significant percentage of the population, and people's eating habits to make yet another drug to enable people to eat it ?

In other words it will be sold as an unregulated 'supplement', if I am reading this correctly? Thank you for pointing this out. It is a very important thing for us to be aware of.


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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Hello everyone. I live in Edmonton, Alberta, Canada and I saw this on the news recently. Went and got the article from Google. You may find it quite interesting. Just so you know U of A is the University of Alberta located in Edmonton.

Ryan

U of A study discovers potential treatment pill for celiac sufferers

Patricia Skagen-Emokpae, News Writer

Thanks to the work of Hoon Sunwoo, a researcher in the Faculty of Pharmacy and Pharmaceutical Sciences at the University of Alberta, those coping with celiac disease may soon find themselves able to live symptom-free.

The estimated one in 133 Canadians suffering from celiac disease, often referred to as

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Thank you Takala, an excellent statement! :)

This topic seems to be coming up more often, I am pretty sure there have been other threads on this although not this particular egg.

I read something recently about Alba's drug for Celiac selling for $350,000,000.00. I couldn't find the link for that but you can hit the bolded section for more information about that drug.

Does anyone seriously think that after a company spends that much money that they are going to quibble if there are "side effects"?

I think this issue goes so much deeper than just our individual selves and our desire to have whatever we want whenever we want, as a species I do not see us having a future unless we can find a way to change our thinking about health and wellness.


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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I don't need to be "cured" of anything, but the food manufacturing and preparation industry needs to be able to respond to consumer needs other than prompting the Pharma industry to make another pill for their sloppiness and continued use of "mystery" ingredients source from "mystery" manufacturers somewhere on the planet.

Pharma research is a huge cash cow for these universities.

Here's another link from the Edmonton Journal:

http://www.edmontonjournal.com/Health/Eggs...0465/story.html

In other words, there will be no long term studies of how this "antibiotic" effects the humans taking it, before its general release in 3 years, and whether or not it will have any long term side effects such as taking away the body's ability to digest other proteins, or whether the glu- intols or celiacs will be at higher risk for developing cancer.

I know that the anti tumor necrosis factor biological agents for the treatment of some forms of arthritis were supposed to be the "cure" for rheumatoid arthritis and some other forms of auto immune diseases, but have proven to be anything but that. What they don't tell the patients is that these immune system altering drugs tend to lose effectiveness after a few years so the next drug in the series has to be taken, that eventually many patients run out of options, that they are overated for certain types of arthritis and the patient may end up taking a boatload of other dangerous drugs anyway, that the drugs have rare but life threatening side effects like dying of opportunistic infections, and that they increase the risk of lymphoma cancer. Given all that, it is still worth it to many patients to take these drugs. That is their right to do so.

What disgusts me about the pharmaceutical industry is how they have co opted many health message boards into pushing the idea that the only way to treat arthritis is by taking these drugs irregardless of pre existing conditions, or the genetics and the cause of the arthritic conditions, and how they have belittled, trolled, blatantly harassed, and even banned some people who attempt to guide others onto the idea that their symptoms match those of the gluten intolerant/celiac and that a diet change might be more appropriate and give better results. To me, this is immoral behavior to make people sicker for the monetary gain.

The medical industry is also partially to blame as I doubt there are very many adults here who were either diagnosed as adults or came to the self realization that it had to be gluten that was making them ill, that have not heard the phrases "it's all in your head," or "I find nothing wrong with you per the test results," or paraphrased as "fibromyalgia" or "IBS" or "there is no relationship between your (disease) and diet.

To get back to medical ethics, again, in a world where the climate is changing and the resources available to sustain ourselves with enough food, shelter, and warmth may also be changing, is the correct approach to a problem with the purity of the food supply re a significant percentage of the population, and people's eating habits to make yet another drug to enable people to eat it ?

Amen to this. I am one of those ignorant Americans who searched this for years and fought medication for my Rheumatoid Arthritis in spite of the pressure from my Rheumatologist who was pushing Humira and Enbrel and many other things at me at every turn as my RA kept getting worse.... until I was blessed enough to have a wife who had an epiphany that this might, indeed, be celiac. I have doctors all through our families and those in research, pharma, I was in medical equipment sales for a time and am hardly ignorant to medicine and physiology nor have I been deprived of health care. Oh, did I mention that once I was diagnosed for celiac and have been gluten free that my RA is rapidly disappearing and I am going crazy because I see celiac as the root cause of so much suffering around me in folks too worn out by a barrage of foodacopia industrialized western consumptive dietary practices who are now as glassy eyed as the intake nurse in "Idiocracy" and are unable to think straight anymore. Just try to have a cogent conversation with many and you begin to understand. I want nothing to do with anything that made it not only impossible to move four months ago but also blocked the ability to think. I have been liberated to a diet that has made me come back to life right before people's eyes and yet they will deny that diet is really that important. The deep set re-education of western diet post WWII has been accomplished and I have basically withdrawn from it to a lifestyle that is allowing me to live life again. Just like I wouldn't stick a needle in my body for a drug that I had to sign a waiver clearing the drug company of any liability should I die as a result of the serious side effect potential of something that only masked the symptoms, I will not turn back to a lifestyle that co-opts long term wholeness for short term indulgences.

Live!

Chuck

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I agree with you Ryan. I hope there is a cure. I really miss my lobster cakes. Are you male or female....you cant tell with a name like Ryan.

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It does seem to be too good to be true, but I would definitely give it a try. I have had so many strange health issues since I was diagnosed with Celiac Disease. I never know how I am going to feel from day to day. It really gets me down. Wow, it's exciting to think that I could enjoy my favorite dinners with my kids again, or go out to eat and order like a normal person. I would risk it - but that's just me!!!

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:o I simply cannot believe how ignorant most of you are? To have such disbelief in a medical break through completely bewilders me!? My first assumption is most of you are likely American citizens where medical benefits are greatly limited and therefore cause ignorance? ....Additionally, since when did any of you graduate med school... I'm afraid i am one that is strongly in favor of this cure and thank Ryan for posting this. And yes when it is released to the public, i will be dinning out with my family in restaurants and traveling the world eating as i please and not worrying about the consequences, the way life should be lived. Besides, every drug before it is released to the public must go though a mandatory human trial which usually must last a minimum of 2 years.

I would also like to mention i saw this medical breakthrough on television as it made National News...

I say its time for a little optimism, your stomachs will thank you for it

I would also like to add that i don't have any personal problems with Americans, just with there health care system, as it tends to cause a lot of Americans ignorance due to a lack of proper health care.

Ahem....cough....cough......time to set someone straight here. :angry:

American medical benefits may be somewhat limited but they are VASTLY greater than in most countries because we do not have

socialized medicine....as of yet, anyway. The current administration seems hell bent on making it that way and I so hope not.

Benefits also do not cause ignorance.....it's the set of standards used by the AMA in diagnosing Celiacs that cause many to become disillusioned

by the system. It should NEVER take an average of 11 years to find a problem, IMO.

A person also does NOT have to attend medical school to become educated on medical matters...I can and do read the same books as

they do and can learn as well as any doctor. You want to know how ignorant I am? I diagnosed ALL my medical problems and then made an

appointment with the doctors and asked them for testing for these specific problems and guess what. Their testing backed up my diagnosis.

There is something inherently wrong with a system when patients diagnose their own diseases because they have been ignored for years. Judging from the

world wide posts here to this forum, it seems to me we all have the same dopey doctors when it comes to diagnosing Celiac Disease.

Now, on to the pill. I have no problem whatsoever with anyone wanting to take a pill to make their lives a little easier. I would decline, except for maybe using them on occasion when traveling to countries where English is not the main language. I would still make every endeavor to eat gluten-free, though, and would use the pill as protection against cross contamination. Why do I say this? Because I eat far better than the general population and have the health to prove it. I take no other meds but thyroid hormone and it's because I eat so well and don't have the problems others can develop from eating a crappy diet. That someone would take a pill so they could consume fried junk on a regular basis or some hugely gluteny meal is beyond my understanding. That food isn't good for anyone, let alone Celiacs. I also am not emotionally attached to food so that solves many problems. There isn't but one or two items that I haven't been able to convert to gluten-free status anyway so that shows you how ignorant I am......silly me. :rolleyes: I am just SO deprived.......

In case you think there are no consequences to eating whatever you want.....um.....you know little about nutrition, don't you?

Clinical trials don't mean much either....there are a slew of meds that have been pulled from the market here in the States for killing people, that passed roster initially. Two years isn't nearly long enough to see whether a med will do more harm than good. I'm not one to pop a pill now and ask questions later.

Oh, yeah....and good luck with the cost. If they were even able to do this, which I highly doubt, can you imagine what they will be charging for it? Probably more than my gluten-free grocery bill every week!

There is no ignorance here on this board, only skepticism. Most people adjust very well to the gluten-free lifestyle, get over it and on with their lives. Being comfortable with a healthy diet makes the need for a pill, on a regular basis, unnecessary. What's so hard about that?

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I feel like many of us would benefit more not necessarily from the CHOICE of eating out, or eating food we traditionally ate before the onset of gluten intolerance/ celiac.

What I personally combat is how HORRENDOUS I feel when I take in even trace amounts of gluten just through cross contamination, from kissing my girlfriends lips, from maybe using a bar glass that wasn't cleaned properly. It is THIS that I would love to eschew... not having to wake up some days with a right hand covered in DH, feeling like a train wreck, and having a GI tract that moves at glacial pace. The neurlogical effect that our disease has on MY body is nothing short of amazing to me, and I would go into debt for the rest of my life to get rid of it.

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Researchers seem to think that a celiac's fondest wish is to be able to eat gluten again. That's true for some of us, but I think a lot of us would just like to eat gluten free more easily, conveniently, cheaply.

Right now the variety and availability of gluten free foods is increasing in grocery stores and restaurants. I wonder if that trend will reverse if a "cure" comes on the market. That would suck.

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Researchers seem to think that a celiac's fondest wish is to be able to eat gluten again. That's true for some of us, but I think a lot of us would just like to eat gluten free more easily, conveniently, cheaply.

Right now the variety and availability of gluten free foods is increasing in grocery stores and restaurants. I wonder if that trend will reverse if a "cure" comes on the market. That would suck.

I agree! I actually love the gluten free diet and what it has done for my health. I think it's a truly healthy way to eat and live.

My only desire is to be able to eat what I truly believe is gluten free while out at a restaurant or someone else's home AND IF it turns out to be CC'd I'd like to be able to avoid the horrible results.

I'll continue to do my part, but would take a pill as insurance before eating in an uncontrolled situation. I won't go off the diet, no matter how good the pill might be.

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Count me in among the few who would love to go back to eating the way I used to. My personal opinion is that I would love it if there was a cure - or at least something I could take on the rare occasions that I feel the need to eat whatever I want. On a day-to-day basis, living gluten-free is fine. It's the social events that are hard for me. I'm not a super-social person, it's not like I go out all the time, but I feel really uncomfortable when I go out for dinner with a group, go to parties, work dinners, etc. If I could take a pill beforehand and eat like everyone else, heck yes, I'd be all for it!

Now before everyone jumps on me, realize that I did not have any symptoms, except for a few weeks of stomach pain last spring (which went away on its own before my diagnosis). If I had been in agony for years, maybe I would feel differently. But you all have to realize that for asymptomatic people, this diagnosis is not welcome news.


Diagnosed Celiac in June 2008 by biopsy and blood tests.

DQ2.2 (HLA DQA1*0201:DQB1*0202) and DQ2.5trans (HLA DQA1*05) positive.

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Wow, I'm surprised by the overwhelmingly negative response to this upcoming clinical trial. There are many here who are proponents of the gluten-free diet as a healthier lifestyle alternative, but for me, it is a disease. As such, if there is a potential to reduce or eliminate some of the symptoms, I will openly welcome it.

To each their own, of course.

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Wow, I'm surprised by the overwhelmingly negative response to this upcoming clinical trial. There are many here who are proponents of the gluten-free diet as a healthier lifestyle alternative, but for me, it is a disease. As such, if there is a potential to reduce or eliminate some of the symptoms, I will openly welcome it.

To each their own, of course.

For me, it is not a disease, it is damage caused by a substance my body recognizes as a poison. I suspect it is a poison for many people who are diagnosed with other forms of damage, i.e. Type 2 diabetes, arthritis.....

I question what we call disease, after all what are they diagnosing? Damage to the villi and how many people have been told that they don't have Celiac because there isn't enough damage for a diagnosis?

I understand and appreciate why people would want to know they are safe to eat out but I would rather see more effort put into wholesome meals for everyone.


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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How does that saying go??? If it sounds too good to be true it probably is...


Gluten Free 10/11/08

Negative Blood test 08/08

Positive Biopsy 10/08

No family members diagnosed...but Symtoms seem to be the same.

Father- Diverticulitis

Paternal Grandmother Died from Colon Cancer when she was 38.

If you're going through hell, keep going.

-Winston Churchill

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