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A Cure For Celiac!


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18 replies to this topic

#1 ScarlettsMommy

 
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Posted 10 December 2011 - 10:33 PM

Is this possible? I was only diagnosed this week and this is my second day gluten free and i already cant take it anymore...so i googled this.

http://www.news-medi...ical-trial.aspx

What are your thoughts???
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#2 sa1937

 
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Posted 11 December 2011 - 06:08 AM

Is this possible? I was only diagnosed this week and this is my second day gluten free and i already cant take it anymore...so i googled this.

http://www.news-medi...ical-trial.aspx

What are your thoughts???

My thoughts are that I will never take the vaccine (if it gets beyond clinical trials) or ever go back to eating gluten again. Period.

I know that eating gluten-free does take some getting used to and is quite a change for most of us...just plain overwhelming for many. But it does get easier. Just hang in there and ask any questions you may have. We've all been there, done that.

Since you're so new, it's best to stick to a simple whole foods diet (fresh fruits, veggies, meats, eggs) and not try to find gluten-free replacements for processed foods. Many of us also give up dairy right away but I have been able to successfully add it back into my diet.
  • 4
Sylvia
Positive Celiac Blood Panel - Dec., 2009
Endoscopy with Positive Biopsy - April 9, 2010
Gluten Free - April 9, 2010

#3 WinterSong

 
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Posted 11 December 2011 - 06:47 AM

I would be very skeptical about this, and even if it does make it past clinical trials that won't be for years. If it's only your first few days gluten free, remember that even though it seems hard right now it does get easier with time (especially as you really start to feel better).
  • 3

Diagnosed with IBS - Fall 2007

Diagnosed with Celiac via blood test (tTg off the charts) - March 18th, 2011

Gluten free as of March 25th, 2011 and going strong!

Positive biopsy April 1st, 2011

 

Blood test results back down to normal levels November 2012


#4 Takala

 
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Posted 11 December 2011 - 08:46 AM

I'm starting now to study how to keep myself gluten free, if these so- called "cures" take off, and we get in a situation where food manufacturers aren't providing gluten free foods to the extent they are now.

The same medical profession that cannot diagnose me and cannot recognize the entire disease complex of related side effects - is now going to "cure" me.... not in this lifetime. Note how the study says it is for the HLA DQ2 types, which means a great many celiacs and gluten intolerants could be left out. The same thing happened with the arthritis ATNF drugs, the infusions/injections which were supposed to be the near miracle treatment, and instead from what I have studied on those arthritis boards they work for a certain number of people for a while, then the disease comes back with a vengeance and they have to keep rotating thru so many drugs anyway, they get sicker and sicker, so they end up addicted to a great many other drugs and don't have much of a life. Some treatment. Plus the pharma industry is extremely hostile to the concept of treating disease with diet - they have ruined many a support board and discussion blog. So I could see my future going something like this - "you haven't taken the vaccine? why not? you must not really be a *****" the same miserable attitude I've had with the medical profession and my mostly unmedicated arthritis.

Let them guinea pig on somebody else, I have accepted this, and don't have the imaginary problems Big Pharma wishes me to have so they can sell me something I don't need or want.
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#5 Judy3

 
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Posted 11 December 2011 - 08:53 AM

I just read the attachment about the vaccine. Not sure that I would participate if it becomes available. They don't know the long term affects and maybe the vaccine is merely taking the 'pain' out of the equation and the damage is still being done. It would take many years of study including long term affects for me to buy into it. I was sick for too many years to give in to something like that now. Time will tell. Maybe future generations can be helped <_<
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*Judy

Food allergies to fish, seafood, tree nuts, aspartame(Equal),flax seed, and many drugs
Stomach issues since childhood
Hypoglycemia (low blood sugar) age 6-44
Diabetes age 44 to present now going back to Hypoglycemia since gluten free.
Diagnosed with Fibromyalgia in 2005 and it's gone now that I'm aspartame and gluten free. Hmmm
Celiac disease- negative test in 2009, positive tests in Nov. 2010
Gluten free started 11/08/2010
Genetic tests positive- DQ2, positive -DQ6 (?) negative- DQ8 11/15/2010

#6 squirmingitch

 
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Posted 11 December 2011 - 09:59 AM

No need for me to even read it. Phama is interested in one thing only. $$$$$$$$$$$$$$$$$ Why do you think things like honey & other natural, easily available things don't get studied much? No $$$$$$$ for pharma companies. They'll lie, cheat, steal 7 kill you as long as they get $$$$$$$$$. No conscience.
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#7 Ellie84

 
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Posted 11 December 2011 - 11:23 PM

Have you ever received antibiotics for a large infection or any other life-saving medication? I think you should celebrate scientific progress and the comfortable, healthy life it offers you and your loved ones.

OT: I don't think such a vaccine can help existing patients who already have developed the disease. Prevention before celiac disease breaks out could work: it could suppress the genes before they become active.
If there were ever a cure for existing patients I'm not sure whether I would take it. It's become a way of life and I wouldn't want to change ways again.
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27, F, from the beautiful area of Twente in the Netherlands. English is not my first language, so I apologize for any errors.

Symptoms started in 2007, but no link to celiac disease was found until 2009. I learned of celiac disease through the internet, my doctor never recognized it. She put me on a diet before tests were done, so the initial tests failed. My GI advised me to do a gluten provocation, which had to be stopped too soon to take a reliable biopsy. Based on symptoms such as vitamin deficiencies, GI problems and osteopenia my diagnosis now is: glutenintolerant, suspected celiac disease. This diagnosis was in march 2010, and I've been so much better ever since.

#8 ravenwoodglass

 
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Posted 12 December 2011 - 09:17 AM

Have you ever received antibiotics for a large infection or any other life-saving medication? I think you should celebrate scientific progress and the comfortable, healthy life it offers you and your loved ones.

OT: I don't think such a vaccine can help existing patients who already have developed the disease. Prevention before celiac disease breaks out could work: it could suppress the genes before they become active.
If there were ever a cure for existing patients I'm not sure whether I would take it. It's become a way of life and I wouldn't want to change ways again.


The use of the word vaccine is a bit of a misnomer. This isn't intended for folks that don't have celiac already it is a treatment to allow diagnosed folks to resume a regular gluten filled diet.

As with others I am a bit leary of big Pharma. I was given pennicyln so much as a child that I now have a life threatening reaction to it. I was also given a new antibiotic that was very pricey and one dose caused hallucination and shut down my pancreas. It took months to recover from that. In the years before diagnosis I was given many, many drugs for symptoms and watched some of them pulled later from the market because of potentially deadly side effects.
In addition how many folks are walking around celiac and undiagnosed because Big Pharma has made 'tummy meds' non prescription so people treat the symptoms and continue to be damaged in ways that can cause nerve and brain issues and even cancer. I actually had doctors tell me just to take multiple doses of immodium daily rather than them actually trying to figure out why I had D 24/7.
I am thankful for the drugs that are really life saving and things like the polio vaccine but all the drugs for symptom relief IMHO keep many who are celiac from actually being diagnosed thus shortening their lives or taking away their quality of life.
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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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#9 beebs

 
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Posted 12 December 2011 - 04:01 PM

personally- i hope it works, i hope they start working on it for dq8 too. I woulnt have it so i could resume a gluten diet, but so that i dont have to worry about contamination anymore. The drs who r working on the vaccine here r passionate about celiac disease, they go all over the country trying to raise awarness and educate the masses on testing for celiac in the first instance, to put them into the category of money grubbing is insulting to say the least, the were out there trying to raise awarness well before there was even a question of a vaccine.
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HLA DQ8, gluten-free since January 2011

#10 beebs

 
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Posted 12 December 2011 - 04:02 PM

ps-the vaccine is for existing celiacs
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HLA DQ8, gluten-free since January 2011

#11 smsm

 
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Posted 13 December 2011 - 06:06 AM

I can understand the bitterness and cynical attitude - I didn't even have GI issues before I was diagnosed (I lived with debilitating pain and crazy dizziness, etc.) and I am so frustrated by the number of doctors that suggested I "stop picking up my children so much", stop nursing so I could take narcotics/steriods, that it is was all in my head, or that I do more "core" exercises. I was almost euphoric when I found out about celiac because I finally had an answer and it didn't involve drugs and going gluten free worked! BUT, I my two kids also were diagnosed and we are a traveling and on-the-go family. Despite unbelievable amount of planning ahead, cc and mistakes do happen and it really brings the pain and issues with the kids all flooding back. I think of small little things that I want for my kids besides convenience (I was wild and crazy in college! How will they kiss someone at a party without having to ask if that person had beer? :) ). If there is a treatment (I like the idea of the pill they are developing that you take just when you need to - I asked about this in a thread just before this one on this forum), I wouldn't dismiss it. I understand that there are people that have lived with this for a very long time and that many people have come to terms with the limitations. Then there is enormous crop of newbies (I am approaching one year at this) and the adjustment, while it does get easier, is not preferable to the ease and convenience of our gluten-filled life. I would never accept a drug or treatment without investigation and thought (I gave birth completely natural - I do NOT believe in taking drugs unless necessary), but I do believe a quality of life issue remains. Let's hope that a drug exists one day for those that want it, and those that don't want can continue on with the diet. Also, I really don't think the gluten-free industry will disappear - there are still many people that need it (allergies, intolerances, autism, people with other autoimmune disorders such as MS, etc.). The demand may diminish, but it won't go extinct.
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#12 Katrala

 
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Posted 13 December 2011 - 03:07 PM

If it eventually gets past all the testing and gets FDA approval, I'd go for it.

While I know pharmacy companies are more about money than people, etc. etc. I don't believe that most of them are out to get us. They are a business and profit is the bottom line. There are scientists who want to advance their career. If they can advance their career and get published by finding something that helps me - we both win.

If it treats celiac disease it's not about GI issues. It's about damage of the villi. The GI issues are a possible symptom of celiac disease, but not the definition of.

I don't really mind the gluten-free diet that much. It's a little inconvenient at times (and a lot at others,) but it's something I can live with. If this "vaccine" never hits shelves I won't be heartbroken. If it does, I won't be camping out waiting to be first in line, either.
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Positive Celiac (Blood & Biopsy) - April 2011
Peanut Allergy

#13 pricklypear1971

 
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Posted 13 December 2011 - 03:32 PM

I was reading about it yesterday (I think it was in the news section), and the new pr really emphasized "damage to the villi" portion. Since that's just a portion of the problem, it seems, for a lot of patients I doubt it will be a cure-all.

It is unknown, currently, the relationship between neuro symptoms and the villi. Also, what about DH?

I'm sure time will tell, and I sincerely wish them success because so many people could be helped, and I'm sure more advances will come after.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#14 Celtic Queen

 
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Posted 14 December 2011 - 06:38 AM

It is unknown, currently, the relationship between neuro symptoms and the villi. Also, what about DH?


That's my question too. Most of my symptoms are not gi related. Will the vaccine prevent the depression, brain fog, ataxia, dh, etc. that are also a huge part of the disease? Will it eliminate the risk of getting other autoimmune diseases in the future?

I guess I'd wait and see how other people are reacting to it before it I take it. I'm curious to see what the long-term effects will be.

Our society is so programmed for the "instant fix." We want everything fixed now with a drug. And that's not how Celiac treatment works. I think that's what's so frustrating for many people with the diet. It's a lifetime commitment.
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Blood tested 8-11 positive, Biopsy 9-11 negative (long story, most gastro drs. are morons)

gluten-free 7-11, Dairy Free (mostly) 8-13 - Everything but butter.  Can't live life without butter....
 

DS - negative blood test, just diagnosed with ADD and other learning disorders, DNA test positive - high risk

Issues related to gluten: depression, low iron, hair loss, positive ana test for lupus, low vitamin D, headache, sinusitis, environmental allergies, brain fog, GI problems, weight gain....the list goes on....


#15 Celtic Queen

 
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Posted 14 December 2011 - 06:42 AM

Forgot to add...ScarlettsMommy - You've only been on the diet 2 days. Your body is still detoxing from the gluten. Hang in there. Scientists have found properties in gluten that are like opiates. So think of it as if you're detoxing from the drug of gluten. It gets easier each day you "stay on the wagon."
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Blood tested 8-11 positive, Biopsy 9-11 negative (long story, most gastro drs. are morons)

gluten-free 7-11, Dairy Free (mostly) 8-13 - Everything but butter.  Can't live life without butter....
 

DS - negative blood test, just diagnosed with ADD and other learning disorders, DNA test positive - high risk

Issues related to gluten: depression, low iron, hair loss, positive ana test for lupus, low vitamin D, headache, sinusitis, environmental allergies, brain fog, GI problems, weight gain....the list goes on....





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