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grodeylocks

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About grodeylocks

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  1. When I was first diagnosed, I found such a great amount of comfort on this forum.

     

    Lately, I've noticed - not just in this thread - this self-satisfied notion among "long time" celiacs and a real condescension to anyone who hasn't been at it as long.

     

    It's turned me right off. Minimizing the experience of "newer" celiacs will drive them away. Like me.

    Couldn't agree more with you man. It seems that there are heavily biased opinions often spread on this forum that may or may not hold any basis in actual fact.


  2. First point. There has never been any proven link that vaccines cause autism. That is a myth. In fact if it wasn't for the extensive vaccination campaigns our life expenctancies would be drastically different. In all honesty I would be more trustworthy of xenobiotics coming out of pharma then I would of herbal supplements coming out of your local health food store as at least the big pharma drugs have to go through extensive testing of which 99 percent of all drugs fail.

     

    Second point. The enzyme based therapies would be cheap, and not unlike the digestive enzyme supplements. They would protect against cross contamination and would make it safer for us to eat out.

     

    Third point. The vaccine is interesting because it is the first such vaccine being developed for an autoimmune condition and may hold promise in preventing the development of other autoimmune disorders in addition to potentially calming the cycle of inflammation and repair that continues to go on in our gut long after we adopt a gluten free diet.

     

    I'm not saying lets get these drugs and eat unhealthy stuff again. I'm saying that this can become another tool in our fight against the disease in terms of protecting us against cross contamination or accidental glutenings. Will the vaccine have major side effects? I can't answer that now, but it doesnt mean that we shouldn't be conducting research on it. Can you really argue though with having a safety drug on you to protect when you eat out or from unseen accidental glutenings? And yes there are many people who take years to heal from this disease. I am a year and a half strictly gluten free and I am still not back to normal. Also, the zonulin modulating drug larazotide acetate shows promise for a multitude of autoimmune disorders and not only celiac disease and could be an amazing breakthrough. For those of you who aren't aware zonulin seems to play a major role in the triggering of celiac disease and regulates the intercellular tight junctions between epithelial cells. It has been shown to be spiked not only in celiacs but is also seen to spike prior to the development of other autoimmune disorders. It may also be the cause of leaky gut which we all know can cause us to be intolerant to all other sorts of foods other than gluten. It is possible that drug could be used to help speed up the repair of leaky gut.


  3. Pharmaceutical companies pay doctors to promote their drugs. This is a fact which is supported through the fact that there is complete visibility of this. I have seen my (previous) doctor's kickbacks on this. When he made it clear that he was interested in prescribing only name brand drugs, not things there were even generics for, for a medical condition he couldn't diagnose, it was obvious there was a problem with the way things were working. Many here have similar stories. I see the same damn thing with my husband. High cholesterol? Did his doctor ever tell him to change his diet? No, they prescribed a pill. High blood pressure? Did they advise a lifestyle and diet change? Nope. THERE'S A PILL FOR THAT!

     

    Why the hell should we take medication for things that don't need to be medicated? The idea is beyond preposterous. I've said before, but because you don't care to read that part of what I wrote, protection from occasional CC is a good thing. For dining out, for traveling, that sort of thing. But a day to day pill for something that is easily remedied by lifestyle change is, in plain English, complete bulls$#& and moneygrubbing.

     

    Once a drug is on the market the pharmaceutical company has one interest alone, making back the money they invested developing it. They run a business, they aren't philanthropists. I don't give two craps what industry you're in, you can't change the simple fact that they're in it for the money. That is what running a business is all about. Otherwise it would be called a charity.

    A vaccine wouldn't be something you take day to day. Oh yea pharmaceutical companies are horrible, why don't you tell that to all the cancer patients who are only alive today thanks to the development of modern drugs. Yup you're right. We secretly actually gather around in our labs and come up with ways to make you sick first. Then we purposely come up with drugs that don't cure you only keep you alive enough to keep you buying our product. Yup that's exactly how it works. This reminds me of a great saying, "never argue with an idiot, they'll drag you to their level and beat you with experience."


  4. You clearly have no understanding of how Pharma works, and this is coming from someone who as a Biochemist knows the field in and out. I'm assuming you are also one of those people that believe MSG is the devil and that all vaccinations are bad. You can make your broad generalizations without any backing what so ever because of you're own pessimistic view of the world but however don't ruin it for the rest of us that would like to have a cure or at least some sort of protection from cross contamination.

     

    You think Big Pharma wants to cure disease? Think again.

    There may be a few altruistic doctors out there, but Big Pharma isn't going to fund their research. The goal is to produce a drug that the patient becomes dependent upon for life. And that is exactly what this drug is about. People will come to depend on it, and Big Pharma milks the cash cow.

    Maybe you should get new glasses. The rose-color tint in the lenses might be affecting your thinking.


  5. So we shouldn't invest in alternative therapies?

    hey grodey - i read your link to a blog quoting an article about a study.  ya got me.  gimme the shot.   oh, wait.  there isn't one........

     

    eating gluten free is the best shot we have so far?  no?  who knows how long one was going to live if they didn't die.  pesky death   <_<

     

    and everybody on this board is going to heal up juuuuust fine, because we're less than 10% of all celiacs   :)


  6. After a year, a single year, the smell of fresh baked bread makes me physically ill. I've had many discussions with my husband about pharmaceutical companies. In the end, they want money and we are an uncracked market. They're working on a pill that we can take so we can eat gluten, and a vaccine and blah blah blah. A year ago I was wondering how much longer it would be until something catastrophic happened and I was on the verge of death. The simple step of not eating gluten has turned my life around so completely that I don't even recognize my life now and it is wonderful. I am so sick of "your life sucks because you can't eat bread so we're trying to fix it for you." No, my life is better now that it has ever been. There is absolutely nothing that would get me to give those scum sucking, bottom feeding, dirtbags money so I could eat poison.

    Wow what a gross generalization about many doctors and scientists working together for the ultimate benefit of society. That's not how it works at all.


  7. Once again you guys miss the complete point of my argument. The development of celiac drugs/vaccines is a great thing, I'm not sure why you chose to argue with me over something that multiple studies show is pretty true. You have the study and its findings right in front of you, its a lot more reliable then any random opinions from non-scientists on this board. You also completely avoided the whole argument about zonulin and the implications of it being spiked even years after adopting the gluten free diet. There clearly is a need for alternative therapies, there's nothing bad and only a lot to gain. I mean the whole anti-vaccine backlash I saw on this board kind of reminded me of the paranoia surrounding the whole don't vaccinate your kids because it causes autism thing. It's a bunch of unfounded paranoia. Science is


  8. "We extracted information on 465 consecutive coeliac patients studied before and during GFD"

     

    465 adult celiacs

     

    in ONE study--many of whom had remission of symptoms

     

     

    This does not equate to saying that "more than 90% of  celiacs do not recover on a gluten free diet"

    The science points in that direction. You can say whatever you want but the science speaks for itself and you can't argue with that. I've already shown you that over 90 percent of celiacs dont recover on a gluten free diet alone and by recover I mean return fully back to normal. My point is that clearly we need more weapons at our disposal in addition to a gluten free diet and so I support full-heartedly big Pharma and their efforts at addressing the needs of celiac.


  9. Also, even years after being completely gluten free, as shown in this study by Dr. Fasano (http://www.ncbi.nlm.nih.gov/pubmed/16635908) zonulin levels remain remarkably more elevated when compared to normal healthy intestines. This may explain all of our secondary intolerances as macromolecules are more easily allowed to seep through the epithelial paracellular space. The drug being developed by Alba which is targeting the zonulin pathway could be beneficial for us in this way as well.


  10. http://jcp.bmj.com/content/55/6/424.full

     

    From the "take home messages" of this study: "It is not uncommon to find a raised intraepithelial lymphocyte (IEL) count with normal villous architecture in the duodenum"

     

    This means that of the "(65%) had 'remission' with persistent intraepithelial lymphocytosis" that saying that they aren't healed is clinically irrelevant and wrong.

    There is a difference between saying the word healed and completely back to normal. There is clear evidence for the need for alternative therapies and that is the bottom line. We should be embracing the development of alternative therapies to be used in conjunction with a gluten free diet.


  11. Got it from this study. http://www.ncbi.nlm.nih.gov/pubmed/19302264  Dapsone is a gnarly drug for sure. The drugs in development now are showing some promise. The approach by Alvine Pharmaceuticals was to actually design proteases which specifically target and break down the inflammatory sequence markers that elicit the whole immune attack when exposed to the wheat, barley or rye gluten. These should have no more of a side effect than digestive enzymes do. What is interesting to note is another study (http://www.ncbi.nlm.nih.gov/pubmed/22298027) which shows that for a good portion of us, prolamines in corn are causing an immune response as well.

     

    I am curious where you get that 90% figure. I have very severe reactions and have been well able to avoid gluten now for many years. Did it take me a while to get the gluten free lifestyle down? Sure it did. It is however quite possible to avoid gluten once you learn what you need to do.  

    There are some of us who have residual damage from years of misdiagnosis and damage to many different body organs. That residual damage doesn't mean we haven't recovered from celiac gluten free. It means that the organs that were damaged were not able to completely repair. Doctors are getting much better at diagnosing us earlier though so the numbers of us that are damaged for years before knowing that gluten was an issue are becoming much lower than even 10 years ago.

    I personally would not have an interest in a vaccine. If others want to use one that is their choice. My big fear is that after one is developed doctors will push the pharmacutical 'cure' instead of advising people to change their diet. We already see that in folks with DH whose doctors prescribe Dapsone but never tell them the gluten-free diet will also will do away with the lesions without the risk of side effects.


  12. Okay, grodeylocks,

     

     I read the study you posted the link to and I still do not see where it says 

     

    "that despite adhering to a gluten free diet more than 90% of celiacs don't fully recover. "

    "After a median 16 months GFD, 38 (8%) patients had histological 'normalization'". That means even with a complete gluten free diet the other 92% never fully recovered to normal.


  13. 1.  Every industry has good and bad--Pharma is no different.  I should remind a poster in this thread that there were a lot more people dying of cardiovascular disease in the 60's than there are today.  Thank you "BIG PHARMA" for blood pressure medicine that helps prevent strokes.  The reality is, when society puts money behind research for a disease state, things happen.  People that were dying with AIDS in the 80's have a much better shot at life if they are diagnosed today....  Thanks to...  Wait for it...  Pharmaceutical research.  Most of the algorithms used today by HCP's are the result of pharmaceutical research.  Don't get me wrong, they love to pad the coffers but every now and again we get some great therapies.

     

    2.  I will stay on the sideline until more long term data surfaces.  Even at that, I plan to stay gluten free.  I know what my body and immune system are right now today and I can handle that.  Its better than the unknown of tweaking things with a vaccine that will alter my immune system.  Thats a little scary to me.

     

    3.  There may be people out there that are having much more severe symptoms than me who need relief that it could provide.  I don't know that it will but I can see someone with refractory sprue looking for some relief.  

    We are pretty close to at least drugs that will allow us to have a defense against cross contamination and that is amazing., Imagine being able to eat out without having to worry.


  14. Vaccine and other types of celiac drugs are amazing. Did you know that despite adhering to a gluten free diet more than 90% of celiacs don't fully recover. It is virtually impossible to avoid gluten. A vaccine would be a life saver and would retrain you're immune system to accept gluten. This vaccine probably will also be beneficial to other autoimmune disorders. Why wouldn't you want to support the development of alternate therapies.


  15. Lucky for you guys, science is way ahead of policy in this realm so that we probably will have much easier lives in about 5 years or so. I never once said anyone wasn't involved enough, all I said was that we should confront what isn't right when it happens and if you already do that well then great. You get on my case for getting all fired up and passionate for the celiac cause. That's ridiculous. I wasn't rude to them in any way however I was given a very rude response from them and I was upset. It's not like I got all angry and crazy with them there. But the fact of the matter is that not unlike many other illnesses there is discrimination that exists towards celiacs in some cases, and we need to unite and face this when ever it happens.


  16. I did explain nicely, and they were quite rude to me, that's why I was so outraged. I usually am quite nice until you tick me off. I am a biochemist by training and so I like to deal with painstaking details. I am a diagnosed dermatitis herpetiformis sufferer so that means I have celiac. I was aware of those events that happened in the past as well. I am just trying to get you guys to fight back. The gluten free lifestyle needs not be so painstaking. If only stricter laws were in place such as clearly labelling ingredients as containing gluten, or that when something in a restaurant is labelled gluten free that it is indeed gluten free our lives would be so much easier. All of this is acheivable. Perhaps discrimination isn't the right word, but the fact is that I do have the right to be angry that an entity can deny me from bringing something in that clearly does no harm to no one. I mean it's not like I am saying that every place needs to provide gluten free options. However, is it really all that wrong of me to bring my own food to a place of social gathering so that I can not have to worry about getting sick. Really who is that harming? Nobody!

     

    btw a lot of times when you go out you have to say you have a severe allergy or else no one will take you serious.


  17. When people refuse to take your illness seriously call them out on it, when people scoff and call us ridiculous and that our problems are made up speak up against them, I mean I even have a celiac friend who had bought a burger and brought her own gluten-free bread to put the burger in and was told she couldnt bring in outside food. I say resist!!!!!


  18. I am all for supporting my fellow celiacs and I spend a lot of my time doing just that, but now, you are straying off on tangents well beyond the scope of your original topic and taking things off the internet to try and support YOUR cause.

     

    The majority of us just do not agree that all of these fall under the same umbrella of "discrimination"

     

    Your b%$@# is "no food", others are  bullying and others are legit civil rights arguments.

     

    Stop mixing apples and oranges to make your point. It does not work..

    You again. I thought you were out! :P


  19. This would be deplorable indeed.

    But then should soup kitchens be forced to serve gluten free options. I'm not sure how it works in that case. I think everyone in this country should have the right to eat food they can handle. I know this is a ridiculous point but just imagine how truly vulnerable we could be.


  20. The point of this topic was to point out that discrimination exists towards celiacs and that it is our duty to stand up and protect other celiacs from this type of thing. The whole stadium thing was just one incident to which I felt personally discriminated against. You can agree with me or disagree whether or not that was so, however you can't deny that many people have view us with certain stereotypes which I believe is expressed in cases such as that disney channel portrayal of a child with celiac disease.

     

    I am just calling on all of you to confront this type of behavior whenever we encounter it, and to support your fellow celiac in these cases.


  21. Maybe if you had long undiagnosed celiac and it created OTHER health conditions, illnesses and diseases causing permanent damage, you MIGHT be able to prove a disability under the disabiilites act. Good luck with that.

    I think you just have an ax to grind at this point.

     

    Good luck.

     

    "Evaluating Your Residual Functional Capacity

    If your symptoms of celiac disease are not severe enough to equal one of the disability listings above, then the next step is for the SSA to determine your residual functional capacity (RFC). Your RFC describes the most amount of work that you can perform, and is labeled as sedentary, light, medium, or heavy work. To determine your RFC, the SSA will evaluate your ability to perform work tasks such as sitting, standing, walking, interacting with coworkers and supervisors, and following simple instructions.

    If you can't perform at least sedentary work (for instance, an inability to sit for six hours per day and stand/walk for two hours per day), you should be found disabled.

    If you are over age 50, you could be found disabled even if you can perform sedentary or light work, if your education and prior job skills didn't prepare you to do sedentary or light work. 

    It would be helpful for your doctor to write out an opinion stating any limitations that you have as a result of your celiac disease. If you need to take frequent rest room breaks throughout the day, your RFC should include that limitation. In addition, if you suffer from any type of abdominal pain that could affect your ability to concentrate on tasks, this should be in your RFC. If you are unable to work on a regular basis, or you would miss several days of work per month as a result of your disorder, then this should be in your RFC, and the SSA could find you disabled."

     

    http://www.disabilitysecrets.com/resources/social-security-disability-coverage/benefits-celiac-disease.htm

    celiac is considered an "invisible disability" by the ADA