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Claire

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Claire Collaborator

In case you missed this:

Celiac Disease Drug Therapy Study Participants Needed

Celiac.com 11/08/2005 - Alba Therapeutics Corp. in conjunction with the University of Maryland Center for Celiac Disease Research is searching for volunteers to take part in a study of a new medication that is designed to block the effects of gluten on the intestinal tract of celiac patients.

Subjects must meet the following criteria:

• Be between 18 - 59 years of age;

• Have biopsy proven celiac disease;

• Must have been on a gluten free diet for at least 6 months.

The company will pay expenses for those that qualify for inclusion in the study to bring them to Baltimore for 3 days (December 9-11, 2005) and will pay subjects $1,100.00 for participating.

No contact number here but calling Alba Therapeutics in Baltimore should do it. Note that the 'gold standard' here for diagnosis is the biospy. Strange but true. The British studies showed that a very high percentage of celiac patients do not have a positive biopsy. Claire

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jenvan Collaborator

thanks for the info! guess this is where the pedal meets the metal. who is willing to sacrifice themselves for research ? :) i could use that $1,100. that's like 2 mos of gluten-free grocery bills !! so, i'm curious, is anyone going to try it?

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Canadian Karen Community Regular

I phoned and left a message on the answering machine but haven't heard anything back yet. I figure I have nothing to lose.

Maybe they don't want to pay my way from Canada!!! LOL!

Karen

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skoki-mom Explorer

I would do it in a second, but I've only been gluten-free for not even 3 months yet. Get paid to take a pill and eat a burger, sounds too good to be true!

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MySuicidalTurtle Enthusiast

I wouldn't want to eat gluten, though.

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Guest gfinnebraska

I would do it ~ but I don't have the "official diagnosis" to do it. :( Oh well. Please post and let us know if you do it and how it went! :)

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lovegrov Collaborator

I think the idea is to go online and register, not call. Anyway, I registered yesterday as I am biopsy (and blood test) diagnosed. Haven't heard anything yet.

I don't know the details, but I can only assume the testing would involve eating gluten.

richard

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jenvan Collaborator

Let us know what you hear...

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VydorScope Proficient

bah I would do this too if I could :(

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Rusla Enthusiast

I would do it but I have been gluten-free for three day and I have not had the biopsy. They would not want to pay to fly me down there either probably. I would be a great one to try it on because if there is an unusual reaction, I will have it, then on the other hand one could grow three heads from it and get other medical problems. They could save tons of money by doing it with any prisoners that have Celiac.

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happygirl Collaborator

I had sent in my info via the Center for Celiac Research (UMB) and was contacted last week!!!

I am going up there the last week of November for "screening" --- bloodwork, EKG, etc to make sure I qualify.

Then, if I do, I'll be up there the weekend of Dec 9th-11th.

After completing a master's degree that focused on research methodology, I had a lot of questions!!! I emailed the guy I talked to a whole laundry list of questions, including more info on exactly will be done (i.e., do they give us a pill and then eat gluten? do they then take blood to measure our antibodies? what are we going to be eating) as well as an explanation of how they think this drug is going to work. The guy that I spoke with was very, very nice and helpful...he just wrote me to tell me he is working on answering all my questions.

So....I'll let you know more when I find out!!!! :D

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celiac3270 Collaborator

Yes! This is very, very promising that they're moving to the human testing phase. You guys will have to tell us how it goes if any of you are "tested."

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tarnalberry Community Regular

I would if I had a biopsy dx, but alas... none for me.

Good luck, to all of you trying to get into the study. And thank you!

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sonjaf Rookie

I would do it, but I don't want to leave my kids for any amount of time. I am glad to see that there is research of some sort going on. I would love to hear the results, or at least how they are "testing" treatment options. I think I would be too scared to get sick again to purposely eat gluten. Hum....

Sonja

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mdono Explorer

where did you register? I am definitely interested...

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Guest CD_Surviver
In case you missed this:

Celiac Disease Drug Therapy Study Participants Needed

Celiac.com 11/08/2005 - Alba Therapeutics Corp. in conjunction with the University of Maryland Center for Celiac Disease Research is searching for volunteers to take part in a study of a new medication that is designed to block the effects of gluten on the intestinal tract of celiac patients.

Subjects must meet the following criteria:

•  Be between 18 - 59 years of age;

•  Have biopsy proven celiac disease;

•  Must have been on a gluten free diet for at least 6 months.

The company will pay expenses for those that qualify for inclusion in the study to bring them to Baltimore for 3 days (December 9-11, 2005) and will pay subjects $1,100.00 for participating.

No contact number here but calling Alba Therapeutics in Baltimore should do it. Note that the 'gold standard' here for diagnosis is the biospy.  Strange but true.  The British studies showed that a very high percentage of celiac patients do not have a positive biopsy.    Claire

<{POST_SNAPBACK}>

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Guest CD_Surviver

Hey i have been gluten free for 10 years now but i am only 16 so that is bad for me because i was diagnosed and they did the biopsy to find out.

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Survivor Newbie

How fuuny - I became an official member today also, and I picked a similar name to the last person! LOL!

.I am very glad to learn about this resarch Claire.

I hope that this research will help you also. Mary

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Survivor Newbie
Hey i have been gluten free for 10 years now but i am only 16 so that is bad for me because i was diagnosed and they did the biopsy to find out.

<{POST_SNAPBACK}>

If they did a biopsy isn;t that OK?

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Rachel--24 Collaborator
If they did a biopsy isn;t that OK?

<{POST_SNAPBACK}>

You have to be between the ages of 18-59. He is only 16...so he doesnt qualify. :(

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ravenwoodglass Mentor
In case you missed this:

Celiac Disease Drug Therapy Study Participants Needed

Celiac.com 11/08/2005 - Alba Therapeutics Corp. in conjunction with the University of Maryland Center for Celiac Disease Research is searching for volunteers to take part in a study of a new medication that is designed to block the effects of gluten on the intestinal tract of celiac patients.

Subjects must meet the following criteria:

•  Be between 18 - 59 years of age;

•  Have biopsy proven celiac disease;

•  Must have been on a gluten free diet for at least 6 months.

The company will pay expenses for those that qualify for inclusion in the study to bring them to Baltimore for 3 days (December 9-11, 2005) and will pay subjects $1,100.00 for participating.

No contact number here but calling Alba Therapeutics in Baltimore should do it. Note that the 'gold standard' here for diagnosis is the biospy.  Strange but true.  The British studies showed that a very high percentage of celiac patients do not have a positive biopsy.    Claire

<{POST_SNAPBACK}>

This sounds great except....In every drug trial they need to have a control group that is recieving a placebo instead of the drug. What do I think my chances would be of getting the placebo? With my luck real good, do I want to go through that pain, not for a million dollars. The only good thing about this in my mind is that they once they find a pill, undoubtedly real expensive and with lots of side effects that need monitoring ($$$$$), the doctors in this country might actually look for celiac. Personally I will stick with the diet but might use the pills for a night out at a restaurant to protect me from the inevitable crosscontamination. If they would stop using this poison in so many foods, (and there are alternitives after all) we wouldn't need their pills. But then again Americans have been taught for 100 years that meds take care of any problem, if one doesn't work try another, or two, as long as we get symptom relief who cares if they're killing us. (Sorry after years of toxic meds when what I needed was a change in diet I have little trust left in the AMA)

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Rachel--24 Collaborator
If they would stop using this poison in so many foods, (and there are alternitives after all) we wouldn't need their pills.

<{POST_SNAPBACK}>

Well said...I couldnt agree more. I'm sure celiac would become common knowledge if there was a drug that docs could prescribe but would that also affect the availability of gluten-free foods? If Celiacs could eat gluten without suffering symptoms (by taking a drug) what would happen to the gluten-free market? :unsure:

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Claire Collaborator
Well said...I couldnt agree more. I'm sure celiac would become common knowledge if there was a drug that docs could prescribe but would that also affect the availability of gluten-free foods?  If Celiacs could eat gluten without suffering symptoms (by taking a drug) what would happen to the gluten-free market?  :unsure:

<{POST_SNAPBACK}>

Hi Rachel - I have been thinking about this too. This 'find' is still quite awhile from the marketplace but when it does become available there are many celiacs who will gravitate to it and that certainly will impact the gluten free market. It could become very difficult for people wanting to remain on the diet (i.e. not wanting to go for drug relief) if gluten-free foods become more scarce.

I have thought of something else also. For years patients with severe GI problems were told they had IBS. It became the catch all diagnosis for GI problems. The same thing happened in the field of mental health - everybody was either schizophrenic or bipolar. Now if there is a drug for celiac I fear that this too will become a 'catch all' and patients will be wrongfully diagnosed - the line between IBS and celiac even further blurred.

So maybe this isn't all good. Claire

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Rachel--24 Collaborator
Hi Rachel - I have been thinking about this too. This 'find' is still quite awhile from the marketplace but when it does become available there are many celiacs who will gravitate to it and that certainly will impact the gluten free market. It could become very difficult for people wanting to remain on the diet (i.e. not wanting to go for drug relief) if gluten-free foods become more scarce.

I have thought of something else also. For years patients with severe GI problems were told they had IBS. It became the catch all diagnosis for GI problems. The same thing happened in the field of mental health - everybody was either schizophrenic or bipolar. Now if there is a drug for celiac I fear that this too will become a 'catch all' and patients will be wrongfully diagnosed - the line between IBS and celiac even further blurred.

So maybe this isn't all good.  Claire

<{POST_SNAPBACK}>

I'm also wondering if the drug and its effectiveness is being gauged only by determining whether villi damage is occurring or not. Since we know that gluten affects other areas of the body i.e. tissues, brain function, causes AI diseases...etc...how do we know that gluten is not still causing damage to other areas?

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laurelfla Enthusiast

perhaps they'll keep track of other symptoms that occur. this is all so interesting! dang i wish i could participate! i will have been gluten-free for 6 mos by the time of the study... i say aug bc that is when i got the diagnosis but i was on the diet before all that... hmmm

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    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. There have been many posts on this subject on the forum, it is interesting to read of your experiences. Although I've not had TMJ, except from time to time have had a bit of mild tension in my jaw, I have had issues with my trigeminal nerve.  I read that sometimes a damaged nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.   Thank you again for your input.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
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