Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

News About Cures For Celiac Disease Other Than Gf


Guest gliX

Recommended Posts

Guest gliX

Hey, I've been gluten free for 2 years and am curious, is there any news about some possible cure to celiac disease? I read once that some vitamin was being developed, so when swallowed, gluten and wheat could be eaten. I haven't heard anything lately, does anyone know anything? I am not talking about the obvious cure: being gluten-free.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Guest Viola

As far as I know the 'pill' is still a dream. No one knows if it will protect the intestine. They are doing a stem cell type research now. Hopefully something will come of that. But for now, you and the rest of us are stuck with a gluten free diet.

And you must admit ... considering some diseases out there, that's not so bad :P

Link to comment
Share on other sites
KaitiUSA Enthusiast

Nothing so far...the only thing is the diet.

They are working on a pill that supposedly would allow us to eat gluten but I'm very skeptical of it. That's a ways off though.

I really don't find celiac to be bad at all...

Link to comment
Share on other sites
Guest gliX

same here its not that bad at all, but it would be nice to have papa johns

Link to comment
Share on other sites
Rikki Tikki Explorer

I went to the celiac conference at Stanford in October. They said a pill is on the way. But here's the catch, after taking it you can have one piece of bread a month!

I wouldn't do it. I just don't want to be somebody's lab rat. Plus, I am afraid of the damage it might do to my body, not just the pill but eating the gluten.

Link to comment
Share on other sites
KaitiUSA Enthusiast

yeah im afraid it will stop a reaction but not the damage...I don't want it when it comes out...eating gluten free is better for my body anyway.

Link to comment
Share on other sites
Guest Viola

That's too funny ... why would anyone take a pill so they could have one piece of bread a month! Wouldn't be worth it even if they could garantee there would be no damage! :o:lol: Doesn't make much sense to me anyway.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



plantime Contributor

One piece of bread a month?!? And how much will we be expected to pay for the pill so we can eat that much bread? A whole lot more than it's worth, IMO!!!

Link to comment
Share on other sites
KaitiUSA Enthusiast

Wow a whole piece of bread...we could nibble on a crumb everyday for a month :lol:

Link to comment
Share on other sites
Guest gliX

one piece of bread a month, that's strange

Link to comment
Share on other sites
celiac3270 Collaborator

Dr. Green talked about 6 things they're researching...I'll make a post under the coping with section on the conference later.

Link to comment
Share on other sites
plantime Contributor

I'll be looking for it!

Link to comment
Share on other sites
celiac3270 Collaborator

The 6 things they're researching:

  • Gentically modify wheat -- go back to ancient wheat
  • Induce tolerance to gluten (in the way breastfeeding does)
  • Oral peptidases -- an enzyme that digests the gliadin. Must digest all, unlike with pills taken for lactose intolerance, which only need to digest some.
  • Block tTG
  • Block binding to the DQ groove
  • Block cytolcines

Link to comment
Share on other sites
Sharon C. Explorer

I breast-fed my son for his entire first year, but it didn't stop him from getting Celiac. Also, what angers me is that I followed the advice written in a baby book, that recommended spiking your infant's cereal with wheat germ for some extra nutrition.

Recently there was a radio talk show featuring celiac and I learned that in a country where Celiac was rampant, they realized a popular baby formula contained wheat gluten. When they changed the baby formula, the outbreak stopped. I think these "experts" writing these baby books should keep their advice to themselves. I also followed advice in a pregancy book that peanut butter was a nutritious snack, and I ate a lot of it. My son is also allergic to peanuts. Makes me think I should ignore the "experts".

Link to comment
Share on other sites
Ruth Enthusiast

Funny, It seems like it should be the other way around... find dietary solutions for diseases that currently require medication...

Although it's not easy, I'd rather change my diet than take a pill any day.

Link to comment
Share on other sites
kactuskandee Apprentice

Sharon--and then those baby formulas they are using soy in is proving to create thyroid disease in infants---then they have it for life. You were probably better off doing what you did, despite the out come..and how were you to know anyway?

celiac3270--interesting research..this is where we want our dollars going.

But right now? To eat one slice of bread a month? That is rather ridiculous. I've been allergic to wheat for over 25 years and after 8 years of strict adherence I managed to swing the equivalent of about 2 slices of bread a week without my throat starting to close. Since then I've been upgraded to gluten intolerant but was likely that way all my life and didn't know it because of not having the advanced testing methods they have today. Now that I can't have my 2 slices a week, nor barley or rye, do I miss it? Not one bit!

But I have to admit a normal slice of pizza would be nice to have in this lifetime.

Kandee

Link to comment
Share on other sites
Rikki Tikki Explorer

I agree, I am not going to chance taking a pill. Forget the piece of bread a month. The starnge thing is Sharon C, I breast-fed one of my children, and she is the only one that is positive for celiac. Think there is a connection?

Link to comment
Share on other sites
celiac3270 Collaborator

That would by no means cause celiac disease--breast feeding is preventative.

Link to comment
Share on other sites
Rikki Tikki Explorer

I know celiac3270, that's what I always thought and why I did it. I just can't help but wonder now......

Link to comment
Share on other sites
KaitiUSA Enthusiast

I wonder too...I was breastfed for a long time and intoduced to wheat late....didn't prevent celiac disease

Link to comment
Share on other sites
Guest Viola

If celiac disease is genetic, why would breast feeding-or not- make any difference? You are either born with the genes or not. :rolleyes: Just my thoughts :)

Link to comment
Share on other sites
SharonF Contributor

From my (incredibly limited) understanding, celiac isn't always triggered right at birth--it can come from stress, surgery, or what I suspect was my case, pregnancy.

So you breastfeed the kid and build up their immunity from those triggers causing celiac disease, among other diseases.

(I'm not a lactation consultant, but I'll play one on the internet.)

Link to comment
Share on other sites
mommida Enthusiast

I moved in October and can't find the book I am trying to quote on breastfeeding.

A mother's breastmilk is ready at about 7 months of pregnancy. There is a seemingly constant change in the breastmilk itself to care for the infant.

Foremilk (the begining of a feeding) has less fat in it than hindmilk (the end of feeding time). More fat at the end of the feeding gives the infant the feeling of being full. They feel this related to the statistic that breast fed infantsare not as likely to be overweight as adults.

The fat Lipids that are in breast milk are trying to be simulated from fish in the new formulas.

Breastmilk antibodies killed every cancer cell the scientist tested it against.

Breastmilk is said to delay onset of Celiac because the stomach and intestines of a breastfed child is "stronger and healthier" than a formula fed child. The ph balance is correct and has no harmful bacteria in the ideal breastfeeding situation. (I am trying to carefull not to over generalize, and reality can be very different from scientist say is supposed to happen.)

The book was fascinating and I am trying to find it the moving boxes. It was not by LaLeche.

Laura

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,501
    • Most Online (within 30 mins)
      7,748

    fine one
    Newest Member
    fine one
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • powerofpositivethinking
      I haven't been on this forum for a long time, but it was absolutely wonderful during the diagnostic process!  My path for celiac disease diagnosis was the following: -Had normal IgA level, and my only serology positive test was the DGP IgG -Deficiencies in both Vitamins D and K that did not increase at first despite massive supplementation -Diagnosis of fat malabsorption both total and neutral -Diagnosis of severe exocrine pancreatic insufficiency (EPI) -Testing was completed to rule out causes of EPI, and the only one not ruled out was celiac. -Both traditional endoscopy and pill capsule endoscopy yielded negative results for biopsy confirmation, but my GI doctor said that both procedures simply could have missed the damaged spots. -EPI and fat malabsorption resolved after taking Creon for 6 months since my EPI was caused by celiac -23 and Me said I don't have either of the two prominent genes for celiac disease   Remember that you might not have 'textbook' symptoms, but you still may have celiac disease.   Also, I am SO incredibly grateful for this site for all the learning it has allowed me to do. I have a senior dog, and these last few weeks with her were very scary! After two hospital stays, she finally received an IBD diagnosis after having gastroenteritis and pancreatitis. I know that celiac disease is not IBD, however, through reading this site, I learned more about it. I was relieved when I found out she had IBD and not cancer this past Wednesday. I know IBD can be managed thanks to what I've learned here!  So celiac.com, not only did you help me, but you helped my pup too! Thank you ❤️  
    • SuzanneL
      It was tTG IGG that was flagged high. I'm not sure about the other stuff. I'm still eating my normal stuff. 
    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal 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.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • 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.
×
×
  • Create New...