Jump to content

  • 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:
    Support Our Content
    eNewsletter
    Donate

Is There A Cure?

KayJay

Recommended Posts

KayJay Enthusiast
KayJay
Posted

To make a long story short my dh was taking to friends that know someone in Australia with Celiac. They said she went to a doctor and he is all knowing of Celiac and has a cure or something like that. She went thorough the treatment or took a pill (they don't know) but for the last 9 months she eats gluten and feels great.

So is there a cure? The lady who is cured is on vacation for 2 more weeks and then they are going to give me her contact information.

Anyone know about this Dr. in Australia or this cure? Sounds good to me :D

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

Celiac.com Sponsor (A8-M):


Nantzie Collaborator
Nantzie
Posted

I would have a hard time believing that this is a cure. Cure to me would mean that the immune reaction would cease to happen, and there would be no risk of any intestinal damage. That would be a very difficult thing to verify. Because you can have celiac, with intestinal damage and positive biopsy and not have any symptoms whatsoever.

The only thing I would believe at this point in history would be that maybe someone will come up with something that might help or prevent symptoms, but not a cure. If this man was saying that he had found something that would help supress symptoms of being glutened, I would be open to that.

I'm very open to alternative things, but I'm also not willing to think that there is a cure to something that has a genetic component. I would suspect that he either doesn't know enough about celiac to know the details of the disease, or he's boasting and overstating his product or method.

I'd love to hear more about this if you get more info. Eventually I'm sure there will be a cure for celiac, and who knows if it will be figured out by a big pharmaceutical company like Pfizer or by a guy in Australia.

Nancy

gfp Enthusiast
gfp
Posted
I would have a hard time believing that this is a cure. Cure to me would mean that the immune reaction would cease to happen, and there would be no risk of any intestinal damage. That would be a very difficult thing to verify. Because you can have celiac, with intestinal damage and positive biopsy and not have any symptoms whatsoever.

The only thing I would believe at this point in history would be that maybe someone will come up with something that might help or prevent symptoms, but not a cure. If this man was saying that he had found something that would help supress symptoms of being glutened, I would be open to that.

I'm very open to alternative things, but I'm also not willing to think that there is a cure to something that has a genetic component. I would suspect that he either doesn't know enough about celiac to know the details of the disease, or he's boasting and overstating his product or method.

I'd love to hear more about this if you get more info. Eventually I'm sure there will be a cure for celiac, and who knows if it will be figured out by a big pharmaceutical company like Pfizer or by a guy in Australia.

Nancy

Last time someone in Australia said they had a cure for ulcers it turned out to be true!

and that was against all medical knowledge.

aggieceliac Newbie
aggieceliac
Posted
Last time someone in Australia said they had a cure for ulcers it turned out to be true!

and that was against all medical knowledge.

When I went to my doctor last she mentioned something similar. She knows a doctor down there with a pill of some sorts. A long name and I can't remember the abbreviation for it though. She mentioned it's something that most doctor's don't really "believe". He had done something else in the medical field before that no one believed and ended up winning an award or something like that. So who knows. Maybe this is why I've always wanted to visit Australia.

mamaw Community Regular
mamaw
Posted

I wonder if the doctor is DR.Williams???? Please keep us posted, I'm a believer in alternative meds.........You non-believers can call me crazy!!!!!!!1

mamaw

amber-rose Contributor
amber-rose
Posted

Wow! Thats so awesome!! I hope that it truly works! But it WOULD take awhile for it to come to America because the FDA (or something like that) would have to test it and approve it. But that is so exciting!

KaitiUSA Enthusiast
KaitiUSA
Posted

There is no cure at this point and I don't think there is a "cure". I know they were testing some sort of pill so you will be able to ingest gluten but thats not a cure because you will have to take pills like every day of your life. I would rather stay gluten free and have them on hand in case of accidental glutenings.

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

Celiac.com Sponsor (A8-M):


gfp Enthusiast
gfp
Posted
There is no cure at this point and I don't think there is a "cure". I know they were testing some sort of pill so you will be able to ingest gluten but thats not a cure because you will have to take pills like every day of your life. I would rather stay gluten free and have them on hand in case of accidental glutenings.

That is exactly what most MD's and especially GI's said about taking cyclohexane (a very cheap antibiotic) against being on rantitidine (the wonder drug) for life. Indeed they continued to say that for 5 years after the discovery and tests and had the antibiotics not already been FDA approved the US still wouldn't have a cure for ulcers.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to EssexMum's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Concerning GP advice

      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the...
    2. Scott Adams
      - Scott Adams replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      Here are some articles on cross-reactivity and celiac disease:
    3. knitty kitty
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      327

      Terrible Neurological Symptoms

      @HectorConvector, Here are some articles about "dry Beriberi" and neuropathy. I hope you've been able to acquire thiamine hydrochloride or Benfotiamine. I'm concerned. Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke's Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the ...
    4. cristiana
      - cristiana replied to EssexMum's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Concerning GP advice

      Good evening @EssexMum You are quite right to be concerned about this situation. Once diagnosed as coeliac, always a coeliac, and the way to heal is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019. My spoken French isn't bad...
    5. EssexMum
      - EssexMum posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Concerning GP advice

      Hi, I am after some advice re my step daughter and her Coeliac Disease. She is 9 years old and had a very limited diet before being diagnosed (very fussy and very lenient parents), since being diagnosed it has become hard to find places out that will cater for her, but we manage. History: She had been having severe tummy pains on and off every...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,635
    • Most Online (within 30 mins)
      7,748
    DWZ
    Newest Member
    DWZ
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Concerning GP advice

      By trents · Posted

      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
    • Scott Adams
      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      By Scott Adams · Posted

      Here are some articles on cross-reactivity and celiac disease:      
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      @HectorConvector, Here are some articles about "dry Beriberi" and neuropathy.  I hope you've been able to acquire thiamine hydrochloride or Benfotiamine.  I'm concerned.   Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke's Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature https://pubmed.ncbi.nlm.nih.gov/30862772/ Dry Beriberi Manifesting as Acute Inflammatory Demyelinating Polyneuropathy in a Patient With Decompensated Alcohol-Induced Cirrhosis https://pmc.ncbi.nlm.nih.gov/articles/PMC7707918/ A Rare Case of Thiamine Deficiency Leading to Dry Beriberi, Peripheral Neuropathy, and Torsades De Pointes https://pmc.ncbi.nlm.nih.gov/articles/PMC10723625/
    • cristiana
      Concerning GP advice

      By cristiana · Posted

      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
    • EssexMum
      Concerning GP advice

      By EssexMum · Posted

      Hi, I am after some advice re my step daughter and her Coeliac Disease. She is 9 years old and had a very limited diet before being diagnosed (very fussy and very lenient parents), since being diagnosed it has become hard to find places out that will cater for her, but we manage.  History: She had been having severe tummy pains on and off every few months so had a bunch of tests and eventually was diagnosed with celiac disease a number of months ago. We was told that she is at a very high level and should avoid gluten for the rest of her lift, we was told that the gluten she has been eating has damaged the 'fingers' inside her and they will not replenish. We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesnt react to the gluten straight away, it will be a build up and then the pains start. We was advised that by her not reacting straight away, it did not mean it wasnt harming her inside. We was given literature about buying a separate toaster and cutting board etc to avoid cross contamination and have been checking all food labels etc.  Problem: the issue is the novelty seems to have worn off with her Mum and we are now posed with a situation. They are going on holiday to Disneyland Paris for 3 nights and she phoned the hotel who said they cannot cater for gluten free. She phoned the GP and had a conversation and then told my partner that the GP had said it was fine for her to have gluten for the 3-4 days. He questioned it and she said no its fine, she hasnt had it for months so a few days wont hurt and she exposed to it anyway without knowing so it will be fine and shes not ruining her holiday etc.   My partner could see from the online notes that his ex wife had told the doctor that the child does not follow a strict gluten-free diet anyway - not true. At least not with us! My partner requested a call with the same doctor who told him that it is the mums discretion and that the child should be monitored for reactions - he explained that the issue is she doesnt react straight away. The GP said no its all mums discretion and she knows best. We are going to try to speak to the consultant at the hospital, but I just wanted to gauge some thoughts. It just seems bizarre to me that we can go from being told to avoid gluten for the rest of her life and how harmful it is to her body, to now it being ok for her to have it for a few days. Thanks in advance  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.