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:
    Support Our Content
    eNewsletter
    Donate

Multiple Drug Trials Going On Relating To Celiac

CGally81

By CGally81
in Related Issues & Disorders

Recommended Posts

CGally81 Enthusiast
CGally81
Posted

According to Open Original Shared Link , multiple drug trials are going on regarding celiac disease. I don't have the celiac genes, so I likely have non-celiac gluten sensitivity, but I have the same symptoms and am still messed up by gluten wherever I encounter it, so I'm hoping that some of this stuff treats gluten intolerance as well.

Anyway, they have two drugs designed to treat the disease, and a trial involving hookworm infection. I'd gladly get myself infected with hookworm... too bad I don't live in Australia and am therefore not eligible.

Here's what they got:

RECRUITING: Phase IIb Study to Study the Efficacy of AT1001 to Treat Celiac Disease

Purpose: To see if multiple doses of the experimental drug AT1001 prevent changes in the intestines during a six-week gluten challenge.

Eligibility: Adults ages 18 to 72 who have been on a gluten-free diet for at least six months.

Sponsor: Alba Therapeutics.

RECRUITING: Can a Very High Result From a Screening Test for Celiac Disease be Used to Diagnose Celiac Disease?

Purpose: To determine if the TTG screening test is as accurate as an endoscopy for diagnosing celiac disease

Eligibility: Patients ages 2 months to 18 years who are undergoing an upper G.I. endoscopy.

Sponsor: University of British Columbia.

RECRUITING: Inoculating Celiac Disease Patients With the Human Hookworm Necator Americanus: Evaluating Immunity and Gluten Sensitivity

Purpose: To determine if a human hookworm may prove useful in the management of celiac disease.

Eligibility: Adults who have celiac disease.

Sponsor: Princess Alexandra Hospital, Brisbane, Australia.

RECRUITING: Phase II Study of CCX282-B in Patients With Celiac Disease

Purpose: To determine if CCX282-B prevents gluten intolerance in patients with celiac disease.

Eligibility: Adults ages 18 to 75 who have been on a gluten-free diet for at least two years.

Sponsor: ChemoCentryx.

Unfortuantely, this doesn't seem to help those of us who are non-celiac but affected by gluten. I really hope awareness of that increases, or there's crossover in effects of some of these drugs.

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

Celiac.com Sponsor (A8-M):


Gemini Experienced
Gemini
Posted

I find it mind boggling that anyone would infect themselves with hook worm in an attempt to be able to eat gluten again! :blink::huh::o

That's just gross.......

modiddly16 Enthusiast
modiddly16
Posted

agreed....bread and pizza, as delicious as they are......I wouldn't swallow a hookwork to consume them again. ever.

CGally81 Enthusiast
CGally81
Posted
  • Author
agreed....bread and pizza, as delicious as they are......I wouldn't swallow a hookwork to consume them again. ever.

I would gladly be infected with hookworm if it means not having to worry about cross contamination for the rest of my life (or at least the next few years, as long as the hookworm stays alive).

WW340 Rookie
WW340
Posted

Actually, the hook worms are being studied as a solution to a variety of autoimmune diseases. For those of us that suffer from a variety of autoimmune effects, the hook worm may very well be a real godsend.

I might not consider it just to be able to eat gluten, but I sure would consider it to get control of my body again.

CGally81 Enthusiast
CGally81
Posted
  • Author
Actually, the hook worms are being studied as a solution to a variety of autoimmune diseases. For those of us that suffer from a variety of autoimmune effects, the hook worm may very well be a real godsend.

I might not consider it just to be able to eat gluten, but I sure would consider it to get control of my body again.

You know more on this subject than I do. If they can help solve many people's problems, that would be just awesome. What do you know about this? How far along are the studies, and what has been found?

I for one would love to have it to guard against any additional problems Celiac could cause. As someone with Asperger's, I wouldn't go rush to eat gluten (though there are enzymes for that aimed at autistics/Asperger's people that are said to be super effective), but like you, I would love to "get control of my body again", as you put it so well.

WW340 Rookie
WW340
Posted
You know more on this subject than I do. If they can help solve many people's problems, that would be just awesome. What do you know about this? How far along are the studies, and what has been found?

I for one would love to have it to guard against any additional problems Celiac could cause. As someone with Asperger's, I wouldn't go rush to eat gluten (though there are enzymes for that aimed at autistics/Asperger's people that are said to be super effective), but like you, I would love to "get control of my body again", as you put it so well.

Actually, I don't know a lot. I have just read some articles online. Here are a few articles you can check out. They are doing studies with hookworms for celiac disease, allergies and asthma, MS, and chron's disease. These are just a few articles that I found.

Open Original Shared Link

Open Original Shared Link

Open Original Shared LinkOpen Original Shared Link

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

Celiac.com Sponsor (A8-M):


CGally81 Enthusiast
CGally81
Posted
  • Author
Actually, I don't know a lot. I have just read some articles online. Here are a few articles you can check out. They are doing studies with hookworms for celiac disease, allergies and asthma, MS, and chron's disease. These are just a few articles that I found.

Open Original Shared Link

Open Original Shared Link

Open Original Shared LinkOpen Original Shared Link

I found that there are places online that sell hookworms you can use on yourself. I sent an inquiry to one. If there's a good chance of this working, I may well shell out the thousands of dollars it costs (after all, my credit union account exists for emergencies, and doesn't health count as an emergency?), and go get myself infected.

Open Original Shared Link is one such place. I'm nervous about this not working... though I'll only spend my money if I have good reason to think it would.

Jestgar Rising Star
Jestgar
Posted

:blink: :blink: :blink:

I'd take a vacation to somewhere with endemic hookworm before I'd send money to some unknown internet site.

Gemini Experienced
Gemini
Posted
Actually, the hook worms are being studied as a solution to a variety of autoimmune diseases. For those of us that suffer from a variety of autoimmune effects, the hook worm may very well be a real godsend.

I might not consider it just to be able to eat gluten, but I sure would consider it to get control of my body again.

I have a total of 4 autoimmune diseases and have managed to make a great recovery without using any old worm! ;) It is possible but it may take time. I was also an older, diagnosed Celiac so if I can do it, anyone can. It's not terribly difficult to avoid CC and the longer you go, the better at it you will become.

Are there still times when taking a gluten hit will happen? Absolutely, but you will get better within a short amount of time and life goes on. That may sound simplistic but I take this disease in stride and do my best so it won't control my life. So far, with some effort, it's working and I am extremely sensitive too. You can live a pretty normal life with Celiac, without infecting yourself with a worm in the hopes you may be able to sustain small hits without worry. I can't imagine use of a hookworm wouldn't come with it's own set of drawbacks.

WW340 Rookie
WW340
Posted
I have a total of 4 autoimmune diseases and have managed to make a great recovery without using any old worm! ;) It is possible but it may take time. I was also an older, diagnosed Celiac so if I can do it, anyone can. It's not terribly difficult to avoid CC and the longer you go, the better at it you will become.

Are there still times when taking a gluten hit will happen? Absolutely, but you will get better within a short amount of time and life goes on. That may sound simplistic but I take this disease in stride and do my best so it won't control my life. So far, with some effort, it's working and I am extremely sensitive too. You can live a pretty normal life with Celiac, without infecting yourself with a worm in the hopes you may be able to sustain small hits without worry. I can't imagine use of a hookworm wouldn't come with it's own set of drawbacks.

You would need to read about the studies, and not just assume that it is all about eating gluten. I could care less about eating gluten ever again in my life. I have been gluten free for almost 3 years now without a problem. I rarely eat out, and can cook anything I desire to eat gluten free.

In spite of eating gluten free, I am being assaulted by some unknown inflammatory process that even the doctors cannot diagnose, but are still trying.

If you read any of the articles submitted, you would see that it is believed that the hookworms would keep the immune system busy attacking the worms, rather than attacking the host body.

I am glad that going gluten free has solved all of your problems, for me, it has solved some, but I have some serious sequelae that will improve with time, but I have new problems cropping up over the past 3 years.

Gemini Experienced
Gemini
Posted
You would need to read about the studies, and not just assume that it is all about eating gluten. I could care less about eating gluten ever again in my life. I have been gluten free for almost 3 years now without a problem. I rarely eat out, and can cook anything I desire to eat gluten free.

There is the distinct possibility that you have other intolerances that are causing the problems you describe. I did and when I eliminated those, my inflammation and problems improved yet again. You are correct, it's not all about eating gluten. You have to look at all the other allergens also and make sure their are no problems with those.

In spite of eating gluten free, I am being assaulted by some unknown inflammatory process that even the doctors cannot diagnose, but are still trying.

Sometimes, when you trigger for other autoimmune problems, doctors do not do a good job of figuring it out. There is so much overlap with symptoms, thye have a hard time diagnosing which one it may be. You may also have to accept that not all people get remarkably better, even with strict adherence to the gluten-free diet. When the autoimmune chain triggers, it stays active in some people and calms down with others. That's usually the point where you have to consider the meds they offer and that's a hard choice to make.

If you read any of the articles submitted, you would see that it is believed that the hookworms would keep the immune system busy attacking the worms, rather than attacking the host body.

I understand their theory on hookworms but I still would be not willing to infect myself with a parasite that may cause more long term damage to your intestinal tract down the road. It can cause all the same problems of undiagnosed Celiac Disease, including serious anemia, so it seems many could be back to square one. Better to calm the immune system down than try to keep it distracted with a parasite.

I guess for those who would consider infecting themselves should be commended for being so brave! I just couldn't do it so it's good I have no desire/need to! :o

CGally81 Enthusiast
CGally81
Posted
  • Author
I understand their theory on hookworms but I still would be not willing to infect myself with a parasite that may cause more long term damage to your intestinal tract down the road. It can cause all the same problems of undiagnosed Celiac Disease, including serious anemia, so it seems many could be back to square one. Better to calm the immune system down than try to keep it distracted with a parasite.

I guess for those who would consider infecting themselves should be commended for being so brave! I just couldn't do it so it's good I have no desire/need to! :o

I say, give me that hookworm. It's said to not cause those problems at all. It just lives peacably, causing no damage (occasionally it sucks some blood, but you have more than enough and it won't affect you), and modifies the immune system to not attack gluten. That's it.

ciavyn Contributor
ciavyn
Posted

This is truly fascinating, but it's naive to think that there are no side effects to having a parasite living inside you. Our evolving cultural habits have changed the makeup of our bodies and have been both a blessing and a curse as new diseases develop and more intense strains attack, forcing us to use even stronger, and often damaging medicines to combat them. We've been waging war against parasites in our bodies for many years. To reintroduce them, and think that it will be a symbiotic harmony is wishful thinking. However, if studies can show the long-term effects of such a treatment, it definitely offers a ray of hope.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,769
    • Most Online (within 30 mins)
      7,748
    Francie Bailey
    Newest Member
    Francie Bailey
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • HilaryM
      New onset constant gas

      By HilaryM · Posted

      Hi all, I’ve been following a strict gluten-free diet for 1.5 years since I was diagnosed. The last few weeks though I’ve suffered almost continual bloated stomach and flatulence. It literally is almost constant - and I was never this way before. I can’t think of any change to my diet, activity, etc. I’m dying - it’s so uncomfortable and embarrassing to feel like I have zero control over this. Any ideas? Thank you!
    • knitty kitty
      Refractory or super sensitive?

      By knitty kitty · Posted

      @Levi, How are you doing?  Sorry I missed your posts.   How's your thyroid?  Did your Vitamin D stabilize?  Do you have long hauler syndrome after Covid? Consider switching to Vitamin D 3, the natural form of Vitamin D.  Vitamin D 2 is the synthetic form of Vitamin D which the body can have difficulty changing to an active form.  Also, Thiamine is needed to active Vitamin D.   Hypothyroidism can be caused by Thiamine deficiency.  The thyroid is an organ that uses lots of thiamine.  sometimes thyroid deficiency can also cause hyperthyroidism, or swings between both hyper- and hypo-thyroidism. We need more Thiamine when we're sick with an infection (like Covid) or injured.  We need more Thiamine when we're physically active.  We need more Thiamine when we're emotionally stressed or worried.  Our brain uses the more Thiamine just thinking than our muscles do while running a marathon.  Thiamine is extremely important in fighting infections.  Covid patients and long haulers have found taking Thiamine has improved their survival rate and long term symptoms.   Consider taking a Thiamine supplement like Benfotiamine which has been scientifically shown to promote intestinal healing.  Damaged villi need thiamine to grow back.   Be sure to take a magnesium supplement, too.  Thiamine and magnesium make life sustaining enzymes together.  You also need magnesium to keep calcium in the bones.  The thyroid regulates calcium.  A wonky thyroid can lead to reduced bone density.   Remember the B vitamins all work together in concert so adding a B Complex to Benfotiamine and magnesium supplements and Vitamin C would be great in improving absorption of nutrients while we're dealing with celiac disease. Namaste
    • lizzie42
      Gluten free and oat free bars not sugary?

      By lizzie42 · Posted

      I'm looking for bars or non perishable snacks for my 2 kids. They are 5 and 3. The 3 year old seems sensitive to oats also. We do a lot of long hikes and bike rides. They eat mostly fresh foods but for these rides and hikes we need easy and non perishable. Also that taste good! We do a lot of larabars and freeze dried apples but those are getting old. Any ideas? 
    • knitty kitty
      Inflammation and Menier’s disease link?

      By knitty kitty · Posted

      Oh, @MagsM, Sorry you had that happen with Niacin.  500mg is the maximum amount of Niacin one should take.  Niacin works hand in hand with Thiamine, so a big influx like that can imbalance thiamine if not supplemented at the same time.  All the B vitamins work together in concert.  Niacin in doses at 500 mg or above have been used by doctors to lower triglycerides levels and raise HDL, the good cholesterol.  Pharmaceuticals to do the same thing are more expensive and thus more profitable for physicians. Has your doctor tested you for H. Pylori?  An infection by H. Pylori can be tested for by your doctor.  H. Pylori can cause low tTg IgA results, too.   I would hold off on the microbiome test for now.  Your microbiome is going to change when you go gluten free.  Your microbiome will change when you start taking Thiamine.  Thiamine supplementation influences which microbes grow in the intestines, encouraging beneficial bacteria and getting rid of the bad ones.  Thiamine in the form Benfothiamine promotes intestinal healing, too.  Adopting the Autoimmune Protocol Diet (by Dr. Sarah Ballantyne, a Celiac herself) after diagnosis will also change your microbiome.  This is the best diet to heal and recover, IMO.   If you're going to have more testing done for vitamin deficiencies, don't take vitamin supplements beforehand, otherwise the tests will measure the vitamin supplements in your bloodstream and give false results.  Same thing will happen if you take B vitamin shots.  The supplements you mentioned (Arterosil HP and Vascanox HP) are herbal support and do not contain all eight B vitamins.  There's no harm in taking them, but I prefer a B Complex that contains all the B vitamins in activated forms like Life Extension's Bioactive Complete B Complex.  All the B vitamins work together in concert.  Magnesium is important to supplement as thiamine and magnesium make life sustaining enzymes together.  Do not buy supplements containing Thiamine Mononitrate because it is not biologically active.  It is very hard for the body to utilize.  Most of it (70%) passes out unused.    Yes, my Meniere's disease has not returned.  I was deficient in Vitamin D.  I took high doses of Vitamin D 3 to correct the deficiency quickly.  I also took TTFD (tetrahydrofurfuryl disulfide) which is a form of thiamine different from Benfotiamine.  TTFD can cross the blood brain barrier without a carrier, so it can get into the brain very easily.  TTFD helps the Vagus nerve function.  The Vagus nerve regulates the ears and balance, and also the digestive system.  I like Allithiamine by Ecological Formulas.  I also like Thiamax by Objective Nutrients.  You should have improvements within a hour with TTFD.  TTFD is much stronger, so lower doses will give amazing benefits (50-200 mg).   I hope this helps give you some direction to take on your journey!
    • MagsM
      Inflammation and Menier’s disease link?

      By MagsM · Posted

      Thank you so much for this in depth analysis. I am currently taking Vit D3/K2 5000IU daily.i started taking a flushing Niacin but foolishly took a 500mg tab and nearly passed out! I have just ordered a gut microbiome genome test and it will be interesting to see what my current balance of microbes are. After I finish diagnosis I will definitely go gluten free. Diagnosis will inform exactly how strict I’ll need to be regarding cross contamination etc. my focus will be on healing the gut. I have also been focusing on the oral microbiome - cutting out FL and using more natural products as well as daily oil pulling. I read from some of your other forum entries about Benfothiamine and I’ll definitely order that. I’ll make sure my doc orders more detailed vitamin and mineral panel plus total IGA as well as the DGP-IGA and DGP-IGG tests. We will see if I can get the endoscopic biopsy done. Do you think I should request Vitamin B shots to get me started?  My daily vitamin protocol will likely be VitD/K2 5000IU, Benfothiamin 300x2, Niacin (flushing) 50mg working up to 300mg. I also take a EPA/DHA as well as some vascular support (Arterosil HP and Vascanox HP) as well as Magnesium at night. Which B complex brand do you like? I will see what the gut microbiome test comes back with. I’m sure they will try to sell me pre/probiotics and maybe some digestive enzymes. What are you thought on those? I’m curious if you managed to go into full remission from your Ménière’s disease? Thank you so much for your thoughtful insight. I know that building back up my gut health and immune health will help in so many ways as well as protecting me from many other major diseases as I go into my 60s and beyond. 
×
×
  • Create New...