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68 Comments

  1. 1

    mpv61

    I’d love for there to be a Lactaid-type pill to take to avoid gluten damage. Am I going to risk my health, eating gluten to help anyone develop this? Nope. Not worth it.

    Reply
    1. 1.1

      cheryl

      Are you lactose intolerant? Those Lactaid type pills don’t always work. The fail to work with ice cream most of the time.
      Now this is no big deal with lactose because it is not damaging the body. It just feels like it is causing serious damage.

      One could reasonably expect the same results from a gluten-type pill. Only with celiac, gluten destroys the villi. There is a massive difference.

      Reply
      1. 1.1.1

        mpv61

        No, but my daughter was having some problems with lactose after her celiac diagnosis. (I also have celiac disease, and one other of my children has it.) I would think the Lactaid pills probably work better with smaller amounts.

        If they end up with a similar “Gluten-aid,” I’d only use it when I was eating out, still eating GF and following all the GF protocols but hoping that if I ended up with cross-contamination anyway (which can certainly happen), it would help minimize the effects.

        Reply
  2. 2

    Laura

    Qualified Nurse and chemistry student here ( also parent of coeliac).
    I think these “experts” probably need to sod off.
    Once qualified with my chemistry degree, I promise I’ll use my knowledge to do some good :)

    Reply
    1. 2.1

      Gluten Dude

      I have got to work the phrase “sod off” into my vocabulary.

      Reply
      1. 2.1.1

        Rosie

        Add this one too.
        Never! Not on my Nelly!

        Reply
  3. 3

    Hap

    I have my lifelong cure, for which I’m most grateful, and my cure doesn’t involve taking pills / meds which I don’t do for any other ailments anyway. I’m returning to good health again by eating healthy whole real glutenless food, also for which I’m most grateful.

    I send my kindest regards to our dedicated researchers (regardless of their motives, altruistic or mercenary €£¥$$$) and my encouragement thereto for the benefit of others; however, similar to Briscoe Darling’s encouragement to Deputy Fife (More power to ya) I’m personally good like I currently am so no need to research for me.
    ——–
    Barney Fife: Adios, amigo.
    Briscoe Darling: [to Andy] He one of ours?
    Andy Taylor: Oh, sure.
    Briscoe Darling: [to Barney] More power to ya

    Reply
    1. 3.1

      mpv61

      The lifelong cure of gluten avoidance works pretty well when I’m in charge of my food. But when I’m traveling or have/want to eat at a restaurant, even when I do my very best to choose a place which should be safe and I convey the importance that the food is 100% GF, not cross-contaminated, I never know; it’s always a risk. I don’t need a “Yippee, bring on the brioche!” cure, but I’d like to have something I can take when eating out or when visiting family to lessen the possibility of damage.

      Reply
      1. 3.1.1

        Hap

        I agree with you mpv61, eating out is always a risk, which is why I must stay in charge of my own food at all times for the rest of my life – I have no choice. So such pills are not something I’ll ever need because I no longer assume ANY risks. I’ve had gluten caused: 3 types of cancer, 5 retina surgeries and just last month had another walnut sized tumor removed from under my tongue through my neck. My cancer causing inflammation from gluten for so many undiagnosed years are about to arrive at a calculated end. Stopping eating out and always being in charge of my own food now is proving to be correct course of action for me after almost 4 yrs of determining how free of gluten I must be, which has been medically determined to be absolutely free thereof.

        My best regards and wishes on your journeys. We are planning for Sept to be my first flight and out-of-state travel since 2010. I’m looking forward to the journey but I’ll still only eat food I’ve prepared myself on the trip. Some days my “food” will merely be only sustenance. Some days my food will be really great. Such is my life now and I’m happy and grateful to still be living it.

        Reply
        1. 3.1.1.1

          GF and more

          Hap, I entirely agree. I must be in control of my food always, even if that means not eating out. I won’t accept the risk otherwise. Like you, I’ve had so many other health complications that I know being 100% free of gluten always is the only way to be truly healthy. I will and do cook all whole unprocessed and do my best to control the secondary conditions I have.

          Reply
        2. 3.1.1.2

          Deb

          Same for me, Hap. I will just drink water rather than eat food I did not prepare with my own GF bowls, spoons, etc. I am not fortunate enough to have a spouse who cares enough about my health to allow me to live in a GF house, so I have to take all other precautions very seriously. I suppose I should divorce him, but after 32 years of marriage, approaching 65 years of age, and not being in the best of health (thanks to 45 years of undiagnosed Celiac), I haven’t found a way to do that unless I go the route of being homeless. So sorry for your health issues. Ain’t Celiac a blast?

          Reply
  4. 4

    Sammy Name

    I get that they will need to do trials in order to test potential medicines, but given that so little is understood about Celiac Disease as a whole – the causes, full effects, etc. etc., it is not worth jeopardizing health in order to ‘help develop’ a ‘cure’ that probably won’t work. I was going to say “it doesn’t make sense to” – but it does make sense. To a pharmaceutical company, who wants another high return on a drug that can be marketed as a miracle pill. #capitalistmedicine :(

    Reply
    1. 4.2

      Jane

      Totally agree with you and The Dude!!! ‘Nuf said!

      Reply
  5. 5

    Lindsey

    I say: OUCH.

    Reply
  6. 6
  7. 7

    KateJ

    Coeliac UK is a great organisation. I’m a paid up member and welcome the support they give.
    However, I don’t always agree with their judgments. For example, a number of products are listed in their directory (a fantastic resource) which contain barley malt extract. I understand that the overall gluten content is below 20ppm, but my tummy doesn’t agree that these foods are good, so I don’t eat them. Other foods contain codex wheat (something else I avoid) or gluten free oats (and are therefore not suitable for many of us) – and yet CUK is fairly confident that these are universally (as opposed to mostly) acceptable, so doesn’t add any markers to help people choose food that’s right for them.
    I suppose the only upside is that in the UK, any guinea pigs will receive proper payment!
    I control my health, my health doesn’t control me.

    Reply
    1. 7.1

      Gluten Dude

      Again…I know both of these organizations do great work and am grateful to them.

      Reply
  8. 8

    Karri

    I’d hate to be the poor person who gets the placebo pill in the study!

    Reply
  9. 9

    Tricia

    I disagree that people reading this study will think that Celiac is less serious. Especially if they see that two organizations are dedicated to researching Celiac almost exclusively, if anything it will bring attention to how common and serious the disease is. They don’t conduct clinical trials for something that isn’t serious.
    Would I volunteer for the study? Probably not. But they aren’t forcing anyone.
    Anything that’s new is going to be kind of scary or seem unsafe. But we keep asking for research and a cure and that’s what they’re trying to do. If anyone volunteers, good luck to you and I hope they find something helpful.

    Reply
    1. 9.1

      GF and more

      I disagree with you. Celiac people are asking for research, but not research that tries to see how much gluten they can get away with eating. I am all for research into the other medical conditions and risks that are associated with celiac (blood, immune, allergy, neuro, etc.) But I can do just fine without gluten, thanks.

      The problem is that when they start saying that some gluten is ‘not so bad’ or okay for people who don’t have outward symptoms, it feeds into the corporations and restaurants who are not as diligent with preventing cross-contamination, and others who think that there is something wrong with ‘GF means GF – zero is zero’. Those standards start eroding in the minds of the common people.

      Reply
  10. 10

    Shannon

    Ooooo Heck NO if I have one grain I’m barfing my brains out for three days that’s just a start. It takes me at least 4 weeks to get past the other symptoms let alone the damages to my intestines. So is it ok for a person with a peanut allergy to have one peanut and not have there throat swell? Risking death? YaNo they get a EPI Pen to help we get nothing except damages to our intestines. It’s not ok!!!!I’m sorry ranting ❤️🙏 you Dude.

    Reply
    1. 10.1

      GF and more

      Right there with you Shannon. Echoing every word. Salutations to the Dude for calling this out for the disaster and danger it is.

      Reply
  11. 11

    Jeanne

    I say I’ll take a pass on the gluten. Gluten makes me sick. I would also hope that my friend who is an insulin-dependent diabetic won’t be asked to not take her shots. And my student who’s allergic to tree nuts won’t be asked to have a few. Yeah. Nope, you can’t pay me enough to willing do something that will make me sick.

    Reply
    1. 11.1

      GF and more

      “I would also hope that my friend who is an insulin-dependent diabetic won’t be asked to not take her shots. And my student who’s allergic to tree nuts won’t be asked to have a few. Yeah.”

      Exactly! I don’t see why researchers ask people with celiac to put poison in their mouths.

      (I was going to say that they likely wouldn’t ask someone seriously allergic to peanuts or tree nuts to have a few, so why celiac people, but then I remembered reading about a group that is trying to expose peanut allergy people to their allergen on purpose to ‘acclimate’ them to it. At any rate, celiac isn’t an allergy – it’s an autoimmune condition. But it shows how insane people can be.)

      Reply
  12. 12

    Coeliac CC

    Gluten Dude beware of Coeliac UK .

    Last year in the UK there was a contamination of gluten in Gluten free products , I’m sure you probably heard the story before ? But if you didn’t here is an article about it http://www.bbc.co.uk/news/uk-33040348

    I was unfortunately affected by the contamination I had Coeliac stomach pains for around 12 days , and lost 2 and a half stone over the next 6 months, which worried my doctor and I’m currently having to repeat a number of stomach tests.

    Coeliac UK downplayed the contamination and I don’t think they took the side of Coeliac’s and were very disappointing for a charity that is suppose to support Coeliac’s.

    The company who made the mistake is linked financially with CUK and they choose $$$ over Coeliac’s health.

    I saw this bread trial a few weeks ago , it seems like some many GF products are starting to contain gluten which is worrying to say the least especially for the super sensitive Coeliac’s!

    Now the interesting thing is this new type of bread experiment contains 21-100ppm and the Genius contamination products contained apparently 5-80ppm and made myself and many others who’s comments I saw posted on social media at the time ill and caused a lot of pain.

    Which shows CUK learn nothing from the Genius contamination last year beacuse si 5-80ppm is way too much for some Coeliac’s so why is there even talk of a bread containing even more ppm being made avaliable? Maybe $$$$$$$$$

    Reply
    1. 12.1

      GF and more

      Coeliac CC, I’m sorry for what happened to you. I am also sensitive to even the slightest particle of gluten (meaning outwardly sensitive – I know others are too but without symptoms). And yes, money is sadly a corrupting factor. Thank you for putting others on alert about Coeliac UK.

      As I said below, this experimentation with ‘how much gluten can we get away with’ is a dangerous game. The answer is none. The sooner people accept that and start researching how to get people to move forward – while studying the other conditions associated with celiac – the better.

      Reply
      1. 12.1.1

        Coeliac CC

        Thanks GF and more . I think some Coeliac charities really don’t get how sensitive some Coeliac’s really can be. Some charities are obsessed by money while most do good work the money can chasing can really damage the image of the charity.

        Reply
    2. 12.2

      Gluten Dude

      Thanks for letting us know. I’m not crazy about certain celiac associations having their logo on suspect items here in the U.S. (see Cheerios).

      Reply
  13. 13

    GF and more

    I am furious. Why do people keep trying to invent a pill for everything!!! (Well, yes, the profit has something to do with it I’m sure…) In my mind this goes with the whole “gluten removed” craze that is equally dangerous and the certification of products that have barley malt extract but because it is below 20ppm it is somehow okay. No gluten is okay. The sooner that people accept that as their new reality, the better. By funding these studies, as Dude says, it feeds the notion that we have to find a way to be able to eat gluten. We don’t. We’ll be just fine without it. In fact, it is the only sure way to be healthy. And it is not such a sacrifice – really, it’s not.

    In many ways, things were better before celiac started getting so much attention because then it was more of a “accept the reality – you can be healthy and well if you don’t eat gluten.” Eat whole, fresh, non-cross-contaminated foods. Yes, it is a learning curve and work to track things down, but it is the sure way not to be sick. Now, it is the trendy thing to see how much gluten people can get away with eating (answer = none), how foods can be modified to make them acceptable (what about the long long list of whole foods that already *are* GF naturally?), and how to make money off the whole cycle.

    Dude, I am right there with you on everything you said in this post. Lack of symptoms is a lousy way to filter people, since we have established that the impact can be hidden. And these organizations that people generally consider reputable in the GF community are losing my respect very quickly. They are succumbing to the same temptations as all the corporations we see making money off the GF issue.

    Besides, celiac disease has so much more associated with it than not being able to eat gluten. Because I have celiac, I also have associated secondary health conditions/risks that make my life harder. It shows in my blood composition (white cells, platelets, ability to clot, etc.), in my intestinal damage, in my other allergic reactions, in my risk for contracting other serious conditions. Celiac doesn’t come by itself – it brings co-diseases. Those are the actual medical problems that I wish would be investigated, not how to eat a little gluten and get away with it. If research focused on the impact that celiac disease has on an individual’s overall health apart from the consumption/avoidance of gluten, a fuller picture could emerge that would actually help people.

    Reply
    1. 13.1

      Coeliac CC

      GF and more, the whole gluten removed is terrible , I just don’t understand it. Apart from money…

      I have always said eating GF was much much easier a decade ago , not so much products in the shops , but the products avaliable were mostly higher quality and had better taste , nowdays it seems so much cheap rubbish ingridents go into GF products , which I’m not sure are the best thing for the sensitive guts of Coeliac’s?

      Sorry to hear you have extra health problems , I also do and I find not too much information avaliable for connected CD problems. But what I have researched a lot is it depends how much damage is done before diagnosis is if you get a lot of extra health problems. What needs to be done is things to help people who have CD and other related issue’s and to prevent them in the first place. Apparently in Italy they test children age 5 for CD just to catch the illness early and to reduce damage , having the CD tests avaliable for every child in every country and diagnosing CD early and preventing extra health problems is far more important then all these foods with gluten and other useless research, but I guess it doesn’t bring enough money testing people early and preventing long term damage.

      Reply
  14. 14

    Maria

    First, studies have shown celiac disease patients may ingest gluten without showing symptoms and at the same time their villi gets really damaged. What is to be extremely sensitive, then, if you do not show symptoms when your small intestine is
    flat? Unfortunately they have to test medications on celiac patients so they have to look for people wanting to take risks. That pill is for occasions, i.e. when you are traveling and you are not sure if you may ingest gluten.

    Reply
  15. 15

    Lesley Woods

    Hello Celiacs! I am 2 1/2 years into intense stomach pain for which I have found no diagnosis. I understand the average time for celiac diagnosis is 4 years! I have a Gastro appt in November. So the question is this…is it worth stomach pain and itching to get an official diagnosis? I would have to glutenize for 30-60 days before a biopsy could be done. I have been GF for 18 mos and doing so much better, but not completely well. I have also developed a milk intolerance which often affect Celiacs. Coincidence? Idk. Eating in social situations or restaurants causes me mucho stress!! Couldn’t I just say I’m celiac??
    #WonderingInMo

    Reply
    1. 15.1

      mpv61

      My numbers still weren’t normal after 18 months GF. Taking just the blood test wouldn’t be as pricey; maybe they’d be willing to do that even if you haven’t gone back on gluten.

      I think most people don’t want to eat gluten again to confirm a diagnosis. That’s why the recommendation is not to go GF until you’ve had the blood test. I know, too late! Sorry.

      Call the GE doc’s office and ask to be called if anyone cancels. It might help to get in there earlier than November and talk with him/her about your quandary.

      And certainly, in restaurants, you need to make clear that yours is a serious gluten intolerance and you absolutely can’t have cross-contamination. If you want to say “celiac,” who’s to stop you?

      It’s important that they figure out what’s going on with you. If the GE demands you eat gluten, just to rule celiac in or out, maybe go see a different GE. Does s/he really want you to damage yourself to make his/her job easier?

      Reply
      1. 15.1.1

        Lesley Woods

        Btw…forgot to mention I did have the blood test recently after being GF for 18 mos or so and it was negative :(

        Reply
        1. 15.1.1.1

          cheryk

          You have to be eating gluten for the blood tests to be valid Positive or Negative.

          Reply
          1. 15.1.1.1.1

            mpv61

            That’s not necessarily true. When I was first tested, my level was over 200. I immediately went off gluten, but it was a few years (2.5, maybe?) before I got close to normal. It’s not logical to think a person could go from over 200 to normal in a very short time. So depending how high your numbers are, you could get a positive test for some time even w/o eating gluten.

            Reply
    2. 15.2

      Brenda

      I chose not to start eating gluten again to get an official diagnosis of Celiac. I went off gluten on my own and saw the difference immediately. Gluten causes me to have severe stomach pain, mood swings, hives, fatigue, nausea, vomiting…the list goes on and on. When the doctor told me I had to start eating gluten again for him to diagnose me I looked at him like he just grew another head. Why on EARTH would I subject myself (and my family) to that?? I do tell people I have Celiac for two reasons. I have sincerely believe I have it and I have found that people don’t take “gluten intolerance” as seriously as saying I have Celiac

      Reply
  16. 16

    John Moore

    I’d say – let them do the research. The more science that is done about our disease, the better of we will be. And, if they find a pill that will let me eat gluten without horrible effects, I want it, even if just to protect me from contamination when I go out and eat gluten free that turns out to only be “gluten friendly”.

    Also, if it turns out that some celiacs *can* eat low levels of gluten, a study determining that is important.

    For most of us, gluten (well, gliadin) is a poison. But toxicologists always say “the dose is the poison.” In other words, for almost all poisons, a low enough dose is not harmful. We don’t know that level for gluten. However, even if we are all very careful, we get some gluten from our environment. It may be a microscopic amount, but it isn’t zero. In the same way, we are all exposed to radiation, but some people are deathly afraid of anything radioactive. This is phobia, not sense.

    With an autoimmune disease, the immune system may be able to detect a very small level of toxin. But maybe, for some people, it can’t. What is wrong with finding out?

    Reply
    1. 16.1

      Harpreet

      I agree with you 100%.
      Knowledge is power.

      Reply
  17. 17

    Harpreet Kaur

    Here’s the thing.
    Before any drug hits the market, that is easily available for consumption by patients (irrespective of disease, disorder etc); it must be tested to prove it’s efficacy and safety. To do so, organizations conduct Clinical Trials (approved by the Ethics committee). From what I’ve read about the Chicago study that is exactly what they are trying to do. Study the effect of ‘Montelukast’- a drug approved for asthma in celiac patients. For this they need to give celiac patients bread containing gluten, otherwise how else will they test it?

    BeyondCeliac, organized an excellent webinar Celiac Disease: Immunology 101 & the Drug Development Process on June 11, 2013 that covered the basics of Drug Development Process. If you’ve not seen it , I strongly urge you to.

    Hope this helps clarify the confusion that has arisen in your mind and now the minds of several other people about the use of gluten in a celiac disease clinical trial.
    Happy to help and give detailed explanations of clinical trials if required. Feel free to tweet to me or DM me on my twitter handle @celiacdesi.

    Reply
    1. 17.1

      Harpreet Kaur

      PS: Here’s a link to the archived webinar http://www.beyondceliac.org/webinars/archive/

      Reply
      1. 17.1.1

        Harpreet Kaur

        PPS: Here’s the study that supports the finding that Montelukast might actually be helpful in celiac disease. To what extent and how safe, needs further evaluation. Preliminary results in-vitro look promising.
        Leukotrienes and the other airway: Celiac disease and asthma collide
        http://jem.rupress.org/content/212/10/1485.full.pdf+html

        Hope this helps, as well.

        Reply
    2. 17.2

      A

      But what need is there for drugs to treat celiac disease? GF works and has no side effects. Since the best treatment is already known, what compelling reason is there to develop drugs for a disease that can go into remission with careful life changes?

      Reply
  18. 18

    Ivan

    Doesn’t #NoCureNoChoice taken to its logical conclusion mean that anybody searching for a cure for any disease should really just pack up and go home?

    This is science. The idea is that there’s a position, (gluten plays hell with coeliacs). Then there’s a hypothesis (can we introduce item X into the mix such that gluten won’t). Then there’s research. (oh look – we’ve joined item x to gluten granules on this petri dish and such-and-such has happened). Then the vexed issue of trials comes up.

    I appreciate that the subject of trials is an emotive one and the notion of wilfully poisoning oneself is an anathema to many. However, I didn’t see in any of the links any reference to jackbooted thugs coming into our houses and forcing us to take part in such trials? I understand they’re looking for volunteers right?

    And here’s another thing. I’m 42. I was diganosed at the age of 40. Christ knows how many years I was undiagnosed, eating gluten and making a mess of my insides. But since adopting a GF diet, per my doctors instructions, and after a number of camera-down-my-throat inspections, my villi are healthy as heck.

    I suspect (given that there are actually doctors running the studies) that if anybody starts getting majorly sick, they’ll be yanked off the trial quicker than you can say ‘cross contamination’.

    But ultimately…this is science. If we don’t try things, then things don’t get fixed. You can’t make an omelette without breaking a few eggs :) And I repeat.

    Volunteers.

    Reply
    1. 18.1

      Sarah

      YES. This comment is spot on!

      Reply
    2. 18.2

      Deb

      I had 3 endoscopies prior to the one which verified the positive blood tests. 4 different doctors. All within 6 months time. The first 3 doctors didn’t test for antibodies, just did endoscopy because I had so much gut pain. My point is that damage to villi can be missed if the damaged area, which often can’t be detected with the naked eye, is not the area from which biopsy samples are taken. Most trials go through animal studies first, but I don’t know if true Celiac Disease has been identified in animal models for those studies to have been done. Yes, these are volunteers, and yes, research has to have guinea pigs. The point of this post, I think, is that the damage eating gluten can cause to a person with Celiac is somewhat deligitimatized ( is that a word? lol) by asking people to eat what will slowly kill them without at least portraying how dangerous the study is for those who do volunteer. They are either heros, totally ignorant, masochistic, or are in desperate need of the cash. In any case, “health” institutions probably should not be involved in research which “will” vs “could” damage the participant’s health, and it sure would be nice if these kinds of studies with gluten and Celiacs would explain the danger these participants are putting themselves into where all could read that. You make valid points about research. Question is, how important is it to most with Celiac to be able to take a drug (that may or may not work for them) so they can once again, maybe, safely eat gluten? Is the research about quality of life for disease sufferers, or bottom line of drug companies? I hope it is the first.

      Reply
      1. 18.2.1

        cheryk

        Spot on! This “study” is like slicing open people’s skin and putting in some dangerous bacteria to see how it develops. OR, cutting off circulation to a limb to see how it heals and how to treat it. Asking people to actually subject themselves to known bodily damage is reprehensible especially in light of the fact that we know what patients can do to live with this disease.

        Worse, when these things are finally “approved”, what happens to all of us as doctors and the public believes a simple pill will “cure” us? We will all end up “volunteers” being forced to further curtail our lives just to live. Imagine all those celiac college students paying for meal plans and being blown off with “just take a pill”.

        This is NOT research into what causes celiac or how to detect it earlier or even when the immune system attacks the body. This is for profit to sell more of this asthma medication. It is not science.

        Reply
        1. 18.2.1.1

          GF and more

          ^^ This

          Reply
    3. 18.3

      Green Eggs & Ham

      @Ivan – I agree, #NoCureNoChoice and reading some comments from some folks, it all seems really militant.

      @GF and more says “I am furious. Why do people keep trying to invent a pill for everything!!!”
      well it’s called medicine and that’ s how we made life expectancy go from the 30’s and 40’s to the 80’s and 90’s.
      also
      “No gluten is okay. The sooner that people accept that as their new reality, the better. By funding these studies, as Dude says, it feeds the notion that we have to find a way to be able to eat gluten. We don’t. We’ll be just fine without it. In fact, it is the only sure way to be healthy. And it is not such a sacrifice – really, it’s not.”

      This isn’t like you’ve lost a leg and it’s not going to grow back.
      what is soooooo wrong with WANTING to find a way to eat gluten.
      if they come up with medicine, gene therapy, etc then your “fact” about it being the ONLY way to be healthy, isn’t really much of a fact.

      The only absolute facts here are that everyone is going to die at some point from some thing.
      if gluten makes you sick, then fine don’t eat it. but if someone like me who has no symptoms, can take a pill and enjoy a pizza and a beer, then i’m all about that.
      what we know is the body reacts to gluten, okay well if they can make the body not react to gluten, then umm that’s a win in my book.

      I’m close to the world of biology (work in a related field) and i know researchers are making great strides in the realm of gut bacteria, antibiotics and understanding and transforming these processes, through things like medicines, genetic therapy, stem cells, etc. while not celiac focused, the future benefits of these results will certainly help, rather than hinder those who have celiac.

      so this no cure ever and life long this and that are so absolute. I really don’t feel this conversation is that set in stone, things will change in the world of CD, it’s just a matter of time.

      Reply
    4. 18.4

      Dick L.

      Certainly things need to be tested. And, yes, they’re looking for volunteers. But the fact remains, those volunteers given placebos will get fairly seriously glutened– not just similar to cross contamination, but a full dose from eating wheat bread. Deliberately dosing volunteers with something that clearly will harm them does not seem ethical to me. And I don’t think that the study being double-blind excuses the researchers. They know they’re going to harm some of the volunteers, even if they don’t know ahead of time which ones will be harmed.

      Reply
    1. 19.1
  19. 20

    cheryk

    Anyone look at the Side Effects to Montelukast? They are listed below with a link to Drugs.com so you may read for yourself.
    My favorites are “vomiting up blood” and “attempts at killing one’s self”. Now why would anyone want to take these sorts of risks rather than adhere to a gluten free diet?
    What use is it to be able to eat gluten and feel this lousy – like say commit suicide due to this medication or suffer flu-like symptoms? We can already get that from eating gluten.
    Less common:
    • Abdominal or stomach pain
    • bloody nose
    • flu-like symptoms
    • general feeling of discomfort or illness
    • headache
    • joint pain
    • pain or tenderness around the eyes and cheekbones
    • shortness of breath or troubled breathing
    • sweating
    • tightness of the chest
    • trouble with swallowing
    • unusual tiredness or weakness
    Rare:
    • Pus in the urine
    Incidence not known:
    • Agitation
    • anxiety
    • attempts at killing oneself
    • breathing problems
    • confusion about identity, place, and time
    • constipation
    • fast, irregular, pounding, or racing heartbeat or pulse
    • feeling sad or empty
    • hives or welts
    • indigestion
    • itching, puffiness, or swelling of the eyelids or around the eyes, face, lips, or tongue
    • lack of appetite
    • pains in the stomach, side, or abdomen, possibly moving to the back
    • redness of the skin
    • shaking or trembling of the hands or feet
    • trouble with concentrating
    • unable to sleep
    • unpleasant breath odor
    • upper right abdominal or stomach pain
    • vomiting of blood
    • yellow eyes or skin
    Severity: Minor
    Some of the side effects that can occur with montelukast may not need medical attention. As your body adjusts to the medicine during treatment these side effects may go away. Your health care professional may also be able to tell you about ways to reduce or prevent some of these side effects. If any of the following side effects continue, are bothersome or if you have any questions about them, check with your health care professional:
    Less common:
    • Acid or sour stomach
    • belching
    • blurred vision
    • change in near or distance vision
    • dental pain
    • earache
    • heartburn
    • lack or loss of strength
    • pain
    • skin rash, encrusted, scaly and oozing
    • stomach discomfort, upset, or pain
    Incidence not known:
    • Burning, crawling, itching, numbness, prickling, “pins and needles”, or tingling feelings
    • dreams that are unusual
    • increased tendency to bleed
    • large, flat, blue or purplish patches on the skin
    • muscle aching or cramping
    • sleepiness
    • swollen joints

    https://www.drugs.com/sfx/montelukast-side-effects.html

    Reply
    1. 20.1

      Harpreet

      Hi, here are the side effects of tylenol, an Over the counter medicine, that doesn’t even need a prescription.

      Severity: Major
      If any of the following side effects occur while taking acetaminophen, check with your doctor immediately:

      Rare:
      Bloody or black, tarry stools
      bloody or cloudy urine
      fever with or without chills (not present before treatment and not caused by the condition being treated)
      pain in the lower back and/or side (severe and/or sharp)
      pinpoint red spots on the skin
      skin rash, hives, or itching
      sore throat (not present before treatment and not caused by the condition being treated)
      sores, ulcers, or white spots on the lips or in the mouth
      sudden decrease in the amount of urine
      unusual bleeding or bruising
      unusual tiredness or weakness
      yellow eyes or skin
      If any of the following symptoms of overdose occur while taking acetaminophen, get emergency help immediately:

      Symptoms of overdose:
      Diarrhea
      increased sweating
      loss of appetite
      nausea or vomiting
      stomach cramps or pain
      swelling, pain, or tenderness in the upper abdomen or stomach area
      For Healthcare Professionals
      Applies to acetaminophen: compounding powder, intravenous solution, oral capsule, oral granule effervescent, oral liquid, oral powder for reconstitution, oral suspension, oral tablet, oral tablet chewable, oral tablet disintegrating, oral tablet extended release, rectal suppository

      General
      In general, acetaminophen (the active ingredient contained in Tylenol) is well-tolerated when administered in therapeutic doses. The most commonly reported adverse reactions have included nausea, vomiting, constipation. Injection site pain and injection site reaction have been reported with the IV product.[Ref]

      Hepatic
      Common (1% to 10%): Increased aspartate aminotransferase
      Rare (less than 0.1%): Increased hepatic transaminases
      Frequency not reported: Liver failure[Ref]

      Gastrointestinal
      Very common (10% or more): Nausea (up to 34%), Vomiting (up to 15%)
      Common (1% to 10%): Abdominal pain, diarrhea, constipation, dyspepsia, enlarged abdomen
      Frequency not reported: Dry mouth[Ref]

      Hypersensitivity
      Postmarketing reports: Anaphylaxis, hypersensitivity reactions[Ref]

      Hematologic
      Common (1% to 10%): Anemia, postoperative hemorrhage
      Very rare (less than 0.01%): Thrombocytopenia, leucopenia, neutropenia[Ref]

      Dermatologic
      Common (1% to 10%): Rash, pruritus
      Rare (less than 0.1%): Serious skin reactions such as acute generalized exanthematous pustulosis, Stevens-Johnson syndrome, and toxic epidermal necrolysis
      Very rare (less than 0.01%): Pemphigoid reaction, pustular rash, Lyell syndrome
      :[Ref]

      Respiratory
      Common (1% to 10%): Dyspnea, abnormal breath sounds, pulmonary edema, hypoxia, pleural effusion, stridor, wheezing, coughing[Ref]

      Cardiovascular
      Common (1% to 10%): Peripheral edema, hypertension, hypotension, tachycardia, chest pain[Ref]

      Metabolic
      Common (1% to 10%): Hypokalemia, hyperglycemia[Ref]

      Nervous system
      Common (1% to 10%): Headache, dizziness
      Frequency not reported: Dystonia

      Musculoskeletal
      Common (1% to 10%): Muscle spasms, trismus

      Psychiatric
      Common (1% to 10%): Insomnia, anxiety

      Genitourinary
      Common (1% to 10%): Oliguria

      Local
      Common (1% to 10%): Infusion site pain, injection site reactions

      Ocular
      Common (1% to 10%): Periorbital edema

      Other
      Common (1% to 10%): Pyrexia, fatigue
      Rare (0.01% to 0.1%): Malaise

      From the same – drugs.com website you cited earlier.

      Reply
      1. 20.1.1

        A

        Here are the side effects of a GF diet:…hmm…there don’t seem to be any…

        All drugs have side effects, but it’s a matter of degree and frequency of those side effects. Tylenol has side effects, yes, but they are fairly rare and Tylenol is usually taken for short periods. So Tylenol’s relative safety does not allay concerns about a different drug.

        Reply
      2. 20.1.2

        Susan

        No one is offering Tylenol as a “cure” for Celiac. Such a comparison is just distraction from the real issue. We have a viable treatment that causes no side effects.

        Reply
        1. 20.1.2.1

          Harpreet

          sigh!!!!

          The intention of listing the side effects of Tylenol was simply that every drug, be it something as simple as tylenol, has associated side effects.
          And toxicity is associated with the dose of the drug. IF you take too much of anything it will harm you.
          Never said Tylenol is a cure for celiac disease.

          Reply
          1. 20.1.2.1.1

            Sue

            You have proved the Dude’s point.

            Since all drugs have dangerous side effects and the gluten free diet has ZERO, there is no need to waste money trying to develop “other” treatments that add serious dangers from side effects. So you have proved the point that in treating celiac/NCGS there is no need for any drug.
            Side effects are dangers not associated with beneficial effects of any agent.

            There is no credible reason to subject anyone to the reprehensible intentional destruction of their digestive system to “test” a drug for which their are serious dangers just from side effects.

            Reply
    2. 20.2

      Harpreet

      Tylenol is a well brand to one and all I’m sure. If not, let me remind you it’s the drug you take when you have any type of body ache and fever. It does not require a prescription. It can be purchased over-the-counter (OTC).
      And if you look at the side effects mentioned on the same site – drugs.com that you cited earlier, the list long.
      Does that mean you stop taking the drug?

      Please understand, every drug, every chemical, every molecule that you ingest has some associated side effects. BUT these side effects are dose-dependent.
      Something on the same lines as, taking too much of the natural stool softener -Psyillium husk can cause dehydration in your body and associated ailments. It is therefore comes with a cautionary note, please see the same drugs.com site https://www.drugs.com/sfx/psyllium-side-effects.html for more details.
      Hope this clarifies all your doubts, if not please feel free to write to me (@celaicdesi – twitter handle)

      https://www.drugs.com/sfx/tylenol-side-effects.html
      Copy pasted the info from that site below,

      Severity: Major
      If any of the following side effects occur while taking acetaminophen, check with your doctor immediately:

      Rare:
      Bloody or black, tarry stools
      bloody or cloudy urine
      fever with or without chills (not present before treatment and not caused by the condition being treated)
      pain in the lower back and/or side (severe and/or sharp)
      pinpoint red spots on the skin
      skin rash, hives, or itching
      sore throat (not present before treatment and not caused by the condition being treated)
      sores, ulcers, or white spots on the lips or in the mouth
      sudden decrease in the amount of urine
      unusual bleeding or bruising
      unusual tiredness or weakness
      yellow eyes or skin
      If any of the following symptoms of overdose occur while taking acetaminophen, get emergency help immediately:

      Symptoms of overdose:
      Diarrhea
      increased sweating
      loss of appetite
      nausea or vomiting
      stomach cramps or pain
      swelling, pain, or tenderness in the upper abdomen or stomach area
      For Healthcare Professionals
      Applies to acetaminophen: compounding powder, intravenous solution, oral capsule, oral granule effervescent, oral liquid, oral powder for reconstitution, oral suspension, oral tablet, oral tablet chewable, oral tablet disintegrating, oral tablet extended release, rectal suppository

      General
      In general, acetaminophen (the active ingredient contained in Tylenol) is well-tolerated when administered in therapeutic doses. The most commonly reported adverse reactions have included nausea, vomiting, constipation. Injection site pain and injection site reaction have been reported with the IV product.[Ref]

      Hepatic
      Common (1% to 10%): Increased aspartate aminotransferase
      Rare (less than 0.1%): Increased hepatic transaminases
      Frequency not reported: Liver failure[Ref]

      Gastrointestinal
      Very common (10% or more): Nausea (up to 34%), Vomiting (up to 15%)
      Common (1% to 10%): Abdominal pain, diarrhea, constipation, dyspepsia, enlarged abdomen
      Frequency not reported: Dry mouth[Ref]

      Hypersensitivity
      Postmarketing reports: Anaphylaxis, hypersensitivity reactions[Ref]

      Hematologic
      Common (1% to 10%): Anemia, postoperative hemorrhage
      Very rare (less than 0.01%): Thrombocytopenia, leucopenia, neutropenia[Ref]

      Dermatologic
      Common (1% to 10%): Rash, pruritus
      Rare (less than 0.1%): Serious skin reactions such as acute generalized exanthematous pustulosis, Stevens-Johnson syndrome, and toxic epidermal necrolysis
      Very rare (less than 0.01%): Pemphigoid reaction, pustular rash, Lyell syndrome
      :[Ref]

      Respiratory
      Common (1% to 10%): Dyspnea, abnormal breath sounds, pulmonary edema, hypoxia, pleural effusion, stridor, wheezing, coughing[Ref]

      Cardiovascular
      Common (1% to 10%): Peripheral edema, hypertension, hypotension, tachycardia, chest pain[Ref]

      Metabolic
      Common (1% to 10%): Hypokalemia, hyperglycemia[Ref]

      Nervous system
      Common (1% to 10%): Headache, dizziness
      Frequency not reported: Dystonia

      Musculoskeletal
      Common (1% to 10%): Muscle spasms, trismus

      Psychiatric
      Common (1% to 10%): Insomnia, anxiety

      Genitourinary
      Common (1% to 10%): Oliguria

      Local
      Common (1% to 10%): Infusion site pain, injection site reactions

      Ocular
      Common (1% to 10%): Periorbital edema

      Other
      Common (1% to 10%): Pyrexia, fatigue
      Rare (0.01% to 0.1%): Malaise

      Reply
  20. 21

    Angie

    Hell no!
    Not worth it.

    Reply
  21. 22

    Kathie

    I don’t think I’ll try this. I’m having to have the endoscopy done again because I’m having problems and they think I may be eating cross contamination. Plus rice and gf breads give me horrible heartburn or painful swallowing. Why would I deliberately subject myself to more pain? Seriously.

    If they’re going to do research, let it be into the cause and find something that stops the intestinal damage. That seems to be the worst part because, like, nutrician?

    Reply
    1. 22.1

      Kathie

      Poor spelling! Nutrition!

      Reply
  22. 23

    mpv61

    I don’t know about this specific study, but I know they are working on something to stop the intestinal damage.

    As for already having a cure, the GF diet works 100% only if you have total control about what you eat. That’s a difficult way to live, and just about impossible in certain conditions. If you travel for work, do you have time/ability to seek out a grocery store and make your own food? Do you just eat fresh fruit and veggies that you’ve washed well? How long can you keep that up on a business trip?

    I’m sending my 18-year-old twins off to two different colleges a month from now. A significant part of their college decisions had to revolve around eating safely, since they both have celiac disease. Their colleges seem to be among the best for GF. They have separate areas/rooms with foods that are GF and top-8-allergen free, as well as a separate GF/allergen-free hot food station with a dedicated server. But still, even though the dedicated servers will tell you there’s a separate section in the back where GF foods are prepared, both colleges’ party line is “we do not have a dedicated GF kitchen so there could be cross-contamination.” I think that’s a cover-your-ass line, I think my college students will be able to eat safely there, but am I 100% sure? No. I’m 100% sure we found two colleges where they are most likely safe, and 100% sure some of the other colleges we looked at weren’t at all safe.

    I would welcome a treatment that would avoid the damage from cross-contamination. I’m fine with eating gluten-free the rest of my life. I’m fine(-ish) with all the time I have to put into researching restaurants and grocery stores along my path when I have to travel. I’m fine with ordering my (very occasional) restaurant food like a gluten-free Sally in When Harry Met Sally. But when I do all that and my numbers are still a bit elevated?

    I think the “eat a GF diet” cure we have could use a little help. I’m not willing to be the guinea pig to get that little help, but I hope we get it. Again, I have two kids who’ve been diagnosed with celiac. (My third kid has the genes for it, so we’ll be retesting him every 4 or 5 years.) I don’t want my kids to have 70 or 80 years of putting as much effort into eating GF as I have to now. We need improvement on every front — more GF-only restaurants (there’s one near me, thank goodness), colleges and restaurants that can feed us safely, GF products that truly *are* GF — and medical research for some other options.

    Reply
  23. 24

    Greg

    These studies are criminally unethical. Of course, no one is forcing anyone to sign up. You’d have to be crazy!

    Reply
    1. 24.1

      sue

      I thought the same thing. Reminds me a little of the Nazi’s experimenting on humans. They simply do not care that they are knowingly injuring human beings.

      Reply
  24. 25

    Tony

    I might be looking at this from a different angle, and I hope this doesn’t sound too offensive (wait, maybe I am ok if you are offended) but I would give my left hand if I knew I could give my 2 beautiful girls (4 and 6) an easier, less worrying lifestyle, a life where they can go to a restaurant without worrying, or sit at the table at friends birthday party and not worry about a crumb. Yes the test may make YOU sick for a few weeks, but what if it could help the million of people for next millions of years? What about the greater good? Every Celiac out there spent a significant amount of their life eating gluten, what is a few more weeks?
    Ok, so you are happy with a gluten free lifestyle and it works for, and the greater good does not matter to you. Do you use ANY prescription drugs? If so, how do you think those drugs got on to the market? Have you ever been vaccinated? Just remember someone had to be the first person to take the measles vaccine (and I thank them for helping the world be a healthier place!).
    Ok, so you say that this different because there is no “lifestyle” that cures measles… true. What about Lasik eye surgery, who was the first person to put a laser in their eyes when the glasses lifestyle was so much easier??? I also thank that person!

    My point is if you have never benefited from someone in the past trying something that has a little risk for the great good, you are fine to say “Hell No” with no regard. But if you have, maybe you should think twice about how the world got to where we are today.

    Reply

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