Jump to content
  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

What Would You Do If There Was A Cure?


cgilsing

Recommended Posts

barbara3675 Rookie

GO STRAIGHT TO PIZZA HUT AND THEN WHEN I WAKE UP THE NEXT MORNING I WOULD HAVE A HUGE BOWL OF OATMEAL WITH BROWN SUGAR AND MILK.


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



Celiac.com Sponsor (A8-M):



pixiegirl Enthusiast

I think some of you have mis understood the question, or at least how I understand it is this: Lets pretend there was a pill that really did cure you, then what? Or for those of you that keep saying its just a treatment (remember we are pretending here)... lets say they figure out a way thru stem cells or gene splicing or whatever to cure Celiac, then what?

I'd of course be cured, however.... I would continue to eat in a similar manner to how I am now... very few processed foods and more "real" food. But I would once in a while have a beer and pizza or sour dough bread. I can't believe if it truly was a "cure" that people would choose not to be cured, many of us may well continue our current pattern of eating, I'm not sure wheat is really good for anyone, but I'd give up the accidential glutenings and how they make me feel in a second.

However my daughter has a life threatening peanut allergy, she has airborn reactions and I'm hoping the cure for that comes first. She would not start eating peanut butter, the smell of it makes her sick but at least we could go places and not worry she was going to inhale it. Like the grocery store (open peanuts are in many groceries) or see a baseball game (she can't go to one, not even in a sky box), Thai food, chinese food, etc.

Susan

jaten Enthusiast
Jaten- You crack me up and now you won't have to worry about gall bladder attacks either since we are both gluten and gall bladder free! :P

Actually- do you think that there will ever be a day when there is a chain of gluten-free restaurants?

Hahaha...You're the best! That's right, our gall-bladderless selves could go skipping arm in arm into the nearest restaurant of our choosing! No Celiac symptoms...including the gall bladder symptoms that stemmed from Celiac.

Just think of the possibilities!

Do I think there will be true, real gluten free restaurant chains? Yes, I think that's probably a lot closer to reality than a cure. I think that sort of thing may really be on the horizon. I really do. As publicity for this disease continues, more people are aware it exists AND more are being tested and as the population of diagnosed Celiacs increases a change has to occur. Has to.

A cure would have a LOT of testing, etc to convince me it was real and safe. Said cure have to be tested a long time, to be positive it really "neutralizes" the gluten and doesn't cause some other hidden issues.

Mtndog Collaborator
However my daughter has a life threatening peanut allergy, she has airborn reactions and I'm hoping the cure for that comes first. She would not start eating peanut butter, the smell of it makes her sick but at least we could go places and not worry she was going to inhale it. Like the grocery store (open peanuts are in many groceries) or see a baseball game (she can't go to one, not even in a sky box), Thai food, chinese food, etc.

Susan

Absolutely- a cure for that would be incredible (EpiPen does NOT count as a cure- that's for sure!)

Kaycee Collaborator
I think some of you have mis understood the question, or at least how I understand it is this: Lets pretend there was a pill that really did cure you, then what? Or for those of you that keep saying its just a treatment (remember we are pretending here)... lets say they figure out a way thru stem cells or gene splicing or whatever to cure Celiac, then what?

I'd of course be cured, however.... I would continue to eat in a similar manner to how I am now... very few processed foods and more "real" food. But I would once in a while have a beer and pizza or sour dough bread. I can't believe if it truly was a "cure" that people would choose not to be cured, many of us may well continue our current pattern of eating, I'm not sure wheat is really good for anyone, but I'd give up the accidential glutenings and how they make me feel in a second.

However my daughter has a life threatening peanut allergy, she has airborn reactions and I'm hoping the cure for that comes first. She would not start eating peanut butter, the smell of it makes her sick but at least we could go places and not worry she was going to inhale it. Like the grocery store (open peanuts are in many groceries) or see a baseball game (she can't go to one, not even in a sky box), Thai food, chinese food, etc.

Susan

Susan I have not lost the point of the question.

It would be wonderful for there to be a cure, don't get me wrong, but it will not be for me. I am, well was a compulsive eater in an earlier life, and did not give two hoots about I what I was eating. I know other people can be very careful about what they eat, and be very conscientious about it, but I can't. That seems a bit beyond me.

In having said that, I love the diet, it suits me and I am getting better and have learned a lot about food, maybe if there was a cure that knowledge would carry on through, but I am a bit skeptical, give me a box of chocolates now, and they will be gone before you can say "after dinner mints". It is not easy to admit that sometimes I overeat, but it is the truth.

Being gluten free I have more control over what I eat. It is funny to think that this diet is very restrictive, yet I feel I am in control of my diet and my health, something I never have been before.

So the way I see it, is that a cure might compromise my health.

And yes Susan, let them find a cure for peanut allergy first. We have a young girl at school who has the same reactions as your daughter. It does create a bit of tension in the school, but it is educational at the same time as students learn about life threatening conditions, and why they can't have peanut butter sandwiches in their class. My biggest fear is or was eating a peanut butter sandwich for lunch and then having Dani come into the sickbay for a plaster. It would've been my worst nightmare. But that nightmare for me has been cured, as I now react to peanuts! Another food group gone down the drain!

Cathy

pixiegirl Enthusiast

Hi Cathy,

well certainly everyone is different and I wasn't referring to any single post but it seems everyone was assuming the "pill" would just mask symptoms so I wanted to clairfy what the original poster said (or at least how I understood it) . But you've shown that everyone has a different take. Makes the world interesting!

I too started reacting to peanuts recently, not like my daughter does but I'm still allergic to them. But we'e had a peanut free house for years.

Enjoy your holiday!

Susan

chrissy Collaborator

well---i'd definitely want to cure my girls if it were possible---our ped gi says that they are looking to see that in the future (though no one is working on it yet). if dr. fassano can make his zonulin antagonist work to treat celiac disease, i'll be as close to the front of the line to get it as i can.

i would much rather have the option of learning to practice self-control to eat well than to have my girls have a disease to force us to eat well.


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



Celiac.com Sponsor (A8-M):



cgilsing Enthusiast

Just to clarify, my original post was a hypothetical cure question. In reality who knows what they are going to come up with and what side affects it will have. But IF they came up with a REAL cure. How many people would take it? I guess I feel somewhat the same way that Cathy does. That this diet has been a GREAT excersize in self-control. Now that I'm used to it, I don't even think twice about the crap I used to put in my body. I'm afraid if I was really cured though, I might fall back into my old ways. It would make me think twice about taking it. I'm amazed that I feel this way though...because I used to PRAY for a cure or a treatment or ANYTHING that would let me eat wheat again. As it turns out (at least for me) this diet isn't so bad afterall....who would have thunk?!

P.S. I'm not saying that I don't appreciate all the posts. Everybody has brought up GREAT points and a lot to think about if they do come out with some kind of treatment. :D

cmom Contributor

I am not sure if I would ever trust a cure. I never want to go back to the way I was before. I am able to live a much more normal life now. Even though I still have episodes sometimes, life is much more pleasant. I would probably continue to choose the gluten-free lifestyle. :lol:

Guest AutumnE

It wouldnt change my life much at all, I have so many other food allergies and intolerances that it wouldnt bring back any grains since I cant tolerate any of them anymore. I am very healthy now and I love feeling full of energy. Celiac disease and my diagnosis of glaucoma are changing my life in wonderful ways.

For my 2 year old, absolutely I hope for a cure currently its only gluten and I would love her to have the freedom of her choice of diet when she is older.

barbara3675 Rookie

CQILSING----I got it!!!!!! Your quesiton was just all in fun, really, and that is the way I took it. I highly doubt your theory will actually come true. I answered exactly the way you wanted people to answer. Since then I have thought of several things that I would dig into!!!!!!!like crusty french bread to name one, made spaghetti last night and had to make garlic bread out of gluten-free bread, wasn't bad, but could have been better made out of a loaf of crusty french bread. Not complaining though, really, in the scheme of things in life, this ailment is so little compared to the things that can REALLY go wrong, that is the way I look at it every day. If all things could be cured so easily as just changing the things you eat, there would be a lot less sick and dying people. Barbara

tarnalberry Community Regular

If there was a complete and total cure - "hey look, you have new genes, and it's totally chemically impossible for them to damage your intestines or other internal organs just because you eat gluten" sort of thing - of course I'd go for it. Gluten exists in our world, and there's absolutely no way that we can 100% guarantee that we will never ever ever make a mistake or otherwise accidentally ingest some. So, making a change that brings me one step closer to being invincible - or at least removes my weakness to kryptonite while I live on a planet filled with it - is all good. Would I drastically change my diet? No. Would I change it a little? Probably, if it were a *true and complete* cure - meaning that there were NO deliterious effects from gluten consumption.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      Coeliac or not coeliac

    2. - cristiana replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      Coeliac or not coeliac

    3. - trents replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      Coeliac or not coeliac

    4. - knitty kitty replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      Coeliac or not coeliac

    5. - knitty kitty replied to kevert93's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Having issues with chips

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,185
    • Most Online (within 30 mins)
      10,442

    Dennis E. Schertz
    Newest Member
    Dennis E. Schertz
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
    • cristiana
      Hello @CC90 Can I just ask a question: have you actually been told that your biopsy were normal, or just that your stomach, duodenum and small intestine looked normal? The reason I ask is that when I had my endoscopy, I was told everything looked normal.  My TTG score was completely through the roof at the time, greater than 100 which was then the cut off max. for my local lab.  Yet when my biopsy results came back, I was told I was stage 3 on the Marsh scale.  I've come across the same thing with at least one other person on this forum who was told everything looked normal, but the report was not talking about the actual biopsy samples, which had to be looked at through a microscope and came back abnormal.
    • trents
      My bad. I should have reread your first post as for some reason I was thinking your TTG was within normal range. While we are talking about celiac antibody blood work, you might not realize that there is not yet an industry standard rating scale in use for those blood tests so just having a raw number with out the reference scale can be less than helpful, especially when the test results are marginal. But a result of 87.4 is probably out of the normal range and into the positive range for any lab's scale. But back to the question of why your endoscopy/biopsy didn't show damage despite significantly positive TTG. Because they took the trouble to take seven samples, it is not likely they missed damage because of it being patchy. The other possibility is that there hasn't been time for the damage to show up. How long have you been experiencing the symptoms you describe in your first post? Having said all that, there are other medical conditions that can cause elevated TTG-IGA values and sometimes they are transient issues. I think it would be wise to ask for another TTG-IGA before the repeat endoscopy to see if it is still high.  Knitty kitty's suggestion of getting genetic testing done is also something to think about. About 35% of the general population will have one or both genes that are markers for the potential to develop active celiac disease but only about 1% of the population actually develop celiac disease. So, having a celiac potential gene cannot be used to definitively diagnose celiac disease but it can be realistically used to rule it out if you don't have either of the genes. If your symptoms persist, and all testing is complete and the follow-up endoscopy/biopsy still shows no damage, you should consider trialing a gluten free diet for a few months to see if symptoms improve. If not celiac disease, you could have NCGS (Non Celiac Gluten Sensitivity). 
    • knitty kitty
      @CC90, Your Lansoprazole is a proton pump inhibitor and has immunosuppressive effects!!!!  This is why your endoscopy didn't show much damage to the intestinal lining!!  The Lansolprazole is suppressing tTg IgA antibodies in the intestines, but those antibodies are getting into the blood stream and causing inflammation and damage in other organs.   Proton pump inhibitors cause intestinal damage in the long run.  If you get off the Lansoprazole for a few months so your immune system is not blocked, then do a gluten challenge, and an endoscopy, THEN they would see intestinal damage. Sheesh!  Doctors can be so ignorant.  I've seen this so many times it's frustrating! Take the B Complex and Benfotiamine.  Get off the Lansoprazole.  Go with the DNA test results.   Welcome to the tribe! P.S. B vitamins are needed to correct anemia!  Not just iron.  
    • knitty kitty
      Hi, @kevert93, Those Gluten Assist enzymes digest carbohydrates, not just gluten specifically.  Eating a high carbohydrate meal can deplete Thiamine Vitamin B 1 causing digestive symptoms like you describe.  You could also be having difficulty digesting the oils used in those chips.  Thiamine in the form Benfotiamine can help. We need the eight B vitamins to digest our food, carbs, fats and proteins.  Poor digestion can cause symptoms like vomiting and stomach pain, brain fog, headaches, exhaustion.  Try taking a B Complex with the activated forms of the B vitamins (Life Extension's Bioactive B Complex is great!) and additional Benfotiamine.  The B vitamins are used to make digestive enzymes and will allow your digestive system to function properly.  The B vitamins also will improve headaches, exhaustion, and brain function.  Taking Thiamine in the form Benfotiamine will improve digestive symptoms and lower inflammation, too.  Benfotiamine and the B vitamins are safe.  The B vitamins are chemical compounds found in whole foods, not in highly processed foods like chips.   The body cannot make the B vitamins, so supplementing is beneficial.  Benfotiamine is safe and nontoxic even in high doses.
×
×
  • Create New...