What Would You Do If There Was A Cure?

[cgilsing]

I think a couple of years ago my answer to this question would have been different. The other day I went to my mom's house and she had clipped a small article out of the newspaper about two guys at Cambridge that are working on a cure for celiac disease. It got me thinking. What would I do if there was a pill to take that would make it all better. Would I even want it? In a lot of ways my life has actually improved because of celiac disease. I am a much better cook and I enjoy cooking now. I'm afraid that if I could eat whatever I wanted I would fall into a habit of eating "quick" foods again (hamburger helper) Plus my whole family eats much healthier than before. No fast food, little fried food, fairly low carbs. If there was a cure it would be easy to throw that to the wind. Don't get me wrong. There would be advantages. Eating out without worry, eating at friends homes, puff pastry....How do you think you would feel? And why?

[jkmunchkin]

When I was first diagnosed I wanted a pill more than anything (as I'm sure everyone of us did those first few weeks or months). But now, it isn't that important. I would still continue to eat gluten free at home, and even when I'm out; but I wouldn't mind a pill that I could take as a preventitive measure to getting glutened if I eat out. That way when I went out to eat I could be less narotic about telling the waiter 9 times to make sure my food doesn't come in contact with any crumbs, flour, etc. I would love to be able to go someplace like Cheesecake Factory (somewhere I don't feel comfortable going now), still order something gluten free but not be worried that there will be cross contamination.

[LoriBelle]

Wow Jillian - your post is exactly the way I feel..... pretty much word for word.

So my answer would be.... yeah - what Jillian said.

[tarnalberry]

See, I don't see that as a cure. I see that as a long-term treatment, just like the diet is. If you stop taking the pill, you can't have gluten. It doesn't fix the underlying problem permanently. I'd probably have the pill around for eating out and so forth, but I wouldn't aim to add gluten back to my diet in any way.

[Kaycee]

Good question.

When first diagnosed my first thought was, wow, I don't need to take any medication. But then realisation hit and I realised, that my health is totally my responsibility, and that was a pretty heavy thing to deal with. If I get it wrong, who can I blame, nobody but myself.

But now 10 months and counting, down the track I am happy with my diet. In some ways because it is so limited (but I don't feel that it is), I have gained control over my eating. That is the one thing I never had pre-diagnosis, I would eat what I liked when I liked and how I liked, even though I knew my choices were not very healthy. But now like I have said before, this is the diet suits me.

I would be a bit cautious about a cure, especially for my own benefit, I would probably gradually loose control over my diet, as I think I have a bit of an addictive personality, as it took me forever to give up smoking, and I could never diet very successfully.

In having said that, I would welcome a cure for coeliac, and research into the disease. But if I can manage my disease with diet alone, I will be happy. This comes from someone who's strongest medication would be antibiotics, or a panadol tablet for a headache, as there never has been any need for me to take anything else, but if there was a necessity for me to take it for some other disease, I think yes I would take it.

Cathy

[Carriefaith]

I would still have to eat the same way if there was a cure because I have a wheat allergy.

[dragonmom]

It would be nice to stop at Cinabon instead of just smelling it as I walk by. Actually, not having to worry about medications containing gluten or if the friend that fixed dinner used the wrong soy sauce ,wondering where you went wrong because your blood test came back high again. I don't mind not using gluten -it's just that it is hidden in so many places.

[Ursa Major]

I agree with Tiffany. A pill wouldn't be a cure, it would be medication to prevent a reaction (in order to cure me, they'd have to change my genes.....that is not possible). All medications have side effects. Why take meds if you can just avoid gluten?

But I would like to have those pills around for going out. Or even for the occasional splurge (maybe once every three months) on something I really miss. But for the most part, I would just continue on my merry gluten-free-way.

[Sinenox]

My understanding was that this is a genetic problem. Treating a genetic problem with pills and not gene therapy just seems like treating symptoms to me. I wouldn't want to take a pill a day for the rest of my life and ignore the underlying environmental/genetic problem, in case later generations don't have the opportunity to benefit from the convenient treatment and the situation becomes compounded.

[corinne]

I don't think it would change things for me. I actually have collagenous colitis, not celiac, and it can be treated with drugs (Asocol etc, worst case Prednisone). After tooth damage from medication, I have chosen to manage it , like many others with this type of colitis, by going on a gluten-free diet. I'd rather do the diet than take the risk of side effects from taking medications for life.

[Guest cassidy]

A pill isn't a cure, it is a treatment like others have said. I cure would be a wonderful thing but I don't know how they cure something genetic especially when there are different genes involved and it appears some genes haven't been found.

I would love a treatment that would allow me not to have to worry about cc amounts. At Thanksgiving this week I could eat the turkey, mashed potatoes, etc and not worry if someone had "stuffing hands" when they made everything else. It would be nice to go out to dinner and not worry about whether the chef took me seriously or not. I think I would want the pill for social reasons. I really don't have a problem eating gluten-free at home, I just hate to dread social events because I don't know how my diet will be received.

[Saz]

I have to say if their was a cure, wheather it be a med, injection- whatever I think that I would have to take it. Provided of course that it was going to work or in the case of it being used to treat other more "serious" illness/ disease, that person would not miss out because I had it.

I also think it would be a great benefit for children. I was dx when I was 6 and it just always felt so unfair that I couldn't eat "normal" food. I have to have a lot of gluten to get sick, and as a child I didn't really understand why I should have to go without when I wasn't getting sick.

I think that part of the reason why I would want it is because, even tho In last four years I was eating far to much gluten, I really don't know what is like to not be able to eat whatever I want, when I want.

[Mtndog]

I pretty much agree with Jillian- Like Ursula said, I would continue on my merry gluten-free way. I don't think I could EVER convince myself that a pill was really a "cure". But I would love something I could take before eating out, dining at friend's places etc so that I wouldn't get sick for days.

I might occasionally splurge (Chinese food on New Year's Eve would be the first thing- no MSG though but oh do I miss crab rangoon!) but onestly, I now LOVE to cook, I've gotten pretty good at it and I enjoy my gluten free life. Never thought I'd say that 2 years ago!

[TriticusToxicum]

I pretty much agree with Jillian- Like Ursula said, I would continue on my merry gluten-free way. I don't think I could EVER convince myself that a pill was really a "cure". But I would love something I could take before eating out, dining at friend's places etc so that I wouldn't get sick for days.

I might occasionally splurge (Chinese food on New Year's Eve would be the first thing- no MSG though but oh do I miss crab rangoon!) but onestly, I now LOVE to cook, I've gotten pretty good at it and I enjoy my gluten free life. Never thought I'd say that 2 years ago!

Big DITTO! Home is a safe haven for me, and most of us i assume. Being able to dine out without worry would be HUGE! General Tso's, NY pizza, Dunkin Donuts - I'd splurge and try it out, but remain on a gluten-free diet thereafter. I'm not holding my breath in the meanwhile.

[lonewolf]

I agree with Ursula, Beverly and Richard. I actually have a kidney disease that can be controlled with medication, but found that staying gluten-free keeps it in remission. I'd take the gluten-free diet over medication ANY day, for any of my health problems.

[luvs2eat]

If there was a real cure??

First I'd have an ice cold Bud Lite w/ a Pizza Hut stuffed crust pizza w/ pepperoni and pineapple.

Then I'd go home and make a loaf of the country crusty loaf of bread I used to make and serve it w/ lasagna made w/ noodles that don't cost like $5./pound!

For breakfast the next day, I'd have probably 5 bowls of Cheerios.

For lunch I'd have a Subway tuna hoagie w/ the works!

I could go on and on...

[phakephur]

I think it's likely that pill to treat celiac will work by suppressing immune response. As with treatments for psoriasis, etc., "side effects may include headache, upper respiratory infection, and lymphoma". No thanks.

When they do have a pill, look for an increase in screening. A chronic condition like celiac is a pharmaceutical company's wet dream.

Right now the celiac community, small but growing, presents a united front to food manufacturers. At the point where the pill becomes available, I'm sure a subset of that population will say "screw it I'm taking the pill". If demand for gluten free products drops off dramatically when a method of symptom suppression becomes available, the result may be a decrease in the variety and quality of gluten free foods.

Additionally, those of us who are self-diagnosed would have to submit to the gluten challenge in order to get the diagnosis and then the prescription. Miserable.

Sarah

[SchnauzerMom]

I agree with some of the others here. A pill is not a cure but rather a form of treatment. Like insulin for a diabetic. We would have to take the pill the rest of our lives. The trouble with that is that a lot of meds have weird side effects and could cause problems several years down the line. I have no desire to be a guina pig just so I can eat whole wheat bread. I'm comfortable with the gluten free diet.

[Nancym]

I'm like you, I wouldn't go back to eating that stuff all the time. It caused other health problems too simply because my diet was too high in carbohydrates. But the pill would be nice for when you go out to eat and need to ensure that you don't get sick from cross contamination.

[jerseyangel]

Almost every time I've taken a pill or medicine, the side effects are worse than the original problem!

I'm in the camp that would stay gluten-free, but would consider using something for occasional use--as long as I don't have to trade one set of symptoms for another

[jaten]

Where's the pill line?

While standing in that line, I would of course inquire about long and short term side effects. I would only take it if it was thoroughly tested and safe, etc. (I don't want to get into a "no drug is safe" discussion. I'd calculate the risk once I was as informed as could be and would have to be pretty certain it would be safe.)

But yeah, the next line I'd be standing in would be Pizza Hut's pizza and beer line. And then I'd go to the Wonder Bread store. No, no....the very first thing I'd do would be celebrate with my husband in a nice restaurant and I'd close my eyes and jab my finger at the appetizer section and order whatever my finger landed on. That would be to satisfy my, "I can order with wreckless abandon" desire. Then I'd spend some time salivating over the entrees and choose the one of all of them that sounded the absolute best, and I wouldn't talk to a manager or chef or even the waiter about food preparation. In fact, I'd probably tell my husband what I want and let him do all the talking to the staff.

Then I'd go eat at the homes of friends and family totally and completely free of worry. And then I'd go shopping all day, just to be certain that I'd get hungry while I was shopping, and when the hunger pangs hit, I'd stop shopping long enough to rest my feet and eat something from the food court or whatever is convenient to my shopping. And I'd do all of this with a humongous, worry-free, ear-to-ear grin

[Adelle]

I was given pills to "fix" the problem for so long..... I don't think I could....

U know what I'd RATHER see???

More gluten-free restraunts or at least restraunts with gluten-free menu selections (and a semi educated staff on cc) like outback or something.

Sounds like everyone who wants a pill wants it to go out to eat, that wouldn't be an issue if restraunts would step up to the plate (ha ha I'm funny).

But the availability for a "cure" (even if no one uses it) might help get more awareness.... That would rock!!

[par18]

See, I don't see that as a cure. I see that as a long-term treatment, just like the diet is. If you stop taking the pill, you can't have gluten. It doesn't fix the underlying problem permanently. I'd probably have the pill around for eating out and so forth, but I wouldn't aim to add gluten back to my diet in any way.

This is almost me except I would not have the pill around. I'm so used to this diet now that if only there were more gluten free dining out choices to choose from I would feel exactly as I did before going on the diet. I think there is a better chance of this happening in my lifetime than a cure. If I had to take a pill then I don't consider it a cure either.

Tom

[Mtndog]

Where's the pill line?

While standing in that line, I would of course inquire about long and short term side effects. I would only take it if it was thoroughly tested and safe, etc. (I don't want to get into a "no drug is safe" discussion. I'd calculate the risk once I was as informed as could be and would have to be pretty certain it would be safe.)

But yeah, the next line I'd be standing in would be Pizza Hut's pizza and beer line. And then I'd go to the Wonder Bread store. No, no....the very first thing I'd do would be celebrate with my husband in a nice restaurant and I'd close my eyes and jab my finger at the appetizer section and order whatever my finger landed on. That would be to satisfy my, "I can order with wreckless abandon" desire. Then I'd spend some time salivating over the entrees and choose the one of all of them that sounded the absolute best, and I wouldn't talk to a manager or chef or even the waiter about food preparation. In fact, I'd probably tell my husband what I want and let him do all the talking to the staff.

Then I'd go eat at the homes of friends and family totally and completely free of worry. And then I'd go shopping all day, just to be certain that I'd get hungry while I was shopping, and when the hunger pangs hit, I'd stop shopping long enough to rest my feet and eat something from the food court or whatever is convenient to my shopping. And I'd do all of this with a humongous, worry-free, ear-to-ear grin

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!

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

[Kaycee]

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

This is the stuff that dreams are made of.

Since we can, or have learned how to cook again, why don't we take up the gauntlet and open up gluten free restuarants around the world.

Let's start in Whangarei.

Cathy