What Are You Thoughts About This

[twe0708]

So I was recentely dx with celiac disease and I asked my doctor how serious I need to take this and is it ok to have say a beer or a cupcake once a year. He said if I was at a party and didn't want to hurt the hostess' feelings while celebrating a big event then a beer or piece of cake would be ok. Is this true?

[Lisa16]

Sorry to tell you this twe, but your doctor is just flat out wrong.

The truth is that people with celiac disease need to be as gluten free. Everytime you eat some, you are seriously damaging your health. If you read more of the posts on this board, you will understand why this is so. To continue eating gluten will actually increase your odds of premature mortality (not to mention a host of other related ailments). Read a few articles on pubmed-- there is a recent study by the Mayo Clinic that supports this. Read the Peter Green book, "Celiac, the Hidden Epidemic." I am afraid that even if your symptoms are mild, this is still the case.

I am afraid there must be no more regular beer and no more regular cupcakes in your future. You will, however, find recipes for gluten-free cupcakes here. And there are such things as gluten free beers. So you will be just fine.

Now the truth is also that from time to time you will accidentally get glutened. Whenever this happens, you will experience a kind of set-back in your recovery. Once you are gluten free and experience what it is like to live free of pain and free of your symptoms, these setbacks will feel horrible and, depending on the severity, may last a few weeks. The longer you are gluten free, the worse the accidents will be for you. For most of us, this is incentive enough.

Good luck in yor transition to a gluten free lifestyle. I am afraid there will be awkward social moments and difficult situations. But that is why we are here. And remember... no matter how bad you think it is, somebody here will have experienced the same thing.

Also, you may consider looking for a doctor who is more knowledgeable about the disease.

Lisa

[Shess0816]

So I was recentely dx with celiac disease and I asked my doctor how serious I need to take this and is it ok to have say a beer or a cupcake once a year. He said if I was at a party and didn't want to hurt the hostess' feelings while celebrating a big event then a beer or piece of cake would be ok. Is this true?

That is really funny you mentioned this, because my doctor said that very same thing too! I personally have chosen not to follow that advice. I know how sick I get when I ingest something with gluten and it's just not worth it to me to be sick for 2 weeks for one beer or one cupcake. They may not taste as good, but they do make cupcakes and beer without gluten -- and I personally would much rather feel good the following two weeks!

Back to the doctor, though, he said that he believes there just has not been enough research done on gluten and celiacs to really know what the body can and cannot take. He believes that once you rid yourself of the influx of gluten from eating it for years, your body can tolerate a certain amount. He believes that it is all about finding what amount your body is okay with. Interesting concept, but like I said, I feel bad when I accidently ingest just a little gluten. I don't really want to take the time to figure out how much my body can handle... I actually don't really buy that whole thing at all, but I think he's just trying to help....

[Shess0816]

Sorry to tell you this twe, but your doctor is just flat out wrong.

The truth is that people with celiac disease need to be as gluten free. Everytime you eat some, you are seriously damaging your health. If you read more of the posts on this board, you will understand why this is so. To continue eating gluten will actually increase your odds of premature mortality (not to mention a host of other related ailments). Read a few articles on pubmed-- there is a recent study by the Mayo Clinic that supports this. Read the Peter Green book, "Celiac, the Hidden Epidemic." I am afraid that even if your symptoms are mild, this is still the case.

I am afraid there must be no more regular beer and no more regular cupcakes in your future. You will, however, find recipes for gluten-free cupcakes here. And there are such things as gluten free beers. So you will be just fine.

Now the truth is also that from time to time you will accidentally get glutened. Whenever this happens, you will experience a kind of set-back in your recovery. Once you are gluten free and experience what it is like to live free of pain and free of your symptoms, these setbacks will feel horrible and, depending on the severity, may last a few weeks. The longer you are gluten free, the worse the accidents will be for you. For most of us, this is incentive enough.

Good luck in yor transition to a gluten free lifestyle. I am afraid there will be awkward social moments and difficult situations. But that is why we are here. And remember... no matter how bad you think it is, somebody here will have experienced the same thing.

Also, you may consider looking for a doctor who is more knowledgeable about the disease.

Lisa

Just to build a bit on what Lisa said, too, at some point you have to not worry about whether you hurt someone else's feelings. When I first got diagnosed I was so worried about what everyone would think and whether I'd hurt my boyfriend's parents' feelings when they cooked dinner for us that I slipped up a few times just to be polite. After a couple times of that and several weeks of the aching joints, bathroom trips, headaches, fogginess, stomach pains, I decided that this is about my health. If people are going to feel bad because I want to be healthy and can't eat the cupcakes they made, it's their problem. I am not going to subject myself to a higher risk of cancer and infertility (among other potential issues!) just to make someone feel better about their cooking. Now, when I go to parties where people may not understand my disease, I take my own food or I eat before. Sometimes we call ahead if they are good friends and see exactly what they will be serving and how they are preparing it. For example, we went to a rehearsal dinner for a good friend's wedding and they just had a little cookout with burgers and brats. Well, we stopped by the store on the way to the dinner, picked up some turkey burgers for me (since I don't like beef) and some gluten free buns and gluten free chips. The host was kind enough to cook my burgers on a piece of foil on the grill to avoid cross contamination and then I used my gluten free buns and chips. That way I could eat what everyone else was eating and the host was the only one who knew anything different.

Like Lisa said though, it is your health and you will realize how much better you feel when you do not have gluten. For me, it's definitely not worth it to eat anythign I'm not supposed to have!

[twe0708]

Just to build a bit on what Lisa said, too, at some point you have to not worry about whether you hurt someone else's feelings. When I first got diagnosed I was so worried about what everyone would think and whether I'd hurt my boyfriend's parents' feelings when they cooked dinner for us that I slipped up a few times just to be polite. After a couple times of that and several weeks of the aching joints, bathroom trips, headaches, fogginess, stomach pains, I decided that this is about my health. If people are going to feel bad because I want to be healthy and can't eat the cupcakes they made, it's their problem. I am not going to subject myself to a higher risk of cancer and infertility (among other potential issues!) just to make someone feel better about their cooking. Now, when I go to parties where people may not understand my disease, I take my own food or I eat before. Sometimes we call ahead if they are good friends and see exactly what they will be serving and how they are preparing it. For example, we went to a rehearsal dinner for a good friend's wedding and they just had a little cookout with burgers and brats. Well, we stopped by the store on the way to the dinner, picked up some turkey burgers for me (since I don't like beef) and some gluten free buns and gluten free chips. The host was kind enough to cook my burgers on a piece of foil on the grill to avoid cross contamination and then I used my gluten free buns and chips. That way I could eat what everyone else was eating and the host was the only one who knew anything different.

Like Lisa said though, it is your health and you will realize how much better you feel when you do not have gluten. For me, it's definitely not worth it to eat anythign I'm not supposed to have!

Thanks for your thoughts. I am not worried about hurting someone else's feelings, those are words the doctor used. I don't know why anyone in our situation were worry about what someone else thinks. If the other people don't understand then that would be their problem.

[GottaSki]

Doctor was definitely wrong! During my transition to gluten free it seemed reasonable that if I accidentally consumed gluten it wouldn't be a big deal as prior to gluten-free I had consumed major amounts of gluten.

Boy was I wrong!

You'll find many posts in this forum regarding people becoming extremely sensitive once gluten-free. My body attacks the smallest amount of gluten with a vengeance.

[Tigercat17]

Hi everyone,

I have to say my doc told me pretty much the same thing. He told me after I'm heal I might be ablee to "cheat" once in a while. I know... weird? But my nutritionist (who also has celiac disease) told me not even a crumb! Sounds like a lot of doctors aren't as informed as we would like them to be and really don't know a lot about this disease.

I've been gluten free for only two weeks now so I'm pretty new to all of this. A few months ago I didn't have any symptoms. Then I started having serious acid reflux & I lost my voice the whole month of July. Then I started having stomach pains, so the doctors order the endoscopy. I've always been on the slim side & had a very big appitaite. Now I know why.

Now I'm wondering what kind of reaction I'm going to have when I get glutened by accident. It doesn't sound like fun.

[GottaSki]

Now I'm wondering what kind of reaction I'm going to have when I get glutened by accident. It doesn't sound like fun.

Try not to worry...you may not have severe reactions...I went undx'd for 43 years and was much more ill than my 15 year old son. I now have severe reactions, but he only feels tired with accidental glutening. Some Celiacs have little or no reaction.

Good Luck to you!

[mysecretcurse]

That "doctor" should lose his license to practice.

It's stuff like this that made me stop seeing doctors years ago, after they failed to tell me my problems could be caused by something I was eating. I had to find out on my own the hard way after years of suffering and thousands upon thousands of dollars spent on these "doctors" who know less than I do about celiac disease. When WE have to educate our doctors, something is VERY wrong.

[angieInCA]

My Doctor actually said kind of the same thing. Said cheating every once in a while if I could tolerate it probably would hurt too much

I decided to take the advice of the good people here who have lived with this disease for years and stay far far away from the stuff. Besides, for me small accidental glutenings are just terrible to deal with for days....I can't imagine doing that to myself on purpose.

[heatherjane]

I think the point of all this is that when it comes to celiac, sometimes we have to take our doctors' advice with a grain of salt, unless they've proven their research and knowledge to be trustworthy. I've read and heard that since celiac was once considered rare and has no cure other than diet restrictions, that most mainstream docs are simply under-informed, due to the lack of time spent studying the condition in medical school and in outside research.

If your doc is telling you something that doesn't sit right, feel free to find a new one. I'm still not 100% sold on mine, but I'm trying to give him a good year before moving to another one. We'll see.

[lovegrov]

You need a new doctor.

richard

[tarnalberry]

don't discount the fact that doctors will often try to find the "best" approach for their patient. not the healthiest, but the best when all things are considered. if they (rightly, based on the research that's been done on the "general celiac population") assume that you're going to find a 100% of the time gluten free diet too hard to stick to, then they may well hope that the option of having that two or three time a year "pass" will keep you gluten free the rest of the time. it's true that eating gluten only two or three times a year is far better than ignoring the gluten free diet. it's not anywhere close to as good as maintaining a strictly gluten free diet, but if your doctor doesn't think you'll do that (and patient compliance problems are always an issue in a doctor's practice), then he/she may be trying to suggest something that's better than nothing.

(no, I don't think they should go around making these assumptions. I think they're creating self-fulfilling prophecies. but I think you may get a doctor who knows 100% gluten free is the best route, but may still say this to a patient to otherwise improve compliance.)

I would probably ask the doctor *why* that advice, if I were thinking about replacing the doctor. maybe they don't know, maybe they're making bad assumptions. the latter is easier to correct (though still not always possible) than the former.

[angieInCA]

My whole problem with the "alright to cheat every once in a great while" sceanario is, while we all have the best intentions to be good on our diet, if we give ourselves a pass 2 or 3 time a year, that 2 or 3 could easily and quickly turn into 4 or 5 or once a month or everyother week before one knows it.

For me, there is no other option than being strict about the diet. Lord knows I get accidentially glutened often enough, I don't need to do it on purpose.

Besides, the one thing I noticed is after a while the gluten cravings went away and even the smell of gluten isn't appitizing. By reintroducing it into my diet I would wake up the whole craving process again. It would be like breaking myself from a drug over and over and over.....what a nightmare

[tarnalberry]

I should have clarified - I absolutely think the doctor's advice is horrid. Absolutely dumb advice to be giving a patient. But I think it's fair to try to understand why they might say something dumber than you'd ever expect, in order to try to work past that with your doctor. It's not just useful for "treatment" of celiac, but for most other things that you may see your doctor for, since the diagnostics and prescribing they do are going to - necessarily in order to get the job done - be full of assumptions.

That said, the doctor is still giving terrible, awful, don't-ever-listen-to-it advice.