New Diagnosis, Quick Question

[Z3ro]

I've just been diagnosised with Celiac and have been eating gluten free for the past week.  Going ok so far, but I have a question about a scenario that I'm sure will come up.

 

In the course of my reading up on the disease, I've read in many places that any gluten is bad; a quote I've read several times is that one crumb is the same as eating a loaf of bread.  I understand (mostly) the autoimmune response and the fact that it attacks your small intestine even if you have no external symptoms.

 

But what happens when you're in a situation that eating gluten becomes unavoidable?  Specifically, something like a family party, where I can bring my own food and insult the host, or be almost assured of being CCed.  Even if there are gluten free options (say, turkey, fresh veggies, etc), they've been prepared in the same kitchen as all the gluten products by someone who does't understand CC the way I do.

 

Given this situation, where I'm almost assuredly eating some amount of gluten, should I just go whole-hog?  If a crumb is the same as a loaf of bread, why not just eat the bread, assuming I can handle the external symptoms (I get a mild stomach ache and some heartburn, nothing major)?

 

I fully intend to stick to this diet, as much as I may not be thrilled about it, but I'm trying to make sure I know how I handle myself when I'm out (already went out once, had to pass on the eating).  Thanks for any advice.

[kareng]

So, your saying that your family would be insulted by you taking care of your health? Your family expects someone with a severe peanut allergy to eat the Pb cookies they made and die? They think a person with diabetes can't take a minute to check their blood sugar and give them self insulin? Why would you want to associate with these evil people?

Ok ..maybe that is a bit extreme...but do you see the point? They wouldn't want you to poison yourself. You just need to explain it to them. Then bring your own food for awhile, at least. Until you understand eating gluten-free better and can figure out if you can eat any of their food & how to deal with these gatherings. You can say your doctor said so....that works for many older family members.

[Z3ro]

So, your saying that your family would be insulted by you taking care of your health? Your family expects someone with a severe peanut allergy to eat the Pb cookies they made and die? They think a person with diabetes can't take a minute to check their blood sugar and give them self insulin? Why would you want to associate with these evil people?

Ok ..maybe that is a bit extreme...but do you see the point? They wouldn't want you to poison yourself. You just need to explain it to them. Then bring your own food for awhile, at least. Until you understand eating gluten-free better and can figure out if you can eat any of their food & how to deal with these gatherings. You can say your doctor said so....that works for many older family members.

Thanks for the response, and that certainly is the long-term plan.  In the short term, both mine and my in-laws can be a bit...obtuse.  They're good people, but sometimes I wonder.

 

But what I'm really looking for is an answer; when the choice is gluten or starve, should I just dive in?  I can't see a problem when talking about one crumb=loaf of bread.  If not, why not?

[shadowicewolf]

Ideally you should always have something with you (such as trail mix or fruit).

The issue with your problem is that once you are off gluten for a while and then reintroduce it, your symptoms could be worse than what you originally had before the dx.

 

Personally, I would do without. It is not worth it to me.

[cyclinglady]

Karen's advice, as usual, is excellent.

 

At parties and family gatherings (which I usually try to host), I bring my own food (and eat prior to going too).  I bring enough to share and then I'M the first to go through the line before someone can cross contaminate the dishes I brought (I help with the set-up and wash off metal serving spoons too).    Email or mail articles to you in-laws and talk about celiac disease.

 

Here's why continue to eating it during "parties" is completely wrong.  My initial symptoms were simply anemia and Hashimoto's Thyroiditis (had it for almost 20 years) and since I have a genetic anemia, docs didn't catch the iron deficiency anemia.   

 

About five weeks ago,  I fractured one of my vertebrae doing NOTHING!  I did not fall, I was not in a car accident.  My bones have been compromised (bone scan in two weeks) because of celiac disease. 

 

IF YOU CAN'T PREPARE FOOD FOR A PARTY, THE ANSWER TO YOUR QUESTION IS TO STARVE DURING A PARTY! 

 

Yes, you can cheat and not feel the effects short term, but long term problems can be devastating!  I can not get back on my bike until I get my bone scan results.  I can not run because it bothers my healing back.  Pain is gone -- just tweaks, but I have back numbness not to mention the fear that I might just spontaneously fracture another vertebrae or something else!

[notme]

 

 

IF YOU CAN'T PREPARE FOOD FOR A PARTY, THE ANSWER TO YOUR QUESTION IS TO STARVE DURING A PARTY! 

 

 

been there, done that.  if i get glutened it takes 2 days for it to fully hit me.  then it's another 12 of feeling like i've been hit by a truck.  not worth it.  

 

most of us have some sort of food with us at all times, lolz.  ya never know when you're going to be stuck without anything to eat.  just avoid having to make that choice by thinking ahead - make a sandwich, bring a dish to share, as others have said.  good luck! 

[Adalaide]

No one is going to die if they go to a party and don't eat for a few hours. So you may be hungry. So what? So someone may get all butthurt over the fact that you don't want to spend the entire party in the bathroom with exploding bowels. Again, so what? If that is the kind of people hosting the party, you can either explain to them with the patience of a saint that it really just isn't safe for you to partake and they can be understanding, or you know not to go to their parties any more. You now have a built in jerk-o-meter. (Yeah, I stole that... sue me. )

 

Do you really prefer to be sick, risk your long term health, spend a day (maybe more) in the bathroom and in agony, plus all the other symptoms that you may get... over someone's feelings about what you put in your mouth? Are you freaking serious?!?! If they don't like that you care about your health, they're jerks and you don't need to associate with them. Family or not.

[kareng]

Thanks for the response, and that certainly is the long-term plan.  In the short term, both mine and my in-laws can be a bit...obtuse.  They're good people, but sometimes I wonder.

 

But what I'm really looking for is an answer; when the choice is gluten or starve, should I just dive in?  I can't see a problem when talking about one crumb=loaf of bread.  If not, why not?

I don't understand the choice of eat gluten or starve. You know you will be wanting to eat, so you can bring something. Keep a packet of nuts or a gluten-free granola or protein style bar with you, always.

If the choice is to eat rat poison or starve, which would you chose? Especially because we you aren't talking about really " starving ".

I get the feeling you are either in denial about the severity of Celiac Disease or you are playing with us a bit.

[GottaSki]

Thanks for the response, and that certainly is the long-term plan.  In the short term, both mine and my in-laws can be a bit...obtuse.  They're good people, but sometimes I wonder.

 

But what I'm really looking for is an answer; when the choice is gluten or starve, should I just dive in?  I can't see a problem when talking about one crumb=loaf of bread.  If not, why not?

 

One crumb can be just as harmful as a loaf of bread...the point here is until you remove ALL gluten your body will continue to attack itself.  If you understand that you should not eat a loaf of glutenous bread than understand that a crumb of that loaf is not acceptable either.

 

Either remove gluten or don't....but you are risking a lot more than just being uncomfortable...a crumb / a loaf -- neither is acceptable with Celiac Disease - ever.

 

Imagine those that are unaware of how to prepare safe food for you are sprinkling that food with broken glass - how much are you willing to ingest?

[1desperateladysaved]

The theory of eating a little and trying to "fit in" until you try it seems good to my family.  Many of us who react to minor cross contamination do not care to repeat the experience.  I am pretty sure you will find that too, if you accidently get gluten.  I would not even consider having gluten on purpose.  I  have more intense reactions after going gluten free.  I think my body  is now able to tell me something horrible is happening to it and it does.

 

I think it is right not to surprise your family with it.  Last time I went to a extended family meal, I e-mailed family members beforehand to let them know I would be bringing my own.  I blamed it on celiac disease, and said that I was willing to bring food for anyone else that had celiac disease.  Nobody stepped forward.  I included my disappointment in not sharing their food, and my longing to be in their company in spite of it.

[AlwaysLearning]

First, congratulations on getting a diagnosis and starting on gluten free. That is HUGE and I do hope that the positive affects on your body start to appear quickly as they do make it easier to keep your resolve up.

But I'm going to skip talking about the effects on your digestive system that you can't see. Others have already covered it.

Rather, I'll stick to some of the reactions you can expect to have if you do eat gluten after already going gluten free. Everyone's reactions do vary but these do seem fairly typical.

• If you have a bad reaction to being glutened, you may have diarrhea that starts while you are still at the party. If you are really sensitive, you may even throw up.

• If you have a lesser reaction, you can still expect to have an upset stomach, which may include lots of gurgling, gas, bloating, etc, with or without diarrhea later.

• Even if you got lucky and missed the digestive reactions because you really tried to avoid the foods that contain gluten and only got a slight cross contamination, you'd still be likely to get the mood and headache reactions, and that means getting irritable (a nice way of saying really angry) and getting a headache (even as bad as a migraine level). And even before the anger kicks in, you will already be off your game when it comes to social skills. 

• My reaction normally includes my sinuses which means I'll start sneezing, have a runny nose, and get phlegm in my throat as well the sinus pain and pressure.

• Some people will also have skin reactions which could be as simple as having a bit of an itchy rash, to as much as breaking out in hives. 

• After you get through those initial reactions that may resolve themselves in the first day or two, you can look forward to feeling fatigued, lethargic, and unmotivated (brain fog) for as few as 2-4 days to as much as 2 weeks after being glutened. And as far as I can tell, this is true for everyone, no matter how small the contamination or how severe their reaction.

So all issues of long-term affects and hidden damage to your intestines aside, my question would be, do you really want to risk having a reaction while you are at the party and to then suffer the recovery as well? 

Okay, that said, being in your first week of being gluten free, you may not have as strong a reaction as all of that. Chances are you haven't managed to completely eliminate cross contamination from your own kitchen yet or still have some hidden sources of gluten in your foods. But even then, I'd expect some level of reaction.

Personally, I'd much rather have my family or friends have a perceived insult because I didn't eat their food than to actually have a reaction and have them be insulted by something I said or did when in the midst of it, because they definitely won't understand that! And you often don't even realize that you are in the midst of a gluten reaction until after you've gotten all riled up about something that you would normally overlook or have started to feel lousy. 

I know there are some threads on this forum somewhere about how people react when they've been glutened. I'd track one of them down prior to the party to help you bolster your resolve not to be poisoned. You're likely to have quite a few hiccups from true accidents in the near future, and they'll be tough enough to get through, so I'd avoid all of those that you know are a risk. And you're going to have to start refusing their food at some point, so it may as well be now.

But you will succeed. And this forum is definitely a great place to be for help getting through the early stages.

[whitepine]

In my experience, once I started the gluten free diet and I ended up accidently getting into gluten a year after, the reaction was way worse than before. I understand how hard it is to be able to go to some ones house and pick through stuff/ask around. Sometime people are really accommodating other times they aren't. For example, if you are going to a family dinner and there's turkey, ask if it could be cooked unstuffed instead etc. It's hard to change peoples traditional cooking so being gluten free has made me the host more often for dinners so I know that things are gluten free and nothing will be contaminated. 
Otherwise I just stick to what I know at parties/dinners. I wont be able to eat as much as most people but I will pick what I know is safe to eat. Some people won't do that because their reaction is incredibly severe But I don't think it would be a good idea to dive in and eat, there are always options. If you eat gluten from time to time , you are just setting the clock back and your healing will be delayed over and over Even if you have to bring your own food, if people are upset about it, they get over it. You have to explain to them over and over that it's a disease and not a fad diet choice. If they choose not to believe you or whatever then they are obviously not the best people to have around. Friends and family should always support one another when it comes to being healthy and getting better especially if their illness is chronic and diet is the only way to control the symptoms.



 

[mbrookes]

I liked the idea (who was it?) of blaming it on the doctor. That is hard to argue with. I have said (almost whining!) "My doctor says I can't have even a bite. He's driving me crazy, but I have to do as he says". Blame it on the doctor. I promise you he won't mind and it will get you off the hook.

[kareng]

I liked the idea (who was it?) of blaming it on the doctor. That is hard to argue with. I have said (almost whining!) "My doctor says I can't have even a bite. He's driving me crazy, but I have to do as he says". Blame it on the doctor. I promise you he won't mind and it will get you off the hook.

I do that. I say the doctors at The Univ of Chicago Medical Center Celiac Center say " insert what you want them to know here". People think they are my doctors and I just let them think so. They have lots of advice on their website, so they are sort of our doctors.