I'm An Idiot.......i Also Need To Speak Up!

[MissyBB]

Last night was the first time, since going gluten-free, we have been to  another couple's house that we have dinner dates with. We switch months and last night was the month the other couple were hosting. I didn't want to appear "rude" or make the host feel like I was an "inconvenience" so I didn't mention anything about gluten etc.

 

They had Greek.....yeah, gyros..... Sigh.......

 

In an attempt to not appear rude etc, I ate half a pita with my meal. BIG MISTAKE! OMG....I will NEVER do that again.    I was up most of the night with cramps, diarrhea and generally feeling like someone literally was twisting my guts around. I feel all over just BAD today. 

 

Please tell me that I am not the only person to ever be so stupid as to have eaten something to be "nice". Let me tell you, I have learned. NEVER again. We host next month and I am gonna bring this up when they are at our home and hopefully that will mean some gluten-free options when they host next time. The wife of the couple is allergic to seafood so I am assuming she'll understand. 

 

I have not been diagnosed. I pretty much deduced this on my own a few months ago and have been gluten-free since April 1st. 

 

Has anyone else been gluten-free and ate a small little amount of wheat/gluten and paid the price for it before? Gawd......stupid! 

 

I mean, I "knew" wheat/gluten was a problem but now that I have been off it for 3 months and was reintroduced it was worse than it ever was when I was just eating it before. Ugh.

[notme]

yes, ma'am, i have done that - it was right in the beginning and my dear friend brought me over a flourless chocolate cake.  in my defense (of my stupidity lolz) i had no clue about cc whatsoever - and i only had a little piece.  oh, boy, lesson learned!  

 

so, don't feel alone.  and, yes, you either need to speak up or bring yourself something to eat (or a dish for everyone, just serve yourself first) i *never* trust other people to cook for me - even when i am watching them do it and they are trying ever so hard, they always do something that makes me say:  not eating that.  my friend was making a whole chicken, rinsed it, put it in clean stainless steel pan, put olive oil on it salt, pepper, etc, alll gooood.....  until she cut up some lemon and herbs on her cutting board that she cut bread on the night before.  say it with me:  not eating that.  

[nvsmom]

I hope you feel better soon.

 

No, I haven't been that polite. LOL I just decline eating what they serve. As a general rule, I always bring food when I go to peoples homes. Salads are great to bring because I can load up on that. I usually bring a dessert too as some people get stumped by gluten-free dessert.

 

As you said, I'm sure your friend will understand in the future.

[kareng]

I haven't done it.  But I have had a hard time not eating something someone made for me that is supposed to be gluten-free.  Unless they have Celiac, it is hard for them to know what is gluten-free.  It would be hard to make sure they prepared the food safely.

 

For example, Many people don't realize soy sauce has wheat in it.  They might marinate your lovely gluten-free meat in it.  They might use the colander they drained gluten pasta to drain your gluten-free pasta or rinse the veggies.  I'm afraid you may just want to make all the food for your dinners yourself but let them provide the drinks & clean their house. 

[bartfull]

I'm with NotMe. I will not eat at anyone's house. Even if that woman hadn't cut the lemons on a gluteny cutting board, you never know if she had the pan the chicken was cooked in sitting on the counter when she poured a cup of flour into another dish she was making. Or maybe she used a wooden spoon to stir something.

 

I don't expect my friends to learn about CC to the extent where they feel uncomfortable in their own kitchen, but on the other hand, I don't expect them to be insulted if I explain that I must bring my own food. So far I haven't had the slightest problem.

[notme]

I'm with NotMe. I will not eat at anyone's house. Even if that woman hadn't cut the lemons on a gluteny cutting board, you never know if she had the pan the chicken was cooked in sitting on the counter when she poured a cup of flour into another dish she was making. Or maybe she used a wooden spoon to stir something.

 

I don't expect my friends to learn about CC to the extent where they feel uncomfortable in their own kitchen, but on the other hand, I don't expect them to be insulted if I explain that I must bring my own food. So far I haven't had the slightest problem.

barty - they have never NOT messed it up one way or another.  very carefully cutting up zucchini, onions, etc on a paper plate, toss in olive oil, salt & pepper, turned my back for one second and she throws it into her non-stick pan.  not eating that.

 

salt & pepper & granulated garlic on rib-eyes, waiting to be grilled (mine on foil on a shared grill, i'm ok with that as long as i'm watching) guy picks up steaks and disappears with them, the next thing i know, they are ALL on the grill.  not eating that.

 

patting burgers and putting them on paper plates, ready for the grill.  i have my own little grill that has never touched gluten.  he picks up all the plates and STACKS THEM (bottom of plate on burgers!  eew anyway....)  not eating that.  

 

my husband can probably keep me safe.  and.  that's it.  (and i still watch him lolz)  

[Adalaide]

I know there are many here who do successfully plan and dine at other people's houses. I simply don't have any friends I would trust my life with. I do have friends we invite over occasionally for dinner and they usually bring drinks. Since they have kids they usually bring kook-aid. I won't touch the stuff. God only knows where the spoon it gets stirred with has been. I can't afford to be sick for a month to be polite. And no, I'm not sorry.

 

It is possible if you do it right to teach your friends how to cook safely for you. They can buy on their own, or you can provide, a new cutting board, colander, a few utensils and whatever else you think would be necessary. They obviously won't be able to cook in any of their non-stick pans unless they look completely brand new (frankly I personally wouldn't eat anything that has ever been in a non-stick pan that ever had gluten in it, others may disagree if it is non-damaged and well cleaned) and you'll need to verify the safety of literally every single ingredient used that isn't just a plain fresh food. And as was pretty clearly pointed out, you'll have to watch. Because unless you live this every day chances are that the person will screw up. The cooking will need to be a joint affair or you'll end up right back where you are now, only it won't be on purpose or out of politeness next time.

[MissyBB]

Thank you everyone for your replies. I think you are all right......there needs to be a plan in place if we are to continue our dinner meetings. Maybe I will bring both an appetizer and an entree/side to every one of their hosting nights just so I have something to eat that I KNOW is safe. 

 

I am not worried so much about CC because I don't think I am celiac. I DO think I am gluten/wheat sensitive though. For example, if someone made, say, a cheesecake and inside that entire cheesecake recipe (say, 10 servings) there was a 1/4 cup of flour, I could eat the cheesecake and not really get sick from it. But if I go and actually eat a piece of bread or had a cookie - both things that are 90% wheat - then I would feel it. I would feel it just like last night.

 

We really need to sit down and just talk about having non-wheat parts of meals OR, if they are having something that includes wheat (like the pita last night or something with a bun) they could tell me ahead of time and I could bring my own wheat-free alternative. I just know I can't have what happened last night happen again.

 

As a side note it's been about 24 hours now since I ate at their house. I am just now starting to feel better. Not my old self my - not in constant crampiness and feeling so tired I just want to go to bed. At least now I can function. 

[love2travel]

Thank you everyone for your replies. I think you are all right......there needs to be a plan in place if we are to continue our dinner meetings. Maybe I will bring both an appetizer and an entree/side to every one of their hosting nights just so I have something to eat that I KNOW is safe.

I am not worried so much about CC because I don't think I am celiac. I DO think I am gluten/wheat sensitive though. For example, if someone made, say, a cheesecake and inside that entire cheesecake recipe (say, 10 servings) there was a 1/4 cup of flour, I could eat the cheesecake and not really get sick from it. But if I go and actually eat a piece of bread or had a cookie - both things that are 90% wheat - then I would feel it. I would feel it just like last night.

We really need to sit down and just talk about having non-wheat parts of meals OR, if they are having something that includes wheat (like the pita last night or something with a bun) they could tell me ahead of time and I could bring my own wheat-free alternative. I just know I can't have what happened last night happen again.

As a side note it's been about 24 hours now since I ate at their house. I am just now starting to feel better. Not my old self my - not in constant crampiness and feeling so tired I just want to go to bed. At least now I can function.

Hopefully you do not have celiac but just know some of us were diagnosed as silent celiacs. I did not get ill even eating tons of gluten on my gluten challenge. That was 2+ years ago. After accidentally ingesting gluten a few months ago (a minute amount) I became dreadfully ill. Perhaps it may be worth pursuing in your case.

[nvsmom]

 

I am not worried so much about CC because I don't think I am celiac. I DO think I am gluten/wheat sensitive though. For example, if someone made, say, a cheesecake and inside that entire cheesecake recipe (say, 10 servings) there was a 1/4 cup of flour, I could eat the cheesecake and not really get sick from it. But if I go and actually eat a piece of bread or had a cookie - both things that are 90% wheat - then I would feel it. I would feel it just like last night.

Those with on-celiac gluten sensitivity (NCGS) can have almost as many long term health problems as a celiac....just minus the villi damage. Eating gluten can increase your chances of other health problems, many of which are permanent. Those with NCGS must avoid gluten.

I'm a celiac and I have varying reactions to gluten, and gluten amounts too. I had some years where I barely reacted and other years when I couldn't stand up straight after eating, my hair fell out, I had migraines a few days a week, and my joints felt 90. If you are having any reaction to gluten, you should consider getting tested.

[Juliebove]

Nope.  I would never do that.  I don't think it is polite to deliberately make myself sick.  In fact if I do get a dinner invitation but I tell the host that I am on a special diet and will bring my own food.  I used to bring a salad.  I no longer digest salad very well.  I just do not trust eating food that other people make at their houses.  Sometimes they are my worst enemy even though they are trying hard to make something for me.  In my case it is not celiac but diabetes and a whole slew of food intolerances.  I have had people make "diabetic" desserts.  I don't eat desserts.  They will use margarine instead of butter, not realizing that most margarine contains milk.  They will use Egg Beaters, not realizing that Egg Beaters are made of egg.  Stuff like that.  So it's a huge waste of their time because they will make a dish that not only will I not or can't eat but a dish that nobody else wants to eat either!  It just saves trouble all the way round for me to just bring my own food.  Others also don't understand cross contamination so even something that could appear safe might not be.  I have watched people cut a sandwich with wheat bread (wheat used to be the issue for my daughter) and cheese on it then use that same knife to cut some fruit or something.  And they can't understand why we can't eat the fruit.

[MissyBB]

Just a side thought on all of this.......I have been essentially gluten-free (with the exception of two incidences) since April 1st. I read a lot of posts on this forum last night about the varying side-effects of gluten, both big and small, on those with diagnosed celiac. I had NO idea they could be so varied. I thought if you were a "true" celiac then you could never tolerate ANY gluten at all. Yes, I know that there are those with celiac who are like that but I am referring to NVSmom who said:

 

I'm a celiac and I have varying reactions to gluten, and gluten amounts too. I had some years where I barely reacted and other years when I couldn't stand up straight after eating, my hair fell out, I had migraines a few days a week, and my joints felt 90. If you are having any reaction to gluten, you should consider getting tested.

 

 

I always assumed that celiac was celiac. It was either ALL gluten-free or one crumb might as well be one cup of gluten to get the same side effects. And this is the reason that I wrongly assumed I could not possibly be celiac but rather just intolerant.

 

Anyway, after that long way of getting to my question.........since I have been gluten-free since April 1st and have only had two incidence of wheat/gluten since then, if I went and got a blood test next week, would the antibodies still show up or would I have to eat gluten to have them show? Now that I have been lurking and reading here on celiac.com I am concerned that my concern level about my intolerance might be somewhat flippant. Maybe I DO need to get tested. But I don't want to have to go and eat gluten to get a positive. Would the markers still be present?

[Mr. GF in Indiana]

Just a side thought on all of this.......I have been essentially gluten-free (with the exception of two incidences) since April 1st. I read a lot of posts on this forum last night about the varying side-effects of gluten, both big and small, on those with diagnosed celiac. I had NO idea they could be so varied. I thought if you were a "true" celiac then you could never tolerate ANY gluten at all. Yes, I know that there are those with celiac who are like that but I am referring to NVSmom who said:

 

 

I always assumed that celiac was celiac. It was either ALL gluten-free or one crumb might as well be one cup of gluten to get the same side effects. And this is the reason that I wrongly assumed I could not possibly be celiac but rather just intolerant.

 

Anyway, after that long way of getting to my question.........since I have been gluten-free since April 1st and have only had two incidence of wheat/gluten since then, if I went and got a blood test next week, would the antibodies still show up or would I have to eat gluten to have them show? Now that I have been lurking and reading here on celiac.com I am concerned that my concern level about my intolerance might be somewhat flippant. Maybe I DO need to get tested. But I don't want to have to go and eat gluten to get a positive. Would the markers still be present?

The variation in symptoms, time of life when symptoms appear, blood work results, endoscopy sampling, types of symptoms, vary widely and unpredictably from person to person. You may not be celiac; you may be celiac and even top level testing if you find a doctor who knows what he or she is doing and cares (rare) may turn up all sorts of other problems. You need to consider being scientific in studying your own system: can you handle corn, wheat, oatmeal, sorghum, do you have rashes on your skin, do you need a gut test...and endlessly on. The resources of the internet such as rightdiagnosis.com and pubmed.com can help you list and study your own problems and reactions, but simply guessing what or if you have problems isn't going to get you improved with a high degree of confidence. Also, being absolutely rigorous in eating and preparing food, if you do have celiac or gluten sensitivity or egg reaction...any of it...is not something to be trifled with, nor is lactose intolerance (which is pretty common). Some people try the fodmap diet (research on internet) to find things to eat that don't ever lead to upset, then add one food at a time to test (ideally someone else arbitrarily adds that to your food and doesn't tell you when it is, or isn't, being added in small amounts, so that your brain doesn't trick you into thinking you are reacting). It is not simple or cheap or easy and you cannot rely on doctors at all. Even endoscopies for celiacs often miss the area with damage (same with colonoscopy, etc etc). I had perhaps fifteen doctors, good doctors, concerned doctors, tell me point blank I don't have celiac, and the sixteenth one reviewed my notes and research...and found it and got it confirmed (but the damage is permanent). Ultimately, celiac disease is in fact rare (probably less than 1% of the population), but it can hide as thyroid problems, lack of b12, dry beri-beri, vitamin D, bone loss, parathyroid disease. Now, the most frustrating of all: those who are for real, confirmed celiacs, between 40-60% will eat wheat anyway after diagnosis; and many who follow a wheat free diet don't know they are sensitive to other grains in some way, or other foods. Finally, many people take drugs or supplements that in fact interreact or have wheat in them or corn starch. Check rxlist.com.

[NotMollyRingwald]

Those with on-celiac gluten sensitivity (NCGS) can have almost as many long term health problems as a celiac....just minus the villi damage. Eating gluten can increase your chances of other health problems, many of which are permanent. Those with NCGS must avoid gluten.

What she said! For example, I'm NCGS and will never get my gums back to normal (they receeded horribly) and my enamel is so far gone its a miracle if I don't have a cavity at every dental visit. I am just past 4 weeks gluten-free again (after gluten trial for EGD), before that I had been "strictly" gluten-free 8 weeks but still had lots of symptoms because I wasn't avoiding CC or paying enough attention to labels. I have totally done what you did. The regret quickly followed. Lol I think it's a bit harder to get past the "being rude" feelings when you aren't actually diagnosed (Celiac or otherwise)...at least for me it is, for some silly reason I feel like I have to justify my reaction to gluten with something concrete. Well duh Amy, as if getting wicked sick for a week after even a tiny bite of gluten containing food isn't concrete?? *face palm* I guess what I'm trying to say is, it's easier to say "I have a disease that requires me to be a nazi about avoiding gluten." vs. "Gluten makes me sick as a dog so I avoid it at all costs." Especially right now when gluten free has become a fad diet option.

Anywhoo, don't beat yourself up too much (well, just enough to learn from this mistake

[notme]

 (ideally someone else arbitrarily adds that to your food and doesn't tell you when it is, or isn't, being added in small amounts, so that your brain doesn't trick you into thinking you are reacting)

*CRINGE!*

 

ok, it makes sense, but still....  anybody else?  you add anything to my food and i will Break Your Arms!  

 

[nvsmom]

*CRINGE!*

 

ok, it makes sense, but still....  anybody else?  you add anything to my food and i will Break Your Arms!  

 

LOL.

Missy BB - you might still have antibodies, they can really linger in some people. For example, I had a doctor check my antibodies after one year gluten-free and one test (tTG IgA) was still positive although much lower, and the other (EMA IgA) was negative. Other people's tests show normal in a matter of weeks. Unfortunately there is no way took know which type you are...

If a gluten challenge of two slicesofbread a day for a month or more would be too difficult for you, I suggest getting tested immediately and hope for accurate results. If they turn out negative, you can assume you are NCGS and tightenup your diet so you're 100% gluten-free.

Good luck in whatever you decide todo.

[cap6]

I did the same it the first couple of months.  Ate a friends "gluten free" meal in her gluteny kitchen all to be nice.  Never again!    We have to learn the hard way don't we!!!   I have another friend that wanted to cook for me and went out and actually bought new pots and pans to use just for me.  All good till I watched her brush some crumbs off the counter with her hand.  Gulp!!!   Not working for me!!!  So much easier to bring my own food.  No wories for anyone that way. 

[Fire Fairy]

November 2nd will mark my three years of being gluten free. Last November I went to my boyfriend's parent's home for Thanksgiving. I didn't eat much as my first gluten-free Thanksgiving had been an epic fail. I did eat though as 1) I really wanted to be polite and make a good impression as this was my 1st meeting with his parents. 2) As various family members had various food issues and I saw gluten-free cookbooks everywhere (bought just for me) I decided I had to have faith. To my knowledge it was fine. Since then I've gotten brave and appear to have successfully re-introduced dairy, egg, and soy. I've gone to several resturaunts and eaten at a few other folks homes and all seemingly without incident. That said if I unknowingly work in an area where a cookie or a dog biscuit has been placed I start getting a migraine in under an hour with other symptoms to follow. A tiny unseen crumb gives me reactions that last around 5 days.

 

Now here is what I'm wondering: It took about a year gluten-free for the nausea to go away, then for a year it was gone, well it seems to have come back in the last two months. Have I been letting myself get CC'ed to the point I've created more damage? It's just the nausea that seems to be back. And no I'm not pregnant. Not actually vomiting either just sick to my stomach.

 

PS I don't have any medical tests to back up being Celiac just a MD who figured it out. My mom had the Celiac panel done a couple weeks ago and it came back negative despite her having a slew of Celiac symptoms. She will be 76 at the end of the month, she is very ill and the Dr's are clueless. I've gotten her to agree that if the neurologist doesn't find anything wrong she will try gluten-free. Which makes it more important I know if I'm messing up because the last thing I want to do is make her sicker after she goes gluten-free.