Struggling As A Celiac:(

[w8in4dave]

I am going to say this because I'm not sure anyone else noticed, and because someone who can be the "tough parent" needs to do it. If you want your parents to take your disease seriously, first you have to. Until you do, your parents won't, and you can't expect them to. You can't expect them to take things like cross contamination seriously, or statements like "no, just a little bit is not okay" seriously when you are willing to sit down and eat meals of fried chicken, mac & cheese, and biscuits and gravy.

 

What you think you just did was poison yourself physically, make yourself feel bad for a bit and you'll get over it. What you actually did was poison every last effort and bit of progress you ever made with your parents. What your parents now see is that what it truly comes down to, is that you simply are being picky. From their perspective now, you don't want to eat what they are working hard to put in front of you. If you wanted to you just would, after all you ate the fried chicken. And they can throw that back in your face every time it comes up.

 

What you need to do is two things. First, realize that you haven't made a choice, you've pretty much been given an edict. No gluten. There is no cheating, no sneaking, no work arounds. Accept it, move on. You need to stop thinking of certain things as your favorite foods. Either the gluten free versions are your favorites now, or you have new favorites. That just is the way is has to be, you'll be happier accepting that fact. One of my favorite things in the whole world has always been cupcakes, still is, now it is just gluten free cupcakes. You adjust your attitude or die inside a little every time you see what you can't have. Second, get your parents with you to your doctor. Now that you have done the damage of eating all of that in front of your parents you need to undo the damage. Having that discussion together can help them understand that it really is a serious disease that needs to be taken seriously. It may also help you hear it again right now since you are obviously struggling with it.

 

Remember though, you only fell off the wagon. There is no reason to stay off the wagon. We trip, we fall, accidents happen. Brush yourself off and keep walking. Everyone here is here to help. And also remember what I said first, I am saying all of this from the tough love parent point of view. (I'm doing a lot of that this weekend... teenagers. )

I feel the same way!! You are in control!! If you know it has Gluten in it do not eat it!! You are in control!! Thats my feeling also!! If someone doesn't want to understand then thats their prob! 

[Pegleg84]

I think you need to carve out a space for yourself in the kitchen. Offering to cook a few meals a week for your whole family is a great idea, but until your family also agrees to make things that are safe for you, then you should be cooking for yourself. If you schedule it right, you can still eat with your family. Get yourself some kitchenware that's dedicated to gluten-free use only, buy your own groceries and label them. If they won't accommodate you, then work around them.

 

But I also agree with Adalaide. You have to take this seriously before they will. NO GLUTEN! cross-contamination is still going to happen on occasion, but the more careful you are, the less it will happen. But if you're eating things you know have gluten in them, that's some serious damage happening there, and it will take you much much much longer to heal.

 

That's my biggest advice: take charge of your own food and cooking. You have to make sure what you're eating is safe, not them. If your family sees you taking it seriously and taking charge of your health, they'll come around.

 

Good luck!

 

Good luck

[AlwaysLearning]

Yeah, I'd work harder at teaching everyone around you about the dangers of contamination and continued exposure. 

I had pain and bloating long after going gluten-free, but vitamin deficiencies appear to have been the cause, or at least supplements seem to have helped ease the pain and get me back to my normal size again. Plus, cravings went away once I took care of the worst of them so I am less likely to eat just because my body is in need, rather because I'm actually hungry.

[bellalunarena]

I live off of sandwich meat, cheese, chex gluten-free cereal, carrots, and apples basically.  If I could just have a few more selections to choose from my life would be MUCH easier!

 

Now when I am away at school it is a much different story.  There's always something I can eat there and the food services take care of my needs:)

Be careful with lunchmeats!!! I learned that the hard way! 

 

And good that you go to a school that has options for you!

 

Wish I could offer more advice, but I'm only a week post-celiac dx and I have been reading my arse off.

[kareng]

Be careful with lunchmeats!!! I learned that the hard way! 

 

And good that you go to a school that has options for you!

 

Wish I could offer more advice, but I'm only a week post-celiac dx and I have been reading my arse off.

I haven't found any regular lunch meats that have gluten in them. Which brand are you referring to ? You might find a contaminated deli slicer, but pre- package cold cuts are usually gluten-free.

I'm in the US so I suppose it could be different in another country.

[Adalaide]

Actually, I also have found that most packaged lunch meat is fine. Recently I found a single one that wasn't, it was the Oscar Mayer bacon flavored balogna, and it was a clearly labeled gluten source, no hiding or any such nonsense. It is only the deli counter I worry about.

[notme]

boar's head in the deli counter is gluten free - i just gotta watch the slicer people and make sure they change gloves, etc.  if they screw up, i jump their sh!t and make them do it over lolz so they know me pretty well  

[Adalaide]

boar's head in the deli counter is gluten free - i just gotta watch the slicer people and make sure they change gloves, etc.  if they screw up, i jump their sh!t and make them do it over lolz so they know me pretty well  

 

I do this when I'm desperate. The grocery store right by my house sells two brands of deli meat, Boar's Head and some other brand, some of which do contain gluten. Why the hell... boggles my mind. But I make them clean the slicer and change gloves, all that if I am totally desperate. I do have a deli on the other end of the city that sells only Boar's Head, I usually just go there, spoiled brat that I am. (They're also the only place locally that sells Lebanon bologna.... to die for!)

[bellalunarena]

I haven't found any regular lunch meats that have gluten in them. Which brand are you referring to ? You might find a contaminated deli slicer, but pre- package cold cuts are usually gluten-free.

I'm in the US so I suppose it could be different in another country.

I was completely wrong. The deli meats used were Dietz & Watson. In all likelihood, the source of my gluten came from cross-contamination.

 

Don't beat me up! I'm still learning, lol!!!

 

But I did some more research apparently some uber-processed deli meats have hydrolized vegetable protein or modified food starch as fillers, and some sausages have bread crumbs as fillers, and then some turkey and chicken cuts are injected with broth or stock. One of my former classmates has celiac disease as well, and he said to be really careful about anything with modified food starch, that sometimes they will list what their source of that starch is, but sometimes they won't. 

 

I guess if anything, calling the company or visiting their website would be best. 

 

I still have so much to learn. 

[bellalunarena]

This is very interesting. May I ask how the doc went about diagnosing you?

I'd like to know too. I want to avoid ingesting gluten for the sake of a biopsy.

[bellalunarena]

I messed up today and ate fried chicken... and gravy... and a teensy bit of mac-n-cheese.  Needless to say I feel pretty bad right now! (that mac-n-cheese might have been worth it though ) 

I'm sorry, but this makes me really mad. 

 

As Adelaide said, you willingly sat down and ate that meal. Willingly. And It wasn't a bite of bread or other gluten goodness. It was a meal. Adelaide is right, how on earth can you expect your parents to take you seriously when you willing made a choice to eat that meal?

 

It isn't just "Oh I'll be feeling crappy later". If you are a celiac, ingesting gluten tells your immune system to attack your digestive tract and destroy it. I have made yummy meals for my kids containing gluten (taking proper precautions to safeguard my own wellbeing), and I want to take just one teeny tiny bite. I want to, so very very badly, and I cannot. To do so is irresponsible. To do so is to tell my body to stop healing, get wrecked, and start to heal all over again. I have thrown a temper tantrum over a stupid Belgian waffle. I cried, broke down in tears and cried (I rarely cry.) for two hours when it occurred to me that I will not ever be able to ingest the Christmas cookies my grandmother has made me every year for the past 26 years. She can make me gluten-free ones, and already took it upon herself to learn everything she can about baking gluten-free cookies, just so I can have a plate of cookies from my grandmother this Xmas, and they will probably be AMAZING, but they will not be the exact same cookies she made me before. I cried over freaking cookies.

 

Because not even my grandma's cookies are enough to make me willingly poison myself, go through the agony as my body attacks me, and restart the healing process all over again.

 

Your seemingly flippant approach to your celiac disease is frightening, and infuriating. The mac and cheese might have been worth it?!?!? I would kill for some freaking mac and cheese made with Velveeta cheese sauce drenching some elbow shaped semolina pasta. And don't even get me started on fried chicken. I just want an entire bucket of KFC Original Recipe. I'd annihilate the entire thing. But to indulge that would be stupid of me. Is any food worth the pain I had after my CC glutening? No. I have stuck to a strict fruits, veggies, fish, meats, etc diet. I am so afraid of that pain again that if I can't see how it's prepared, or if I haven't prepared it myself, I won't eat it. 

 

That you would know the lousy feeling, the pain, etc., and consciously make a choice to eat something that triggers that...is mind-blowing to me. 

 

I hope that mac and cheese was worth it, to you. It will never be worth it to me.

[kareng]

I was completely wrong. The deli meats used were Dietz & Watson. In all likelihood, the source of my gluten came from cross-contamination.

Don't beat me up! I'm still learning, lol!!!

But I did some more research apparently some uber-processed deli meats have hydrolized vegetable protein or modified food starch as fillers, and some sausages have bread crumbs as fillers, and then some turkey and chicken cuts are injected with broth or stock. One of my former classmates has celiac disease as well, and he said to be really careful about anything with modified food starch, that sometimes they will list what their source of that starch is, but sometimes they won't.

I guess if anything, calling the company or visiting their website would be best.

I still have so much to learn.

That is why you read the ingredients on everything you buy. Wheat must be labelled. I have never seen it injected in meat. Modified food starch is corn unless specified otherwise. These are just US laws. In the US, most sausages don't have bread fillers - a few do, so read the ingredients. Bread fillers in sausages are more common in Canada and the UK and Australia.

Once again....gluten is not hiding if you read ingredients. You might be surprised that it is added to something but that doesn't make it hidden.

Edited to add: Velveeta was gluten free the last time I looked. Find a gluten-free pasta and enjoy some Mac & cheese

[psawyer]

But I did some more research apparently some uber-processed deli meats have hydrolized vegetable protein or modified food starch as fillers, and some sausages have bread crumbs as fillers, and then some turkey and chicken cuts are injected with broth or stock. One of my former classmates has celiac disease as well, and he said to be really careful about anything with modified food starch, that sometimes they will list what their source of that starch is, but sometimes they won't.

Modified food starch is almost always either tapioca or corn. If it is wheat, then the word "wheat" MUST BY LAW appear either in the ingredients list, or in a "contains" statement following the ingredients.

Hydrolyzed vegetable protein is often soy. Again, if it is wheat, then the word "wheat" MUST BY LAW appear either in the ingredients list, or in a "contains" statement following the ingredients.

Starch, when listed as a single word ingredient, must be corn starch.

ETA: The Velveeta I have is gluten-free. It is a Kraft product--Kraft will clearly disclose any gluten source.

[laura1959]

Honestly, I am appalled at this thread.  I can't understand why a parent would willingly give gluten containing foods to a child in their care after a diagnosis of celiac, and I can't understand why society would allow it.  What would we think if a parent withheld insulin from a diabetic child?  We'd call that abuse, and we'd have that parent hauled in front of a judge.  This situation is NO different.  

[Adalaide]

Honestly, I am appalled at this thread.  I can't understand why a parent would willingly give gluten containing foods to a child in their care after a diagnosis of celiac, and I can't understand why society would allow it.  What would we think if a parent withheld insulin from a diabetic child?  We'd call that abuse, and we'd have that parent hauled in front of a judge.  This situation is NO different.  

 

I would be no different, if she were a child. If a parent of a child diagnosed with celiac were to feed them a KFC dinner, I would absolutely agree with you that they should be charged with child abuse and hauled through the court system. I have seen parents have flippant attitudes and I just want to scream at them, I want to tell them that their attitude and what they feed their child amounts to the same as hitting their child. They are causing physical damage that isn't just here and now but could have lifelong repercussions.

 

The difference here is that Lexi is an adult, although she lives at home while on summer break, she attends college and is fully responsible for making her own choices in regards to what goes in her mouth. Yes, there is a point at which people are making a tenuous transition between child and adult which is difficult, especially in navigating the parent/child relationship. But that does not excuse Lexi from her responsibility as an adult to make her own choices about her health and what she puts in her mouth. Blaming her parents for her inability to make a healthy choice is just making an excuse for her and telling her it isn't her fault for making a bad decision.

[laura1959]

Thanks for this clarification.  I am new here.  I haven't read through the whole thread or all of her posts and concluded that she was a minor based on her reliance on her parents to feed her, from this thread and others I've seen.  

 

It sounds like she is struggling with coming to terms with the need to take matters into her own hands as a young adult, and that her parents are not helping her.  Whether she is a minor or not, this is still abusive behavior on the part of her parents, and I think Lexi needs to understand it as such and protect herself accordingly.  

[notme]

lexi is doing better, i think  i think i saw her on here, kicking around traveling food ideas, so she is planning ahead for her trip.   we all hit a bump sometimes, i know i have.

 

bella - make sure your grandma doesn't cc you - she probably has more hidden gluten in her baking equipment and she doesn't come with an fda warning lolz     also, i think i told you i use bragg's amino for soy sauce sub - that is for soy sauce that is made out of wheat/has wheat listed in the ingredients.  if you have no sensitivity to soy, you can use 'real' soy sauce, made from soybeans.  i have seen it in most grocery stores and it's probably cheaper than using the braggs.

 

addy - that is quite a concept.  hmmmmmmm........  i have a grandson who, i am fairly certain, has my lovely celiac gene.   planets are aligning, satellites are linking up........

[laura1959]

lexi is doing better, i think  i think i saw her on here, kicking around traveling food ideas, so she is planning ahead for her trip.   we all hit a bump sometimes, i know i have.

 

 

 

That's good to know!  I don't mean to be a meanie, but I get a bit rankled when I see parents taking their kids' health concerns too lightly.  I hope Lexi will continue to stay here and work toward figuring out how to protect her health.  It's a lot to take on, for sure, even for those who have excellent support systems at home.  Butting out now.  

[lexibrowning]

Hey everyone! For those I upset, I apologize. I was just diagnosed this summer and am still coming to terms with the fact that I cannot eat these things because it actually causes damage. Originally I was deemed gluten intolerant and was told that while gluten makes me feel rotten, it wasn't causing any permanent damage. So when things came up (like that delicious mac-n-cheese) and I was craving it badly there were times that I'd just deal with the headache and stomach issues. I cannot choose to do that now and it is difficult for me. Especially as a very recent adult who is used to relying on her parents for food (and whose parents still expect her to rely on them). I have been doing better. In fact, I was on a roll there for a little while on eating fruits and veggies and turkey/chicken and avoiding all gluten. I was glutened yesterday slightly however (completely on accident) because my mom bought me some Annie's gluten free snicker doodle bunnies and some cheddar ones. Except the cheddar ones weren't gluten free and I had already had a nice handful of them. That was last night and I seem to be okay...I may have slept off my normal symptoms. Fingers crossed.

Anyway, I am doing much better. I understand some of yalls frustration. Just please keep in mind that I am young and I am new to this.

Thanks for the help and support everyone!

[nvsmom]

I'm sure as time goes on, you'll get used to reading every label. It took me quite a few months to make it a habit but it became one eventually.

 

As for those who asked about how you tested positive while gluten-free, it happens. When my tTG IgA was tested a year ago back when I was on gluten, my result was over 10X the upper limit; after one year gluten-free, my result was almost double the upper limit yet I am positive that I had not had any gluten (cc) accidents for a good 5 months. It just takes some people longer for their antibodies to calm down. I would guess that at least a quarter of celiacs take many many months for their blood to get back to normal.

[laura1959]

Thanks, Lexi.  I was worried about you, and not being around too much so far, I made assumptions.  Sounds like you are working out what you need to do to make this hard transition.  I admire you for that; not sure I would have been able to be that strong about it when I was your age!  

[w8in4dave]

Good Girl!! Huggs!! And Good luck sweetie!!

[bellalunarena]

That is why you read the ingredients on everything you buy. Wheat must be labelled. I have never seen it injected in meat. Modified food starch is corn unless specified otherwise. These are just US laws. In the US, most sausages don't have bread fillers - a few do, so read the ingredients. Bread fillers in sausages are more common in Canada and the UK and Australia.

Once again....gluten is not hiding if you read ingredients. You might be surprised that it is added to something but that doesn't make it hidden.

Edited to add: Velveeta was gluten free the last time I looked. Find a gluten-free pasta and enjoy some Mac & cheese

I do love Velveeta.

 

I've found a pretty acceptable corn pasta, but when I reheat leftovers, the mac and cheese just turns into this corny mush. But that was made with shredded white cheddar and a roux-based cheese sauce, so I tossed some olive oil in a fry pan, coated little balls of the mush with seasoned (seasoned by me) gluten-free bread crumbs and fried up those bad boys. Eased a craving I had for fried mac 'n cheese...and then I hit the gym, lol.

 

My next pasta to try is this rice spaghetti. I have plans for that for an Asian twist on Spaghetti and Meatballs. :-)

[bellalunarena]

Hey everyone! For those I upset, I apologize. I was just diagnosed this summer and am still coming to terms with the fact that I cannot eat these things because it actually causes damage. Originally I was deemed gluten intolerant and was told that while gluten makes me feel rotten, it wasn't causing any permanent damage. So when things came up (like that delicious mac-n-cheese) and I was craving it badly there were times that I'd just deal with the headache and stomach issues. I cannot choose to do that now and it is difficult for me. Especially as a very recent adult who is used to relying on her parents for food (and whose parents still expect her to rely on them). I have been doing better. In fact, I was on a roll there for a little while on eating fruits and veggies and turkey/chicken and avoiding all gluten. I was glutened yesterday slightly however (completely on accident) because my mom bought me some Annie's gluten free snicker doodle bunnies and some cheddar ones. Except the cheddar ones weren't gluten free and I had already had a nice handful of them. That was last night and I seem to be okay...I may have slept off my normal symptoms. Fingers crossed.

Anyway, I am doing much better. I understand some of yalls frustration. Just please keep in mind that I am young and I am new to this.

Thanks for the help and support everyone!

Lexi, that's how I was. I thought I had a gluten intolerance, and once in a while, I deemed it worth the pain. I misunderstood that fried chicken meal to mean you'd willingly ate it after your celiac dx.

 

I completely understand the anger and frustration. I'm going through it too...except I bite people's heads off.  I just want to throw a huge temper tantrum, especially when a couple of friends make comments like "Hey, let's go to Maggiano's" and then we get there and they decide they want to do family style and order a bunch of things that I can't have, nix anything without pasta, and then wonder why I sit there in stony silence at my favorite restaurant, setting them all on fire in my mind as they shovel their faces full of the foods that used to be my favorites, eating nothing myself.

 

And then there are wonderful moments, like when my Mister overheard me say to a friend of mine "I'm dying for some good Chinese but I can't trust there not to be any gluten or cc'ing going on", and took me to PF Chang's, who are really, REALLY vigilant about allergies/celiac/intolerances. 

 

Sorry for biting your head off. I misunderstood, and flew into a hissy fit because I couldn't fathom why anyone would choose (not talking about accidental stuff here) to do that.

 

:-(