Struggling As A Celiac:(

[lexibrowning]

Hello! I am new to this website.  I think it would be nice to have people I can talk to about this that will actually understand.

 

I am the only person in my family that has been diagnosed with Celiac Disease and it has been quite a ride.  I am almost 20 years old (now a sophomore in college) and my parents just don't quite understand how this whole thing works.  Has anyone ever told you that having just a little bit of gluten wouldn't be so bad? And you look at them like they have totally lost their minds? haha then you understand my problem!

 

I am constantly surrounded by foods that I love but can't eat in my house.  My favorite cereal and ice cream are currently in our kitchen now, along with nutrigrain bars, crackers, soups, pasta, pizza, cookies, and so on.  In the very bottom of our fridge we have a few apples... and that is basically the only thing I can eat in this house.  We also go out to eat quite often and that is also always a struggle.  

 

I don't have any support from my family and friends.  My mom has even been critical about my gaining weight since going gluten-free.  I want her to understand how difficult it has been since being diagnosed (around 1 1/2 years ago) and how my body is still really out of whack. 

 

On top of this my stomach still isn't fairing well.  It isn't nearly as bad as it what while eating gluten, but I still have to constantly go to the bathroom after meals and I still bloat like crazy which makes me really uncomfortable.  The only things that have really changed are that I don't get crazy migraines anymore (thank goodness!) and my body doesn't always ache.

 

I am also CRAVING everything I can't have like crazy recently.  So bad that I might even slip up and that scares me.  Why am I craving so much?!

 

Does anyone else deal with all of this? How do you guys cope with the lonely celiac life? 

[kareng]

What's wrong with your mom?  All she has for you to eat are apples?  I'm the mom of a 20 year old boy and I can't imagine not trying to help him with his health issues and making sure he has good, safe food to eat.

 

But...you are 20, so I guess you could offer to do the grocery shopping and cooking until you go back to school?  I think your mom should fund the grocery shopping trip.  You don't have to buy expensive "gluten-free" products.  Get chicken and beans and cheese (if you eat that), hamburgers (yours without the bun), eggs, ice cream without cookies in it, etc.

 

 Can you get your mom to read on here?  Tell her I don't understand how she has a child diagnosed with a very real disease and she won't help her child.

 

Maybe she will read this?

Open Original Shared Link

[dani nero]

Your cravings might be a sign that  you need more nutrition? There is an introductory 101 thread in the very top of this board by IrishHeart. It is very good reading. Lots of information about our needs and the learning curve we go through while healing.

 

 

Welcome to the forum, nice to meet you :-)

[dani nero]

What's wrong with your mom?  All she has for you to eat are apples?  I'm the mom of a 20 year old boy and I can't imagine not trying to help him with his health issues and making sure he has good, safe food to eat.

 

But...you are 20, so I guess you could offer to do the grocery shopping and cooking until you go back to school?  I think your mom should fund the grocery shopping trip.  You don't have to buy expensive "gluten-free" products.  Get chicken and beans and cheese (if you eat that), hamburgers (yours without the bun), eggs, ice cream without cookies in it, etc.

 

 Can you get your mom to read on here?  Tell her I don't understand how she has a child diagnosed with a very real disease and she won't help her child.

 

Maybe she will read this?

Open Original Shared Link

 

Mothers usually come around once they've seen how serious we are about the matter. They are very sceptical in the beginning because the condition seems  unreal to them. I wish there was an effective way of educating people without having to go through the same conversation with everyone and sounding like a broken record.. and that doesn't require convincing them to go read about it.

[lexibrowning]

What's wrong with your mom?  All she has for you to eat are apples?  I'm the mom of a 20 year old boy and I can't imagine not trying to help him with his health issues and making sure he has good, safe food to eat.

 

But...you are 20, so I guess you could offer to do the grocery shopping and cooking until you go back to school?  I think your mom should fund the grocery shopping trip.  You don't have to buy expensive "gluten-free" products.  Get chicken and beans and cheese (if you eat that), hamburgers (yours without the bun), eggs, ice cream without cookies in it, etc.

 

 Can you get your mom to read on here?  Tell her I don't understand how she has a child diagnosed with a very real disease and she won't help her child.

 

Maybe she will read this?

Open Original Shared Link

Thank you for replying!  My dad is actually the one who does the grocery shopping, but my mom is the one who makes the shopping list.  Sometimes I go with my dad (if I am home) shopping so that I can put stuff in the cart that I can eat.  My mom always says that she shouldn't have to make things "special" for me.  As in if she is going to make mac-n-cheese or spaghetti, then she will make it how she likes it and I can either eat it (and feel like I'm dying) or scrounge up something else to eat.  I don't even really expect her to do anything "special" for me now (I used to, but she makes me feel selfish), but just buying a variety of fruits and vegetables would suffice.

 

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:)

[kareng]

.

 

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:)

Tell your parents - I think its really sad that a bunch of strangers care about their daughter and her health more than they do. Maybe a kick in the behind will get them to think?

You don't happen to go to Colorado State, do you? I could introduce you to my son........

[lexibrowning]

Tell your parents - I think its really sad that a bunch of strangers care about their daughter and her health more than they do. Maybe a kick in the behind will get them to think?

You don't happen to go to Colorado State, do you? I could introduce you to my son........

I will talk to them about, although there is a 99% chance that they won't really care, but I suppose it is worth a shot!  If nothing changes though, at least I only have another month before fall semester begins!

 

I go to Mississippi College actually:) It's been a really great experience!  I hope your son is enjoying Colorado State! 

[kareng]

I will talk to them about, although there is a 99% chance that they won't really care, but I suppose it is worth a shot! If nothing changes though, at least I only have another month before fall semester begins!

I go to Mississippi College actually:) It's been a really great experience! I hope your son is enjoying Colorado State!

I know your a little young, but....do they realize that untreated Celiac often effects a daughter's ability to give them grand kids?

I'm sooooo sorry your parents don't care. If you were diagnosed with diabetes or cancer, would they care? Celiac is a real autoimmune disease.

We have lots of Mom's on here and a few Dads, so you can have some extra parents here.

[Adalaide]

I can't even begin to imagine treating my own children this way. It makes me sick to think a mother could be like that.

 

My best advice is that since cooking is an important life skill for anyone, you should probably offer to cook dinner a few times a week. Nothing fancy, and you can get ideas from the dinner thread. https://www.celiac.com/forums/topic/75238-the-whats-for-dinner-tonight-chat/page-437 There are plenty of naturally gluten free things to make wonderful meals. Maybe seeing that meals can be "normal" and delicious and safe for you will make a difference.

 

And hey, at least summer vacation is half over right? Don't throw anything at me!

[lexibrowning]

I know your a little young, but....do they realize that untreated Celiac often effects a daughter's ability to give them grand kids?

I'm sooooo sorry your parents don't care. If you were diagnosed with diabetes or cancer, would they care? Celiac is a real autoimmune disease.

We have lots of Mom's on here and a few Dads, so you can have some extra parents here.

I bet they would care a little bit more if I had diabetes or cancer!  I think it is just because Celiac is still sort of a "new" thing to society.  My parents never heard of it growing up and now that their daughter has been diagnosed with it, I am sure they just don't know what to think.

In my mother's defense (not really...) she is so busy taking care of my high-maintenance little brother that often times she just doesn't want to deal with my issues.

Not an excuse really, but I can see her struggle.

[lexibrowning]

I can't even begin to imagine treating my own children this way. It makes me sick to think a mother could be like that.

 

My best advice is that since cooking is an important life skill for anyone, you should probably offer to cook dinner a few times a week. Nothing fancy, and you can get ideas from the dinner thread. https://www.celiac.com/forums/topic/75238-the-whats-for-dinner-tonight-chat/page-437 There are plenty of naturally gluten free things to make wonderful meals. Maybe seeing that meals can be "normal" and delicious and safe for you will make a difference.

 

And hey, at least summer vacation is half over right? Don't throw anything at me!

That is really great advice! This past year I have learned to cook a multitude of gluten-free HEALTHY meals and snacks, as well as some much needed desserts! Our kitchen just isn't stocked for me to cook most of it.  I have gotten her to agree to eat gluten-free spaghetti noodles though! So i guess we're moving in the right direction:)

 

And while most 20 year olds are sad about summer being over, I am the weird nerdy girl who loves college and taking classes! So I agree; at least summer is over half way through!

[kareng]

I bet they would care a little bit more if I had diabetes or cancer! I think it is just because Celiac is still sort of a "new" thing to society. My parents never heard of it growing up and now that their daughter has been diagnosed with it, I am sure they just don't know what to think.

In my mother's defense (not really...) she is so busy taking care of my high-maintenance little brother that often times she just doesn't want to deal with my issues.

Not an excuse really, but I can see her struggle.

She has had him tested, hasn't she? All first degree relatives should be tested. Bad behaviors can be a symptom of Celiac in kids.

I'll be back with the link for his doctor.

Open Original Shared Link

[shadowicewolf]

Ah, well, its hard.

 

I agree going and getting food that you can eat. Find things that you like that replace that. For example, when i'm around pizza, I often go get myself a large apple with peanut butter or i make my own pasta dish. I certainly miss a lot of foods, but you will find things that replace them.

 

I would also suggest to try and ignore the comments. Sometimes people cannot see what is not physical (as opposed to your example where they can see it and relate to it as they have heard of it). Perhaps printing out some studies done on celiac will help?

[BZBee]

Have you sat down with your parents and asked them how they feel about your disease? The reason I ask this because they may be in denial. They may not want to realize that something is wrong with their daughter, especially when there are genetic links. They may feel guilty because they feel responsible for you being sick. I know it's silly but I've seen many parents do this with children of autism and diabetes.

[kareng]

Now I have read your blog on here, I understand your parents better. You haven't actually been diagnosed with Celiac Disease. You cut out gluten and felt better, but without any help from a doctor. To your parents, this is probably a lot like you deciding to be a vegetarian - it's a choice.

Could you have Celiac disease? Definitely. Or it could be Non-Celiac Gluten Intolerance. You feel better gluten-free and that's a good thing. But I now understand why your parents are not very concerned. To them its just a fad or a whim.

Edited to add:

I keep getting interrupted.

Even without a diagnosis, if it made my kid feel better, I would help him. My oldest has discovered that something in normal cheap shampoos make his skin itch. He has no diagnosis but I buy him the expensive stuff because he says it makes him feel better.

[AmandaMae]

Hello! I am new to this website.  I think it would be nice to have people I can talk to about this that will actually understand.

 

I am the only person in my family that has been diagnosed with Celiac Disease and it has been quite a ride.  I am almost 20 years old (now a sophomore in college) and my parents just don't quite understand how this whole thing works.  Has anyone ever told you that having just a little bit of gluten wouldn't be so bad? And you look at them like they have totally lost their minds? haha then you understand my problem!

 

I am constantly surrounded by foods that I love but can't eat in my house.  My favorite cereal and ice cream are currently in our kitchen now, along with nutrigrain bars, crackers, soups, pasta, pizza, cookies, and so on.  In the very bottom of our fridge we have a few apples... and that is basically the only thing I can eat in this house.  We also go out to eat quite often and that is also always a struggle.  

 

I don't have any support from my family and friends.  My mom has even been critical about my gaining weight since going gluten-free.  I want her to understand how difficult it has been since being diagnosed (around 1 1/2 years ago) and how my body is still really out of whack. 

 

On top of this my stomach still isn't fairing well.  It isn't nearly as bad as it what while eating gluten, but I still have to constantly go to the bathroom after meals and I still bloat like crazy which makes me really uncomfortable.  The only things that have really changed are that I don't get crazy migraines anymore (thank goodness!) and my body doesn't always ache.

 

I am also CRAVING everything I can't have like crazy recently.  So bad that I might even slip up and that scares me.  Why am I craving so much?!

 

Does anyone else deal with all of this? How do you guys cope with the lonely celiac life? 

I am in the same position as you! I'm 20 and was diagnosed about a year and a half ago. My parents have come around, but at first my dad got personally offended when I wouldn't "just try" something with gluten in it, and my mom thought I was so rude for not eating food with gluten that she made. I feel your pain. I have been struggling with weight gain too, and I recently went completely insane and went to every single fast food place and ate all the gluten possible for about a week. It has been easier since I moved out of my parents house and buy my own food because bread isn't always staring me in the face. 

I still have some stomach issues but they have improved A TON after I gave up dairy, which is another added restriction but it was definitely worth it. I lost about 10 pounds and I don't bloat nearly as much any more. Can you go shopping for your own groceries? That would probably help a lot! 

I cant imagine having no support though . 

I have found that replacement gluten products are not the best and almost every time they leave me crying over my food and how much I miss the gluten. So I just try to eat dishes that are gluten free to begin with like meat and potatoes, and fruits and vegetables. 

 

I tried to take it as an opportunity to get healthier and that really has been a blessing. I eat a ton of fruit which helps with my cravings and it helps with weight loss too. Eating out is a particular challenge that I haven't gotten used to. I was always the girl who never made any trouble for the waitress and now I have to drill them with questions about what I can eat and even then, they think I'm rude or just making a big deal out of nothing. 

 

I'm sorry I don't have many suggestions, I just feel the same way and am really struggling with this disease. 

[lexibrowning]

Oops! I left out a part in my blog then sorry!

I was diagnosed with gluten intolerance probably 8 months ago. This past summer I forced my mom to let me go to the doctor again because I had totally stopped eating due to being nauseous every time I took a bite of my food. It turns out I had some bacterial imbalance in my stomach but they checked for Celiac in my blood work and so I was officially diagnosed a month ago. However, I had already been eating gluten free and assumed I had it long before this so I usually just say 1 1/2 years.

[dani nero]

Were you diagnosed with celiac even though you were already gluten-free?

[lexibrowning]

Were you diagnosed with celiac even though you were already gluten-free?

Yes.  I heard the blood tests wouldn't come back positive if I wasn't eating gluten, but my doctor seemed sure it would still work.

[lexibrowning]

I am in the same position as you! I'm 20 and was diagnosed about a year and a half ago. My parents have come around, but at first my dad got personally offended when I wouldn't "just try" something with gluten in it, and my mom thought I was so rude for not eating food with gluten that she made. I feel your pain. I have been struggling with weight gain too, and I recently went completely insane and went to every single fast food place and ate all the gluten possible for about a week. It has been easier since I moved out of my parents house and buy my own food because bread isn't always staring me in the face. 

I still have some stomach issues but they have improved A TON after I gave up dairy, which is another added restriction but it was definitely worth it. I lost about 10 pounds and I don't bloat nearly as much any more. Can you go shopping for your own groceries? That would probably help a lot! 

I cant imagine having no support though . 

I have found that replacement gluten products are not the best and almost every time they leave me crying over my food and how much I miss the gluten. So I just try to eat dishes that are gluten free to begin with like meat and potatoes, and fruits and vegetables. 

 

I tried to take it as an opportunity to get healthier and that really has been a blessing. I eat a ton of fruit which helps with my cravings and it helps with weight loss too. Eating out is a particular challenge that I haven't gotten used to. I was always the girl who never made any trouble for the waitress and now I have to drill them with questions about what I can eat and even then, they think I'm rude or just making a big deal out of nothing. 

 

I'm sorry I don't have many suggestions, I just feel the same way and am really struggling with this disease. 

Hi! Thank you for sharing! I'm glad you understand how it feels to be so young and have to deal with all of this.

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 ) 

 

Replacement gluten-free foods are often loaded with extra sugar and starch, I've discovered, which isn't helping my weight gain problem.  I've laid off going out and buying that stuff and started sticking to natural fruits and vegetables too.

 

I have been considering giving up dairy also! Part of me feels like I need to get this gluten-free thing down though before I embark on that adventure.  We shall see.  I am glad it has worked so well for you!  I am hoping that it will work the same way for me.

 

And I totally understand about the going out to eat thing.  People think I'm crazy, but there's a rare few that actually care about my condition and want to help me out.  Those people get really nice tips;)

[lexibrowning]

Were you diagnosed with celiac even though you were already gluten-free?

Yes I was

[GottaSki]

Welcome Lexi!

 

Sorry to hear you are having such a tough time at home -- Karen is right....there are quite a few parents on this forum who will try to help....me included.

 

I agree with making a real effort to help or take over the shopping while on your break.

 

Offer to cook just one family dinner per week, maybe two.  If that goes well more until you return to school.  Starting with one should be easy enough for you and a nice break for your Mom. 

 

Sometimes us parents tend to view our young adult kids as children -- I am guilty of this.

 

That being said, your whole family needs to be tested.  If you have suggested this before....try again...prepare a dinner conversation as you would prepare a presentation at school.  Use handouts...be sure to re-visit the past two years of your realization that you have Celiac Disease -- am a bit confused about your diagnosis process -- but whether it is Celiac Disease or NCGS you need to be gluten free and there is a real possibility your brother or parents may need to be as well.

 

It may not seem fair...but living the way you are is not fun and certainly not good for your health.

 

Make a plan....present the facts to your family in a clear concise manner...things may get better.

 

If not...make sure you are along for the shopping missions or minimally add to your Dad's shopping list:  chicken, pork, ground beef or turkey, rice, potato, gluten-free pasta, specific fruits and veggies you need purchased and then proceed to eat right for you.  Most processed foods labeled gluten-free are much more expensive and not great for a healthful diet -- so fill that frig with whole food -- adding a few labeled gluten-free items as treats.  There are many mainstream "treats" that are naturally gluten-free - I'm guessing you know many of them from eating away at school.

 

Oh for that first dinner...simply baked chicken with salt and pepper, rice and a vegetable is easy to make even if you have never cooked before...pop back in if you need step by step instructions.

 

Hang in there

[dani nero]

Yes I was

 

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

[w8in4dave]

Sorry to hear about your parents not being understanding! My hubby is the same way. Altho I di the shopping, but on the weekends he likes to cook! He is Mr. Noodle man! He loves his Noodles! Anyway we were trying to figure out what we could eat one day and he suggested something with a bunch of Gluten in it, I said ohhh I can't eat that it has Gluten in it. His response was "Well a little bit won't hurt you" I told him it was like eating a lil bit of poison ivy, I think that next time I go see the Dr, I will have my husband go with me, so the Dr. Can explain to him, NO means NO gluten. I hope you find the answers your looking for , I know it's not in my post. I am just here to let you know you are not alone.

[Adalaide]

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. )