I Dont Really Follow The Diet Im Suposed To

[jenniferleigh983]

i was diagnosed with celiac disease when I was 13. I am now 16. I dont follow my correct gluten free diet as I am supposed to.. and ive tried many times to quit..but somehow I end up eating it anyway.. i think ive tried 5 times or more. and it works for about a week or less. i dont klnow what i can do to help me stop. cause no one else around me has the same thing. i dont know anyone at all who shares the same struggle.. i just need to find a way to avoid it.. and yes, my mom does help me with it.

[cyclinglady]

I am sorry that you are struggling to maintain a gluten free diet. I know how important it is to fit in (I have a 13 year old daughter and, believe it or not, I was once a teen). I am not going to give you a lecture about it. You probably know the consequences like osteoporosis, anemia, malnutrition which is critical for a growing teen.

When is it hardest for you to avoid gluten? Home, restaurants or with friends?

[1desperateladysaved]

Don't you get consequences that are really difficult to deal with?  I ate 30+ years of gluten undiagnosed.  I drug through life brain fogged and fatigued not really living, but not dying yet.  I hope you choose not to live like that.  A healthy energetic life is what I hope you will shoot for.

 

Dee

[sunny2012]

I was not diagnosed for 40 years. I was near death, rushed to hospital via ambulance, passing out from low hemoglobin, and very serious all over body damage when doctors finally gave my symptoms some serious thoughts. I still have terrible stomach troubles. There are days life literally is not worth living just from not knowing that removing gluten would have stopped the terrible damage. It can kill. It can also leave you just wishing you had died.

 

You are very lucky to have been diagnosed early when the body can still heal very well. You get to choose how your going to live. What you put in your mouth is totally up to you. We never know at what point the body will have too much and suffer permanent damage. Is you life worth less than total health?

 

Yes, it is very hard to be so different. Be an example of an independent healthy human being. Show your peers that succumbing to peer pressure (real or imagined) is simply not worth losing ones health and life. You never know where it will take you.

[GFinDC]

Welcome Jennifer,

 

There is a sticky thread at the top of the coping forum with some beginner info that might be helpful  to you.  Here's a link to it also:

 

Newbie Info 101

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

I can tell you that lots of adults have issues adjusting to the gluten-free diet.  Changing your diet can be a little bit of a challenge.  I didn't think it was real fun myself.  But after doing it for  a few years it became the normal diet to me and I didn't miss the other foods anymore.  It just takes time and determination to make it work.    A little pre-planning helps too.  Like taking some gluten-free fruits and snacks with you on trips.  Some of us pack our own lunches so we have something safe to eat.  There are more restaraunts that make gluten-free food these days.

 

A good way to start eating gluten-free is to stick with whole foods and avoid processed foods.  Eating mostly meats, veggies, fruit and nuts and not much in the way of baked foods.  By doing this you avoid having to worry about the long ingredient lists on processed foods.  Plus whole foods are better for everyone.

 

gluten-free is becoming a standard diet option these days.  It's still considered unusual but is becoming more mainstream.  One estimate I saw said that about 30% of the USA population has at least one of the genes for celiac disease.  That's a lot of people that might get celiac disease at some point.  Having the genes doesn't mean you will get celiac, just that it is possible.

 

Now for the scary stuff.  There are a lot of potential problems that can develop in people with celiac who ignore the gluten-free diet.  People tend to develop additional auto-immune diseases over time.  This article has some info.

 

Celiac Disease Research: Associated Diseases and Disorders

https://www.celiac.com/categories/Celiac--Disease--Research..--Associated--Diseases--and--Disorders-c-3344

 

In addition to the risk of developing additional diseases, there is the issue of just plain feeling crappy.  Celiac disease damages the villi lining the small intestine.  That damage interferes with proper absorption of nutrients, (vitamins, minerals proteins etc) that our bodies need to function and repair themselves and grow.  Over time the body begins to fail due to starvation of vital nutrients, even though you are eating every day.  People start feeling tired and foggy and sometimes grouchy and forgetful too.  It's not a fun way to live.  It's especially hard on growing young people's bodies as their bodies need lots of nutrients to build tissue and grow properly.  Some kids end up being short adults or having other problems, like bad enamel on their teeth, hair falling out, skin rashes, etc.  So celiac's nothing to play around with and treat lightly.

 

A tricky thing about celiac is you can't always judge the damage by symptoms.  Some people have few digestive symptoms or even none at all.  But their gut is still being damaged.  That's called silent celiac.  The immune response can be kicked off by a small crumb of gluten, and can last for months.  So it can take quite a few months to get over a relatively small glutening.  That's why it's important to avoid all gluten, even trace amounts.

 

Well, there's an awful lot to learn about celiac disease, but you don't have to learn it all at once.  Once you decide to really go gluten-free, you find you start feeling better after a while.  And if it's hard there are lots of people on this forum who can help with suggestions etc.  We all went through the newbie stage ourselves so we understand how hard it can be.

 

I hope you stick around and do some reading on the forum.  There are a lot of helpful people here.

[notme]

Now for the scary stuff.  There are a lot of potential problems that can develop in people with celiac who ignore the gluten-free diet.  People tend to develop additional auto-immune diseases over time.  This article has some info.

 

Celiac Disease Research: Associated Diseases and Disorders

https://www.celiac.com/categories/Celiac--Disease--Research..--Associated--Diseases--and--Disorders-c-3344

 

In addition to the risk of developing additional diseases, there is the issue of just plain feeling crappy.  Celiac disease damages the villi lining the small intestine.  That damage interferes with proper absorption of nutrients, (vitamins, minerals proteins etc) that our bodies need to function and repair themselves and grow.  Over time the body begins to fail due to starvation of vital nutrients, even though you are eating every day.  People start feeling tired and foggy and sometimes grouchy and forgetful too.  It's not a fun way to live.  It's especially hard on growing young people's bodies as their bodies need lots of nutrients to build tissue and grow properly.  Some kids end up being short adults or having other problems, like bad enamel on their teeth, hair falling out, skin rashes, etc.  So celiac's nothing to play around with and treat lightly.

 

 

this ^  

 

you are coming up on a time in your life where you'll make decisions for yourself - decisions that will either make your life better for you or create situations that are difficult for years to come.  it *does* affect your whole body, including and most importantly, how your brain functions.  you can decide to make better decisions by cleaning up your diet and enjoying feeling well and making healthy-for-you choices that will help you think more clearly.  

 

i seriously think i would have made better choices, myself, at that age, if i would have been thinking clearly.  i spent many years cleaning up 'messes' i had gotten myself into just by deciding badly (aka not able to think things through:  ok, if i do this, what can happen?  what is the advantage or disadvantage if i decide to do this?  etc.)  or living reactively instead of proactively.  

 

you're in a good place to learn things that will make it easier for you.  welcome, and good luck

[w8in4dave]

Look at it as if Gluten is a drug! Just say no!!! It's hard because your young and want to fit in. But it will last the rest of your life. The more you say no to Gluten the easier it is! Does your family make gluten-free meals? My heart breaks for you sweetie! You need to take care of you!

[nvsmom]

Yeah... as the others said, a lot of bad things will happen if you continue eating gluten, they just haven't happened to you yet.

 

I had undiagnosed celiac disease at your age. By age 19 I developed another autoimmune disease (most likely triggered by untreated celiac disease) that almost caused me to bleed to death. By my 20's my hair started falling out and I had arthritis.... It hasn't caught up to you yet but it probably will.  

 

You need to get your parents on board to help make it easier for you to eat gluten-free.  They need to have lots of easy gluten-free foods and snack  foods for you so you have food in a hurry.  Hosting friends would make it easier for you too - if friends are on your turf, it's easier to eat safely.

 

It will be a lot of work, but you know it needs to be done.  Hang in there.

[jenniferleigh983]

i already have anemia, and it hard everywhere! like someone cooks a pizza i have to have it.. plus i dont wanna just say i am gonna eat something else while you guys have bread... its unfair really but i know, i have the disease. its gonna be like that

[jenniferleigh983]

i dont think it is necessary for them to follow what i have to.. i try by mysekf and try to eat nothing with gluten in it.. but i end up breaking down and saying i have to have it!!

[kareng]

As a mom, I have to ask - What is wrong with your parents? Why are they not helping and insisting you treat your medical condition? If you had diabetes, would they not be insisting on testing blood sugars and insulin injections? A peanut allergy - not having PB in The house? If you had strep throat, wouldn't they be getting you antibiotics? How will they feel when you cannot give them grandkids or cannot hold a job because you/they haven't treated your chronic disease? You are a teen ..... You can't be responsible for all of this! Child abuse/ neglect make me soooooo mad!

[ravenwoodglass]

i dont think it is necessary for them to follow what i have to.. i try by mysekf and try to eat nothing with gluten in it.. but i end up breaking down and saying i have to have it!!

I hope after your diagnosis that your doctor told your parents they, and any siblings you have, should be tested for celiac. It is pretty common for more family members to be diagnosed once one is. Do you go with your parents when they shop? If you don't you should so you can point out the safe things that you can eat. 

You say you want bread and pizza. Well those can be found gluten free easily in most places. Tell us what things you miss the most and folks here will be happy to fill you in on what is available to replace the gluten version.

You say you can't get past a week. Well gluten for some of us has an additive factor that can make the first week or two difficult for many. But you have to do it. Your life and quality of life depend on it. Read through some of the signatures on the board to see what the future has in store for you if you don't follow the diet. I would give anything to have been diagnosed at your age. My life and my childrens would have been so very different. 

[cristiana]

Hi Jennifer

 

Well done for coming here for help... that is a great start

.

I'm just wondering, do you have some good friends that you can enlist to be your 'gluten-free buddies' in this? What I mean is perhaps you could explain to a few of your friends what is going on, show them this website, etc so they see the potential seriousness of not sticking to the diet.   You could ask them to help you 'be strong' in social situations where you might feel tempted to give in.

 

My ten year old nephew was diagnosed with diabetes type I a couple of years ago and his sister really helps him stay on the straight and narrow when it comes to diet!  

 

If you can have a few things in your pockets or in a bag, if you carry one, that you can eat when everyone else is eating their gluten, that will really help.  For myself, I don't take risks taking gluten any more, simply because I became so ill prior to my diagnosis. That means that I will sit there in a restaurant or at a friend's house eating nothing rather than take a risk.  That can be a bit depressing but I can save myself that sinking feeling if I have a few nice things stashed away to eat in my bag.  And I have to admit that often includes a treat like a bar of chocolate (some 'mainstream' chocolate is gluten free! hooray!) and I can then share that with my friends too, which is nice.

 

Keep reading this site - it will help so much.  

[nvsmom]

Cristiana made a really good point. Many of us carry snacks with us because eating out is not generally safe. I usually have Lara Bars and nuts with me but for my kids I usually pack granola bars and treats. If you have food with you, it is easier to skip a food.  If you know there will be food, if you plan ahead and bring something, it makes it simpler for you... but I know many plans are spur of the moment at your age.

 

Best wishes.

[BlessedMommy]

Do you parents realize the severe issues that can happen as a result of untreated celiac? Did the doctor go over that with them when you were diagnosed?

 

As a minor child, it is their responsibility to take care of you and provide you with safe food that won't damage your health.

[RMJ]

Hi Jennifer, welcome to the forum. I have a few questions that might help us to give you advice.

Do you have symptoms or are you a silent celiac? (It is harder to resist gluten if it doesn't cause you any obvious trouble - but it is still damaging on the inside)

Is your trouble resisting gluten-containing foods because you want that food (in which case we can advise you on tasty substitutes) or because you don't want to appear different from your friends? (It is very hard as a teenager to be "different". Even as an adult it has taken me two years to get up the nerve to go out to lunch and tell people that I'm there to enjoy their company but will not be eating anything).

I hope that we will be able to help you.

[jenniferleigh983]

As a mom, I have to ask - What is wrong with your parents? Why are they not helping and insisting you treat your medical condition? If you had diabetes, would they not be insisting on testing blood sugars and insulin injections? A peanut allergy - not having PB in The house? If you had strep throat, wouldn't they be getting you antibiotics? How will they feel when you cannot give them grandkids or cannot hold a job because you/they haven't treated your chronic disease? You are a teen ..... You can't be responsible for all of this! Child abuse/ neglect make me soooooo mad!

oh no, your misunderstanding.. my mom tries to help yeah but i cant seem to follow mt correct diet mtyself. and my mom would take care of me if any of those things came up. although im allergic to all antibiotics.. lol but um, she takes care of anything thats wrong.. and i take meds for it.. i think its called digestive advantage.. but lately i have not been wanting to take it cause eating bread and not taking the meds, i go to the restroom pretty normal.. i jst want advice on how to avoid it all. it has nothing to do with my parents cause she does help me.

[jenniferleigh983]

Do you parents realize the severe issues that can happen as a result of untreated celiac? Did the doctor go over that with them when you were diagnosed?

 

As a minor child, it is their responsibility to take care of you and provide you with safe food that won't damage your health.

its me that isnt wanting to follow my diet.. my mom helps and she knows all about my disease but i just dont want to follow it.. its hard.

[jenniferleigh983]

I hope after your diagnosis that your doctor told your parents they, and any siblings you have, should be tested for celiac. It is pretty common for more family members to be diagnosed once one is. Do you go with your parents when they shop? If you don't you should so you can point out the safe things that you can eat. 

You say you want bread and pizza. Well those can be found gluten free easily in most places. Tell us what things you miss the most and folks here will be happy to fill you in on what is available to replace the gluten version.

You say you can't get past a week. Well gluten for some of us has an additive factor that can make the first week or two difficult for many. But you have to do it. Your life and quality of life depend on it. Read through some of the signatures on the board to see what the future has in store for you if you don't follow the diet. I would give anything to have been diagnosed at your age. My life and my childrens would have been so very different.

i know my smaller sibling doesnt have the same thing.. mine i think came from my dads side. my lil sister dont hav it cause she never has complained of her stomach hurting. i was always having stomach problems and always throwing up, so i finally went and got checked. and they diagnosed me with it. but i will suggest going to get her checked also.. i didnt think nothing of her having a chance of having it but i will get my mom to set us both a appointment, i would hate if she went through the same things.. but i need to go get checked again. cause it doesnt really bother me to eat bread. every once in a while itll make me feel sick but i just take meds to help. other than that i try and my mom helps out.

[MitziG]

Everyone here knows exactly what you are going through, thus everyone is being very supportive, which is great. But you need to also be told the cold, hard, very unpleasant truth- which is that it is time to take responsibility for your own health. How serious is what you are doing? Serious enough that your parents could lose custody of you for not enforcing the diet. They are screwing up big time, and they need to know it. Maybe it isn't their fault, you probably have a crap doctor who didn't explain the seriousness of the disease to them- not uncommon. Most doctors are very ill-informed. But letting you get away with eating gluten is akin to putting a gun to your head. Just because you don't go into anaphylactic shock right away, as with a peanut allergy, doesn't mean it isn't just as dangerous. And as someone else mentioned, if you don't die, you will wish you had. Celiac doesn't go away, and it doesn't get better. It destroys and it kills and for you to care more about a slice of pizza than your own life is really, really, really incredibly, impossibly, ridiculously stupid. Yes, it is HARD to have every social situation be awkward and inconvenient. You won't find anyone on here who tells you it isn't. We sit through work dinners where people wave pizza in our face and say "Just have a bite." We go to wedding receptions and drink a glass of water and maybe have a plain salad while everyone else is having wine, prime rib and wedding cake. When we go out with our friends and everyone says, "Hey, let's go get Italian!" we have a choice of speaking up and asking everyone to make their plans around US, or saying nothing and watching everyone else dig in. When we do go to restaurants with gluten free food, we have to grill every cook and server and pray they don't accidentally or intentionally gluten us. And we see the eye rolls when we say we have to be gluten free- and it hurts. Celiac sucks and it isn't fair. not one bit. But either is cancer. Or diabetes. Or multiple sclerosis. or lupus. Or having to have your intestines cut out because you couldn't resist a slice of pizza when you were a teenager, so now you have to wear a colostomy bag. In case you don't know what that is, it is a bag that holds your own poop. Great for the social life- "Sure I will come to the party. You don't mind that I have a sack of feces with me, right?" Well dear, if you keep doing what you are doing, life is going to get a whole lot more unfair than it is now, because you have all of those things and MORE in your future. Am I being mean? No. Am I trying to scare you? You bet I am. I want to save your life. I am telling you the same thing I told my own kids when they were diagnosed at 6 and 10. You don't get a choice in this. You don't get to talk yourself into cheating. you don't get to make excuses for why you can't do it. You don't get to say it is too hard. It isn't an option. You do it or you die. Plain and simple.

 

Gluten is just FOOD. It isn't your life. Your life is about being 13 and having decades ahead of you to enjoy. Your life is your friends and your family now, and the ones you will have in the future. Your life is that you will probably have the chance to look into the face of your own beautiful child someday- unless you keep eating gluten. celiac kills fertility, and it causes miscarriages. Not always, but enough that you should be worried. And once the damage is done- it is done. Do you want to tell your brand new husband one day that you gave up the chance to have children because you wanted pizza more? I doubt it.

 

Your parents aren't doing their job- they are failing YOU. But, you aren't a little kid- if they wont take responsibility, then you HAVE to. Show them these posts. Ask them to lurk around this forum and read the horror stories from people like me who spent most of their lives undiagnosed and suffered dearly for it. They need to understand, and most importantly YOU need to understand, that this is life or death. For you, this is not a "diet." This is medication, and you have to take it for the rest of your life. It isn't going away and it is unlikely they will ever develop an actual cure. So, it is time you accept it. You are celiac- now own it.There is a forum for teenagers here- spend some time there- you aren't alone. Please, read as much as you can about celiac. To succeed at this, you must be knowledgeable. You can't just buy gluten-free products at the store and think you are good. You have to learn about cross contamination, how to keep your home safe, and how to stay safe when you aren't at home. A crumb so small you can't even see it, is all it takes for your immune system to decide to start ripping up your intestines- whether you feel it or not. 

 

Now, before you get completely depressed, I can say with all honesty, it will get easier. After the first few weeks, the cravings will let up. You will still fantasize about eating a real donut from time to time- but it wont be the torture it is now. You will learn what you can and can't have, and you will learn how to plan ahead. You will learn to make gluten free cake that your friends will beg you for. You will learn that even though gluten free pizza is never going to be regular pizza, it can still be pretty darn good. Most importantly, you will learn that once YOU start taking it seriously, your friends and family will too. Your real friends will make special effort for you, like making sure they have gluten free snacks at their parties, asking ahead of time about what restaurants you can eat at, and even making special gluten free things for you. Because they care, just like you would care about one of them if they had a serious disease. So no more can't. Only MUST, from here on out.

[MitziG]

oh no, your misunderstanding.. my mom tries to help yeah but i cant seem to follow mt correct diet mtyself. and my mom would take care of me if any of those things came up. although im allergic to all antibiotics.. lol but um, she takes care of anything thats wrong.. and i take meds for it.. i think its called digestive advantage.. but lately i have not been wanting to take it cause eating bread and not taking the meds, i go to the restroom pretty normal.. i jst want advice on how to avoid it all. it has nothing to do with my parents cause she does help me.

 

Digestive advantage is NOT medicine, and does not in ANY way make it safe for you to eat gluten! It is simply something that may mean you get less gassy, maybe wont get diarrhea or vomit. But nothing in this WORLD can stop your immune system from devouring your own intestines, other than NOT EATING GLUTEN.

[kareng]

oh no, your misunderstanding.. my mom tries to help yeah but i cant seem to follow mt correct diet mtyself. and my mom would take care of me if any of those things came up. although im allergic to all antibiotics.. lol but um, she takes care of anything thats wrong.. and i take meds for it.. i think its called digestive advantage.. but lately i have not been wanting to take it cause eating bread and not taking the meds, i go to the restroom pretty normal.. i jst want advice on how to avoid it all. it has nothing to do with my parents cause she does help me.

There are no medicines at this time that allow a Celiac to eat gluten. There is one being developed by legitimate medical researchers, but it isn't available now.

Open Original Shared Link

I still don't understand why a parent would not treat your medical condition. Celiac is a medical condition - just like strep throat or diabetes. Perhaps the two of you need some education on Celiac disease and the gluten free diet, too? This site has a lot of factual info from doctors who treat Celiac disease .

Open Original Shared Link

[MitziG]

i know my smaller sibling doesnt have the same thing.. mine i think came from my dads side. my lil sister dont hav it cause she never has complained of her stomach hurting. i was always having stomach problems and always throwing up, so i finally went and got checked. and they diagnosed me with it. but i will suggest going to get her checked also.. i didnt think nothing of her having a chance of having it but i will get my mom to set us both a appointment, i would hate if she went through the same things.. but i need to go get checked again. cause it doesnt really bother me to eat bread. every once in a while itll make me feel sick but i just take meds to help. other than that i try and my mom helps out.

Your sister not having stomach issues doesn't mean a thing. There are over 300 symptoms of celiac...and you can have all or none of them and still have it. As for you, even if you don't feel very sick after eating it, you are still doing as much damage as someone who ends up barfing for three days straight because they used the same toaster that is used for the regular bread. "Getting checked again" is pointless. If you have been even sort of gluten free, there is a good chance your tests will come back negative. That doesn't mean you don't have it- it means that there are no active antibodies showing up. If you were diagnosed as having celiac, then you still have it now, and you will have it until the day you die. And if your doctor tells you different then he is an uneducated moron, find a new one.

[HappyMom623]

Everyone else has said it pretty well. I found out in my mid-20's... I know, not my teens, but it was still REALLY hard on me to sit around while everyone ate bread and pies while I couldn't. Believe it or not, it gets a LOT easier.

 

There are some GREAT alternatives. I've found an awesome pizza from Against The Grain and we eat it all the time. A lot of restaurants can provide you a gluten-free menu as well. Do not be ashamed or embarrassed! This is not your fault. Tell your friends that this is very much like a peanut allergy. Would someone with a severe allergy to peanuts eat them? No. That's how I have to treat it. I just told myself from the beginning "I CAN'T HAVE THIS" and found something I could eat.

 

((hugs)) You will get this!! and you will feel SO MUCH BETTER.

[gilligan]

I had a young student with celiac a couple years ago.  I was amazed at how well she knew what she could/couldn't eat.  She told me that her diet was her medicine, and she had no problems sticking with it.  She was not embarrassed or tempted to cheat in front of her friends.  This from a seven year old!  Her mom brought in gluten-free snacks to keep at school when we had parties and she couldn't eat what we had.  When we won a pizza party, her mom sent her with her own pizza to eat.  This girl had it together!

 

I have only been diagnosed for a short time, but I have discovered that over time I forget what things taste like, and I no longer care if I eat them or not.  A Krispy Kreme donut no longer appeals to me.  As long as I have something to eat, I'm fine.  I keep fruit/snacks/treats in my lunch box, so I'm never without anything when my friends decide to pop into a coffee shop or go to lunch.  

 

It concerns me that you've had this for 3 years and you haven't made more progress with the help of your family.  I'm not going to comment on the help or guidance you're getting from your parents, but maybe it's time for you and your parents to meet with a dietician. I strongly suggest you do this!  Your mom could check to see if it would be covered by insurance.  

 

Is there a gluten free section in your family's kitchen with items just for you such as toaster, strainer, fry pan, etc?  Do you like to cook?  Could you and your mom cook together, and turn it in to a fun activity?  Or, how about inviting your friends over for a gluten free "make your own gluten free pizza night" or a cookie bake?  

 

If there's a celiac support group in your area, I think you and your family should get involved.  You may feel okay now, but you're putting your future at risk.

 

P.S.  My sister has it also, but she has no symptoms whatsoever, and doesn't get sick if she accidentally ingests it.