Does Anystill Eat Gluten?

[uhmanduh]

I'm 18. I was diagnosed over the summer. At first I tried pretty hard. I have given up, I really

dont get pains or anything. I really like gluten...like I love bread and crackers and such.

I really dont think I could go without it. Does anyone still eat it also, even though they know

they have celiac disesase? Just curious...

[tarnalberry]

Not I. Not worth the increased risk of nutritional deficiencies (including anemia and osteoporosis

), increased risk of cancer (including colon and lymphoma), the increased risk of other autoimmune diseases (like thyroid disease and diabetes), and definitely not worth the - on average - 10 years it will take off my life if I eat gluten as often as once a month.

Heck, it's not even worth the mild symptoms I get of intestinal cramping, mild diahrrea, fatigue, crankiness and just feeling off for a week.

After three years gluten free, and two years dairy free (which I still find harder than gluten free), I've found that I don't miss gluten based products nearly as much as I used to. I've also filled my life with lots of alternatives that I do like, so it's really not as big a deal as it used to be.

[Ursa Major]

What caused you to be diagnosed? You must have some problems for your doctor to suspect celiac disease, even if you don't have obvious gastrointestinal problems.

If you keep eating gluten, you will likely end up with osteoporosis at a young age, and will probably die of cancer before your time. Not to mention all the many other autoimmune diseases you might develop. You may not be sick now, but wait another ten years, and you'll likely be in terrible shape.

Really, being gluten-free is not that hard. There are breads and crackers, as well as pizza, cookies, cakes etc. out there, that are gluten-free, which you can eat without causing yourself harm.

So, please, for your own sake, stop eating gluten.

[uhmanduh]

What caused you to be diagnosed? You must have some problems for your doctor to suspect celiac disease, even if you don't have obvious gastrointestinal problems.

If you keep eating gluten, you will likely end up with osteoporosis at a young age, and will probably die of cancer before your time. Not to mention all the many other autoimmune diseases you might develop. You may not be sick now, but wait another ten years, and you'll likely be in terrible shape.

Really, being gluten-free is not that hard. There are breads and crackers, as well as pizza, cookies, cakes etc. out there, that are gluten-free, which you can eat without causing yourself harm.

So, please, for your own sake, stop eating gluten.

WEll I was very anemic and my body wasn't absorbing the iron pills. So they did a SCOPE and

found out what it was. But like now I'm barely anemic and I dont know. I have to go to my

stomach doctors in November so I guess they wll remind me how bad I'm doing....its just hard

when I'm somewhere iwth friends or somewhere and there is cake and cant eat it. I mean I know

there are those foods...but not right there at that time. It just sucks. I'm not trying to hurt myself

really.

[CarlaB]

I would never cheat, but I get pretty severe symptoms. You must have had some kind of health problem to even be tested.

It's hard, but it's for your future health. If you don't feel it now, you will later ... probably once you've graduated from college and are trying to make a life for yourself. Going gluten-free now will prevent the health problems you WILL get later. You cannot go on long with being healthy when you are not absorbing what you eat.

You are working now in college for your future, so you can be everything you want to be in life. You don't want to end up like me ... 43 years old, sick for over two years, couldn't hold a job if I wanted to. Fortunately, I'm married to a very supportive husband with a good job. There are others here where the wife works because hubby is sick with celiac or who are on disability. That is your future if you keep eating the gluten. Right now you are 18 and invincible, that won't always be the case. Just like you are preparing for your future with your education, you want to prepare for your future with your health.

My 18 year old daughter has not been tested, but eats gluten-free because her seasonal allergies disappear when she does, which shows she has a problem with gluten. It is a challenge for her in college to do this, but she does. Once you are off gluten for some time, I bet you will see a difference in your health, too -- things you never even knew were wrong.

[ErraticBinxie]

You should really see it as a blessing that you were diagnosed. There are so many people that go for years not knowing what is wrong with them - some of them almost dying - and in the end, they are so thankful to know what is wrong with them that a little gluten-free diet seems like nothing.

Honestly you are being irresponsible. Part of being 18 and an adult is being able to take care of yourself which you obviously are not doing. Even if you aren't showing syptoms, you can severly damage yourself internally without even feeling it. I have read stories of people showing no symptoms and then doctors doing biopsies and their digestive organs are just mush.

Please be careful and think about what you are doing because your family cares about you and everyone on this forum is here to support you.

[tarnalberry]

WEll I was very anemic and my body wasn't absorbing the iron pills. So they did a SCOPE and

found out what it was. But like now I'm barely anemic and I dont know. I have to go to my

stomach doctors in November so I guess they wll remind me how bad I'm doing....its just hard

when I'm somewhere iwth friends or somewhere and there is cake and cant eat it. I mean I know

there are those foods...but not right there at that time. It just sucks. I'm not trying to hurt myself

really.

It does suck that the diet isn't more convenient. But you can plan while you're at home to have things you can take with you so that you won't feel as deprived. Yeah, you're going to stand out a bit, there's no way to really help that entirely. It just kinda sucks. (It does get you out of eating the cake someone made that's really nasty tasting, though. ) Mostly, it just takes a lot of planning and preparation to deal with these events, and then a lot of willpower.

The adolescent and early twenties years seem to be the years of transition where the body is more likely to hide the evidence and symptoms of damage from you - you don't notice that you're not healthy. Then, in your late twenties, *BAM* you kinda fall apart. Five bazillion things go wrong with you, and it all sucks really really really badly, and you can't even go out with your friends because you either hurt so much you want to do nothing but sleep or you're chained to a toilet hopping you don't leave brown trails around your house. (Ok, I exagerrate slightly, but read the stories of how long it took people to get diagnosed around here and the havoc it created in their lives first. It's horrible - both medically and socially.)

That's why people are now, and will continue, to encourage you to get on the wagon now, so you don't have to go through that. It'll be easier in a few years when you have a little more control over what you're cooking and eating, and you can bring food along like it's no big deal (make it better food than your friends are eating and they'll be jealous that you get special food!), but there's no denying that it can really suck. But we get past the bad parts so we can be healthy and happy and stay healthy. And eventually, we usually find that, once we adjust, it no longer sucks so badly.

[Budew]

Carla is right. You are lucky to know now so you don't end up like us. I'm sure I had it undiagnosed for 20-25 years. I never had the classic celiac disease reaction, still don't. But the other problems it created are not worth it. Because I ate gluten ( and loved it) while I had the disease, my body was ravaged by it. I am also luck my husband is able to provide for me. I would love to be working but unfortunately my quest for good heath has taken center stage.

[powderprincess]

Please be careful with yourself. I agree with everyone and I did see my diagnosis as a good thing even if it's hard. And it IS hard, but worth it.

I am under 30 and have bones like a 70 year old. Before I knew any of this, I was learning to go over jumps in the snowboard park. I want to be doing that for years, but I don't know if I'll break a hip, now.

I was diagnosed this year and I am in my 20's. I don't know if I'll be able to have kids, have bad bones, and years of being sick and fatigued.

If I knew in advance I would certainly trade no gluten in college for being healthy. Speak to your dining hall at college, they'll be able to help you out with food. Also, take your friends to places you can eat! With a little creativity you'll be able to enjoy your friends and eating (GLUTEN FREE cake, that is).

[Rusla]

First welcome to the board and there is a great deal of support and recipes on here.

Well then let me explain the joys of a extreme anemic condition or in otherwards pernicious anemia. Outside of the extreme pain in feet, toes and hands you can become paralyzed, I was within two points of that. After paralysis there is brain damage which is not reversable. So if you wish to continue with the gluten then, you will continue not to absorb and you are defeating the purpose of B-12 shotsor sublingual B-12, of course not to mention the cancers. If you wish to kill yourself by poisoning yourself with gluten that, is your right. I would consider suicide by gluten poisoning to be a very slow and painful death.

Be happy you found out now, not 30 years later like myself or others. Look at the damage to our bodies because doctors would not listen. Because you can't feel the pain now and maybe you won't doesn't mean damage is not done nor not being done that could result in your death. Adjust now, it is easier than doing it at some of the ages the rest of us are, there is life after gluten. No one said it is easy and no one said life is fair so, we all suck it up and do what we have to do. I do it because I am not ready to die a slow and painful suicide.

I forgot to mention the joys of either being obese or anorexic because of this condition if you continue to eat gluten and the fact you could lose all your teeth. I have few teeth left from this disease.

[Helena]

I'm not in my teens and I'm not going to "cheat" on the diet, but I'm wanting to show this thread to my sister who I think has celiac disease (she is in her late 20s). I find it interesting that people often don't start showing the symptoms of celiac disease until later in life . . . thanks, everyone, for sharing your story. I think I've had celiac all of my life (felt tired after eating wheat-based meals), but I didn't really start to notice a problem till my mid 20s when I just felt tired and kind of depressed after eating breakfast. I felt good *until* eating breakfast, but just felt like sleeping afterwards. I now think that *most* of my symptoms with wheat are due to celiac disease . . . but I'm probably very fortunate to have a wheat allergy as well because that is what I was diagnosed with initially (I asked to be tested after throwing up one morning-- I had a positive skin and positive RAST test). There is the chance that I *could* be *really* sick now if it weren't for the fact that I cut out wheat years ago! (I'm now 30).

I've barely had any gluten for the past two years (long story involving an elimination diet. I eliminated oats, but kept on adding them back in from time to time.) I'm still not what one might call a "high energy" person. I hope that I continue to improve on the 100% gluten free diet.

[Budew]

Helena my heart goes out to you. I recently tried oats after 5 years gluten-free. Not sure yet if oats are okay.

I really understand the situation with your sister. This IS hereditary. I have 3 nephews. One has had some skin tests that are pointing toward celiac disease. The other 2 have (like I did in my 20's) other stuff that "could be attributed to celiac disease.

Also I am thankful for the message board because this is hereditary, and after being so ill the only folks left in my life are my family. It is hard to discuss how difficult this can make your life when the people you have to talk to feel responsible for the problem. My mom is the best! I don't want her to feel bad because she didn't figure this out either. I am amazed that on ever medical form since my birth my mom has been identified as celiac and I did not get tested until I was 40. I have been sick in one way or another since I was 13.

I have not shared my struggle with my nephews. I actually feel embarrassed. I blame myself for being too stupid to figure this out before it was so bad. And for embracing misdiagnosis after misdiagnosis as if they had merit. I hate to lose my reputation of being smart and making good decisions.

Your note helped me put 2 and 2 together.

I need to share this because I can save them from the agony. I will. Thanks for the insight.

[kbtoyssni]

Looking back at my past symptoms, I should have been diagnosed around age 18, too. And boy, do I wish I had been. I'm sure it would have been much harder for me to go gluten-free at that time because my symptoms were so mild that it would have been hard to see the benefit. But, finally, at age 23, my symptoms got so bad that I had to drop out of school. I was too exhausted to make it to class, too brain fogged to think, my joints hurt too much to get up the stairs. Going gluten-free after that was EASY - there is such a clear correlation between quality of life and being gluten-free in my mind that I am NEVER EVER EVER tempted to cheat.

Honestly, I wasted a year of my life being super sick and about ten years being "sortof" sick. I'd hate for you to waste the next ten years of your life, too.

[lightningfoot speakin words]

If I feel like hurling, I will eat it.....

[Budew]

If I feel like hurling, I will eat it.....

Oh my lightening what do you mean?

[darlindeb25]

uhmanduh--My sister and I both now realize we were gluten intolerant probably all of our lives. When I think back to all the stomach problems our dad had, I think he was too. I was 45 and she 42 when we found out about celiacs. By that time, I had been ill for nearly 25 yrs by this time. I have been gluten free now for 5 yrs this last July. For 9 yrs I have had symptoms of periphreal neuropathy and it's really not a fun disease either. Don't let this happen to you. I didn't know, the doctors didn't know and I continued to get worse, not knowing why. If you continue eating gluten and you know you are celiac, then you will only have yourself to blame if this happens to you. Even if you do not have noticable symptoms while eating gluten, your body is still being malnourished and things will go wrong. 60% higher chance of stomach cancers should be all it takes to make up your mind. Please go gluten free. Deb

[Rusla]

uhmanduh, I would definitely go gluten-free and the one who forced me to get on the doctors cases and literally force them to do the skin biopsy for my dh was my sister. Her questions to me were "how soon do you wish to die? Would you like to have cancer of the stomach or colon? and Do you want to walk around with your bowel movements in a bag for the rest of your life?" As my sister had Celiac friends on who is walking around with a bag due to colon cancer. She scared me to death and then I researched Celiac disease extensively before my diagnosis. I can pretty much pinpoint the time Celiac raised it's ugly head was when I was 19 years old...a very long time ago. You have a diagnosis now and it isn't that awful to be gluten-free, it does take adjustments. However, if I can do it at my age which is much older than you then you can do it, unless of course you wish to kill yourself in this manner. If you stick with this forum you will get plenty of information, support and good recipes. Consider yourself special and embrace what you are and learn to live with it.

[Helena]

Helena my heart goes out to you. I recently tried oats after 5 years gluten-free. Not sure yet if oats are okay.

I really understand the situation with your sister. This IS hereditary. I have 3 nephews. One has had some skin tests that are pointing toward celiac disease. The other 2 have (like I did in my 20's) other stuff that "could be attributed to celiac disease.

Also I am thankful for the message board because this is hereditary, and after being so ill the only folks left in my life are my family. It is hard to discuss how difficult this can make your life when the people you have to talk to feel responsible for the problem. My mom is the best! I don't want her to feel bad because she didn't figure this out either. I am amazed that on ever medical form since my birth my mom has been identified as celiac and I did not get tested until I was 40. I have been sick in one way or another since I was 13.

I have not shared my struggle with my nephews. I actually feel embarrassed. I blame myself for being too stupid to figure this out before it was so bad. And for embracing misdiagnosis after misdiagnosis as if they had merit. I hate to lose my reputation of being smart and making good decisions.

Your note helped me put 2 and 2 together.

I need to share this because I can save them from the agony. I will. Thanks for the insight.

Good luck with getting things across to your family. I hope your nephews listen and get tested.

You shouldn't blame yourself for not figuring this out---if your doctors didn't figure it out, how were you to be expected to?

My family has actually been pretty good----at first I got the impression that my mom thought that throwing out wooden cutting boards, etc. was going overboard, but she is being really supportive now. Actually, my sister is receptive to the celiac idea . . . she agrees that she *could* have celiac but sometimes doesn't seem to think so. She has not been eating oats, wheat, barley, rye for years now (she gets really sick) but still gets residual gluten in Rice Dream. I'm trying to convince her to *stop drinking Rice Dream* . . . (she can't have soy or milk or almond milk so there aren't many choices left).

[Nancym]

Even though you don't get severe symptoms it'd really be bad to continue to eat gluten. By the time you get out of school, settle down into a job, marriage perhaps, kids (who knows), you might find your health has really deteriorated. Hopefully you've got a long, long time of good things to do on the earth. You don't want to look back on your teenage years and go, "Why was I such an idiot then?" And regret that you gave into peer pressure or temptation just to spend the next 50 years not feeling so good.

[Nantzie]

You may be having symptoms that you aren't aware are gluten-related. A lot of the stuff that went away after I went gluten-free are things that I thought were just part of my personality or just "me".

I didn't do well in school, despite high(ish) IQ scores. I couldn't remember anything. I had a hard time concentrating. Was exhausted all the time. Teachers and parents said that I wasn't "applying myself" and sometimes even said I was just lazy and apparently didn't care. I thought I was just stupid and whatever IQ test they did on me must have been mixed up with someone else's score.

I started having GI symptoms when I was 17. (Didn't know what it was until a year ago.) I had my kids when I was 31 and 33. By the time I had both of my kids, I was in so much pain that I couldn't even get down on the floor and play with them. It hurt so bad just to bend and stretch and reach to change their diapers or get them dressed that it would nearly put me in tears. I couldn't even give them their baths. Not to mention the GI symptoms that were so bad already that there were many times when I had to jump up (>>>>OUCH!!!!<<<<<) push my tiny little kids out of the way just to get to the bathroom 10 feet away, in time.

Not even being able to take basic care of my own kids was devastating.

The other thing that was weird is that I used to have really bad headaches every day. To the point where I didn't even realize I was having headaches at all. It was only after going gluten-free when the headaches were gone that I realized I was even having them. I honestly just thought that's what it felt like to have a head. LOL! It took a few days before I got rid of the spacey feeling in my head because of the lack of pain. Now when I get glutened, I get hit with a headache so bad I just want to crawl into bed and pull the covers over my head.

When I went gluten-free, all of those problems went away. LIke somebody flipped a switch. Poof!

The other things that went away that you may not even think might be related were:

Insomnia.

Exhaustion

Low energy

Anxiety

Social Anxiety

Depression

Mood swings

As far a psych stuff goes, the best thing was that when my mind wasn't occupied and I was just alone with my thoughts, like trying to fall asleep at night, I was just MEAN to myself. I would just think about all the things that I didn't do, or didn't do right, or should have done better, or the wrong things I said or didn't say. Nothing over-the-top or obsessive, just negative and sad. Now, that doesn't happen at all. It's something that I thought was just part of my personality. Turns out it was the gluten.

And I don't even technically have celiac. My blood tests were all negative. My biopsy was negative. The only thing that was positive was my response to the gluten-free diet.

I hope you're not put off by us wanting you to be gluten-free. We're all just cringing in painful anticipation for you.

Think of it this way. All of us have been walking through broken glass in bare feet for years until the point we finally figure out the problem. We're basically sitting on rocks by the side of the road, picking the years of glass out of our feet. We see you come running down the path toward the broken glass in your bare feet, and we're practically throwing ourselves on the path just to try and spare you the pain we had to go through.

When you've been in this much pain and misery for so many years, we just hate to see anyone have to experience even a moment of it.

We've had this conversation with young adults, with 40 somethings, with 60 and 70 year olds, with men and women, with stay-at-home moms and executives, and even with a real-live MD doctor (anyone seen Radman lately?). So our flinging ourselves in your path isn't a reaction to your age, it's just not wanting to see someone, anyone with a gluten issue suffer the way we have.

I hope you decide to stay gluten-free, and stick around and learn all of our tips and tricks to make living gluten-free as easy as possible.

For me, what made doing this easier is just figuring out what it was that I was missing. If it's sweets, there are great premade products and great recipes. If it's bread, there are tons of options.

Just stick around with us and we can help you navigate this. We've all had times where we were frustrated and just sick to death of having to analyze every molecule that goes into our mouths.

Hope you stick around.

Nancy

[Rusla]

I haven't seen Radman for quite some time.

But it is true uhmanduh, we are doing this because if one person does not have to suffer the way most of us have then it is worth saying this. I wish I would have known about this when I was your age. Better still I wish the doctors would have but many are still not well versed in this disease.

It is sad how many have to suffer because doctors can't think outside of the cracker box. I never had DH until 2 years ago. But now my DH reaction got worse instantly. Every time I get accidentally glutened it is worse than the time before. Please don't wait for big symptoms to rear their ugly faces by and consider yourself so lucky you found out now.

[ianm]

I wasted the first 36 years of my life because of gluten. Don't make that same mistake. I carelessly glutened myself with shampoo 3 weeks ago and I am just now starting to get back to normal. Gluten just isn't worth the trouble it causes.

[bmzob]

Hi and welcome.

I am 21 and i was just diagnosed with celiacs like 3months ago and went gluten-free about two months ago. I did not have any symptoms before being diagnosed. I did have an autoimmune disease and ulceritive colitis but both were under control thru medicene and i had no problems with them. When i found out i had celiacs i read everything i could about it. the things that can come from long-term untreated celiacs are scary to me. the thing that scared me the most was the possibility of not being able to have kids someday.

it's really not that bad. i found a bread that i liked...finally. i found a cookie recipe that i love! i even found a pumpkin bread, and a pie crust that i enjoy. it is hard, but i feel it's worth it. since going gluten-free i found out i did have symptoms before being diagnosed. i used to get headaches alot and really bad bloating, i never thought anything of it til one day after going gluten-free i accidentally ate something and all of a sudden those things were back.

it is hard, but its also doable (i have no idea if thats really a word!). reading up on celiacs i learned that my autoimmune disorder was probably caused by celiacs. they put me on immunosuppressants for my immune disorder...well this got rid of my autoimmune disorder, but it also masked any symptoms i might have had from celiacs (it's an autoimmune disorder too). once i went off the medicene i had a really bad reflux attack (which i never had before in my life) and they did some tests to make sure everything was ok....thats when they found out i had celiacs.

so as everyone else has said, it is very important for your health to go on this diet b/c your still doing damage to your insides and other stuff could come from it if untreated. if you have any question about the diet or gluten-free substitues for some of your favorite treats just ask...we're all here to help!

[uhmanduh]

So does it really not matter if you just cut back a lot? I use to eat tons of gluten I'm trying to stop, but it still is REALLY hard. BUt does cutting down help at all or just as pointless as eatin a lot?

[CarlaB]

So does it really not matter if you just cut back a lot? I use to eat tons of gluten I'm trying to stop, but it still is REALLY hard. BUt does cutting down help at all or just as pointless as eatin a lot?

I would guess that cutting back is better somehow, but your immune system still reacts and you are still at a higher risk of cancer and other autoimmune disorders. So, you can cut back till the symptoms go away some, but in the end you are going to be even sicker and eventually need to be 100% gluten-free. I would definately go 100% gluten-free! The question you are asking is like asking if cutting back from 2 packs of cigarettes per day to 1 pack is better than not changing at all ...

I am so sick now that I'm not functional ... this is where you will end up ... I will heal, but so far it's taken 10 months and the doctor says I have another year to go. Fortunately I don't work outside the home so I can lay around all day ... that's all I have the energy for. Do you really want to be where I am because cutting out gluten is hard?