Fell Off The Wagon And Don't Want Back On...

[Cath724]

I've been AWOL from this site for awhile, but I'm reaching out for some support and hope...

I was diagnosed with Celiac last summer, and immediately went gluten-free and was pretty upbeat and optimistic about the whole ordeal. I remember tuning into this site regularly, reading posts from fellow Celiacs who were having trouble committing to gluten-free and I thought to myself, you don't think about it, you just DO it, for your HEALTH! NOW, months later, I am in their shoes...

I was diagnosed via biopsy inadvertently, you could say, and I am primarily asymptommatic. In other words, I could then, and still can, consume gluten and not have any obvious side effects from it-- no IB, no lethargy, no mood changes, not even a little headache. Personallly, I believe this is what makes it so hard for me, to not SEE or FEEL any need for going gluten-free. I am aware that I need to be gluten-free for my health, but for some reason I just can't seem to care anymore! I mean, possibly one in 100 people have it and never even know it! I am not normally so careless, but admit I am being so now with my health.

My main challenge #1 is, like many, when I leave the house! I was already on a strict diet (vegetarian + supertaster who can't tolerate strong-tasting vegetables and foods), so when I go out, I feel as if there is virtually nowhere I can eat where I'll be certain it is gluten-free (I live in a smaller town without the ethnic variety like Thai, Indian, etc.--just uncooperative chains here). I can do without the pastas, breads, etc., but it's the dressings, sauces, etc. that kill my motivation. I'm the type of person who likes to blend in with the crowd, and not get any special attention, so trying to explain my strict dietary needs to a restaurant manager is downright painful for me. I just want to crawl under the table or run away!

So if there's anyone who can relate, and would like to share what finally woke them up, please share your story with me...

[tarnalberry]

The trouble with not following this sort of dietary restriction is that - unlike anaphylactic allergies - they don't kill you in 30 minutes. They kill you in 10, 20, or 30 years. But they will kill you. It's sometimes hard to say no to our desire for immediate gratification, however, when our delayed gratification is decades away. (Assuming, as you say, we're dealing with the asymptomatic, or relatively asymptomatic here.)

Yeah, yeah... everything's gonna kill ya. But this is something you are deliberately doing to kill yourself a bit faster, and - eventually - a bit more uncomfortably than it would other wise be.

That's why I do it. The long term payoff. I have too many things I want to do, see, and experience to fit them in to a shortened lifetime. So I need those extra years that being gluten free will get me. And I need to know that I'm operating at the best I can, physiologically.

I could choose the immediate gratification, or I could forgo that for a lot more in return with some patience. And the cost of doing so (what I'm giving up) becomes less and less over the years of that practice.

That's how it sits in my mind.

[MELINE]

You are opening the door to so many diseases....and these diseases are really difficult to live with. They are not as easy as celiac is. (yes...celiac is for laughing compared to cancer).

I was just googling "lupus prognosis" since my best friend has lupus (which is something you are open to if you are not paying attention to your gluten-free diet) and believe me I felt happy that I have celiac and I thank god for it.

Omg..you can't imagine how hard it is for these people to read "lupus can be a fatal disease"...they are suffering so much and the worse is they can't do ANYTHING to prevent it from happening. The disease rules...not the patient....pain, disabilities, loss of memory, fatigue etc etc....

And here you are, saying that you have a disease that is extremely easy, I mean EXTREMELY easy, and you are playing with fire cause you are neglecting your treatment and you are open to really hard ones....No I will not accept that! You stop right now, cause pizza and pasta and whatever you are eating are things that are supposed not to be essential for our living. There are other things that are important.

Get yourself together and try to remember that you can find delicious food again. But you will not be able to find your health again if you destroy it. There are diseases that don't have a way back....once you have them..you stay with them for a life time. And they have symptoms that you are not gonna like.

and as it is already posted, yes we are all gonna die. Then why don' t we all go shoot ourselves and finish the whole thing?

I don't know you, but I totally understand it is hard for you to stay gluten-free when you don't have symptoms. Just do me a favour and go check lupus symptoms. I got so scared that I don't want to smell bread again in my life.

God gave me a gift. He choosed me to have the easiest disease of all the autoimmunes. Why mess it up?

[Chrissyb]

I have been dx" with multiple sclerosis since 6/99, I can look back now and see that I had gastro symptoms of celiac back then also, but have only been dx'd for about a year. Now I don't know 100% if the celiac caused my ms but they are both autoimmune. I can tell you that I can deal so much better with my celiac symptoms then my ms symptoms. I have some control of those I can control what I eat, but I have no control over how my ms acts up and from day to day it can be different. It has taken away my ability to drive by taking away a good deal of my vision, which I have not done for the last 8 years. So compared to not being able to have a dount or a pizza or right now because of electric shocks I get in my legs I can not stand more then 10 minutes. I will take having to control my diet anytime because I can not control my ms and if controlling my diet keeps me for getting anything else then I will do what it takes.

[Tallforagirl]

...if there's anyone who can relate, and would like to share what finally woke them up, please share your story with me...

Hi Cath,

I'm in the same boat as you, I was diagnosed because celiac disease is in my family (sister has it). I had no obvious symptoms, so like you, I find it difficult to get my head around the idea that something is happening in my gut, when I can't feel it or see it.

The thing that's so far kept me on the straight and narrow is the thought of getting osteoperosis and/or another automimmune disease. The cancer thing really doesn't scare me that much, as I think the risk is very slight, even though it is multiplied many times if you're an untreated celiac. My sister (the one with celiac disease) was diagnosed with rheumatoid athritis, at the age of 25, and knowing how she suffers with it, I will do whatever I can to try to prevent that happening to me.

I'm also particularly scared of the thought of ending up with Type 1 Diabetes, as I can't imagine trying to handle the dietary restrictions and treatments that go with that, alongside the gluten-free diet. Not to mention the health risks associated with that condition (gangrene anyone?)

I too find it difficult to speak up in restaurants. I am still trying to find a way of wording my requests so that the waiter will understand what I need. For the first time in my life I find myself sending meals back to the kitchen. It's certainly good for assertiveness skills!

I find it easier to dine in restaurants that have an established gluten-free menu. There is a restaurant recommendations list provided by my state Coeliac Society from which I've also been sampling a few places. Last night my BF and I went out for Italian, and I had gluten-free garlic bread, gluten-free lasagne, and gluten-free tiramisu!

Try to get back on the diet. It is hard, but what can you do, when you hear some of the horror stories from those who went undiagnosed for many years, why would you want to risk it? You have a chance to "choose life".

Chin up!

[UnhappyCoeliac]

Hi tall im in melbourne and Aussie too.

In regards to OP mate im in EXACTLY the same position asymptomatic cant see effects of what im doing wrong... living a little bit in denial.

Only we can change it my family friends or jerk and whinge at me to go gluten free but I really just cannot resist hungry jacks etc when im starving or drunk. And today I just had a burger LOL cos the store is to far away in the heart. Im 22 and to get this is a real pain I know im being a bit of a sook.... but I really dont know or care about 5 years away let alone 30!

Its hard to sacrifice for something that is... almost 1 and a half times my lifetime away.

That being said I try to motivate myself by. Infertility..... not good... I will eventually want a kid I have had unprotected sex a few times... and no one is pregggz.... so thats a bit discerning. Also more really negative things... teeth falling out.... anal leakage....

These sort of things are ABOSLUTE horrible and I imagine would take away ones pride so I try to keep them in mind, because.... they will possibly happen one day.

And frankly at that point the quality of life goes down so much that I probably would no longer wish to live! Uncontrollable bowl movements and bed ridden = loss of friends, family gluten-free, and finance = end of life.

It is serious stuff when you start looking at what some of these disease can actually mean to you. The whole effect of them. Im done ranting now, I know how you feel. Il also mention 21 days behavior comes habit, 21 days gluten free... and working on your looks or your body in the gym so your not always thinking about food.....

And quite frankly chrissys post scares the hell out of me... these people can only warn you sigh Im even motivating myself now I must go gluten free... I have a different mindset to most where if I have MS id probably want to die.... I do have depression though it is hard enough functioning in the world for me as normal.

There is a lady with MS that gets gluten free fish and chips at the shop near me and here uncontrollable arm movements... really make me feel sick... it hammers home the point going or trying to go gluten free is really serious business with serious consequences for failure

[gadgetgirl]

If you need further incentive to get back on the wagon, spend some time volunteering in an assisted living community for seniors 70+. I work with a population that has an average age of 81.

We have the lady whose rectal bleeding was IGNORED by her doctor for 10+ years. She now has rectal cancer and is slowing having the life taken out of her. BTW, her granddaughter has a wheat allergy. Can you say GENETICS?? I'm furious that she was ignored by the medical community.

I see numerous cases of rheumatoid arthritis - joint replacement does NOT restore you to perfectly normal.

I work with a woman in her 70's that has ataxia - she finally was diagnosed a year ago. But the damage is done.

Lots of osteoporosis. A woman with such severe kyphosis (abnormal curvature of the spine causes by collapse of vertebrae) that it is putting pressure on her internal organs.

These are wonderful people whose vitality has been stolen from them by gluten.

They are DAILY incentive for me to be strict with my diet. I do not want to spend my "golden" years crippled by something that could have been prevented by watching what I put in my mouth.

[mallard]

I've been AWOL from this site for awhile, but I'm reaching out for some support and hope...

I was diagnosed via biopsy inadvertently, you could say, and I am primarily asymptommatic. In other words, I could then, and still can, consume gluten and not have any obvious side effects from it-- no IB, no lethargy, no mood changes, not even a little headache. Personallly, I believe this is what makes it so hard for me, to not SEE or FEEL any need for going gluten-free. I am aware that I need to be gluten-free for my health, but for some reason I just can't seem to care anymore! I mean, possibly one in 100 people have it and never even know it! I am not normally so careless, but admit I am being so now with my health.

I feel your pain, I'm in the same boat as you are. I was diagnosed over 10 years ago and have been off and on the diet for a long time. I am trying it once again, hoping that I can stick with it this time. Hearing all of the horrible things this disease is doing to others is what is keeping me safe these days.

I am now thinking of it as rat poison, just because the food is there doesn't mean it is okay for me to eat it.

[ang1e0251]

I can do without the pastas, breads, etc., but it's the dressings, sauces, etc. that kill my motivation. I'm the type of person who likes to blend in with the crowd, and not get any special attention, so trying to explain my strict dietary needs to a restaurant manager is downright painful for me. I just want to crawl under the table or run away!

I can't help you with the sympathy as I'm not asymptomatic but I might be able to help you with your nemisis, the dressings and sauces. Would you mind posting what items you like and let's see if we can help with your problem?

[Tallforagirl]

...I really just cannot resist hungry jacks etc when im starving or drunk. And today I just had a burger LOL cos the store is to far away...

Hey, nice to see another Aussie on the board. One good thing, no-one here will know what a "sook" you are, because they won't know what it means!

If you want a burger, have one, just don't have the bun (check the burger is 100% beef though). Check out this listing I downloaded from McDonalds, it lists the ingredients in each individual item, so you can see exactly what you can have. For example, you can have a double beef and bacon burger, with all the trimmings, just not the bun. The fries are usually okay too (check the frier is only used for fries though).

Open Original Shared Link

You might also find it useful to attend one of dietician Sue Shepherd's sessions about ingredient-reading for Ceilacs, you can get details here: Open Original Shared Link

I went to one of her group sessions when I started with the gluten-free diet and it was really helpful. She also covers health aspects of celiac disease (what happens with the autoimmune process), so you get a better understanding of why the gluten-free diet is so important. And you get free gluten-free product samples!

You sound like you've got a sensible head on your shoulders, so I think you'll do the right thing and get back on the gluten-free diet. It's easier once you get used to it, trust me.

Good luck!

[Cath724]

I thank you all very much, for taking your time to respond to my post. My family still thinks I AM being loyal to the gluten-free diet, and I haven't even told most of friends about the Celiac diagnosis, so you all are my only support system at the moment! I truly thank you for "waking" me up again to the importance of maintaing a strick gluten-free diet.

[whistle]

Only we can change it my family friends or jerk and whinge at me to go gluten free but I really just cannot resist hungry jacks etc when im starving or drunk. And today I just had a burger LOL cos the store is to far away in the heart. Im 22 and to get this is a real pain I know im being a bit of a sook.... but I really dont know or care about 5 years away let alone 30!

Its hard to sacrifice for something that is... almost 1 and a half times my lifetime away.

... I do have depression though it is hard enough functioning in the world for me as normal.

Unhappy and Cath, I realize you are already recognizing the seriousness of celiac, but I still felt compelled to throw my two cents in. I'm 40 and have been very ill for eight years. I just started learning about celiac a month ago, and discovered that all my problems could be explained by it. One of the things I read was an article from 2006 which said they recently discovered that people with celiac have a higher risk of thyroid papillary carcinoma (a type of thyroid cancer). I had my entire thyroid gland removed when I was 17 because of papillary carcinoma. I also had affected lymph nodes removed, and two radiation treatments. I was not old, and I'm still not. My peers are as spry as anything. I only feel old because of my many symptoms, most of which I didn't have in my 20's. I had a great time in my 20's but my fond memories are not of burgers. (There is a certain chicken burrito, but never mind that lol)

Depression is a symptom of celiac disease, so if you have depression you're not asymptomatic. Depression can certainly make everything more difficult, and make you care less about yourself. Maybe the depression will at least improve if you stick to a 100% gluten-free diet.

Somebody else on this site made the suggestion that when you go to restaurants don't try to explain that you have celiac. Just say you're allergic to gluten. Nobody can question an allergy. What if it was something that would close up your throat? They don't know. You might still get glutened, of course, but there's no need to be embarrassed as though you're being difficult or picky. You're not. You're taking care of yourself and your future. I really, really want mine.

I'm sorry. I really don't like scaring people.

Best wishes!

[Hummingbird4]

I haven't even told most of friends about the Celiac diagnosis

Maybe telling them would help you stay on the wagon. I told everybody about my Celiac when I was diagnosed. It would be very difficult for me to fall off the wagon without a bunch of people noticing and pointing it out!

Keep yourself accountable anyway you can.

[Lori T.]

I've been AWOL from this site for awhile, but I'm reaching out for some support and hope...

I was diagnosed with Celiac last summer, and immediately went gluten-free and was pretty upbeat and optimistic about the whole ordeal. I remember tuning into this site regularly, reading posts from fellow Celiacs who were having trouble committing to gluten-free and I thought to myself, you don't think about it, you just DO it, for your HEALTH! NOW, months later, I am in their shoes...

I was diagnosed via biopsy inadvertently, you could say, and I am primarily asymptommatic. In other words, I could then, and still can, consume gluten and not have any obvious side effects from it-- no IB, no lethargy, no mood changes, not even a little headache. Personallly, I believe this is what makes it so hard for me, to not SEE or FEEL any need for going gluten-free. I am aware that I need to be gluten-free for my health, but for some reason I just can't seem to care anymore! I mean, possibly one in 100 people have it and never even know it! I am not normally so careless, but admit I am being so now with my health.

My main challenge #1 is, like many, when I leave the house! I was already on a strict diet (vegetarian + supertaster who can't tolerate strong-tasting vegetables and foods), so when I go out, I feel as if there is virtually nowhere I can eat where I'll be certain it is gluten-free (I live in a smaller town without the ethnic variety like Thai, Indian, etc.--just uncooperative chains here). I can do without the pastas, breads, etc., but it's the dressings, sauces, etc. that kill my motivation. I'm the type of person who likes to blend in with the crowd, and not get any special attention, so trying to explain my strict dietary needs to a restaurant manager is downright painful for me. I just want to crawl under the table or run away!

So if there's anyone who can relate, and would like to share what finally woke them up, please share your story with me...

I can hear your frustration and I feel for you. Had a host of little issues for years when I was younger and thought it was just life. Keep up the party life!! Hung out with my friends and had beer and pizza night regularly. The next day I used to think " I know that 3 beers did not do this to me" because I could not go to the bathroom. Just seemed like, oh well, too much pizza maybe. Who knows. Was even younger than you, at 17 had my own apartment!! Now I know though. Wish I could take back all the years so that all the damage that has been done could be reversed. It is hard when you are young and it seems like everyone is preaching to you. The only person I felt I could talk to about such things was my grandmother. She would give me one of her old time remedies. Sometimes it would work sometimes not. My mother said "Suffer it out". Had very little support from friends and family when I think about it. I had no knowledge of the Celiac until 10/06 making me 39 years old. I had to suffer the most hideous of child birth experiences, aches, pains and a host of other crap that seemed to come out of the blue. Like I said, I was a partier. I wanted to continue to live my life, but got stopped real short. The final clincher was to have to endure heart surgery. Celiac gave me that gift too. I call it a gift because it was after the surgery and not being able to recover from it that I was diagnosed Celiac. I have had many struggles since. I won't gross you out with all of it. But, I will tell you this: before you know it, life will pass you by, you WILL be older, hopefully wiser but you may also be suffering the consequences of not following the diet. You can still be young at heart forever. No one should look down on you if they are your true friend just because you have Celiac. If you go out and order something different, like a burger minus the bun, just say to them " I am eating a few less carbs. Why don't you try it??" Do not set yourself up for failure though. Go on the web and check all of the stores, restaurants and burger/pizza chains in your area to look for gluten-free options before you go. Call them ahead to see if they cook their fries with the nuggets. Most places are glad to try to help. And I have to say that some of the cooks in these places can be pretty cute. Asking questions to save your guts might get you a date with a hottie!!!! And if they are not willing to adjust an item for you, screw them. Go to the next place that is and make sure you avoid them for good. I think that if you can get yourself at least that far for a bit, then you can look into finding the hidden sources of glutens as you progress so that long term damage is not done. You have to take it one step at a time to be able to live with the diet and not feel deprived. I hate to say this in this way, but it is almost sad for me to hear that you do not have symptoms. This would at least encourage you to take our advice. I pray that you never have to suffer as many of us have. Life is too short. Don't make it any shorter than you have to. A good friend, if they knew what was up with you and could read some of our notes and look at some of the sites related to Celiac, would never let you suffer. In fact, they would try to help you by finding stuff when you all go out that you CAN eat. And if they didn't then the old story that they were never a friend in the first place comes to mind. I wish the best for you.

[UnhappyCoeliac]

I have been dx" with multiple sclerosis since 6/99, I can look back now and see that I had gastro symptoms of celiac back then also, but have only been dx'd for about a year. Now I don't know 100% if the celiac caused my ms but they are both autoimmune. I can tell you that I can deal so much better with my celiac symptoms then my ms symptoms. I have some control of those I can control what I eat, but I have no control over how my ms acts up and from day to day it can be different. It has taken away my ability to drive by taking away a good deal of my vision, which I have not done for the last 8 years. So compared to not being able to have a dount or a pizza or right now because of electric shocks I get in my legs I can not stand more then 10 minutes. I will take having to control my diet anytime because I can not control my ms and if controlling my diet keeps me for getting anything else then I will do what it takes.

Thanks for this post Im very sorry to hear about your situation. Im printing this out now... I need reminders about the seriousness of this .

MS frankly scares the hell out of me and If im diagnosed I wont be living, and since I aint achieved much in 22yrs not even reproduced il pretty much be a ghost of the world.

[Welda Johnson]

Hi,

I hope you're still checking in with this site. I totally agree with Lori's comments about taking care of yourself while you're still young. I'm 64 and have had symptoms since age 8, but my sister is a year older, and after being tested for Celiac and the results being positive, she still won't change her diet. She has had thyroid cancer and was told there was a 99% chance that she had a cancerous polyp in her colon. Thank God the polyp was benign, but she still eats foods which should be avoided when one has Celiac.

I suffered for so many years with asthma, bronchial infections, pneumonia, depression, anxiety, colitis, an ulcer, digestive upsets, constipation, and on and on. When I finally eliminated all grains, all milk and dairy, egg whites, yeast, casein, whey, maltodexrin, modified food starch and msg I got healthy and well. Thank Heavens!

I hope that you will stick to the diet, no matter what, because your body MAY eventually speak to you via symptoms, and that is a hard way to go also. I'm grateful that I get early warning signs within minutes of eating the foods to which I'm intolerant. I want you to be healthy and happy too. Please know that we all want the best for you. We have struggled and suffered with endless symptoms trying to warn us away from foods which for all of us are like poison. They are no less so for you too. Keep on the path! Welda

[whistle]

Unhappy, I'm so sorry for your suffering.

When I had cancer in my teens, it was very frightening, and for a long time I just thought I'd probably die soon. But I didn't. I hope you don't give up, and get all the help you can for your health.

My heart is with you.

[Lisa Joy]

I've been AWOL from this site for awhile, but I'm reaching out for some support and hope...

I was diagnosed with Celiac last summer, and immediately went gluten-free and was pretty upbeat and optimistic about the whole ordeal. I remember tuning into this site regularly, reading posts from fellow Celiacs who were having trouble committing to gluten-free and I thought to myself, you don't think about it, you just DO it, for your HEALTH! NOW, months later, I am in their shoes...

I was diagnosed via biopsy inadvertently, you could say, and I am primarily asymptommatic. In other words, I could then, and still can, consume gluten and not have any obvious side effects from it-- no IB, no lethargy, no mood changes, not even a little headache. Personallly, I believe this is what makes it so hard for me, to not SEE or FEEL any need for going gluten-free. I am aware that I need to be gluten-free for my health, but for some reason I just can't seem to care anymore! I mean, possibly one in 100 people have it and never even know it! I am not normally so careless, but admit I am being so now with my health.

My main challenge #1 is, like many, when I leave the house! I was already on a strict diet (vegetarian + supertaster who can't tolerate strong-tasting vegetables and foods), so when I go out, I feel as if there is virtually nowhere I can eat where I'll be certain it is gluten-free (I live in a smaller town without the ethnic variety like Thai, Indian, etc.--just uncooperative chains here). I can do without the pastas, breads, etc., but it's the dressings, sauces, etc. that kill my motivation. I'm the type of person who likes to blend in with the crowd, and not get any special attention, so trying to explain my strict dietary needs to a restaurant manager is downright painful for me. I just want to crawl under the table or run away!

So if there's anyone who can relate, and would like to share what finally woke them up, please share your story with me...

[Lisa Joy]

I've been AWOL from this site for awhile, but I'm reaching out for some support and hope...

I was diagnosed with Celiac last summer, and immediately went gluten-free and was pretty upbeat and optimistic about the whole ordeal. I remember tuning into this site regularly, reading posts from fellow Celiacs who were having trouble committing to gluten-free and I thought to myself, you don't think about it, you just DO it, for your HEALTH! NOW, months later, I am in their shoes...

I was diagnosed via biopsy inadvertently, you could say, and I am primarily asymptommatic. In other words, I could then, and still can, consume gluten and not have any obvious side effects from it-- no IB, no lethargy, no mood changes, not even a little headache. Personallly, I believe this is what makes it so hard for me, to not SEE or FEEL any need for going gluten-free. I am aware that I need to be gluten-free for my health, but for some reason I just can't seem to care anymore! I mean, possibly one in 100 people have it and never even know it! I am not normally so careless, but admit I am being so now with my health.

My main challenge #1 is, like many, when I leave the house! I was already on a strict diet (vegetarian + supertaster who can't tolerate strong-tasting vegetables and foods), so when I go out, I feel as if there is virtually nowhere I can eat where I'll be certain it is gluten-free (I live in a smaller town without the ethnic variety like Thai, Indian, etc.--just uncooperative chains here). I can do without the pastas, breads, etc., but it's the dressings, sauces, etc. that kill my motivation. I'm the type of person who likes to blend in with the crowd, and not get any special attention, so trying to explain my strict dietary needs to a restaurant manager is downright painful for me. I just want to crawl under the table or run away!

So if there's anyone who can relate, and would like to share what finally woke them up, please share your story with me...

Can I relate???

I've been away from this forum for a long time. I had the testing done and then the biopsy in 8/07. Been intentionally gluten free since. All the time. Never cheating although I know I've gotten gluten accidently. I've been ok with it, but I have to admit it has been HARD. I really thought I'd get used to no gluten and all that it means. I've learned to do some baking with alternate flours and make pizza and try other alternatives. I've just turned 60, so I've had all the things I love (bread, rolls, croissants, pasta, sandwiches) for nearly all my life, and this has NOT gotten easier. NOT ONE BIT. I do feel better, but still tend to have some bloating and bowel issues. And, I have been almost nutty about not getting gluten.

Just recently I've hit a wall and am so depressed I am just ready to quit. I really don't care that I may get some dread disease or whatever. I'm sick of needing to think about every bite I put in my mouth. I'm sick of preparing for another check up to make sure I'm ok internally.

This is something no one understands if they are not restricted. My husband humors me: "Ok then let's go bet a hamburger." I'd LOVE to!!!!!!

So, I logged on hoping to find inspiration and to see if others have this problem. It's been almost 2 years now, so I'd think I'd be beyond this.

How do others cope when you get to this place?? I love my life otherwise. I have a job that is draining, but I love what I do. There was something that triggered all this, and I am just not sure how to deal with it except to tought it out.

I'd appreciate any input.

[harp1]

Such beautiful posts, I'm really touched. I fortunately have an almost immediate response to eating wheat, or soy. My advice is to stay on this forum and read every day what people are saying - it's so supportive. BTW could we get back to the salad dressing and sauces alternatives? That would help me

[hermitgirl]

I can relate to a lot of what you have said, but am stubbornly sticking to my diet anyway. I feel better as I had several symptoms for many years. It isn't worth the health risks, and looking at my grandparents and other family members, many have severe health problems, as well as other autoimmune disorders. I really don't want to end up like my grandparents when I hit their age. Osteoporosis, mental problems, major health issues, and unable to live unassisted. Many of their issues can be caused by untreated celiac. They have never been diagnosed, and more than likely will never be.

My family, friends and coworkers are all aware, and to be honest, some are supportive, some aren't. Actually had a co-worker purposly gluten me a couple of months ago. He though it was funny..... I just try to ignore or avoid him now.

I don't like the extra attention that going out for meals brings me. I am easily embarassed, and having to sit with a group of people and explain dietary restrictions to a waiter also makes me want to crawl under the table. Either I eat before I go, check the restaurants website, or call the manager of where we are going beforehand. That helps a lot.

I always carry a little bit of food with me. Just in case. Bring food with me to work every day, and it is surprising how quickly I get a "are you going to eat all of that?" or"ooh, can I have one?" I tend to bring a lot of fruits and veggies, which also means I end to eat better than a lot of the people around me.

One last comment/remark: consisitency. If you remain consisten, it will get easier.

[Bluedaize]

The only thing I can say about this situation is, if you don't follow the advice and instruction set out for you, regardless of how hard it may be, you will be sorry later. This illness is in my entire family, causing symptoms from IB to 3rd stage T-cell Lymphoma, to Lupus, severe migraines which last a week at a time, and I could keep going.

What we don't necessarily see happening to us right now is the way it ages us, and uses us up. Untreated, this will wear you out to the point that you"ll feel 60 when you're only 30. Your face will show it, your muscle tone will show it, and the tone of your skin will show it. Those may seem like small things, but they can all be curbed if you stick with it. If you don't- your saggy eyes and uneven facial tone as well as problem teeth, will remind you that you should have.......sorry but it's true.

Michelle

[ang1e0251]

I think it would be incredibly hard to stick to the GFD if you are asymptomatic. I have definate, strong, some worrisome symptoms and this keeps me in line. I thought about your dilemma and I guess I just have to say I would probably look at it the way I look at other things in my life. I know I can't control how I die but I take certain precautions to avoid dying in a particular way.

I always wear my seatbelt. I could die in a car crash but I prefer not to smash my face into the windshield or be thrown from the car. I take my blood pressure medicine. I know I could still have a stroke or heart attack but I have two friends whose husband's have already had heart attacks. I don't want to put my family through that or have it myself. So I do what I can.

I take other precautions. I like candles but I don't leave them burning when I leave. I don't smoke as my Dad died of lung cancer, an ugly way to go. I lock my doors and park my car under a light if I go out at night.

My point is we all have our own personal code of ethics and precautions we live by. Some of this if for ourselves and some of this is for our families. You must find your own personal code and decide to live by it, no matter how it puts you out. If you decide that is the way you require yourself to live, it will no longer be a burden. It will be a coat of arms.

[mastiffmommy]

That is a tough one, I can understand the difficulty.

Gluten almost killed me so for me its VERY easy and I hate it with a passion. However, if I could go back 20 years and somehow tell myself not to eat Gluten my life (while a good one) would have been a lot less painful and my quality of life much better. It kills you so slowly that it is hard to notice the changes - like when your shocks start going on your car or something and you just get used to it. The slowness here is the danger and as your brain functions less you just think less logically which makes it worse.

[theclutterhouse]

Hi, I want to let you know that this disease is VERY serious. People have died! I'm not sure how old you are but if your planning on having children take this into consideration. I am a mom of 3 beautiful children. I lost 4 babies because of this disease. Two of my children have Celiacs along with myself. They, especially my oldest son is seriously ill right now.

Even though you may not show signs now, you most likely will later in life. I just lost my Grandma who raised me to colon cancer in May. The Celiacs we think, comes from that side of the family. Her dad died very very young, her brother also passed away very young all of the same cancer. My Grandma died just a few months after we were diagnosed. Because of her condition we were unable to have her tested.

Please this is not a matter of will power, it's a matter of life and death for some people. Trust me, I know how hard it is. You have to surround yourself with all the support you can get. Don't be afraid or embarassed of having to explain your needs to anyone. It's not about them, it's about you.

Your life changes because of this. Food becomes #1 in your life. Many people have no idea and some that do don't realize how serious it is for us. I'm sure if I were in your shoes I may be doing the same thing. Please, I hope that somehow some way you will be able to go back gluten-free so that whatever damage has been done can heal and hopefully no furthur damage will occur.

I wish you the best,

Andrea