Calling All "old Timers"

[DingoGirl]

Some of us were just writing in another thread that we'd LOVE to hear from old-time celiacs, who've had it for years, I guess? - to write and tell us that this really all does get better. And tell us, perhaps, how LONG it might take to stabilize....that the torture of going gluten-free (and in some cases giving up so much more than gluten, even) really is worth it in the end....that we'll feel fabulous....etc. etc.

Big thank you in advance!!

blessings -

Susan

[jerseyangel]

Hey Susan--you know what they say about two great minds.... . Oh well--maybe we'll get even more stories this way

[Guest BERNESES]

dingogirl- I don't know if I count as an old-timer as I've only been gluten-free for a year but I suspect I was sick for a lot longer than that. It DOES get better- even after only a year, I feel so much better. I sleep better, I eat better, my acne has cleared up, I'm on less depression medication than I have been in 18 years. I have less joint pain. I used to bruise like crazy- no bruises anymore. My nails look great. I was FREEZING when I first started this diet- not cold anymore. My energy is coming back.

And I'm not even an old-timer. Can't wait to hear from them!

[danikali]

Susan, thanks for starting this! haha, I was just going to!!! I started one a while ago and everyone loved it except it seemed like there weren't too many 'completely healed' celiacs out there. Hopefully we'll get tons of responses now. I can't wait to see how this thread goes.

Thanks again!

[DingoGirl]

Hey Susan--you know what they say about two great minds.... . Oh well--maybe we'll get even more stories this way

Yup, great minds....

I was going to remove my thread so there'd only be one, but there are responses. You're right, maybe we WILL get more this way!

[Rachel--24]

Well...I'm no old-timer but in April I'll be gluten-free for one year.

I'm sure I'm not the most encouraging poster cuz we all know I've still got my problems BUT....

there are some good things to report!

1. I'm off pain meds since the 1st day I began the diet. Prior to that I took the pills every day.

2. All of my hypothyroid symptoms went away and I'm not freezing anymore. My hair is fuller and not dry anymore.

3. Depression went away almost immediately after starting the diet.

4. I have tons more energy and go to work everyday after having been on disability 2 years prior to going gluten-free.

5. My mind works!

6. I dont have nearly as many aches and pains.

7. I dont have bruises all over my body.

8. I wouldnt say I'm as productive or energetic as I was before getting sick but I'm getting there.

Berneses...I just read your post. We had alot of the same stuff going on! I sleep way better now too and I dont have nightmares since I went gluten-free.

[tarnalberry]

I've been gluten-free for two and a half years, and it does get better. I never had the severe symptoms, so I got better fairly quickly, but don't forget that there are other medical issues out there that can make you feel under the weather. Going gluten free won't solve the problems not caused by gluten, though I know we really wish it'd be our magic key. I still have asthma, I still get migraines, I still get colds, I still am prone to tendonitis. But those things aren't always connected to gluten, and even if gluten can make them worse, removing it may not solve the entirety of the problem. So, if you continue to have a myriad of problems, six months to a year or longer after you've gone completely and reliably gluten free (and have tried finding other food intolerances), then don't hesitate to continue to follow up with the other things.

But you will *definitely* find that the diet gets easier over the years.

[danikali]

I've been gluten-free for two and a half years, and it does get better. I never had the severe symptoms, so I got better fairly quickly, but don't forget that there are other medical issues out there that can make you feel under the weather. Going gluten free won't solve the problems not caused by gluten, though I know we really wish it'd be our magic key. I still have asthma, I still get migraines, I still get colds, I still am prone to tendonitis. But those things aren't always connected to gluten, and even if gluten can make them worse, removing it may not solve the entirety of the problem. So, if you continue to have a myriad of problems, six months to a year or longer after you've gone completely and reliably gluten free (and have tried finding other food intolerances), then don't hesitate to continue to follow up with the other things.

But you will *definitely* find that the diet gets easier over the years.

Can you tell us what has gotten better for you because right about now, reading your post is kind of making me feel like I'm always going to have stomach problems. I've always had them, just as you may have always had your asthma, so this may not ever go away...? I'm not trying to be mean but we need encouragement!

Thank you!!

[Guest nini]

At the end of this month I will have been gluten free for three years now... after about six months I was able to go off almost all my medications, now I just take one for Fibromyalgia and a very low dose blood pressure med. I used to take over 20 pills a day...

It does get easier. It is worth it. I do feel so much better than I ever have in my entire life and the only time I have a hard time with it is if I don't plan ahead and accidentally gluten myself. But that happens so rarely.

I've found that the diet doesn't have to cost a lot, I can make just about any situation work, I can go out to eat, I can entertain at my house, I can take my Celiac gluten-free child to birthday parites and not worry because I've prepared goodies for her...

Is that the kind of encouragement you mean?

[taylor-]

Hey! This is my first post on any of these message boards, but I've been a member for maybe 2 or 3 months and have had celiacs disease for basiclly my entire life. So while I can't really remember too much about the recovery process, I can let you know that there are so many products and helpful things out there that will help you lead a normal life. Back in elementary school I remember having to eat the same thing every day(rice cakes with some kind of meat on it) and feeling so seperated from the rest of my classmates, but now, about 10 years later, there is a ton of food out there that taste the same, or sometimes better, than the food you might be missing right after going on the diet. All you have to do is try a bunch of different products until you find one that you like. While sometimes the restrictions do stink, you will feel 100% better and look 100% better than you ever have before.

I don't know if thats encouraging enough...but..I thought I'd try..

[VegasCeliacBuckeye]

I have been gluten free for 9 years this November.

Life does get better and easier -- the first year was the hardest for me...so much to learn and how to handle the new lifestyle. After forcing myself to read all of Bette Hagman's books, Dana Korn's books and researching every food item at every restaurant I worked at, I finally became a "competent Celiac".

I am still learning about this disorder everyday (Richard knows more about grocery products and Tarnalberry is very knowledgeable about the science and body processes of Celiac)

It does get easier, but we will always have to remain vigilant about being gluten-free. -- It is life long committment.

Bronco

[danikali]

Great encouragement!! But, and I'm sorry to be a such a downer again , but what about the constant stomach issues and the food intolerances? Do these really go away? Have any of you out there felt like you couldn't eat anything because it all bothered you, only to find that you were having problems with not only gluten but dairy, soy, etc.? And then finally, after years (or however long) after being gluten-free, did you find yourself being able to tolerate most things again and no stomach pains for a long time (unless accidently glutened of course). I mean, do those really really really go away? And when do you stop noticing the 'new' intolerances? And how long exactly (if you can remember) did your stomach actually function like a normal person?

I know, all these questions. I'm sorry if you think I'm asking for a lot, but anything you can think of regarding these specific matters would be WONDERFUL!!!!!!

Thank you all! (in advance)

[Nadtorious]

I've been dx'ed for over 3 years now. I guess I should think of the things that didn't get better after switching to a gluten free diet because so many things did! No more seasonal allergies, no more depression, hypoglycemia, breathing problems, stomach issues, skin problems, frequent illnesses, anemia, feeling faint, anxious, oh jeez, so many..........my hair never used to grow past my chin, now its down to the middle of my back, no more dark circles under my eyes.....much more confident, i don't "snap" on people anymore.........

I guess every part of my life has gotten better!

The only food besides gluten I can't do is soy. No stomach issues at all unless I stumble into some gluten. I do all my cooking from scratch-no premade anything. I race mountain bikes competitively and coach kids on the weekend-training about 25 hours per week, plus school and a full time job. My (very active as well) boyfriend claims I have the energy of a 13 year old boy.

Oh and I got a cat! I used to be deathly allergic to cats!

It does get better. I never thought it would, coz it's been a long journey, but I'm so thankful for being healthy now.

Nadia

[tarnalberry]

Can you tell us what has gotten better for you because right about now, reading your post is kind of making me feel like I'm always going to have stomach problems. I've always had them, just as you may have always had your asthma, so this may not ever go away...? I'm not trying to be mean but we need encouragement!

Thank you!!

But asthma isn't necessarily CAUSED by gluten intolerance, so it's not reasonable to expect going gluten free to make it go away. Stomach problems (particularly stool problems, bloating, gas, and abdominal pain) CAN BE caused by gluten, so, if that't the only thing going wrong, it IS reasonalbe to expect that going gluten free will make it go away.

Basically, I'm pointing out that you can have things wrong with you that are unrelated to celiac disease, and you shouldn't expect treating the celiac disease (by going gluten free) to fix that. You wouldn't expect eating gluten free to 'cure you' of a broken leg, of course, because you know that celiac disease didn't cause the break. (I'm not talking about predisposing you to one because of osteoporosis; that complicates the matter unnecessarily.) But there are other things that go wrong with us that we can mistake for celiac, and I was just trying to encourage you not to feel that the diet is a failure if you don't magically feel like a perfect human being. More of a 'feel free to get your hopes up, but at least set reasonable expectations'.

The symptoms you have that ARE caused by the celiac disease should definitely go away on the gluten-free diet. No one can tell you exactly how long it will take - for some people, it's significant improvement in two weeks and for others, it takes six months to really notice a difference. Plenty of people don't feel '100% better' (however you want to define that) for a year or longer. It all depends on your body - how much damage it's gotten, how fast it heals, and how you treat it.

What has gotten better for me? No constipation (so no hemmorhoids), no sharp abdominal pain or loud noises from the intestines, no abdominal cramping, less fatigue, less nausea, improvement in a gynecological condition I have, fewer and less severe hypoglycemic symptoms. (That's what I remember, at this point, anyway.) And I never had severe symptoms or anything that would make almost any doctor think about testing me (I asked for the tests). But that doesn't mean that my migraines (which is primarily what's contributing to my fatigue and nausea at this point) are going to get better too, if they're not caused by gluten intolerance. (Some people have found that theirs ARE linked, and going gluten free has stopped or reduced their headaches.)

My point is that the gluten free diet will eliminate the symptoms you have that are caused by gluten intolerance, but it's not a panacea for every ache and pain you have. That's all. We often want to think that this one thing will solve all of our problems, and if we still don't feel whatever we think perfect should feel like (which is a problem in and of itself), we think the diet isn't working. It may be working just fine, but there are other issues - like the other food intolerances you noted. You may not find all of those go away just by being gluten free - after all, you can have food intolerances independent of celiac disease. But you may find that they do improve as your gut heals.

[mouse]

I have been gluten-free for two years. My symptons over the years (before diagnosis) always including stomach problems. The last several months, before they figured out what was wrong with me, was spent with HORRIBLE stomach problems. They were all gone shortly after I went gluten-free. I do not have them anymore, unless I get accidentaly cross contaminated or eat something with gluten that I thought was safe. I am very carefull not to eat gluten - ever.

[fisharefriendsnotfood]

I've been gluten-free for 12 1/2 years but I'm 14, so I don't remember not being gluten-free. BUT, all I can say is that if I can be gluten-free in high school, YOU CAN BE gluten-free! YOU CAN DO IT!

Heeheehee.

-Jackie

[DingoGirl]

At the end of this month I will have been gluten free for three years now... after about six months I was able to go off almost all my medications, now I just take one for Fibromyalgia and a very low dose blood pressure med. I used to take over 20 pills a day...

It does get easier. It is worth it. I do feel so much better than I ever have in my entire life and the only time I have a hard time with it is if I don't plan ahead and accidentally gluten myself. But that happens so rarely.

I've found that the diet doesn't have to cost a lot, I can make just about any situation work, I can go out to eat, I can entertain at my house, I can take my Celiac gluten-free child to birthday parites and not worry because I've prepared goodies for her...

Is that the kind of encouragement you mean?

THAT IS EXACTLT WHAT WE MEAN!!!! Thank you Nisla. My day just got a bit brighter!

- Susan

[Guest BERNESES]

I've been gluten-free for 12 1/2 years but I'm 14, so I don't remember not being gluten-free. BUT, all I can say is that if I can be gluten-free in high school, YOU CAN BE gluten-free! YOU CAN DO IT!

Heeheehee.

-Jackie

Jackie- that is awesome! Kudos to you!

I aam much more lactose tolerant than I used to be. I went from drinking 8 glasses of milk a day to no lactose whatsover because of severe D but am now able to eat cheese and occasionally ice cream.

Also, I must say the most hideous thing about becoming gluten intolerant was the smell of my farts- they smelled like rotten eggs or sulfur aall the time. talk about silent but deadly. They were nuts- I almost cleared my husband out of the bed several times. And my poops were these smeary, black evil things. Not to be gross but now I can fart in public without wondering how long the trail will last and I look forward to normal BM's. When I went in to give a stoll sample for the test they were explaining how to do it at home. At the time I was so sick I could poop on command. I gave them the sample right then and there (well, inthe bathroom ) and they were all like, "Wow- you weren't kidding."

Oh yeah- used to have to nap every day at least two hours. Now it's usually only when I have a gluten incident.

Used to have bed-drenching night sweats and insomnia. Gone!

Rachel- I know. I often think our symptoms were/are similar.

[Rachel--24]

Oh yeah- used to have to nap every day at least two hours. Now it's usually only when I have a gluten incident.

Used to have bed-drenching night sweats and insomnia. Gone!

Rachel- I know. I often think our symptoms were/are similar.

Yeah..no more getting up at night and having to change clothes and sheets because I'm soaked and freezing. Those days sucked big-time!

I was sleeping more than 15 hrs. a day with naps in between.. .now I sleep about 6 or 7 hours.

I remember trying to get myself to work and most mornings I'd end up on the floor in the bathroom or back in bed crying. I could barely lift my arms or get myself dressed....let alone drive an 80 mile commute to work. Thank God I was able to go on disability. Now I'm up and ready to go to work every morning. I dont even push snooze a million times like I used to when I was healthy. I actually get up and go.

[ryebaby0]

Hmm.... My son has been gluten-free 2.5 years, my husband 1.5. I can make a mean homemade pizza, host gluten-free dinner parties, and have travelling to potlucks down to a science. (You need a corning heat-keeping casserole, and a covered veggie tray -- that's where we put all my guys' "buffet" selections, so they can pick and choose, too). We don't eat out much, so instead for a family treat we go bowling or to the movies. We found a few restaurants that "get it" but are vigilant when we are there and exhorbitant in our tipping.

We eat a lot of fresh food -- more than we have in the past -- and so our shopping habits changed. Bought a bigger freezer to keep the goodies in. I only make big batches of gluten-free food, and then it's divided into dinner and the rest goes into individual lunch-size containers and the freezer, clearly labelled so you always have something for lunch or a quick supper. We only serve gluten-free food when there's a crowd here, so there's no worry about x-contam. My son's friends keep gluten-free lists at their house, but mostly have converted to fruit-veggies for snacks.

How's that? I used to cry in the cookie aisle, and now I don't buy Pamela's stuff at Wegman's because I think "nah, I'll just make some at home..."

joanna

[darlindeb25]

I will be gluten free for 5 years in July. Before going gluten free, I had panic attacks, borderline agoraphobia, anticipatory anxiety plus diarrhea nearly every night, joint problems, stomach cramping nearly all the time. The one food I thought was ok for me to eat, toast, turned out to be one of my worst villians. I was very overweight, being one of the celiacs that didn't lose. After I went gluten free, within 3 months I was off the 40 mg of paxil I had been taking for years, the stomach cramping was reduced greatly--diarrhea very rarely. The thing that meant the most to me, I was able to drive 800 miles to meet my sweetheart--there was a day when 20 miles was out of the question. Now I live in New York, I work fulltime, extremely rare for me to have panic attacks and I really do feel much better. I won't tell you that things are great. I have developed an intolerance to soy, corn, and tomatoes. From my 25 years, at least, of no diagnosis, I now have peripheral neuropathy throughout my entire body and I did go through early menopause, which is fine with me. Just as someone else said, my hair grows so fast now too. My life is so much better now, not perfect, but so much better. Deb

[Guest nini]

THAT IS EXACTLT WHAT WE MEAN!!!! Thank you Nisla. My day just got a bit brighter!

- Susan

glad to help! I live to help!

I do try to look at the positive side of this dx. Freedom from being dependent on knowing where every bathroom is for miles, Freedom from loads of medications that were only treating symptoms that went away with the elimination of gluten...

The BEST thing for me is the knowing that by dx'ing this early in my daughter, I have hopefully prevented her from having to deal with the lifelong health issues that plagued me for so many years. That is my inspiration. Knowing I am being healthy for her and with her...

[Guest BERNESES]

OK- think about all the yummy foods you have yet to discover. Like Chebe pizza crust which, in my opinion, is better than any regular pizza crust I've ever had. Flourless chocolate cake- pure chocolate love.

Think about having the energy to do all the things you used to do and probably more. I think it's ianm who has often said that now he's been gluten free for awhile he can run circles around his friends who don't have Celiac's. We need to get him on this thread.

Think about making Namaste blondies and having everyone at Christmas eat your dessert over all the other gluten-filled ones.

Oh yeah- and eating out at better restaurants because they are more careful. I eat out less often, but when Ii do it's always at a great place that I know will give me the attention I need and as a result I've had some incredible meals and NOT gotten sick. In fact, I just went out of the country (Turks and Caicos) for the first time since going gluten-free and didn't get sick there at all. Wwhereas the year before on my honeymoon (before I was gluten-free) I spent an entire day in bed sleeping because I was so sick.

[paulasimone]

i've been gluten-free almost 3 yrs now. it's taken me a good long while to get truly gluten-free, mostly because i had *no* idea how to cook *anything* (no, really! I grew up eating fast food, then ate in college cafeteria.)

things that i suffered my whole life that got better:

nightmares

anxiety

depression

canker sores

things i had been dealing with since college (i.e. past 15 years) that *went away*:

constant sinus infections

constant throat infections

being sick all the time - i caught every bug that went around, and bad

hypothyroidism

plus, and this is pretty crazy, i had no idea until i went gluten-free that my stomach hurt all the time. because that's just how it was, i thought it was normal. i never told a doctor my stomach hurt because i didn't know it did. when i went gluten-free suddenly it didn't, and it was like a miracle because i didn't even know that feeling of not-hurting was possible - i had literally never considered it. that still blows me away.

i also used to wonder why i looked pregnant after every meal - that's certainly improved. i lost 10 or 15 pounds pretty much immediately when i went gluten-free, without trying. and my face suddenly wasn't puffed up like it was for the past 15 years (!!! didn't realize *that* was not normal either!)

and i used to be miserably, freezing cold all the time - got diagnosed as low thyroid and put on thyroid meds. after gluten-free, didn't need that anymore. the seasons don't drag me down so much anymore. (though i'm afraid global warming is helping that, too, doh! ) i also got rid of the anti-depressants - i just take vitamins and supplements now and feel *way* better than before. i used to be seriously fatigued all the time - i just couldn't hang. now i have lots more energy and lots less brain fog.

all of this stuff - i thought it was me, my personality, and i was doomed to feel like that forever - it's *so awesome* to know it doesn't have to be like that! i was a secretary before and always exhausted. when i went gluten-free, i got into graduate school and now i'm in school for a PhD - there's no way on earth this would have been possible before.

in short, i feel like i'm a different person - i am, without a doubt, a *happier* person.

is that encouraging enough?

paula

[DingoGirl]

all of this stuff - i thought it was me, my personality, and i was doomed to feel like that forever - it's *so awesome* to know it doesn't have to be like that! i was a secretary before and always exhausted. when i went gluten-free, i got into graduate school and now i'm in school for a PhD - there's no way on earth this would have been possible before.

in short, i feel like i'm a different person - i am, without a doubt, a *happier* person.

is that encouraging enough?

paula

Paula, you have no idea. That is just what I wanted to hear, your "issues" sound a lot like mine, esp. the psychological ones. (except what's weird is that my stomach hurts more now AFTER going gluten-free - PLUS I've gained 15 pounds that I"d like to lose part of). I was a bad (read: scatterbrained and totally disorganized) secretary a couple of times; I, too would like to go to grad. school - can't exactly fathom it yet. Congratulations on pursuing your doctorate! Really amazing and thank you so much (and ALL of you who've shared on this thread!) for sharing your story. I guess it just takes time.

Susan