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AllysonBrightMeyer

How Long Until Feeling Better?

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Hey again everyone,

I have been gluten-free for almost a month now, but am still really struggling. The "bathroom" issues have just about gone away completely - typically if I have that, I can figure out that I somehow got "glutened" and avoid the problem next time.

But I am still feeling tired and "blah" all the time, no energy, etc. I am still having trouble getting up in the morning and work days are really hard.

So many people I know say that after they cut out gluten, their lives were changed dramatically, and they started feeling loads better. My question is this - how long did it take you guys to really start feeling better?

I want my life back (or I want to have it for the first time, lol). I only work part-time right now and would love to go to full-time but I feel like I'm not sure if I can trust my health to let me work that much without it completely wiping me out.

Gluten is my only problem (dairy, etc, are all okay for me). We had my thyroid, etc, checked and there were no problems.

Any advice/thoughts on this would be very helpful! Thank you!!


Allyson Bright Meyer

Author, Scrapbook Artist, Mixed-Media Crafter

Gluten-free since January 12, 2007

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Yes Ally, you do read that and just speaking for myself, I can tell you, my life changed drastically, yet that doesn't mean I still didn't have issues. I was so sick and not having diarrhea every night was something to brag about. We do all feel better, usually quite quickly, yet most of us were feeling so horrible that even the smallest improvement means so much. If your diarrhea has almost stopped, then you are doing great. Each month will be better, each milestone you reach is an improvement. Keep at it, you are doing great!


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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I really wish I could give you a definitive answer but it seems to depend on so much...

Firstly your age at diagnosis and how long you were eating gluten for.... and also just age because we recover more slowly as we get older. I'm 38 and my mom 60 (don't tell anyone I said) and we both went gluten-free together... my mom had a much harder time and recovered a lot more slowly.

A second aspect, again my mom was mostly gluten-free but still getting contaminated.... most of us seem to find after going what we think is gluten-free we were making mistakes...the problem is the closer to the start of your gluten-free journey and the more a accidental glutening seems to set you back ... once your healthier and your villi repair your much stronger and recover better ...

What I have recommended before (and I wish I had started like this) is if its possible go 100% gluten-free... no packaged food, nothing even the tiniest bit suspicious, no eating out etc. for 1-2 months... apart from feeling better eating fresh produce anyway this gives the maximum healing time and condistions for your poor damaged GI tract.

I won't kid you and say its easy, its not at first... but I do beleive it gives the best results fastest.

Also if you have secondary intolerances this is the best way to identify them... while you eat things that should be OK but your not 100% sure its hard to determine what is making you ill. If you go 100% gluten-free you will find out if its this or something else.. its unlilkely but you could have something else wrong too so making 100% sure will identify or hopefully not identify this.

The chance is if you can be real strict for 1-2 monhs you will see that last part of getting your life back you so deserve!


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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For me, it hasn't been immediate. Baby steps...then suddenly I realize I am doing something I haven't done in a long time...like vacuuming the whole house in one go. And then still have the energy to fold clothes, then read to the kids, and so on...or something like that.

I still feel so tired at the end of the day ( I have been gluten free 5 months now), but then I look back at my day, and I am doing so much more.

At least that is how it's been for me. :)


Gluten free since Sept. 2006

Improved on gluten free diet

Enterolab results confirmed suspicions on Jan. 29th 2007

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I've been wondering the same thing, I've been gluten-free for three weeks, and am still so tired. I've had to start messuring my recover by a different scale. I like Sudoku puzzles, and my time has suddenly improved on them (I'm thinking clearer). I had to give up logic puzzles because I couldn't figure them out anymore, so I'm going to try then again. I actually cleaned the whole house and did laundry in one day this week. Although to healthy people, that might sound lame, but you all know what I'm talking about. I really felt good about it. From what I've read it can take months (and for a lucky few) years to get back to normal.

Good luck


Stomach problems began November of 2005

Gall bladder removed April 2006

Positive Blood test October 2006

Refused endoscope

Gluten-free since January 21, 2007

Positive reaction to diet

The Lord gave, and the Lord has taken away; Blessed be the name of the Lord. Job 1:21b

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For me, my recovery seems to go in spurts, followed by long plateaus. I've been gluten-free for just about a year. The first few months saw big improvements, then things stabilized. After a year, I'm not close to 100% recovered, but I feel better than I used to.

I suspect recovery depends on lots of things, especially age (or lack thereof!) and how long you were sick before going gluten-free. I'm in my 40s and I was sick at least 10 years before being diagnosed. I figure there's been lots of damage done during that time that need to heal.

Don't get frustrated if you've only been gluten-free a few weeks or months. Especially if you've been sick a while, it will take time to get better.

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I felt better, after going gluten-free, very quickly - as in a few days to a week. I did have a severe case of celiac, probably because I was consuming a lot of gluten. My villi, one year after going gluten-free, still showed signs of damage after an endoscope exam at Columbia, but my blood work was excellent. I plan to get tested again soon.


Celiac diagnosis from positive blood work & endoscope (2005)

Serologic equivalent: HLA-DQ 2,3 Subtype 2,8 (double Celiac genes)

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Thanks everyone for your replies. It is so helpful to know that there IS a light at the end of the tunnel!

I so wish no packaged foods was an option around here! I am 100% gluten-free and am avoiding the stuff I know is bad, but eating all "pure" just doesn't work at the moment. I am a newlywed and before this we *rarely* cooked for ourselves beyond sandwiches (lol), big fast food addicts (still craving a double cheeseburger from Wendys). We are trying to get better at cooking "real" meals and using whole ingredients, but it is certainly a slow process.

Getting there slowly but surely - hoping to be really feeling better soon. I want my life back! :)


Allyson Bright Meyer

Author, Scrapbook Artist, Mixed-Media Crafter

Gluten-free since January 12, 2007

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ive been feeling fine unit about a month ago was in the hospt for 14 days with stomach pains direay everytime i eat i get pains in my stomach they did a colonscopy endoscopy did a cck hida scan on my galbladder that cam back fine so i go to the GI doctor next week im hoping that something shows up because im sick of being in pain :(

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Thanks everyone for your replies. It is so helpful to know that there IS a light at the end of the tunnel!

I so wish no packaged foods was an option around here! I am 100% gluten-free and am avoiding the stuff I know is bad, but eating all "pure" just doesn't work at the moment. I am a newlywed and before this we *rarely* cooked for ourselves beyond sandwiches (lol), big fast food addicts (still craving a double cheeseburger from Wendys). We are trying to get better at cooking "real" meals and using whole ingredients, but it is certainly a slow process.

Well congratulations !

Actually cooking for yourself is probably much easier than you think, shopping to cook from scratch is a bigger hassle.

Once you have the stuff its just a bit of practice, getting used to techniques and following recipees until your ready to branch out for yourself. The biggest impedement is usually not having the basic stuff in your larder/fridge :D

What seems to help a lot of people get going is to go shopping specially for 1-2 recipees....

There are 101 simple things ... barely harder than eating a micro -meal... and its largely just getting used to it.

For instance just grilling a steak or chicken breast.... boil/micro some frozen peas, boil some potatoes and mash or not...

At least this way you treally minimise your risk of contamination.

As you get confident you can do something a bit more adventutous but really each stage is just a small step... for instance you can make roast pots or a carrot/turnip mouse ..

Anyway.... its up to you but you can try by just choosing a really simple recipee and buy the stuff in.... pecially that way you know you have everything...

Getting there slowly but surely - hoping to be really feeling better soon. I want my life back! :)

Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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..... I am a newlywed and before this we *rarely* cooked for ourselves beyond sandwiches.....

abm,

Yeah that makes it harder, and I'm guessing it's something that many find by neccessity must change. It's been easier for me as I've always done the grocery shopping and all the cooking and we rarely ate out anyway.

Another thing that's hard, is I'm still finding out just how critical it is to carefully read the ingredients. Last night we made some taco soup/chili. I had two cans of chili beans, a great value (walmart) and a bush's best. I had looked at the great value can and although it's got a lot of different things there's no wheat flour. The bush's best however, does have wheat flour. I almost used it, it was only as I was about to open the can that I double checked. Something like that happens pretty frequently around here.

Good luck and hope ya get to feeling better soon - for good! lm


gluten-free 12-18-06

colonoscopy, upper GI
blood, urine, stool tests, prometheus panel
positive endoscopy/positive duodenal biopsies (severe villous atrophy, high intraepithelial lympocytes)
diagnosed celiac disease by Gastroenterologist Andrew R. Gottesman, 12-18-06

"Sobriety sucks. That's why they invented booze in the first place." Denis Leary - Rescue Me

Beware the chocolate of Chiapa

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I`ve forgotten when I went gluten-free because I don


Diagnosed as an infant failing to thrive 40 years ago. Followed diet for 17 years more or less then quit. 20 odd years later after constant illnesses and reading this forum gone back to gluten-free with my tail between my legs.

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Thanks everyone for your kind words. I am trying to hang in there.

Physically, things are about the same. Accidentally got glutened last night (forgot to wash hands after handling pizza before eating my own food - not sure HOW that happened, yipes!) But dealing.

Emotionally, things are rough. Depression was always an issue for me - I was hoping things would be better now that I'm gluten-free. But it's almost like it's worse. I'm having such a hard time with the diagnosis - avoiding any social events where there's going to be food (basically everything), feeling low, etc. It's just worse.

Then I get so frustrated by the fact that I can't find anything to eat that I don't eat anything (this seems to happen at least once a day when I'm feeling hungry), and then I don't have any energy because I'm just not eating, but there's just nothing here that I can make without "cooking a meal" and I still just don't know how to really do that yet. Such a bad time for a diagnosis - newly married/on my own, don't know how to cook anyway. We are out of lunch meat, etc, and then I get too tired to go out and get any more, it's just this awful viscious circle.

No support group around here that's currently meeting, and I feel like my family & friends are just tired of hearing about it. I do see my old depression counselor once a week, which is helpful, but she doesn't understand. I just wish I had a "real" person to talk to who could relate to what I'm going through.

Any ideas on how I can kick this low mood - I want to feel better - physically & emotionally - but I am just so tired and feeling so dang depressed & angry about my diagnosis that I feel like it's just getting worse.

Thanks.

PS--Also, gfp, thanks for those cooking ideas. We are getting better at dinnertime, but the rest of the day is still really rough.


Allyson Bright Meyer

Author, Scrapbook Artist, Mixed-Media Crafter

Gluten-free since January 12, 2007

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I had very mild depression (nothing serious, just lousy moods due to low thyroid) before dx, but after my celiac dx in May I was severely depressed and was considering medication, but finding this board and the support groups here helped tremendously. Also, everyone I talked to that has celiac said you have to allow yourself time to grieve, which is so true. You really have "lost" something - some part of your life, whether it be the spontaneity of going out with friends for dinner or going on vacations, etc. Everything takes A LOT more planning now, but it can be done and eventually you'll get used to it. I just try to keep reminding myself that if I don't do this, I will end of with much worse problems. There are several good books to read, and lots of gluten free cookbooks. You should get some of these (the book I read was Wheat Free Worry FRee by Donna Korn - I think there are more recent ones (this is a couple years old), but it was very good and has recipes in it too. Also, search this site and the net for gluten free recipes and you'll learn to cook (cooking's easy - it's baking thats hard!) lol

You can always vent on this site whenever yoiu are feeling bad - most of us have been there/felt that way too :)

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;)

Hey again everyone,

I have been gluten-free for almost a month now, but am still really struggling. The "bathroom" issues have just about gone away completely - typically if I have that, I can figure out that I somehow got "glutened" and avoid the problem next time.

But I am still feeling tired and "blah" all the time, no energy, etc. I am still having trouble getting up in the morning and work days are really hard.

So many people I know say that after they cut out gluten, their lives were changed dramatically, and they started feeling loads better. My question is this - how long did it take you guys to really start feeling better?

I want my life back (or I want to have it for the first time, lol). I only work part-time right now and would love to go to full-time but I feel like I'm not sure if I can trust my health to let me work that much without it completely wiping me out.

Gluten is my only problem (dairy, etc, are all okay for me). We had my thyroid, etc, checked and there were no problems.

Any advice/thoughts on this would be very helpful! Thank you!!

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:rolleyes:

;)

I have been gluten free for two years and am finally feeling better, but I am 43, and from what I read, the older you are, the longer your body needs to fix things. I initially got better for two months, before I got so much worse that I thought I might be checking out. I stopped menstruating, lost 59 lbs down to 104 lbs, and became allergic to anything I put in my mouth. My stomac hurt so badly, I got herpetiformis on my legs and hands, my throat would swell after I ate any fruit, and I got chronic cystitis. I was told that it was all in my head. I was so tired all the time. Nobody knew how to help me. I got on the internet, resd books about allergies, and talked to clients of mine ( I am a hairdresser) who had it, or had some relative with it. It turns out to be much more common than you 'd think, once you know about it. I got on the specific carbohydrate diet to avoid things too complex to digest with a dammaged intestinal villii ( Book: Elaine gotchall, Breaking the viscious cycle), then I concurrently did a five day rotation diet to get my immune system to quiet down,( mickael Murray, "chronic candidiasis") along with a further elimination diet , B12 injections , pro biotics course and sserious nutritional supplementation ( see foundation for integrative medecine, dr leo Gallant, Leaky gut syndrome, on the internet).

And slowly, I put some weight back on (18lbs in two years), I started menstruating again, and I can eat fruit again. Still cannot digest any starches or lactose, but hey, when I look where I came back from...

Making it though the day was a feat, and one step at a time, I am getting there.

One milestone was when I could eat raw vegetables again (Pured). I did a little dance of joy.

What happened to me is that the bad bacteria took over the good guys while my immune system was under duress, and then I got all kinds of things to fix. Great help was to be had from an accupunturist in my town (seattle) and thank heavens for the internet and the great info it provides. I read all I could find on this site and googled all kinds of things. foods, supplements, articles...

The good news: my grandmother had celiac, died without knowing what it was, was in and out of mental hospitals, my father has this, he is the crankierst person on earth, he does not feel good ever, his sister has been sick all her life with this and never figured what it was. She got tested for antigliadin and did not test positive, nor did I, But I wouldn't give up and got an endocrinologist friend to order the genetic testing, and there it was, written all over me CELIAC.

My point? I thank my stars every day for the priviledge of knowledge. however long it takes to fix it, I'll get there, because at least I know what it is better late than never.

Oh, incidently, all kinds of ailments that afflicted me before I got gluten free are gone: arthritis all over,nasal allergies gallore, asthma, skin rashes of all sorts, early melanomas here and there, plantar fascitis, carpal tunnel. how about that?? could all those have been a product of poor digestion? I think so.

So hang in there . things get better, much better. Not always fast though...

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It's been a slow thing for me. I noticed small changes at first but nothing bigger. I am sure the fact that it took a couple of months for me to figure out I can't have any Legumes at all and no dairy. Once I stopped with these things I started to get more energy, but I still have a long way to go.

According to EnteroLab and Dr Fine it is normal that it takes time. I bought his DVD of a seminar and one doctor there said to expect soem changes within a month, then the most of the GI problems should change withing 3-6 month and up to a year, even 2 years he said, for depression, anxiety and chronic fatigue to get better.

Hang in there! I know what you are going through. We all do.


One Celiac gene and one gluten intolerance gene (HLA-DQ 2,1).

Grain free, casein free, soy/legume free + a bunch of allergies I have had since I was a child (stone fruits, nuts..carrots)

Following the Specific Carbohydrate Diet, but no nuts, legumes or casein.

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