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Gained Weight Before Diagnosis
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I just discovered that I am gluten-intolerant but was sick for over a year without even knowing why I was. Doctors thought it had something to do with pre-existing medical issues related to me GERD. But during this year I gained 20lbs and no matter what I did I could not get it off. I wasn't very active all the time because of my illness, but I didn't eat terribly (hindsigt: gluten was my best friend, especially when I was placed on a vegan diet plan). I did go to the gym and do workouts when I felt "decent."

Did anyone else gain weight before they discovered gluten was the culprit? I have only been eating gluten-free for almost a week now and am trying to learn all I can about how to cook and how to live with this. And one of the things is that I'd like to get back down to my normal weight. I realize that diet and exercise are key components, but my mom had a friend and she lost weight without doing anything at all simply because her body was healing from the damage the gluten had done to her. She had Celiac's, but as far as tests confirm I do not, I simply have a gluten-intolerance.

I am just hoping that this will be one positive side to dealing with this issue. Just wanted to find people who live their lives this way because from a very beginner perspective, this is scary to me since I am completely lost on what to do and how to cook. And if I could lose all this weight I've gained it would help me feel a little bit better. :]

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You are not the only one! I had issues for 7 years before I figured out the problem was gluten. Needless to say I gained more than 20 pounds in the process. I am still healing inside, but I have started to exercise more so hopefully that will turn around. The one thing I noticed is when you exercise, you feel the gluten affects more. Just something to think about.

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I gained weight, too, prior to diagnosis - I think mainly because I felt so crappy & my diet was so poor! I ate a lot of "convenience foods" and never was very active - I ached all the time and just was in poor health. Now I have been gluten free for some time, rarely eat premade gluten free foods & work out regularly & I have lots 40 lbs. I eat pretty much only fruits, vegetables & lean proteins and drink really only water & black coffee.

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Yep... I gained weight too. Almost 50 lbs... I am only 5'2" and my highest weight was 170. I had gall bladder issues last year and started to go gluten free and I lost about 15 lbs... but then over the holidays I let gluten creep back into my life. I gained some of the weight back, and I felt SO miserable. It was to the point my doctor tested me for lupus (negative), celiac (negative, but it was not a complete panel) and finally said she thought I had fibromyalgia, and sent me to a different doctor.

In the meantime, I went completely gluten free, because it made me feel better before. When I met with my new doctor some my symptoms were already clearing up, she told me that I should NEVER have gluten again. She was finally someone who understood and didn't think I was crazy. She also said that I was not tested properly, but did not see the need to retest because I was already feeling better with no gluten.

Anyways... that was a little over a month ago. I am now down to 150... I am not constantly feeling like I need to eat. Before I would feel sick to my stomach, but felt that bread or crackers would make me feel better. I was constantly eating. I even knew I wasn't hungry, but I felt that if I ate I might feel better. Wierd. I no longer feel that way.... I actually am surprised by how little I actually eat now.

I am hoping I will continue to lose some weight... but I am just happy that I don't feel like total crap all the time.

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Late to respond..but yes, I gained a LOT of weight. Last year, I was a temporary letter carrier with the Post Office. After 9 months of walking and climbing stairs for 9 hours a day, I had lost 30 pounds. I felt so amazing except for my stomach issues I always had.

When my assignment was over (temp), I went to work in an office. Within 2 months, I gained 32 pounds. Not only that, but I felt awful all the time. I didnt do anything all day but I would go home exhausted beyong belief.

I went to the dr for a routine blood check (for my hypothyroidism) and my dr was concerned about my weight gain, combined with my blood work, all of my vitamin levels were really low. Even with the loss of excercise, my diet didnt change, and I wasnt eating more..my thyroid was ok but that was a LOT of weight to gain so fast so she had me checked for celiac disease, and then I went to a Specialist, had the Endo and here I am...

I am only 4 days gluten-free and I have lost 8 pounds. I know its due to how bloated I was, water retention, etc..but its amazing how much better I feel.

I hope that weight will keep coming off, but I will also be monitoring my intake, as well as adding some excercise in. Now that I will have more energy to actually MOVE, I hope it will allow me to continue losing weight. I am a good 60lbs overweight and looking to get rid of it.

Through research I have realized that it can go either way..I know Celiacs who are/were extremely under weight before diagnosis, but I also know others like myself who were/are overweight and were gaining steadily before diagnosed.

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I'm new here but yeah. I too have gained weight. I been feeling gloomy and also have had a poor diet.

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I gained weight, too, prior to diagnosis - I think mainly because I felt so crappy & my diet was so poor! I ate a lot of "convenience foods" and never was very active - I ached all the time and just was in poor health. Now I have been gluten free for some time, rarely eat premade gluten free foods & work out regularly & I have lots 40 lbs. I eat pretty much only fruits, vegetables & lean proteins and drink really only water & black coffee.

Newly diagnosed and would like to know what a typical diet is for you in a day. Thanks.

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I also gained a LOT of weight. My weight gain started in 2006, and by 2012 I had gone from 175lbs (a healthy weight for me) to about 275lbs!!!! I put on 30lbs of that in just two months in 2011 when my doctor prescribed an anti-depressant that didn't agree with me (she was picking at straws trying to figure out what my problem was). I tried and tried to lose weight, but I only ever gained. I counted calories, worked out as much as I could (I had zero energy), but saw no results.

I started eating gluten-free about 4 1/2 months ago, and since then the weight has started coming off (without dieting), and I finally have energy again to go to the gym. I didn't think I could ever feel this good again.

I have a sore spot for doctors, because they kept telling me to eat less and workout more, and I kept telling them that I was and it wasn't working. They didn't believe me. One of them just outright called me a liar. One of them rudely wrote me a prescription to "EXERCISE!" on a piece of prescription paper. Even a gastroenterologist told me my problems were because I was too fat....well genius, what is causing the weight gain? It certainly isn't a lifestyle change. Gah!! Years and years of useless doctors have left me fuming mad, and it ended up being such a simple solution that was beyond any of them to figure out.

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I've been on a gluten challenge but I've gained weight too. Not a ton, mind, just five or six pounds, but I hate that feeling. It's because I was eating tons of sugary foods, as I knew that whatever my results were, I was still going gluten-free at the end, and would never eat most of this stuff ever again. :P Worst justification ever.

But seriously, when I was a freshman, I went on South Beach (eliminated all grains) and lost 20 pounds within a month. I'm definitely a weight-gainer.

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I gained a lot of weight before my diagnosis. When I was in college from 2001-2005 I weighed anywhere between 115-120lbs and I'm 5'3". I think my Celiac triggered after college and I steadily climbed to 155lbs which was my highest the beginning of this year. I was so frustrated because nothing worked, diets, exercise, and I didnt lose any weight. After my diagnosis in May 2012 I went gluten free and began eating more whole foods like lean meats, fruits, veggies, and cut out sugary snacks, junk food, and fast food. I've been going to the gym at least 5 days a week and am happy to say that I'm now down to 142lbs and am working to lose more.

My doctor says that the reason why I gained weight was because before going gluten free my body was absorbing some nutrients, but not all. So it was in starvation mode and held onto EVERYTHING I ate because it wasn't sure when it was going to get its next "meal." Now that my body can absorb more, its allowing me to lose weight.

I'm not positive how this relates to gluten intolerance but I'd try to stick with whole foods - my nutritionist told me that I shouldn't eat heavy carbs after 3 in the afternoon, and to make dinner my lightest meal with only veggies and some protein. She also said we shouldn't eat 4 hours before going to bed. Maybe this could help you?

Good luck!!! I'm rooting for you!!! :)

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We cook gluten free for the kids, but I cheat all the time. After reading all these, I wonder if this is why I can't seem to lose weight, even when I eat well under my calorie intake.

And yes, I think gluten effects get worse when you exercise. Taking my then three year old for a walk used to feel like I was torturing her unless I agreed to carry both her and her irish-twin sister.

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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