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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Overweight With Celiac
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35 posts in this topic

Hi everyone,

I am new to this whole Celiac thing... I tested positive for with the bloodtest and had an endoscopy done last week, which I am still waiting on the biopsy results, but the dr strongly suspects Celiac because of the way my small intestines looked.

I have seen a lot of stuff talking about weight loss and Celiac but very little about weight gain. I am 24 years old and until I was 18 years old I was a size zero but once I hit 19 I gained around 70 lbs and now am a size 15. And no matter what I do I can't seem to shed the weight. I have not started a gluten free diet yet, because I haven't gotten the biopsy results back yet and I am having a hard time letting go of all the foods I love. But I work out 6 days a week and I diet, eating a small breakfast, salad for lunch, and a sensible dinner. It just seems like there is nothing I can do to lose this weight and I was wondering if there is anyone out there experiencing the same thing?

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Hello, and welcome.

Good news for you - there are just as many overweight celiacs who can't lose as there are skinny celiacs who can't gain. Getting rid of the gluten usually allows your metabolism to adjust and get back to your normal weight over time.

Now that you have had all your testing (positive) there is no reason not to start the gluten free diet immediately and start healing :)

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Hello, and welcome.

Good news for you - there are just as many overweight celiacs who can't lose as there are skinny celiacs who can't gain. Getting rid of the gluten usually allows your metabolism to adjust and get back to your normal weight over time.

Now that you have had all your testing (positive) there is no reason not to start the gluten free diet immediately and start healing :)

Thank you! That is good to know! I really felt like I was alone. And until I learned about the Celiac I could not figure out why the weight wouldn't come off! Did you see a nutritionist to learn how to figure out what has gluten and what does not? I've read that it is even in artificial flavoring and coloring. The list of foods with gluten is intimidating and I feel like I don't know where to start. Th grocery store has about 3 feet of a shelf with gluten free stuff which doesn't give me a lot of variety :(

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...what has gluten and what does not? I've read that it is even in artificial flavoring and coloring. The list of foods with gluten is intimidating...

Get an up-to-date list of safe and unsafe ingredients. Many things which were once thought to be unsafe are now recognized as safe. Wheat used to be able to hide in things, but today wheat must be clearly disclosed on the label. The risk today is hidden barley, and even that is not common.

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I found that my 'craving' for food changed and I am more easily satisfied now that I eat gluten free... I still need to lose weight though.

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Just to encourage you on the weight thing.

I was normal thin most of my life but when I started getting sick I gained weight to 180 lbs. in a matter of months. I stayed that way and was unable to lose for several years.

I went gluten free 5 months ago. I lost weight rapidly and in a few months was back to 120 which I thought was my normal weight. I have continued to lose and now am 115 lbs, and my muscle tone is also improving. My metabolism has completely changed and I eat as much as I want to with the only exception being that it is gluten free.

Gluten was the cause of all of it.

Hope your weight gets to where you want it on going gluten free.

It made all the difference in the world for me.

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I thought this topic would be an entertaining read.

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I thought this topic would be an entertaining read.

i have been gluten free for 4 months an haven't lost any weight - in fact I've gained! My clothes don't fit different so I'm assuming I'm actually gaining muscle FINALLY but i weight 217 and should weigh around 175-180. Any thoughts, any one have this experience?

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This is interesting to me. I too was a size 0 and am now gaining...i was on a gluten free diet only 2-3 weeks (started gluten again in prep for testing) but i didnt notice rapid weight loss (besides some bloat around belly)......does this mean it wont happen even when i'm gluten free? or does it just take time to adjust? soooo frustrating

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Thanks to everyone for the advice! I am hoping to see changes soon! Good luck to everyone with the same issues, I know how hard it is!

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I have been gluten free for 7 months and have gained weight also, very depressing. I have been working out atleast 4 times a week but nothing is helping. I hope I start to lose weight soon, I read that healing time is different for everyone. I hopes an it starts and I begin to lose weight. Listening to everyone is encouraging.

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I have lost 15 lbs in the first two months of my gluten and dairy free diet. Once you remove those two huge portions of your diet, you start to look at whole foods like meats, veggies and fruits. Back to the basics I guess. I track everything online so I know where I am at for calories. It is such a drastic change, I feel like I have forgotten how to eat. If you want to lose weight, get an online diet tracker like www.sparkpeople.com or www.anytimehealth.com and see what you are taking in and burning up. It puts you in control with quantitative numbers to visualize. I have another 15-20 to go, want to join me? :-)

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To the OP - yes there is hope! I was under 100 pounds until about 16 when I started gaining weight up to my heaviest of 184. I would diet, using the South Beach diet and feel great losing all the weight, but that was with exercising 2+ hours a day. Of course once I added wheat back in I felt terrible and gained the weight back so fast it was crazy.

I have been gluten free since February 1, 2011 and added in some other "frees" along the way. As of this morning I've lost 20 pounds and that's been without counting calories or restricting what I was eating, besides the gluten free etc. I finally have the energy and stamina to get up off the couch so I've added in some moderate exercise 20-30 minutes a day usually.

One thing you really want to watch out for is all the gluten free stuff. Luckily for me most has either soy or corn so I couldn't eat it if I wanted to. The gluten free foods can be higher in calories, sugar and fat than the normal stuff so be careful and aware!

The best way to approach the diet (in my opinion) is to try and add more naturally gluten free items into your diet. Go for the fruits, veggies, lean meat etc. And try new stuff! I'm actually eating a better, more varied diet now because I am paying attention.

I'm an optimist so I've tried my hardest to find the "happy place" in all of this. Mine is that I feel great, I'm losing weight and I know I'm being good to my body now. My Dr commented that at the rate I'm going I will live to be 110! Good luck on your gluten free journey! Try and find the positive things. I even started a blog so on the days I feel down and sorry for myself I can remind me of the positives.

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I was diagnosed with Celiac Disease in 2008, and I am also overweight. I too was under the misconception that most Celiac's are underweight.

You're not alone!

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I, too, am large.......went from a size 10 to a size 18-20, although I walk 45-60 minutes a day and use hand weights. I have thyroid issues, too. All my weight is in the middle and I tested negative for Celiac but I started gluten-free diet today because this feels like a death sentence to me. Can't find clothes to fit an athletic, shapely figure with wide hips, a booty and stomach to match. I finally faxed my GI this evening, told him something was really wrong with me and I was going gluten-free. I also asked him to give me something to help the weight loss along. Lap band surgery is looking appealing these days. :angry:

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I'm having a hard time losing weight too.

I'm 5'10 and at the moment yoyo between 165-170 lbs :angry: which is about 25 lbs more than I want to be.

When I was diagnosed in December, I was hopeful that the weight would just come off by itself, but that hasn't happened.

My Dr thinks that once my gut heals, it will be easier for me to lose.

I also have Hashimoto's and even with thyroid meds it just is harder to lose weight than it used to be.

If I'm honest, I have to admit that many days I consume too many calories to lose.

I tested positive to gluten, casein, eggs, soy and yeast. That combination makes it hard to find something to just grab and eat. I love Lara bars and they have been my quick go-to snack of choice and because they taste so good (especially the cashew and pecan ones) I often eat one or two even if I'm not hungry. They are around 200 calories each and that adds up. A couple of glasses of wine at night

also don't aid with weight loss.

Keeping a food/drink journal for a few days helps me realize that I often mindlessly consume more than I think.

I think that I just need to get better organized and pre-plan my meals and snacks so that I'm not caught hungry with nothing ready to eat except Lara bars :P

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I have lost 15 lbs in the first two months of my gluten and dairy free diet. Once you remove those two huge portions of your diet, you start to look at whole foods like meats, veggies and fruits. Back to the basics I guess. I track everything online so I know where I am at for calories. It is such a drastic change, I feel like I have forgotten how to eat. If you want to lose weight, get an online diet tracker like www.sparkpeople.com or www.anytimehealth.com and see what you are taking in and burning up. It puts you in control with quantitative numbers to visualize. I have another 15-20 to go, want to join me? :-)

I agree, going back to the basics is what will help you lose weight. The gluten free foods are higher in calories and fat and if you stick to 1 ingredient type foods it will really help. I stay away from preservatives and processed foods, I cook 95% of my meals myself and make my own dressings, gravies if needed. I don't eat lots of sweets and drink mostly water. When I do my groceries, I stick to the outer isles, saves TONS of times reading labels and meat, fruits and veggies and dairy if you can eat it are all gluten-free. I have rice flour tortilla's once and a while but they are thing and work just as well for hot dogs/ hamburgers. I find gluten-free breads way too heavy! Hope this helps a bit! I've lost over 50 lbs and most of this was lost when I was gluten free - only maybe 10 lbs when I wasn't.. I find it much harder to lose when I am eating gluten..

Tiana

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I am so relieved to see this topic. I'm not really sure how long I've been celiac -- I was only diagnosed in January, and had TERRIBLE symptoms for 6 months before that, but I had issues with fatigue for long before that -- but as soon as the symptoms started to get really bad, I gained 15 lbs in just a few months -- and I'm only 5'0. I'm in a sorority and at an all women's college, and I've always felt the pressure to look my best, so it was pretty devastating. I went up 4 whole BMI points! I still can't lose the weight, even though I've been gluten free for a few months now. I've been getting "glutened" accidentally about once a week for the past couple months, so that probably doesn't help. My clothes don't fit me right and I'm covered in icky stretch marks. How long has it taken other overweight celiacs to lose the weight after going completely gluten free? Do you have to heal completely before losing the weight?

And does anybody know WHY some people gain weight with celiac? It seems so counter-intuitive!

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I've told my story many times, but I always loved to cook/bake. When I was diagnosed w/ celiac disease, after only a few months of symptoms, I started eating all the stuff I COULD have to make up for all the stuff I could no longer have... and put on 40 lbs!

I put myself on a pretty much grain free diet eating lean meats and veggies/fruits because I was having such horrible heartburn, I was ready to go to the doctor and ask for Nexium! I lost 20 pounds... the heartburn disappeared and, while I'd love to lose the other 20 lbs... am healthier than I've ever been.

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And does anybody know WHY some people gain weight with celiac? It seems so counter-intuitive!

The only theory I have formulated to explain it to myself is that because your gut is not absorbing the nutrients the body needs, the body thinks there is a famine and goes into starvation mode, conserving every calorie it can grab ahold of to carry it through the so-called "lean" times, in the process storing those calories in all the places we don't want them stored :D Once the body can start absorbing nutrients properly it has no need of all those excess stores and can let them go (we hope) :)

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Funny, just yesterday I said to my husband that I feel like I'm 20 again (I'm fifty-mumble mumble years old). I can't wait to get out for my usual 4 mile walk every morning before work.

I have fought my weight - and an addiciton to sugar - all of my life. Now I realize that the constant hunger was the result of not getting the nutrients from the food I ate, and the sugar addiction was from unconciously looking for energy any way I could get it.

It took two years+ eating gluten free before I began to feel this way. I am still overweight (aeraen wasn't built in a day!) but I'm getting to the point where I will have to replace most of my clothes pretty soon. Most important, I am actually ENJOYING my exercise regime, rather than dreading it.

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... and until I was 18 years old I was a size zero but once I hit 19 I gained around 70 lbs and now am a size 15. And no matter what I do I can't seem to shed the weight.

I am not yet diagnosed either, just getting into testing, but yours is my story EXACTLY. And the longer you don't do something about it the worse it gets. I was "underweight" until I was 18 or 19. I didn't even start cycles until I was almost 17.

Then, within literally a year or two, my weight shot up. I didn't gain the freshman 15, I gained the freshman 40. And it just kept going up from there.

And I just don't eat that much. Even my husband has said "I don't see how you can be overweight with what you eat". AND I have had 4 years of chronic diarrhea (sorry if TMI)! How can you stay FAT under those circumstances?!?!?!?!?!?

Well, I'm thinking spending most of your life in starvation mode due to malabsorption issues might be the culprit here.

I can't wait to finish up with the testing and start eating gluten free. Whether my results come back + or (-), I'm still going to at least do a trial because I have so many symptoms.

Good luck to both of us! Hopefully, healthier days are ahead!

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Hi :) Another big girl here that used to be a skinny one.

Not sure how much of the weight gain is due to lack of exercise thanks to the fatigue and weakness, or giving in to the things I craved as opposed to gluten being the direct cause though.

I am diagnosed as non celiacs gluten intolerance - but important to note here that I didn't have the endoscopy. I think the doctor took pity on me seeing the state of me after a month of eating gluten again :blink:

My top tip for giving up on the gluten would be to avoid the processed gluten free stuff. It's expensive, not particularly good for you and I found that i felt deprived because it tastes nothing like the 'real stuff'. I adjusted much easier just eating foods that are naturally gluten free. A jacket potato tastes the same whether or not you are on a gluten free diet :)

Also if you have freezer space, pre prepare one pot dishes and freeze them. It takes the 'ouch I hate this gluten thing' out of the 'I don't really want to cook, but can't order takeaway' times.

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I am too, and I lose weight incredibly slowly whereas I just have to look at food to gain. Gah. I have insulin resistance but even on medication for that, and exercising, and eating well (mostly veges, fruit, lean meat) I still lose on average only about 1-2 pounds a month. I have about 50 pounds to lose. I did find losing the bloat really motivating - turned out I had less belly fat than I thought and now I have a waistline again.

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With no processed foods, can I ask what you eat for breakfast? I've been having a smoothie with a banana, 3 froEn strawberries, 1 cup almond milk and a scoop of raw protein powder( that tastes like you know what). O add 1 splenda packet to make it drinkable( want to get another brand with stevia in it, but this stuff was expensive and I can't waste it). After I drink that I'm STARVING in an hour.

Lunch is usually a sandwhivhes on udi's bread.

I'm in a rut. What are the alternatives?

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