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jparsick84

I'm A Weird Celiac - Gained Weight?

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I'm already a bit of an abnormality, as my Celiac symptoms were always strictly skin-related (DH like you wouldn't believe!). I was VERY lucky to not have the gastro symptoms so common with most Celiacs.

In relation to this, I actually GAINED 50 pounds before they diagnosed me. (We realized there was a problem when I was exercising 6 hours a week and still gaining weight). I think it's because I was always hungry, so I just kept eating, and I must have been getting enough of the good stuff that I was absorbing at least some of the food I was eating. Also, my symptoms were present for only about a year before diagnosis so I don't think my intestines were too badly damaged.

So my question is, is there anyone else out there who actually gained weight? My doctor was really confused by the weight gain being related to Celiac, but since going gluten-free, I haven't gained any more weight. Just knowing there are other "Celiac Weirdos" out there would be really great as I start to try to lose this weight...Thanks. :unsure:

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You are not alone...

I guess I'm a weirdo too! Last year, I had major surgery and then mono. Both of these things caused my gluten intolerance to go crazy. I started craving (and eating!) all things with gluten. Since I couldn't exercise for 5 months due to the surgery and mono, I gained 20 lbs. After 8 months of trying to figure out what the pain and D was all about, I realized that my gluten intolerance was back with a vengance. When I finally decided to go gluten and nightshade free, the weight gain (and muscle/joint pain) stopped. I exercise regularly and count calories but the weight just won't come off. So... off to the nutritionist I go. I'm quite happy with her so far and her knowledge about gluten is better than average. Here's hoping that I can get some help with the weight issue.

I have to admit, I was starting to think I was the only one that had actually gained weight after reading all of the posts about people who can't gain a pound.

Turkeybird

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Hands up here to being another weirdo. Like you I was always hungry pre-diagnosis, and it is hard to fight hunger. Like you upon hindsight I think it was because my body was trying to get all the nutrients it could. But now, I am no longer as hungry. I have not put on any extra weight, but I still find it hard to loose weight.

Acutually I think you will be surprised at how many of us were overweight prior to going gluten free. I think it is a myth that you can have coeliac only if you are skinny.

Cathy

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Actually, gaining weight in a celiac is just as common as losing weight, before being diagnosed. Many undiagnosed celiac's, even those who have diarrhea much of the time, can be very overweight. A very overweight person can be undernourished. I was my heaviest, when I was my sickest. I just could not understand why I kept gaining weight when I was so sick. My sister is a dietician, and a celiac, she just told me this past weekend that overweight is just as common as underweight. It also doesn't always have anything to do with being hungry and eating all the time. I ate much less than a lot of people I knew. I just lost 32# in the last 4 months, and for the last 3 yrs, you would be amazed at the food I wasn't eating. So, please do not think you are weird, or anyone else is weird, just because they may be heavy. It's just not always true.


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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Guess we got a group of weirdo's here! Prior to diagnoses I lost 40 or 50 pounds and after going gluten-free gained back 70 or 80.

Always been big but this is too much. Funny thing is my waist is smaller than it was but shirt size is way up.

You are not alone...

I guess I'm a weirdo too! Last year, I had major surgery and then mono. Both of these things caused my gluten intolerance to go crazy. I started craving (and eating!) all things with gluten. Since I couldn't exercise for 5 months due to the surgery and mono, I gained 20 lbs. After 8 months of trying to figure out what the pain and D was all about, I realized that my gluten intolerance was back with a vengance. When I finally decided to go gluten and nightshade free, the weight gain (and muscle/joint pain) stopped. I exercise regularly and count calories but the weight just won't come off. So... off to the nutritionist I go. I'm quite happy with her so far and her knowledge about gluten is better than average. Here's hoping that I can get some help with the weight issue.

I have to admit, I was starting to think I was the only one that had actually gained weight after reading all of the posts about people who can't gain a pound.

Turkeybird


"Ryo tatereba mi ga tatanu"

If we try to serve both sides, we cannot stand our own ground.

Japanese proverb

Celiac.com - Celiac Disease Board Moderator

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Thank God I am not alone. I thought I might be the only one who gained weight with a c=gluten intolerance. I don't know if I have Celiac's, but I do know that I am gluten/lactose/soy intolerant. I have not followed the diet in years, (just started agian this week), but gained 40lbs in 5 months.

Glad to have company on this side of the wieght issue.

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Another weirdo here :D

I was always 20-30 pounds overweight prior to being diagnosed, and I had symptoms for years. Right before I was finally diagnosed, I lost a lot of weight pretty quickly while still eating as I always had.

By the time I went back to the doctor for my 2 month checkup (post dx), I had already gained back 10 pounds.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Another weight gain story here.I have only had symptoms for the last 4 or 5 months....but I cannot remember ever eating so much.I craved sweets so bad.I wanted 3 pieces of bread ...not just one.I ate all the time.I am probably 30 pounds overwieight now...but working on the problem everyday.I eat so different now and I exercise everyday I can.I do find the weight loss is slower than I anticipated...but I'll get there.Oh yea...my Primary Doc called yesterday to say my cholestrol was high..222...so I'll be dropping a few things from my already slim list of things to eat.I consider myself extremely lucky to find out about wheat/gluten intolorance and celiac disease so soon...so I need to quit complaining and thank my lucky stars I have a chance to get better.


Kay

Gluten free since 4/11/08

Positive dietary response

Blood test negative

Endoscopy negative biopsy

but found :" Villous blunting and atrophy" and

"Gastric mucosal abnormality characterized by erythema"

Doctor insisted I need to go gluten free for at least 4 months

Best thing I ever did!

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Wow, thanks so much for the replies already! Yes, it's very frustrating to read about others who can't gain any weight when I'm trying so hard to lose weight...

Does anyone have any work-out/food combos that have worked for them? I usually do about 20 minutes of light cardio a day (power walking), with hand-weight "training" once or twice a week. I'm a grad student at FSU, so I have access to great gym facilities, but I don't have the oodles of time I had as an undergrad, you know? So I've got to really streamline my workout. Also, I read somewhere that it's not actually good to go to the gym hungry, so any recommendations on foods to eat before (bananas or other fruit, perhaps?) would be great.

Thanks so much guys - and yes, at least we've figured out what was making us sick and can now live normal, healthy lives. :)

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One thing I know is a big problem--high fructose corn syrup. It's not good for any of us, and if you read ingredients, you will see it is in so many of our foods. It adds calories and definitely makes you gain weight! It's in yogurt, some fruits, cereal, etc--you think you are buying something good for you, and there it is!! I do not eat anything anymore with corn syrup in it. I also stay away from sugar, except of course, natural sugars. Any fruit I buy, is packed in it's own juice, or fresh. Bananas and grapes are very high in sugars, so when you eat them, don't eat a lot.

My sister also tells me, you have to change your exercise, don't do the same thing everyday. Alternate every other day, your body gets used to the same thing everyday and it becomes normal, so it no longer works, which makes sense. I use my gazelle every other day, some days I just dance to my celiac disease's, or I will take a walk around the neighborhood--whatever I want.

Good luck!


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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You are definitely not alone...I have gained so much weight but my doctor told me that with Celiac Disease weight can go either way...you either lose alot of weight or you gain alot. Of course, I would have to be one of the ones to gain :D

I'm already a bit of an abnormality, as my Celiac symptoms were always strictly skin-related (DH like you wouldn't believe!). I was VERY lucky to not have the gastro symptoms so common with most Celiacs.

In relation to this, I actually GAINED 50 pounds before they diagnosed me. (We realized there was a problem when I was exercising 6 hours a week and still gaining weight). I think it's because I was always hungry, so I just kept eating, and I must have been getting enough of the good stuff that I was absorbing at least some of the food I was eating. Also, my symptoms were present for only about a year before diagnosis so I don't think my intestines were too badly damaged.

So my question is, is there anyone else out there who actually gained weight? My doctor was really confused by the weight gain being related to Celiac, but since going gluten-free, I haven't gained any more weight. Just knowing there are other "Celiac Weirdos" out there would be really great as I start to try to lose this weight...Thanks. :unsure:

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I'm another one who gained weight. The only way I could lose weight was on a very low carb diet which of course was also lower in gluten. But I didn't make the connection.

When I went Gluten-free Casein-free, I didn't have a lot of abdominal symptoms, mainly the big C. After 3 months I also went soy free. I lost some weight right away, but especially lost beginning around the 4-5 month mark, and was eating plenty of carbs that were gluten-free. Breads, pastries, cookies, etc. This would have NEVER happened before, so convinced me I had gained weight due to celiac.

I lost 20-30 pounds and have stabilized. Now I am having to cut carbs to lose further, and could still get down another 15-20 pounds before it would be problematic.

Sherry


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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I haven't been diagnosed yet but am doing great on the gluten-free diet and I just lost 5 lb. in a week... the only thing different is that I'm eating gluten-free... I'm not even counting calories or WWpoints anymore. if you look on most sites that list the symptoms of Celiac disease they will usually say that weight gain is a symptom so you can't be too weird... you just don't have the "classic symptom" of losing weight! before going gluten-free the only time I seemed to lose weight was when I was really sick, vomiting, diarhea and no appetite. then I would lose 1 or 2 lb. but I'd gain it back again as soon as I started feeling better.

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I'm a gainer! I'm 35lbs overweight despite "eating right and exercising like crazy". Just been diagnosed and am waiting for it to rurn around. GL don't worry too much. My Dr's didn't go to Ciliac at first because or the weight gain but it turns our more ppl are "weirdos" than thought before.

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Another weight gain story here.I have only had symptoms for the last 4 or 5 months....but I cannot remember ever eating so much.I craved sweets so bad.I wanted 3 pieces of bread ...not just one.I ate all the time.I am probably 30 pounds overwieight now...but working on the problem everyday.I eat so different now and I exercise everyday I can.I do find the weight loss is slower than I anticipated...but I'll get there.Oh yea...my Primary Doc called yesterday to say my cholestrol was high..222...so I'll be dropping a few things from my already slim list of things to eat.I consider myself extremely lucky to find out about wheat/gluten intolorance and celiac disease so soon...so I need to quit complaining and thank my lucky stars I have a chance to get better.

I gained 30 pounds in the 2 years immediately prior to diagnosis. I was always hungry and did eat 3 slices of bread, three helpings of pasta and was still hungry. I had D daily but was still gaining weight even though I worked out.

After diagnosis, my dietitian said that I gained weight because my body thought it was starving and held on to every calorie and gram of fat and also lowered my metabolism so I would hold onto more.

I have not been able to lose weight, although I am being nice to myself because I think that my body needs to heal. I need to start losing weight now after 16 months. My cholesterol is 275 up from 200 three years ago, before I got so sick, so I need to work on that too.

I am considering dropping all grains and limiting sugar. I am also walking 1.5 hours 3 times a week and riding my bike for 2 hours a week. I need to start lifting weights too to help lose weight and improve my bones, as I was diagnosed with osteopenia last year.

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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I am a brand-new member here, and I'm so glad you posted this!! I am also struggling to lose and have actually gained back 17 lbs after losing 95 on WW. I have learned that there are some others, too, and I had a talk with a nutritionist from a celiac group about it yesterday. We both think it's because gluten was lowering my already low blood sugar, making me constantly hungry. I'm finding that since I have made an effort to go gluten-free, I'm not nearly as hungry as quickly and more satisfied after I eat. Maybe you're like me?

LIZARD, learning all the time :rolleyes:

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Another wierdo here :P I also gained alot of weight in a short period of time despite working out 4 x week. I could never get enough to eat and craved all the gluten laden foods such as cheese nips! My fiance would joke about me always being hungry. Now that I am on gluten-free diet I am not hungry constantly but still have excess weight. I am again trying to excercise regularly, even though the muscle/joint pain I have makes it very difficult!! Have recently cut out all sugar and dairy may be next!! Sometimes the celiac belly makes me feel 50 lbs overwieght!! :angry:


Self dx celiac disease

Gluten free since July 2007

Clinical dx celiac disease November 2007

Self-dx Lyme disease May 2008

Lyme confirmed positive Western Blot May 2008

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Another wierdo here :P I also gained alot of weight in a short period of time despite working out 4 x week. I could never get enough to eat and craved all the gluten laden foods such as cheese nips! My fiance would joke about me always being hungry. Now that I am on gluten-free diet I am not hungry constantly but still have excess weight. I am again trying to excercise regularly, even though the muscle/joint pain I have makes it very difficult!! Have recently cut out all sugar and dairy may be next!! Sometimes the celiac belly makes me feel 50 lbs overwieght!! :angry:

It's so nice not to be the only one. My celiac belly (or just my fat) makes me feel so embarrassed. I am working on not feeling bad because I'm overweight. Walking or riding my bike daily helps me feel energetic. I've started the grain-free diet and I feel more in control, although I'm still hungry all the time. I'm filling up on leafy greens, and using spaghetti squash to replace the rice and noodles.

Susieg, did your joint pain get any better gluten-free? Have you tried nightshade free?

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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I just wanted to add my story as well. I walk about 50 miles a week- and kept gaining weight. The doc's would all tell me to lose weight- well, how- I can't exercise any more than I am!

I also have dh- finally dx'd after 18 months with very few gastro symptoms.

I have been gluten-free for about a month, the dh is healing, bit by bit and every once in awhile I have a small flare. Can't do dapsone.

Since going gluten-free, I have lost 16 lbs. and have so much more energy.

Good luck!

Jeannine

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Jeannine, can you tell us what you did to lose your 16 lbs? Was it simply not eating gluten anymore, or did you cut out all carbs for awhile? I too am trying not to feel bad - I'm overweight from disease, not just eating lots of junk food, but it's still hard. I don't really eat sugar - maybe a handful of M&Ms in the afternoon, or a small piece of dark chocolate to fuel me through to dinner. I love dairy, and have made the necessary adjustments for a low-fat lifestyle (i.e., skim milk, half-the-fat cheese, non-fat yoghurt, etc). I'm not good at depriving myself of anything, which is why I watch my portions very carefully, but if I have to go off rice or corn for a bit just to lose the weight, so be it!

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Does anyone here still crave certain foods like: sweets, peanut butter, almonds after you went on a gluten-free diet? Before I was diagnosed with Celiac I dropped 15 lbs and now that I am absorbing again I have put the weight back on plus more. Some of these posts are a bit confusing, not sure if some of you had weight gain before being diagnosed or after?

And does anyone have a problem chewing gum? Cause I have the belly thing going on too and not sure what to do about it.


Gluten Free going on 5 years and counting!

gluten-free is a life change and not a diet.

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Guest digmom1014

Gained here too!

Just spoke with a woman at a party who thinks she may have celiac but, is gaining weight so, her Dr. doesn't think so. I told her to go to a new Dr. and get tested!

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I gained 53 pounds before being diagnosed. When I'm glutened, I can easily gain 4 or 5 pounds in a day or two. It's so frustrating! My dr. told me I had the non-classical symptoms that most people think of when they hear celiac or gluten intolerance but that these symptoms are actually as common or more so than people realize. My tummy is huge right now after a slip up earlier today. I feel like a balloon belly!

Ann


hypothyroid

hypoglycemic (diagnosed 1997 but symptomatic since grade school)

fibromyalgia

rheumatoid arthritis (diagnosed January 2005)

peanut allergy

restarting gluten-free January 20, 2013

elevated liver enzymes + symptoms indicated celiac January 31, 2013. Dr. didn't want to run further tests due to other health complications

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I was reading something from the Celiac Disease Center the other day and it listed the symptoms of celiac disease. One of the symptoms were: severe weight loss or gain! I thought, well, it's about time they included those of us who gain a substantial amount of weight. I mean, how many overweight people are told by a doctor, "You don't look like a celiac!", simply because they are not underweight?

So many of you keep stating you were craving sweets--I never did that. I kept gaining and I was so sick. I wasn't overeating, I do admit, I was not eating properly. Sometimes, I only ate once a day! Sometimes that was the only way I could get through a day, by not eating until the end of the day, after I did whatever I had to do. I'm sure many of you can relate to that!

When I went gluten-free, I eventually lost 60#. Then the other intolerance's started rearing their ugly heads and I started gaining again. I gained 40# back, my metabolism shut down, and it didn't matter what I tried, nothing made me lose, not walking, not the gazelle, not the ab lounge--NOTHING. A doctor had me eating 100 calories every 2 hours, up to 1200 calories a day, which was a stretch for me, and I didn't lose, nor did it trick my metabolism into working. I was glutened by a med in January this year, which made me sick for over 2 months. Miraclulously, my metabolism kicked back in, and now, I have lost those 40#. As I stated though, I no longer eat anything with high fructose corn syrup, or any corn syrup for that matter, I use no sugar, other than natural sugars, I eat no grains because I am intolerant of them. I also went decaf in this time, which has nothing to do with the weight, but I also am trying to get heathy. I use my gazelle every other day, or every 3rd day. I know I stated before,

some days I just dance to my celiac disease's
I think my brain freeze was at work, what I meant was, I dance to my celiac disease's :lol:, soon, I will take walks along the beach, which is a great love of mine!

Good luck to all of you!


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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