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Hello. I am new here. I go in in a couple of days for my biopsies to confirm that I truly have celiac disease. I have been violently ill since July and the dr.s finally took blood tests to check for celiac disease. To be perfecty honest, I am darn happy that I can actually call what I have a name! I thought my sickness was all in my head...dr's were just chalking it up to be IBS. My question might seem silly...but I have battled a weight problem my whole life. (always 50-70 lbs overweight usually) Anyways...I have dropped 35 lbs effortlessly since July...now I am only about 30 lbs overweight. Though I have been sicker than a dog...the weight loss has been a nice side efect. I still have to consume gluten right now...until my biopsy...and I am so looking forward to being gluten-free. I cannot wait to feel better. I know a significant diet change is in my real near future...and thank goodness, I have a reason to eat healthier now.
So that leads to my question. Are most celiac disease people thinner? Besides malabsorbtion problems and diet change...it would make sense that they are. I guess I am trying to stay positive and use this as a tool to being healthier AND thinner!!...finally. I am fully aware about the seriousness of this disease and respect fully the changes I need to make...I am just hoping my silver lining through this all is getting to my goal weight.
Any replies would be greatly appreciated! Thanks.
Are celiac disease People Usually Thinner?
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#2
tarnalberry 
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Posted 05 November 2006 - 12:27 PM
A large minority of all who are celiac (1 in 133 in the general population) are likely to be underweight or thinner, but it's such an amorphous disease, symptomatically, that "usually" doesn't mean much. 
Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA
#3
gf4life
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Posted 05 November 2006 - 01:58 PM
Since most people don't know they actually have Celiac disease it is really hard to say. many are underweight by the time they get diagnosed, but there are probably about the same number of overweight Celiacs out there as there are underweight and normal weight Celiacs.
How long do you have to wait for your biopsy? Although you are losing weight it isn't exactly the best way to do it, since your body is being deprived of nutrients. I would plan to go on the diet the same day as the biopsy.
How long do you have to wait for your biopsy? Although you are losing weight it isn't exactly the best way to do it, since your body is being deprived of nutrients. I would plan to go on the diet the same day as the biopsy.
~West Coast-Central California~
Mariann, gluten intolerant and mother of 3 gluten intolerant children
Mariann, gluten intolerant and mother of 3 gluten intolerant children
#4
darlindeb25
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Posted 05 November 2006 - 02:37 PM
I think the numbers run close to each other, even steven!!!! I am one of the celiacs that gain weight when the intolerances are out of control. Our bodies react differently to gluten. I was sick everyday, and yet, I gained weight.
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!
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!
#5
Ursa Major
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Posted 05 November 2006 - 03:42 PM
Hi, and welcome to this board.
As my naturopathic doctor says, weight gain can be a sign of malnutrition just as much as being underweight. Because when you can't absorb nutrients, your body will scream 'hunger!' all the time, and you eat a lot. Your body will hang onto every little bit it can and turn it into fat, because it thinks it's starving (and actually, it is). And actually, even if you eat very little, that will happen. Because the less you eat, the more your metabolism slows down, and the more you gain. You can't win when that happens.
So, it can go either way. I found that I have adrenal burnout, and an underactive thyroid as well, which will make you sluggish and without energy to exercise, which likely has also something to do with the weight gain.
My weight was steadily going up from the time I was pregnant with my first child, no matter how little I ate. It was extremely frustrating and depressing, especially because nobody believed me that I wasn't eating too much.
Just don't expect your weight loss to be permanent, at least at the beginning. When you go gluten-free, and as your intestines heal, you'll start to be able to absorb nutrients again. You'll likely initially gain back some weight. Don't get upset when that happens. Eventually you'll likely slowly but steadily lose weight (unless you decide to eat a lot of gluten-free breads, cookies, pasta etc., which are very fattening).
As my naturopathic doctor says, weight gain can be a sign of malnutrition just as much as being underweight. Because when you can't absorb nutrients, your body will scream 'hunger!' all the time, and you eat a lot. Your body will hang onto every little bit it can and turn it into fat, because it thinks it's starving (and actually, it is). And actually, even if you eat very little, that will happen. Because the less you eat, the more your metabolism slows down, and the more you gain. You can't win when that happens.
So, it can go either way. I found that I have adrenal burnout, and an underactive thyroid as well, which will make you sluggish and without energy to exercise, which likely has also something to do with the weight gain.
My weight was steadily going up from the time I was pregnant with my first child, no matter how little I ate. It was extremely frustrating and depressing, especially because nobody believed me that I wasn't eating too much.
Just don't expect your weight loss to be permanent, at least at the beginning. When you go gluten-free, and as your intestines heal, you'll start to be able to absorb nutrients again. You'll likely initially gain back some weight. Don't get upset when that happens. Eventually you'll likely slowly but steadily lose weight (unless you decide to eat a lot of gluten-free breads, cookies, pasta etc., which are very fattening).
I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.
Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.
Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma
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Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.
Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma
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#6 Guest_nini_*
Posted 05 November 2006 - 03:50 PM
Celiac really manifests itself in many ways, the classic presentation has been the skinny celiac, but I am also one that gained a ton of weight before my dx and I hardly ate at all, I was always trying to lose weight and couldnt. Since going on the gluten-free diet I've lost 110 pounds and am still going.
Weight issues are always going to be there, wether you are too skinny or too fat or just think you are, the most important thing is to get healthy and then worry about your weight.
Weight issues are always going to be there, wether you are too skinny or too fat or just think you are, the most important thing is to get healthy and then worry about your weight.
#7
dyankeetoo
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Posted 05 November 2006 - 04:51 PM
Hi...
Don't have a diagnosis yet, but I have some odd deficiencies, and am trying for a DH diagnosis first. I've been gluten free for three months, going on four, and I've lost 20 lbs without ever missing a meal. For me, the odd thing is that I began to gain weight, FAST, after the birth of my 21 yo. I had been between 118 and 128 lbs until my 38th year. I could gain or lose 7 lbs in a day, so I knew it was waterweight. Edema in my ankles and feet was so gross I went up two shoe sizes, and still couldn't stand to wear anything but slippers. Couldn't tolerate water pills (I fainted into my bathroom sink). I gained weight until I hit 180 pounds in three short years. I HATE the way doctors treat you...it didn't matter what you said, it was what they saw; and they were so intolerant. At one point I fasted for three days and gained 5 lbs. Of course, I wasn't believed.
Three weeks into gluten free and I could see my ankles again. I lost 10 pounds the first month. Now my rings slip off my fingers and....I can hear again. No more ringing in my ears and the room spinning around. My feet have stopped screaming, wonder of wonders, though I doubt I'll ever be able to wear fashion shoes again. So for me, it was the gluten that turned the key of the edema, and I don't miss the constant stomach upsets, either. (or the emergency trips to the jon, either). I can see my eyes again, and the constant toothache from my sinusitis is gone. I knew, in my gut, it was the edema in my face that was causing all my sinus problems, but I just couldn't get docs to see it.
Let me tell you, I wish you well. I definitely feel better, and I look better, too. I didn't wait for a diagnois when I began to read about celiac...all of a sudden all the pieces fit. I've had blood transfusions for anemia in fact.
Best,
Laurie
Don't have a diagnosis yet, but I have some odd deficiencies, and am trying for a DH diagnosis first. I've been gluten free for three months, going on four, and I've lost 20 lbs without ever missing a meal. For me, the odd thing is that I began to gain weight, FAST, after the birth of my 21 yo. I had been between 118 and 128 lbs until my 38th year. I could gain or lose 7 lbs in a day, so I knew it was waterweight. Edema in my ankles and feet was so gross I went up two shoe sizes, and still couldn't stand to wear anything but slippers. Couldn't tolerate water pills (I fainted into my bathroom sink). I gained weight until I hit 180 pounds in three short years. I HATE the way doctors treat you...it didn't matter what you said, it was what they saw; and they were so intolerant. At one point I fasted for three days and gained 5 lbs. Of course, I wasn't believed.
Three weeks into gluten free and I could see my ankles again. I lost 10 pounds the first month. Now my rings slip off my fingers and....I can hear again. No more ringing in my ears and the room spinning around. My feet have stopped screaming, wonder of wonders, though I doubt I'll ever be able to wear fashion shoes again. So for me, it was the gluten that turned the key of the edema, and I don't miss the constant stomach upsets, either. (or the emergency trips to the jon, either). I can see my eyes again, and the constant toothache from my sinusitis is gone. I knew, in my gut, it was the edema in my face that was causing all my sinus problems, but I just couldn't get docs to see it.
Let me tell you, I wish you well. I definitely feel better, and I look better, too. I didn't wait for a diagnois when I began to read about celiac...all of a sudden all the pieces fit. I've had blood transfusions for anemia in fact.
Best,
Laurie
#8
par18
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Posted 06 November 2006 - 04:22 AM
kristiney, on Nov 5 2006, 03:18 PM, said:
Hello. I am new here. I go in in a couple of days for my biopsies to confirm that I truly have celiac disease. I have been violently ill since July and the dr.s finally took blood tests to check for celiac disease. To be perfecty honest, I am darn happy that I can actually call what I have a name! I thought my sickness was all in my head...dr's were just chalking it up to be IBS. My question might seem silly...but I have battled a weight problem my whole life. (always 50-70 lbs overweight usually) Anyways...I have dropped 35 lbs effortlessly since July...now I am only about 30 lbs overweight. Though I have been sicker than a dog...the weight loss has been a nice side efect. I still have to consume gluten right now...until my biopsy...and I am so looking forward to being gluten-free. I cannot wait to feel better. I know a significant diet change is in my real near future...and thank goodness, I have a reason to eat healthier now.
So that leads to my question. Are most celiac disease people thinner? Besides malabsorbtion problems and diet change...it would make sense that they are. I guess I am trying to stay positive and use this as a tool to being healthier AND thinner!!...finally. I am fully aware about the seriousness of this disease and respect fully the changes I need to make...I am just hoping my silver lining through this all is getting to my goal weight.
Any replies would be greatly appreciated! Thanks.
So that leads to my question. Are most celiac disease people thinner? Besides malabsorbtion problems and diet change...it would make sense that they are. I guess I am trying to stay positive and use this as a tool to being healthier AND thinner!!...finally. I am fully aware about the seriousness of this disease and respect fully the changes I need to make...I am just hoping my silver lining through this all is getting to my goal weight.
Any replies would be greatly appreciated! Thanks.
I don't think it is a underweight/overweight situation as much as a "losing" weight issue. I was thin and lost weight and others are overweight and also lose. Some of the people who are overweight are not that "alarmed" as the thinner people in the beginning for the reason you mentioned. It is only when the weight loss continues that everyone starts to feel that something is really wrong. Personally I was never able to really "gain" any weight until I went gluten free. That has been my nice side effect. I am at the first healthy weight I can ever recall. Maintaining it becasue I am active has not been a problem.
Tom
#9
Saz
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Posted 06 November 2006 - 07:25 AM
I was diagnosed when I was 6 and have always been small, even four years ago when I started to eat tons of gluten again I still remained small. Like others have said it can go both ways. I was told that in some people if you are cheating it can make it hard for you to gain weight, but also I think it can be harder to gain/losse weght even if you are following the diet.
I actaully don't think that my weight issues are realted to celiac, as most of the females in family are small.
Good luck to you and I hope you start to feel better soon.
I actaully don't think that my weight issues are realted to celiac, as most of the females in family are small.
Good luck to you and I hope you start to feel better soon.
#10
mouse
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Posted 06 November 2006 - 07:39 AM
I fought weight issues most of my life. Until we retired 5 1/2 years ago, I had a gym in my basement. I worked out 5 days a week and used the treadmill sometimes twice in one day (for weeks at a time). I watched my calories except once every 3 months when I would go and buy a pound of Fanny May creams and eat the whole box at once LOL. I was lucky to lose 5 pounds in a month even though I used the treadmill so much. When a doctor told me 30 years ago that I needed to be 135 pounds, I thought he was nuts and told him that if I reached that weight I would be dead.
Almost proved him right. Lost 53 pounds and was so close to dying before my diagnosis. I never gained any of the lost weight back. I can eat normal now and I don't count calories.
My GP has diagnosed overweight and thin people with this disease. I think the weight issue runs the full spectrum.
Almost proved him right. Lost 53 pounds and was so close to dying before my diagnosis. I never gained any of the lost weight back. I can eat normal now and I don't count calories.
My GP has diagnosed overweight and thin people with this disease. I think the weight issue runs the full spectrum.
"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler
Diag. Celiac Disease by positive blood test 2/03/2004
Allergies - corn, soy, casein, egg whites and wheat
Morphia Scleroderma
Osteoarthritis
Hypothyroid and Hperthyroid
Essential Tremors
Asthma
Migraines
Fibromyalgia - diag. in 1978 when they called it Fibrositis
PAD Peripheral Artery Disease
Angina and Atrial Fibrillation
Gluten Ataxia
Vitiligo
Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.
Ocular Myastenia Gravis
Diag. Celiac Disease by positive blood test 2/03/2004
Allergies - corn, soy, casein, egg whites and wheat
Morphia Scleroderma
Osteoarthritis
Hypothyroid and Hperthyroid
Essential Tremors
Asthma
Migraines
Fibromyalgia - diag. in 1978 when they called it Fibrositis
PAD Peripheral Artery Disease
Angina and Atrial Fibrillation
Gluten Ataxia
Vitiligo
Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.
Ocular Myastenia Gravis
#11
emcmaster
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Posted 06 November 2006 - 08:57 AM
I gained a lot of weight before going gluten-free. I used to do triathlons and have always been very active. I always count my calories and have been a health nut for most of my adult life. Still, I was gaining weight like crazy - I gained 30 lbs. in 4 months. Fortunately, I lost it all and then some after going gluten-free.
ELIZABETH
gluten-free (04.17.2006)
corn-free (03.27.2007)
xanthan gum-free
gluten-free (04.17.2006)
corn-free (03.27.2007)
xanthan gum-free
#12
kristiney
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Posted 06 November 2006 - 12:05 PM
emcmaster, on Nov 6 2006, 08:57 AM, said:
I gained a lot of weight before going gluten-free. I used to do triathlons and have always been very active. I always count my calories and have been a health nut for most of my adult life. Still, I was gaining weight like crazy - I gained 30 lbs. in 4 months. Fortunately, I lost it all and then some after going gluten-free.
So you actually gained weight from eating gluten before your DX? Did you have a weight problem before symptoms started? I have always had weight problems...so I knew when I started losing weight absolutely effortlessly, eating whatever...something was up. I have been tested 4 times since July for Giardia (intestinal parasite)...all test coming back negative. Finally, I just broke down with my doctors and told her I couldn't take any more. I have been violently ill for three months now!! I do not lose weight effortlessly. So FINALLY she did more labwork, this time a blood test.
Today is my last day to eat gluten (Dr's orders...have to have gluten in my system for the biopsy to come back positive...biopsy in 2 days)...so I am eating my last Personal Pan Pizza from Pizza Hut. I am not a big pizza fan but I knew this was going to be the last time I ever get it.
I am fiercely afraid that the weigt is just going to pack back on with everything I have read. "Gluten free food is very fattening..."
Here I have struggled my whole life trying not to be obsessed with food, and I am now diagnosed with a disease that only allows for obsession of "gluten free" food to stay alive. Jeesh! God sure plays funny tricks on us. This time, not so funny.
Take care.
Kristine
#13
Heather22
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Posted 06 November 2006 - 12:14 PM
Hi Kristine,
Good to hear that you will finally be getting some answer. Having Celiac is definitely not the end of the world. Everyone has different experiences. Keep in mind that you do not NEED to eat heavy gluten free items. If you are trying to control your weight, avoid all the gluten free bagels, pasta and muffins and try to eat more naturally gluten free foods.
You can make it as hard or easy as you want. Have a positive attitude and focus on getting healthy.
Welcome to the Celiac community.
Best wishes,
Heather : )
Good to hear that you will finally be getting some answer. Having Celiac is definitely not the end of the world. Everyone has different experiences. Keep in mind that you do not NEED to eat heavy gluten free items. If you are trying to control your weight, avoid all the gluten free bagels, pasta and muffins and try to eat more naturally gluten free foods.
You can make it as hard or easy as you want. Have a positive attitude and focus on getting healthy.
Welcome to the Celiac community.
Best wishes,
Heather : )
kristiney, on Nov 6 2006, 03:05 PM, said:
So you actually gained weight from eating gluten before your DX? Did you have a weight problem before symptoms started? I have always had weight problems...so I knew when I started losing weight absolutely effortlessly, eating whatever...something was up. I have been tested 4 times since July for Giardia (intestinal parasite)...all test coming back negative. Finally, I just broke down with my doctors and told her I couldn't take any more. I have been violently ill for three months now!! I do not lose weight effortlessly. So FINALLY she did more labwork, this time a blood test.
Today is my last day to eat gluten (Dr's orders...have to have gluten in my system for the biopsy to come back positive...biopsy in 2 days)...so I am eating my last Personal Pan Pizza from Pizza Hut. I am not a big pizza fan but I knew this was going to be the last time I ever get it.
I am fiercely afraid that the weigt is just going to pack back on with everything I have read. "Gluten free food is very fattening..."
Here I have struggled my whole life trying not to be obsessed with food, and I am now diagnosed with a disease that only allows for obsession of "gluten free" food to stay alive. Jeesh! God sure plays funny tricks on us. This time, not so funny.
Take care.
Kristine
Today is my last day to eat gluten (Dr's orders...have to have gluten in my system for the biopsy to come back positive...biopsy in 2 days)...so I am eating my last Personal Pan Pizza from Pizza Hut. I am not a big pizza fan but I knew this was going to be the last time I ever get it.
I am fiercely afraid that the weigt is just going to pack back on with everything I have read. "Gluten free food is very fattening..."
Here I have struggled my whole life trying not to be obsessed with food, and I am now diagnosed with a disease that only allows for obsession of "gluten free" food to stay alive. Jeesh! God sure plays funny tricks on us. This time, not so funny.
Take care.
Kristine
#14
dragonmom
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Posted 12 November 2006 - 08:19 PM
I have always been heavy, then suddenly lost 60 pounds for no apparent reason- Celiac Disease. Since going gluten free I've managed to gain everything back even though I've tried to keep it off. 
I'm thinking my body is just trying not to starve to death.......or I"m an incredibly good cook.
I'm thinking my body is just trying not to starve to death.......or I"m an incredibly good cook.
Brenda Diagnosed Celiac 2005 Woodville, Massachusetts
#15 Guest_cassidy_*
Posted 13 November 2006 - 04:49 AM
I have always been thin except for last year before I was diagnosed. My stomach hurt all the time and I kept thinking maybe it was hungry so I overate trying to make it feel better. Once I went gluten-free I lost a ton of weight and was underweight until I got pregnant.
My mother has always been a bit overweight and has constantly struggled with it. I think she has a thyroid issue as well and that is what is causing her problem. I think her sister has celiac as well and she is extremely obese and will not even listen to us about getting tested.
So, I don't think there is a celiac body type especially if you have complications from the diease that further confuse things.
My mother has always been a bit overweight and has constantly struggled with it. I think she has a thyroid issue as well and that is what is causing her problem. I think her sister has celiac as well and she is extremely obese and will not even listen to us about getting tested.
So, I don't think there is a celiac body type especially if you have complications from the diease that further confuse things.
