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deedub

Human Physical Charateristics

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If I have celiac ,my brothers and sisters may also have it if it's genetic. I am the first one in my family ( the youngest though ) to have gone through the process of determining that I have it, no one else has experienced any substantial symptoms to prompt them to go to the doctor. Yes, I know, there can be no symptoms. My question to you all with siblings is do you share similar physical traits ie height, weight, build ? I am the tallest in my family ( 6'-2") and also lean ( 190lbs ) while my sisters are tall, (5'-7 - 5'-8" ) for girls and my brother is a little shorter, (5'-9" )and they are all a little on the meatier side, not obese, but not lean like me. I consider myself NO more active than them, but our body types are so different. Is it not odd that they may have celiac, but have not remained on the leaner side of things ? I have a big appetite, and gain slowly. They on the other hand, have to be careful.

Is it possible that I'm being starved a little while being celiac ? What's your story of weight on gluten, off gluten, and how do you stack up against your family ?

Thanks

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Contrary to the old school way of thinking diagnostically, celiacs can just as easily be obese as rail-thin. Just the other day I met a lady who is very overweight and going in for the celiac blood panel. She's certain that she's gluten intolerant.


Emily

diagnosed type one diabetic 1973

diagnosed celiac winter 2005

diagnosed hypothyroid spring 2006

But healthy and happy! 253.gif

11 year-old Son had negative blood panel, but went on gluten-free diet of his own volition to see if his concentration would improve, his temper abate, and his energy level would increase. Miraculous response!

The great are great only because we are on our knees.

--Pierre Joseph Proudhon (1809-1865)

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Yeah, I'm over weight, and I gained while having untreated celiac AND after going gluten free. Luck, luck me :P


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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I'm the only one in my family that has celiac, we all look the same, heavy. I lost weight while eating gluten, since going gluten free my body has "glomed " on to every single calorie that has come it's way, my body didn't like starving to death and will not let me repeat the process. :blink:


Brenda Diagnosed Celiac 2005 Woodville, Massachusetts

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Deedub.

I am the only one diagnosed in my family. Just over a year now.

I am about the shortest at 5'3" My sisters measure between 5'6" and 5'3". My tallest brother is about 6 foot, but the others are from 5'5" up. So we are all of a muchness. My mother is quite short and my dad is not overly tall. My four sons are all 6' except for the oldest who is only 5'7" So I have bred a bit of height into the clan.

I would say I am overweight. On top of that I weigh the heaviest out of my three sisters. We do tend to be a bit pudgy, but none of us are obese. I seemed to be the only one who had problems with my appetite, it is not so bad now, as I don't feel I am constantly starving. But I am finding it hard to loose weight. I am sure a lot of people on here will emphasise that being leaner is not a pre-requisite of having problems with gluten.

Cathy

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I was the first in my family to get the diagnosis. My mother most likely had it and we had similar body types later in our adult lives. When I was 15, I was 5'7" tall and weighed 125# ! Let's just say now it's a different story. I have worked to lose just over 20# this past year and am still in the upper end of a decent BMI. My older sister used to be larger than me and 2" shorter, but now she is underweight and having "glutenacious" symptoms, but no one in East TN can figure her medical case. Once she was serology positive(good enough for me) ,but biopsy negative. She prefers to stick to her beer and bread and keeps getting smaller and smaller. My younger brother has always been lean and tall 6'3" and has symptoms, but is not particularly eager to push for a diagnosis. My father is 6'1" tall, now lean after being overweight and is on his third cancer...one being colon. He has been blood tested in East TN and was told he didn't have it....in spite of iron deficiency of unknown cause!!! I think the pathologists in East TN need a primer course!!! My mom died of breast cancer when she was 60, and multiple other relatives have RA and multiple cancers.

So! The question was is there a body type.....and for us,,,,,it changed with our ages and various levels of medical conditions.


Iron deficiency without anemia, unexplained weight loss 2/2003

Positive celiac biopsy 4/2003

Autoimmune thyroiditis 8/2005

Gluten Free Since 2003

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If I have celiac ,my brothers and sisters may also have it if it's genetic. I am the first one in my family ( the youngest though ) to have gone through the process of determining that I have it, no one else has experienced any substantial symptoms to prompt them to go to the doctor. Yes, I know, there can be no symptoms. My question to you all with siblings is do you share similar physical traits ie height, weight, build ? I am the tallest in my family ( 6'-2") and also lean ( 190lbs ) while my sisters are tall, (5'-7 - 5'-8" ) for girls and my brother is a little shorter, (5'-9" )and they are all a little on the meatier side, not obese, but not lean like me. I consider myself NO more active than them, but our body types are so different. Is it not odd that they may have celiac, but have not remained on the leaner side of things ? I have a big appetite, and gain slowly. They on the other hand, have to be careful.

Is it possible that I'm being starved a little while being celiac ? What's your story of weight on gluten, off gluten, and how do you stack up against your family ?

Thanks

I am 5' 1/2" and 2 years ago when I think the brunt of it started I went from 120 up to 153!!! My doc's blamed everything on age (37 at the time), hormones...

My Celiac doc told me I was one of his obese Celiacs and that he is seeing more and more obese celiacs. I am now 110, thank you weight watchers and not eating gluten. Sept. 2005- March 2006 I slept 20+ hours. I would have just slept through but my husband would wake me to eat and then back to bed!!! So I am sure that helped with my weight gain.

My sister denied symptoms and I bugged her for 10 months to get checked. Well, she waited until her Physical and she has full blown celiac disease. All her labs were >100 and totally flattened villi and Vit. D, B, deficiency, anemia, and osteopenia; she sees the doc in April and she'll find out then if he will order the gene test.

As for the rest of my family it has been "H---" to get them in or they say they tried but doc refused...which the doc was reluctant still with my Mom although she has 2 children with it.

Good luck - As I kept telling my sis "It's only a blood test." which my sis used when people refused or did not respond when she told them now she was positive for celiac disease.

Take care,

Jacqui


IBS 1994

Endometriosis

Hashimoto's auto immune disease

Diverticulosis

Celiac disease April 2006 - neuro symptoms I am assuming from celiac disease

HLA DQ 2 (celiac disease) and HLA DQ 6 (GS) either way my parents made sure I had something!

Insomnia

Hyperflexibility

Daughter 6 y/o (5 at diagnosis) celiac disease via labs (all >100) and flattened biopsy. NO symptoms!!

Daughter 8 y/o with BM ="C" since birth and breast fed, osteopenia, SEVERE eczema up to 5 y/o, now on and off (-) via labs and biopsy. HLA DQ 2 and HLA DQ 8! and possibly ADHD.

Son 3 y/o also HLADQ2 AND DQ 8! Negative panel

Husband MEXICAN and he has DQ 8! His family refuses all and anything with celiac disease, same with his PCP!

"What doesn't kill us makes us stronger..." Right? I think that's the saying.

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I actually discovered my problem with glutens as a result of trying to lose weight. I have a slow metabolism to begin with and was overweight all my life (5'8", 215 lbs) until I tried the Atkins diet. I found that I lost weight as long as I stayed truly carb, and I realize now, gluten free, but stopped losing when I had whole wheat stuff (which was ok with Atkins because of the fiber).

2 of my sisters and mother also suspect they are at the very least gluten intolerant and they experienced the same thing. Once gluten free, I was able to lose weight and keep it off more easily. Anyway, I still work hard to keep the weight off, but find it impossible when I accidentally ingest gluten... I know metabolism plays a big part in the whole weight issue, but gluten really does as well-at least in some cases...

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I actually discovered my problem with glutens as a result of trying to lose weight. I have a slow metabolism to begin with and was overweight all my life (5'8", 215 lbs) until I tried the Atkins diet. I found that I lost weight as long as I stayed truly carb, and I realize now, gluten free, but stopped losing when I had whole wheat stuff (which was ok with Atkins because of the fiber).

2 of my sisters and mother also suspect they are at the very least gluten intolerant and they experienced the same thing. Once gluten free, I was able to lose weight and keep it off more easily. Anyway, I still work hard to keep the weight off, but find it impossible when I accidentally ingest gluten... I know metabolism plays a big part in the whole weight issue, but gluten really does as well-at least in some cases...

My average wgt. was always for ~25 yrs. b/t 118-121lbs. and then like I said 2 years ago I told my doc something is wrong. I tried the Atkins diet and did not lose an ounce. I stopped drinking regular Coke, which I drank tons of and I did not lose an ounce. My doc blamed metabolism, but I have Hashimoto's thyroid disease and my endocrinologist keeps my TSH ~1.25. All my labs have been OK except it took a few years to find the right dose. My endo. thinks it took awhile b/c I wasn't absorbing my Levoxyl. I had never put a lot into exercising - PLEASE people of the forum, DON'T strike me down. I know it is so important to exercise and I have no excuse.

Now my sister has weighed less than me for a long time. She only put on the expected weight for pregnancy, and fit into her old clothes leaving the hospital...but not me I put on 65lbs, 65lbs., and then 75lbs.. (No my OB was not concernered and I have no idea why she was not.) Now that she has gone gluten-free with her dx of celiac disease she has gained weight, whereas I have lost. And her thyroid is perfect. So I don't know....

Jacqui


IBS 1994

Endometriosis

Hashimoto's auto immune disease

Diverticulosis

Celiac disease April 2006 - neuro symptoms I am assuming from celiac disease

HLA DQ 2 (celiac disease) and HLA DQ 6 (GS) either way my parents made sure I had something!

Insomnia

Hyperflexibility

Daughter 6 y/o (5 at diagnosis) celiac disease via labs (all >100) and flattened biopsy. NO symptoms!!

Daughter 8 y/o with BM ="C" since birth and breast fed, osteopenia, SEVERE eczema up to 5 y/o, now on and off (-) via labs and biopsy. HLA DQ 2 and HLA DQ 8! and possibly ADHD.

Son 3 y/o also HLADQ2 AND DQ 8! Negative panel

Husband MEXICAN and he has DQ 8! His family refuses all and anything with celiac disease, same with his PCP!

"What doesn't kill us makes us stronger..." Right? I think that's the saying.

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My sister, our dad, and I are all celiac and all different. She is 5'3 with a completely different body build than I, I am 5'5 with big bones, where she has a much smaller frame--my feet are bigger, my hands are bigger, yet our legs are the same length. Now dad used to be 6' tall and weigh 270#--before going gluten free he was down to 130# and looked like "death warmed over". He is slowly gaining some weight back, last I knew he was at 160#. He will be 72 next month and celiac disease has done a real number on him.

My brother is 6'3 and at least 280# and truly does not believe there is any such thing as celiac disease. I have a 6'3 son who wants to be tested and the doctor tells him it is not necessary at this time. :angry: What kind of an answer is that!!!!! Another son had the blood work done and of course, it was negative. It's hard to convince them to try gluten free without proof. I tell them, give a month and see if you do not feel better, they haven't given in yet.


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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My sister, our dad, and I are all celiac and all different. She is 5'3 with a completely different body build than I, I am 5'5 with big bones, where she has a much smaller frame--my feet are bigger, my hands are bigger, yet our legs are the same length. Now dad used to be 6' tall and weigh 270#--before going gluten free he was down to 130# and looked like "death warmed over". He is slowly gaining some weight back, last I knew he was at 160#. He will be 72 next month and celiac disease has done a real number on him.

My brother is 6'3 and at least 280# and truly does not believe there is any such thing as celiac disease. I have a 6'3 son who wants to be tested and the doctor tells him it is not necessary at this time. :angry: What kind of an answer is that!!!!! Another son had the blood work done and of course, it was negative. It's hard to convince them to try gluten free without proof. I tell them, give a month and see if you do not feel better, they haven't given in yet.

Boy do I know where you are coming from in regards to being tested. My Celaic doc ordered the gene test and a second full panel after my first visit! Then my daughter who tested (-) for celiac, but has many symptoms and has a Pedi GI for BM issues (megacolon), this doc also ordered a second panel and the genes, plus did an EGD! Madeline is DQ2 and DQ8, which means she recieved the 8 from her Mexican father! So celiac disease truley knows no boundaries... Once we heard this Robert wanted to to have the HLA DQ testing and his doc accused him of asking him (the doc) to practice bad medicine!! My husband was livid. The doc said "you don't have symptoms, so you don't need it. Many of the sx's for celiac disease also go with colon cancer. Do you want me to do a colonoscopy??"

Bet your booty we are changing my husbands doc!!!

I also called Hannah's GI (who is partners with Madeline's GI, so silly me assumed that he would easily order the gene test) and he said we know she has celiac disease by labs and biopsy, so why do it? Also, it costs a $1,000.00."... Well, you know what our insurance has already covered it 2x even for one that has tested (-) on the panel.

Does anyone know if I should try to call my insurance or will that make matters worse?

Their Pedi had no problem ordering it in the beginning, but she is not that familiar with the tests so she ordered the wrong gene test. I guess I will try her first and wait to hear from the forum.

I feel like Madeline will no matter what, pass the gene on to her kids and I feel Hannah should know if she will definetly be passing on the gene or a chance of her not to pass it on. I know so many % of the population carry the gene but do not ever get celiac disease...


IBS 1994

Endometriosis

Hashimoto's auto immune disease

Diverticulosis

Celiac disease April 2006 - neuro symptoms I am assuming from celiac disease

HLA DQ 2 (celiac disease) and HLA DQ 6 (GS) either way my parents made sure I had something!

Insomnia

Hyperflexibility

Daughter 6 y/o (5 at diagnosis) celiac disease via labs (all >100) and flattened biopsy. NO symptoms!!

Daughter 8 y/o with BM ="C" since birth and breast fed, osteopenia, SEVERE eczema up to 5 y/o, now on and off (-) via labs and biopsy. HLA DQ 2 and HLA DQ 8! and possibly ADHD.

Son 3 y/o also HLADQ2 AND DQ 8! Negative panel

Husband MEXICAN and he has DQ 8! His family refuses all and anything with celiac disease, same with his PCP!

"What doesn't kill us makes us stronger..." Right? I think that's the saying.

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I actually discovered my problem with glutens as a result of trying to lose weight. I have a slow metabolism to begin with and was overweight all my life (5'8", 215 lbs) until I tried the Atkins diet. I found that I lost weight as long as I stayed truly carb, and I realize now, gluten free, but stopped losing when I had whole wheat stuff (which was ok with Atkins because of the fiber).

2 of my sisters and mother also suspect they are at the very least gluten intolerant and they experienced the same thing. Once gluten free, I was able to lose weight and keep it off more easily. Anyway, I still work hard to keep the weight off, but find it impossible when I accidentally ingest gluten... I know metabolism plays a big part in the whole weight issue, but gluten really does as well-at least in some cases...

I just looked at my post and realized I totally missed my point. After joining W.W in Jan. 2006 we cut out gluten (without knowing I had celiac disease). We rarely had bread b/c in W.W point system there goes a lot of your points for the day (points = food). After being on the diet for a month or two I was staying awake but still very fatigued. I never put the diet and the ability to now stay awake instead of sleeping 20+ hrs./day, together! Honestly it wasn't until probably a couple months after my celiac disease diagnosis. I am also losing weight easier now than before and my body has changed shape. I am assuming it is r/t celiac disease - AT LEAST I HOPE SO!!


IBS 1994

Endometriosis

Hashimoto's auto immune disease

Diverticulosis

Celiac disease April 2006 - neuro symptoms I am assuming from celiac disease

HLA DQ 2 (celiac disease) and HLA DQ 6 (GS) either way my parents made sure I had something!

Insomnia

Hyperflexibility

Daughter 6 y/o (5 at diagnosis) celiac disease via labs (all >100) and flattened biopsy. NO symptoms!!

Daughter 8 y/o with BM ="C" since birth and breast fed, osteopenia, SEVERE eczema up to 5 y/o, now on and off (-) via labs and biopsy. HLA DQ 2 and HLA DQ 8! and possibly ADHD.

Son 3 y/o also HLADQ2 AND DQ 8! Negative panel

Husband MEXICAN and he has DQ 8! His family refuses all and anything with celiac disease, same with his PCP!

"What doesn't kill us makes us stronger..." Right? I think that's the saying.

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If I have celiac ,my brothers and sisters may also have it if it's genetic. I am the first one in my family ( the youngest though ) to have gone through the process of determining that I have it, no one else has experienced any substantial symptoms to prompt them to go to the doctor. Yes, I know, there can be no symptoms. My question to you all with siblings is do you share similar physical traits ie height, weight, build ? I am the tallest in my family ( 6'-2") and also lean ( 190lbs ) while my sisters are tall, (5'-7 - 5'-8" ) for girls and my brother is a little shorter, (5'-9" )and they are all a little on the meatier side, not obese, but not lean like me. I consider myself NO more active than them, but our body types are so different. Is it not odd that they may have celiac, but have not remained on the leaner side of things ? I have a big appetite, and gain slowly. They on the other hand, have to be careful.

Is it possible that I'm being starved a little while being celiac ? What's your story of weight on gluten, off gluten, and how do you stack up against your family ?

Thanks

I am the smallest in my family and the first one to be gluten free. I have had the GI symptoms for years. I am 5'1" and I am well under 100 pounds. I have been this weight for 30 years.

Susan


Dairy/Cesain free Oct. 2005

Gluten free June 2006

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I was ALWAYS the littlest one in my class in elementary school - my parents called me the peanut of the family because I was a tiny child - not freakishly skinny - just petite (incidentally my mom now looks back on my childhood and says I always had issues with hunger/tummy complaints). I'm now 5'3" with a small athletic frame and weigh anywhere from 115 - 120 lbs. When I was sickest in high school I got down to 108 and was diagnosed with IBS (10 years later, at 25 y.o. - diagnosed definitively celiac with biopsy and blood tests). I'm similar in size/shape to my mom. Brother is 6'4" and thin as a rail. Dad is athletic build ~6'. No one in my family has ever had weight problems - all have active lifestyles and very fast metabolisms. Both dad and brother claim that "beer doesn't sit well with them" but no other signs of Celiac. Paternal great aunt with Celiac and that side of my family is all Swedish (isn't there a Northern European Celiac link?).

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