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My Son's Sad Look Upon His Face


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#16 mamaw

 
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Posted 29 May 2011 - 08:25 AM

Wow, is food what life is about? Yes, we are a social nation where food becomes a main social part of life but LIFE is about loving, caring, feeling, for someone other than ourselves. Why were we put here if was not to reproduce if we are able too. If we never multiplied then would there be many humans left in the world? I have very healthy adult children but they have a small issue in their life, celiac nothing else wrong -- educated & enjoying their own families... They vacation, work, eat , enjoy life as with anyone who has no health problems. They & their children have learned how to grow from this health problem.., & LIVE....
Honestly I don't know many people who have no health issues, knowledge is the key here.... in this day & age no one should be craving much of anything that is or they can't get gluten-free> Red Robin, Five Guys & so many more all have gluten-free menus... Knowledge is power.....
For families with kids that have disabilites-- I'm sure they will agree that their child is just as loving , caring & has a right to be on this planet as much as ones with no disabilites.. It's called love ....
Not everyone sees a handicap as a death sentence..

Negative people rub off on others when exposed to negative thoughts..Please read that statement several times........

Instead of complaining about celiac& poor me, defeat this illness & face it head on... Life will be good...Don't let celiac or any other illness define who or what you are....or you lose.......

For me I have never been sorry for having children....
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#17 Karl Otto

 
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Posted 29 May 2011 - 08:47 AM



It is not being bad or stuck up, to want your children to grow up normal, strong, and happy. It is like child abuse, your grandfather abused you father he abuses you, and when you get grown, you abuse your child. The only way to stop it is to stops with you, yourself. Then, there will be no more abuse.
As with any disease, you know for sure that is in the family tree, it can be pasted along to your children. Child are innocent people, they do not deserve to be born with one foot in the grave before coming into this world. I look back on my young life and, I see where I have suffered because, I my two diseases and know, life would have been better if not for my two diseases. I had the strength in will power to do what it takes to win. But, the diseases must run their course so, I was handycapped right from the start. How, was I expected to tell my sons that, they were going to grow, be athletic, get a good educations and go on to college. At the same time knowing, that I had diabetes, heart conditions,and celiac Disease in the family tree. These things would put a screatching halt to the have happy life thing.
Having diseases, cost allot of money to control, it robs us of our future. It keeps us from working normal jobs and buying homes and giving things to our children and wives. Life is hard enough for normal people but, for the disabled it is evern harder and more costly. Sure, we the disabled do what you can and must to survive another day but, that is not living, just existing only. We make adjustments in our lives but, it is not living, its co-existing only.
I have been personally sick so long, I am sick of being sick. There is nothing, I can do about it, however. Celiac Disease and Hyperinsulinism Hypoglycemia do not get better with time but worse with time. They are classified as a cumutive diseases, meaning gets worse with time.
I have worked for two hours a day when, I was young on volumteer basis one time. I worked in a veterans home setting. These disabled veterans were very unhappy customers, they lived in mysery and, they did not like it, being disabled. Some were in wheelchairs, bed ridden, etc... Some wanted to be able to go out into the world again. They would have litterly sold their souls to be normal again.
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#18 Darn210

 
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Posted 29 May 2011 - 08:51 AM

Why put a child through the same hell as we have to go through now?


My child is not going through hell because she has Celiac disease. She's happy and healthy because she follows the diet. She's active, outgoing, friendly, understanding, empathetic, compassionate . . . I could go on and on . . . There is no reason for her not to have children someday. She'll make a wonderful mother.


Life is what you make of it.
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Janet

Experience is what you get when you didn't get what you wanted.


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#19 Poppi

 
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Posted 29 May 2011 - 08:57 AM



As with any disease, you know for sure that is in the family tree, it can be pasted along to your children. Child are innocent people, they do not deserve to be born with one foot in the grave before coming into this world...

... How, was I expected to tell my sons that, they were going to grow, be athletic, get a good educations and go on to college. At the same time knowing, that I had diabetes, heart conditions,and celiac Disease in the family tree. These things would put a screatching halt to the have happy life thing.
Having diseases, cost allot of money to control, it robs us of our future. It keeps us from working normal jobs and buying homes and giving things to our children and wives. Life is hard enough for normal people but, for the disabled it is evern harder and more costly. Sure, we the disabled do what you can and must to survive another day but, that is not living, just existing only.


First of all. I. AM. NOT. DISABLED. Celiac disease is not a disability. A change in diet and I am healthier than I've ever been in my life. Because I have celiac my children will not have to suffer, they will be tested periodically and won't have to suffer the cumulative effects of years of undiagnosed celiac disease. I do not simply exist. I live! I kayak, surf, swim, hike, play with my kids, travel with my husband. I'm an amazing cook, I have friends and a garden and chickens in the backyard of the house I own. I have an education and have worked at "normal" jobs before I chose to stay home and be a homemaker. My life is everything I ever wanted it to be just without gluten on my dinner plate.

Secondly. There are many diseases in everyone's family tree. My grandfather has alzheimers and pancreatic cancer. My father has celiac. My father in law has type 2 diabetes as does his brother and father. Nobody is in 100% perfect health but raising our children to live happy healthy lives can head off some of these predispositions. My children may or may not have celiac disease but they play sports, do well at school and are expected to continue succeeding and excelling throughout their lives regardless of what type of food they are able to eat.
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Sara

Busy mom to 3 great kids (4, 8 and 18)

Gluten free since April 6, 2011 ~ Also sensitive to coconut, coffee and food dyes

Joint pain, mouth sores, back and neck pain, migraines, stomach pain, chronic fatigue, ADD and depression are all gone.
Wishing I had been diagnosed before celiac robbed me of the cartilage in my toes and the 3 babies we lost to miscarriages.


#20 Karl Otto

 
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Posted 29 May 2011 - 09:03 AM



Hey people do not get me wrong here. For about three years between 18 - 21 yrs old, I did wonderful things. I fished, hiked, camping, took photos professionally for the US Army. I traveled around the world, see many different people and learned that all people are equal and they all want the same things out of life. I was very happy back then. I almost felt normal. I was in college studing to be a writer. It was then the manure hit fan.

My disease took me out of the game of life. I am a living example what happens to the human body when, my two diseases are not taken care of right away.
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#21 Poppi

 
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Posted 29 May 2011 - 09:05 AM



Hey people do not get me wrong here. For about three years between 18 - 21 yrs old, I did wonderful things. I fished, hiked, camping, took photos professionally for the US Army. I traveled around the world, see many different people and learned that all people are equal and they all want the same things out of life. I was very happy back then. I almost felt normal. I was in college studing to be a writer. It was then the manure hit fan.

My disease took me out of the game of life. I am a living example what happens to the human body when, my two diseases are not taken care of right away.


And what we are saying is because we have celiac then our children won't have to suffer the consequences of decades of undiagnosed celiac disease. We are aware of the symptoms and the possibility of silent celiac and our children will be tested often.
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Sara

Busy mom to 3 great kids (4, 8 and 18)

Gluten free since April 6, 2011 ~ Also sensitive to coconut, coffee and food dyes

Joint pain, mouth sores, back and neck pain, migraines, stomach pain, chronic fatigue, ADD and depression are all gone.
Wishing I had been diagnosed before celiac robbed me of the cartilage in my toes and the 3 babies we lost to miscarriages.


#22 a1956chill

 
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Posted 29 May 2011 - 09:09 AM


My disease took me out of the game of life. I am a living example what happens to the human body when, my two diseases are not taken care of right away.

Many of us have a long list of diseases , just look at some of the signatures.
I was undiagnosed for 40+ years.I have more than a couple of disease diagnoses.
I am living and loving life .
Your "disease" did NOT take you out of the game of life. You did.
Life is a choice Karl. Live,laugh ,love and treasure each moment.
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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#23 ravenwoodglass

 
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Posted 29 May 2011 - 09:30 AM

Many of us have a long list of diseases , just look at some of the signatures.
I was undiagnosed for 40+ years.I have more than a couple of disease diagnoses.
I am living and loving life .
Your "disease" did NOT take you out of the game of life. You did.
Life is a choice Karl. Live,laugh ,love and treasure each moment.


Very well said.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#24 domesticactivist

 
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Posted 29 May 2011 - 09:42 AM

It's normal to miss things, and yes, the Burger King experience is now out of the question. Sometimes I feel awful because people at school are eating Sun Chips and Snickers bars in front of me. It's hard to be faced with temptation.

When we first realized my 10 year old had celiac, he definitely went through a lot of drama about having to give things up. But with family support and a positive attitude, he's happy.

I was very worried this week because he was going to his first sleepover birthday party since the diagnosis, at a friend's house where gluten-filled foods are well-loved. The party was going to include extreme physical activity, late night movies, and dinner, breakfast, and lunch, and lots of midnight snacking. He was going to see other kids eating pizza, cake, pancakes or waffles, all old favorites. On top of this, we couldn't even send him his favorites and extra special treats, because he was at his dad's the day before the party.

I asked him how the party was, and he didn't have one mention of sadness. He was full of stories about all the fun he had. I asked him what he had to eat... carrots, pickles, and a special treat of dates instead of cake and ice cream were top of his list. Yes, he was ecstatic about dates instead of cake and ice cream.

As others have said, this doesn't have to be a life sentence of misery. Disappointment and dealing with cravings or things one can't have are a part of life for everybody. Actually, I think a bit of this kind of adversity is necessary for good character.

On top of this, Burger King is something nobody should be eating. It's poison, and causes health problems for most people who eat it regularly. In a sense, he's lucky to have discovered he has a solid reason not to eat it!

As for having children when you know you could pass something on... it is a complicated issue. I imagine you are actually feeling guilty rather than trying to attack anyone else. As a parent, I sometimes feel that kind of guilt, not because of celiac, but because of other things... mostly my mood issues and the financial/relationship circumstances surrounding my children's births. However, every person is born with some disadvantages in life. In the case of Celiac, it's not so bad. If the parents know how to cope with it, they can help the child! Celiac children with celiac parents actually have an advantage over celiac children with non-celiac parents.

Now that we know what we are dealing with, my son feels so much better about life. I recently posted a blog post on my website about taking the kids' camp fire club to camp, which I do twice a year. This is the first time my son enjoyed it, because we brought all our own food! Did he look longingly for a split second at the sausages, chicken strips, tacos, cobbler, brownies, and s'mores the other kids had? Yes! That used to be the highlight of the trip! But he enjoyed his new favorite foods instead, and this time he got to feel good and have fun. This is the first time he's actually wanted to stay the whole time and go back.

Your son gets to feel bad about missing Burger King. But it doesn't have to make you miserable, and it doesn't have to make you feel guilty, and it doesn't have to mean his life never should have happened.
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#25 butterfl8

 
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Posted 29 May 2011 - 09:45 AM

I wish you could sit down with someone traditionally recognised as "disabled." Someone like-oh, your son. Are you incapable of doing for yourself? I don't think so. Have you ever read anything by Temple Grandin? She is autistic. The world might see her as "disabled," but I doubt she sees herself that way. She is a nationally recognized scientist and author, and a profesor in Fort Collins. Ask someone with diabetes if they are disabled. Now, (as you are an army vet), ask a vet who lost 1 or more limbs serving our country if he is disabled.
DISABILITY IS IN YOUR ATTITUDE. (And I believe the majority of the people I cited would not consider themselves "disabled." The majority of us here do not.)
You may be going through withdrawal, so I will give you a small amount of slack. If you knew that your son was going to be born autistic, would you have aborted the pregnancy? Or would you have allowed him the chance at life. You are asking everyone here to steralize themselves on a possibility. I don't want an answer on your son's life, but just something for you to think about. You can't ask anyone to make a choice about life, it isn't yours to say.
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I haven't got the slightest idea how to change people, but still I keep a long list of prospective candidates just in case I should ever figure it out.
--David Sedaris

#26 tarnalberry

 
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Posted 29 May 2011 - 09:51 AM

My daughter does not have "one foot in the grave". She can do all the sports, careers, and adventures she wants.

If you want to bemoan that you had UNTREATED diseases for so long, fine. If you are frustrated by still trying to find out how to feel your best, we understand. But that doesn't mean that having those conditions has robbed you of your life, or that anyone else will choose to suffer the way you are doing.

Since none of us have perfect genes, you are essentially suggesting a very strict eugenics program, and that's really just abhorrent to me. As if anyone who isn't perfectly healthy their whole life is some sort of freak who would be better off dead. GAH!
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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

#27 Roda

 
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Posted 29 May 2011 - 10:21 AM

I have been refraining from answering any of your posts to stay out of any conflict, but I can't resist any longer. I have celiac and I am certainly not disabled. I do not regret having my two sons either. Sure I understand that you are sick and have been a long time. I get that you feel that the military owes you something. It comes a point in time that you have to let go and quit blaming others for your shortcomings. The only thing here that I see that is disabling you is your attitude. I think it is just important to treat your mental health as well as the physical. One does affect the other. This is the attitude and environment that you have brought your sons up in and it is all they know. Of course your oldest son doesn't know how to deal with not having Burger King! It really comes down to attitude. He is not getting the positive reinforsement at home on how to deal with things. You enable. Go to the store and buy some ground beef for goodness sakes and make hamburgers at home! It sounds like your family could use some counseling to deal with things.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#28 srall

 
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Posted 29 May 2011 - 10:22 AM

If the message hasn't sunk in by now, I don't know what good my post will do, but here goes...
Here's a few things my mother passed down to me: Really bad eyesight so I have coke bottle glasses. This problem is taken care of with contact lenses. Really hairy harms and legs for a girl. Razor, and waxing took care of this problem. Gluten intolerance seems to come from her also: So I don't eat wheat. My parents were dirt poor when I was a little girl...well, this is an exaggeration if you look at how we fared compared to the rest of the world. Because of this I learned the power of having a strong work ethic and to appreciate simple pleasures, My mom and brother have diabetes, so I'm testing for that every year. My mom and brother have both battled depression. Fortunately I've been okay in this area but I also make sure I'm taking precautions like eating healthy and exercising. My dad drinks too much...so I keep my drinking in check.
So, if my parents knew going in would they have decided not to have kids? I would hope they'd still decide to have children. I LOVE life. I love MY life. My daughter...who got all these wonderful traits passed down to her, is my whole world. She has a zest for life that is contagious. I wish I could say she got this from me, but that's actually her dad.

My parents also gave me so many positive things too, but I know I don't need to list those. Just saying, everything I got is completely manageable, and the thought of someone else taking me out of the game, or never even giving me a chance because I can't, um, process gluten, is absolutely absurd. And my little four-eyed, hyper active, knobby kneed, stringy haired, gluten intolerant, beautiful daughter will be just fine as well.
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#29 txplowgirl

 
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Posted 29 May 2011 - 10:58 AM

Karl, you need help. Flat out you are living in depression and grief. Disabled, I'll give you an example of overcoming a disability. My ex brother on law and his wife both were paralysed on a car wreck and they had 3 children. What did they do? They didn't wallow in self pity. When they recovered enough to live on their own they went on with their lives. They raised their children, they went fishing, I watched my brother in law crawl out of his chair and fix the motor on his van. I watched him replace a motor. They showed me how not to let my gluten problem drag me down. You are wallowing in self pity and for a grown man I think you you are acting like a child. Grow up and get some help.
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Lupus, Connective Tissue Disease with Fibro type symptoms, Anemia, Anxiety, Depression, RA, Rynauds Syndrome, Chronic Fatigue Syndrome, Erosive Gastritis, Osteoporosis, Degenerative Disc Disease, Scoliosis, Bulging discs in lower back and neck, Pinched Nerves.

 

Soy free, MSG free, mostly Dairy free. Endoscopy shows blunted Villi which dr states as gluten sensitivity, so goin back to being gluten free


#30 Jenniferxgfx

 
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Posted 29 May 2011 - 11:46 AM

I am a person with invisible disabilities who cannot work and lives with daily pain. I've also chosen not to have children. But I really find your posts offensive. You're telling people they should be resenting their life choices and constantly miserable! I resent that. I have a wonderful life full of love and happiness and I haven't had a Whopper since childhood. I happen to be sick and in pain, but my life is still fulfilling and happy.

Bad things happen in this world but we don't have to let those things define us.
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glutenfree since 6/2011. sick for 30 years.

borderline blood test, negative biopsy.

SEVERELY sensitive celiac with DH. sensitive to contact and ingestion.

asthma (was severe; improved exponentially after 6/11)

spina bifida & childhood SCI at L4/L5 (possibly complicated by weak bones)

countless fractures and infections.

i once listed over 100 symptoms or conditions that improved or were eliminated after 6/11.

very vegan. and, of course, i've also discovered some other food allergies.





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