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My Son's Sad Look Upon His Face

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Posted 29 May 2011 - 12:09 PM

Bad things happen in this world but we don't have to let those things define us.

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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
Gilbert's Syndrome , confirmed by gene testing

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    ÄŒeznem da se u Hrvatskoj!

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Posted 29 May 2011 - 01:03 PM

When I found out I have Celiac I was devastated, admittedly. I was screened for it as my sister was gluten intolerant and the remainder of the family was to be tested. Gluten doesn't make me feel sick at all which does not give me a lot of incentive to be gluten-free. Food has always been a HUGE part of my life. One of my passions is cooking - food in general. So I can indeed understand mourning food. I teach cooking classes - now gluten-free cooking classes and will soon be teaching women in a shelter how to cook in a new program. This would never have happened if I was not diagnosed with celiac disease. What I am saying is that having celiac and other diseases (I also have debilitating chronic pain and fibromyalgia) can open doors. It really can. It has really forced me to be more introspective and evaluate things. It has developed my character, actually. Rather than mourn for what I am missing I choose to use my talents and skills to help others.

That does not mean it is difficult - it certainly can be at times. My husband and I just got back from three weeks in Croatia and Italy. Prior to the trip I had misgivings due to my extreme back pain. But I jumped in and made myself do it and am so glad I did. The pain was severe and unbearable at times and I felt like giving up. Sure, I had to get 7 massages over 21 days. My husband and I travel to Europe twice a year but this trip was by far the most painful. I refused to let it control my life. My doctor has told me I cannot sit longer than 15 minutes at a time, yet I had to be on planes and in airports for 30 hours! You know what? I DID IT. I CHOSE to do it. I kept my eye on the prize - enjoying living in Croatia.

Believe me, it was not easy strolling past pastry shops and pasta restaurants in Venice but I coped because I chose to. Plus I don't want my husband to have to live with a whiner! :P

It helps to have things to look forward to. Perhaps it is not a trip but something else like gardening or a new book to read or trying a new recipe. Each morning I thank God He gave me another day to enjoy. It is possible to have joy even in the midst of suffering. Although it is hard to do I would suggest that your son perhaps get involved in the community if he is not already - it helps take one's mind off problems and focus on someone else! :)
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.



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Posted 29 May 2011 - 01:30 PM

My celiac son is an incredible little boy and this world needs my son!!! I'm sorry Karl but your attitude is childish and narcissistic. You can't have it all in this life and your words remind me of Hitler who wanted the perfect race, only people with no flaws in this world.

One of the most awe inspiring motivational speakers on this planet has no arms and no legs.

EVERY life has value, and seriously celiac sucks but it is nothing compared to what some people suffer. So you can't eat gluten. Big deal.

My son eats at Burger King all the time. He gets his burger lettuce wrapped. My husband always takes him so I'm not sure what he gets on the side. I think the apple fries.

There are so many fast food places where you can get your burger without the bun. If you must have a bun, then bring your own and put it on there. It's not the end of the world.

I think it's fine he cried over burgers. I have cried over many different foods. What I object to is your saying you wish your children have never been born because of celiac disease. I find that attitude appalling at best and bone chillingly frightening at worst.

Ever heard of Helen Keller? Joni Erikson Tada? Franklin Delano Roosevelt? Ludwig Von Beethoven was deaf for the love of Pete. Vincent Van Gogh suffered from mental illness. I could go on and on. Would you rid the world of these people who had such an impact on it?

Your son is FINE. So what if he is a little upset about a flippin burger. He will get over it and maybe he will be stronger from his difficulty.

I'm off to shake my head in disbelief before my post becomes a tirade.
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Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!



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Posted 29 May 2011 - 01:31 PM

He looks me in the eyes, his father with a deep saddness and, ask if this is how it is to be all his life?

I sympathize with you sir. Fathers want their sons to be healthy and happy. My son also feels like he is the “odd-ball” and does not want to broadcast the fact that he does not eat most grains. He wants to fit in and be like all of his classmates. He feels sad sometimes about not being like the “majority” of his classmates.

Personally, I am proud of myself for taking the necessary steps to find out what was ailing my son. I asked to have him tested. If I didn’t ask, he would still be undiagnosed, and he would still be eating gluten grains. His health would have deteriorated greatly if I hadn’t had the knowledge to get him tested. You must be a proud father too, since you too had the knowledge and wisdom to take the necessary steps to have you son tested. He can now live a healthier life, than if he was not aware of his intolerance.

What my son is coming to realize is that many of his classmates have celiac disease, but don’t know it. Each year, a few more of his classmates get diagnosed with celiac disease. He is aware that celiac disease is one of the most under-diagnosed diseases today and that many of his classmates will most likely develop other health issues due to not being properly diagnosed with celiac disease and continuing to eat gluten grains. So now, he feels better about eating differently than most of his classmates. He now feels like he is taking the steps necessary to live a healthy life.... that he is “in control” of his life and well-being (next to our creator that is).

Next time he asks “if this is how it is to be all his life”, tell him “NO”. Maybe tell him that one day soon, fast food restaurants will have gluten free hamburgers..... And that someday soon, they will cook their french-fries in oil that is not contaminated with gluten. Maybe tell him that he is one of the leaders in eating a healthy diet and that the rest of the world will come around to eating a healthy diet, someday.

But don’t blame yourself for his condition. If anyone’s the blame, it’s our society, our Standard American Diet, and our upbringing being taught that gluten grains are good for us. Eating a gluten free diet should be the “norm” for everyone, and someday it might be.

Thank you for your past service to our Country.

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Posted 29 May 2011 - 02:09 PM

I have an 8 month old daughter and I was just diagnosed 3 weeks ago. And you know what? I fully intend on giving her a sister or brother (or several). While I certainly dont want her to turn out to have Celiac disease, if she does, she will find, as I have, that it is really no big deal. My daughter is the best thing that has ever happened to me. Before I had her, I knew that I had asthma, eczema, and gall bladder disease (my gall bladder was actually removed 5 months before I got pregnant). I didnt even think twice about having a baby. People cope with disease and illness everyday. There is only a small percent of the population that can say that they have absolutely NOTHING wrong with them. Allergies, Auto-immune diseases, skin conditions, silent diseases... if everybody who had anything wrong with them stopped procreating, the human race would have a far different landscape today. We can play the what-if game forever and a day. But what if a celiac child grows up to cure cancer? What if a diabetic child grows up to finally deliver world peace?

Now, you got pretty defensive about a hamburger... gluten free buns are becoming more and more popular. We even have them at the local Ralphs. Better yet, try a hamburger on a brown rice tortilla. I had one yesterday and it was fabulous.

I am going to thank you for your post though. The very proposterousness of it made me realize, wow, this disease is way, way far from the worst thing that could have happened to me. And think about how lucky we are? Our disease can be cured with a diet. No medications you have to remember to take for the rest of your life, no expensive, painful medical treatments at specific intervals... heck, I even got to stop using the steroid creams on my skin last week. Life is beautiful!!!
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Gluten-Free since 5-10-11
Gall-bladder removed 8-7-09

Glad to be rid of daily intestinal revolt and a debilitating skin rash!



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Posted 29 May 2011 - 02:25 PM

Karl, I do hope you get help for your illnesses and depression/anxiety.

I wasn't diagnosed until after I had kids but I had kids knowing full well that both sides of the family had various (possibly hereditary) diseases like heart disease, diabetes, cancer, depression, arthritis, near-sightedness. NOT ONE person on this planet is perfect and not one is expected to be. Any desire to make the human race perfect is perversion.

My son has celiac but he is going to be a doctor and may end up helping celiacs or helping to find a cure. Or maybe he'll cure heart disease or diabetes. Maybe he'll alieviate the suffering of many people and help make the world better. His being on the planet is a good thing. You, Karl Otto, and your son could focus on others and help make the world a better place instead of engaging in self-pity. Sure, most of us have "down" days but this disease doesn't define my life and I hope it stops defining yours. Best wishes to you.
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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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Posted 29 May 2011 - 02:29 PM

I have Celiac disease and my 17 mth old daughter also has Celiac disease. I knew that I had Celiac disease going into the pregnancy and I wouldn't change anything. Celiac disease is an inconvenience but it's not horrible enough that I would avoid having children because of it!

I eat at McDonald's and Wendy's. I order Double Cheese burger with no bun and french fries. Wendy's actually has a gluten free menu as well.

I'm not sure if you're American or Canadian but we're personally in Canada and I know the U.S. fries are not safe at McDonald's.

I was diagnosed at 27 years old, shortly after my wedding. I'm not saying it's easy but it's something that is in my opinion very manageable.

If you and your son happen to live in the states you should know that Burger King USA offers a Gluten Free Menu: http://www.bk.com/cm.../GlutenFree.pdf

Otherwise you could take a read of the Canadian ingredients and see if you can order a burger there: http://en.burgerking...ndAllergens.pdf

From a quick glance it looks like they may have some options!
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Posted 29 May 2011 - 04:16 PM

If I was younger I would have like 6 kids and if several of them turned up celiac we would have awesome pot lucks when they grew up.

Celiac sucks at times but my life is good! My son's life is good. Did he bawl today about pizza and cupcakes at a birthday party? Yep. He's only 7. But you know what. I ran to the store and grabbed a little gluten free pizza and some gluten free chocolate chip muffins and he had a blast at the birthday party.

I am the champion on this board of honoring your grieving process. I have cried my heart out over Guiness. But there is a difference between grieving and getting past the point of normal logic.

Your son should stop pitying himself and get on this forum. There's a restaurant board and a recipe board where he can find solutions to these food dilemmas.
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Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

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