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My Son's Sad Look Upon His Face
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38 posts in this topic

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

:)

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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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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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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

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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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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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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/cms/en/us/cms_out/digital_assets/files/pages/GlutenFree.pdf

Otherwise you could take a read of the Canadian ingredients and see if you can order a burger there: http://en.burgerking.ca/cms/en/us/cms_out/digital_assets/files/pages/IngredientsAndAllergens.pdf

From a quick glance it looks like they may have some options!

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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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    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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