Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

My Son's Sad Look Upon His Face


Karl Otto

Recommended Posts

tarnalberry Community Regular

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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Roda Rising Star

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.

srall Contributor

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.

txplowgirl Enthusiast

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.

Jenniferxgfx Contributor

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.

cahill Collaborator

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

:)

love2travel Mentor

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! :)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



sandsurfgirl Collaborator

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.

No.Wheat.For.Me Newbie

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

Elfbaby Apprentice

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!!!

cyberprof Enthusiast

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.

Upsidedownmuffin Newbie

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: Open Original Shared Link

Otherwise you could take a read of the Canadian ingredients and see if you can order a burger there: Open Original Shared Link

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

sandsurfgirl Collaborator

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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      4

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

    3. - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    4. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    5. - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,465
    • Most Online (within 30 mins)
      7,748

    Catherine17
    Newest Member
    Catherine17
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Ginger38
      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.