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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

The Good Over The Bad Of Celiac
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21 posts in this topic

OK, so I would by no means consider myself an optimist. Although, it is good to look at the brighter side of things sometimes. Obviously, celiac has a lot of downside to it or there wouldn't be a forum dedicated to it.

I believe good can come out of bad. So, in your minds, what good can come out of having celiac disease?? Think creatively.

I'll start.

For one thing, it is teaching me perseverance. I've realized that I need to stick to this diet whether I feel like it's working or not. I've not had gluten for about 3 weeks and am not feeling much better.

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It has taught me to listen to my body. For years I kept saying to hub, "I feel toxic" :blink: I was right -- I was in a state of toxicity.

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Persistence and intuitiveness are what it has taught me. I never gave up trying to figure out what was wrong with me even when the doctor said nothing was. Going with my gut feelings and instincts and listening to it for my self and my kids. I "knew" something was wrong, just not what. That intuition has served me well.

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Being ill for so long taught me patience and gave me more empathy. I never lost hope that the reason for my illness would be found but that last year before diagnosis came close.

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it got me out of living on the 19th floor of a dorm, which i think is great. I have also learned how to cook and fend for myself, i just went off to college in a diff state so my mom isn't here to talk to the disabilities office or the restaurant... so i have learned that I can stick up for myself and people do listen (with the exception of a few). I have learned so much that from my almost 3 years of celiac disease its amazing, i wouldn't trade it for the world (atleast today :D )

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It has taught me that it's never too late to try.

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I'm at a point right now where I don't have too much positive to say..but if I were to pick one thing..it has taught me to be my own advocate. To speak up and not be a "shy Violet". I've been horribly shy my whole life, so this is a big change for me.

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Well since ALL food is gluten free except for wheat, barley, and rye (and oats depending on the person) this has taught me to give up a lot of the processed food I was eating and to cook more. So now instead of fixing one of those boxed rice mixes I make plain rice and spice it up, or cook it with broth, or with veggies in it, or something. We're eating much better now. I'm the only gluten free person in the house but since I'm not a short-order cook (in fact, I hate to cook) I'm only cooking one meal for everyone. (If I make them pasta I just don't bother for myself and I'll eat the salad and veggie.)

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I have been gluten free since 7/2011. I was diagnosed after extensive searching for cause of burping. I have slight gastritis but the biopsy from endoscopy showed damaged villi. Blood test confirmed celiac disease. I am one who does not have any other symptoms other than burping (still not convinced it is from celiac disease). Doctor put me on Omeprazole and I have not seen improvement from burping so I've taken myself off.

The positive side of going gluten-free for me is that I am eating more natural and healthy foods. The downside is that since I don't have symptoms, I can't tell when I am getting hidden gluten. :-(

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I have learned that I am not a lazy person. I have believed all my life that I just simply wasn't as smart or as driven as everyone else but I was wrong. My food was poisoning me.

I am smart and driven and energetic. I have accomplished things in the past 6 months that I never dreamed I was capable of and I'm just getting started.

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This may sound odd but celiacs has made me a little more social. I'm painfully shy so I don't really talk a lot. However, it seems that somehow food almost always comes up in conversations and even though I don't throw out "I have celiacs" just for a conversation starter usually it does come up when people start talking about food. I admit I have gotten annoyed when people ask me a bunch of questions about it but I do find it a little bit easier to talk to people after having explained the whole thing to them.

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Also, oddly enough, celiacs has made me healthier. Not just for the obvious reason's of improved diet but after being diagnosed I got back into working out which has helped tremendously.

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I've learned a lot about nutrition and the effects of foods on the body (not just gluten). There really are so many foods that we *can* eat, and I've discovered so many that I don't miss gluteny foods at all. I cannot ever imagine ever wanting to poison myself like that ever again! Whole and natural is the way to go!

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Having this disease is (I hope) going to make me a better cook. Not there yet, though, LOL.

I used to believe that it's never to late to learn something new, but I didn't really apply it to myself too much. Now, I have energy for the first time since I was a kid and I'm realizing how much this applies to ME now. I want to learn martial arts, and piano, and all the things I wanted to do before but didn't, because even getting out of bed felt almost too hard to do.

I've been able to show my kids that even when life-altering events hit you, you can still roll with it, get back up and keep going, and use it to make things better, even. And I was able to prove to myself that I could do it.

Coping with the cooking with this disease has also done something for my kids that I never expected: they are no longer slaves to immediate gratification. They are noticeably more patient, and understand much more the concept of having to work to get what we want (like getting up early to cook food for the day, so we can go and stay at a friends for longer), and that sometimes it takes time before we can get it. It's a huge change for them.

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I don't know about good or bad, but it's just part of who I am now.

I guess a good is that it's the first diet that I've never thought of drifting from. Like, not even an option.

And that it gave us an excuse to buy new kitchen appliances. :D

I've always loved baking and it's given me an excuse to bake more (although my husband blames my increased baking on his weight gain...)

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This post hits me right in the heart. I recently hooked up with a first cousin on a social networking site. It's been 30 years since I've seen her. I told her about my gluten sensitivity and she responded that it's great that I can deal with a disease by what I eat.

She asked if I'd heard that she has pancreatic cancer and is on chemotherapy. She's a single mom and has a 20 year old son that is severely mentally retarded. Wow. I am so not into feeling sorry for myself.

I never look at the threads that ask what you miss most.

On the good side, I have learned to challenge doctors. I know more about celiac disease than a majority of them do, via this forum and a subscription to "Living Without". We're saving money from not eating out. And we're eating better by eating whole foods vs. processed. Meals are more about what we're eating vs. cooking up something quick to eat while we're watching tv, so we're having more meaningful conversations. And both of us are learning to cook things we never cooked before. Figuring it out saved my life and quality of life.

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This post hits me right in the heart. I recently hooked up with a first cousin on a social networking site. It's been 30 years since I've seen her. I told her about my gluten sensitivity and she responded that it's great that I can deal with a disease by what I eat.

She asked if I'd heard that she has pancreatic cancer and is on chemotherapy. She's a single mom and has a 20 year old son that is severely mentally retarded. Wow. I am so not into feeling sorry for myself.

I never look at the threads that ask what you miss most.

my husband has several life- long disabilities... I sooo hear what you're saying!!!!

on a lighter note, one thing I like about being gluten- free is that I get the whole box of KinniToos or KinniKritters!! And any larabars or Kind bars we buy are mine, too!! :)

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I guess I know now to 'trust my instincts' for years I had Drs basically treating me like a hypochondriac- now all those bizarre symptoms make sense and I know I'm not crazy!

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It has helped me appreciate every day we are given and to accept what I cannot change.

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Love this post!

Being celiac has given me a great many things. Good health first of all. After being sick for so many years, realizing that a diet change can make me feel good again is amazing. I also am very thankful for the early diagnosis for both of my children. They will never have to suffer like I did. And on a vain note, I've lost 30 pounds! I went from a size 12 to a size 2. I finally feel like ME again. My entire family eats SO much healthier now. I consider celiac disease a blessing in disguise. :D

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Oh my. Where to start?

I am learning to cook, which is saving me money as well as my health. No more junk food for this girl!

I feel better, I sleep better, I have more energy.

And I understand what my Mom went through! For years and years, my poor mother was plagued with health problems. Not only did her doctor think it was all in her head, but, I am ashamed to say, so did I. It seemed that every day my Mom had a DIFFERENT complaint. One day she had a sick stomach, the next day it would be a headache, the day after that it was a backache. I was convinced she was making it all up for attention. I even told my Dad once, that I thought Mom was a hypochondriac. To my Dad's credit, he told me I was wrong, and that I should have more respect for her.

Even after she was diagnosed back in the mid-eighties, I didn't believe her "other" symptoms were real. I knew she would have digestive symptoms, but I thought the headaches, joint pain, and all the rest were fake.

Now of course, it's too late to apologize to her. :(

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    • celiac disease is psychosomatic
      The following link might be helpful for others experiencing simlar psychosomatic issues with doctors. Although it's only for psychiatrists, I think it should be for all doctors! http://www.psychsearch.net/complaints/ The neuropsychiatrist I saw might fall into this category? I can checkmark:

       Falsified medical records
       No Biological Test for "Mental Illness" (no blood, urine or other lab testing)
       Breach of Confidentiality (...if she sends my medical records to my doctor or discusses them with him. I am requesting a copy of my records from this doctor t see if she sent anything to him.)
       Physical Illness Misdiagnosed as "Mental Illness"
       I was told I have a "chemical imbalance" (without any lab tests)
       Unethical Conduct
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       Something else that didn't seem quite right  
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    • celiac disease is psychosomatic
      The office is located in another city than where I go. There is no receptionist at the location closest to me meaning patients wait for the doctor to open her closed door to call their names for a consult. So, I would have to knock on her door which would really make her say that I'm sick since I keep writing letters AND showing up in person. The main office is too far for me to travel with road construction going on for the remainder of the year. I suppose I could mail the letter instead. But the staff is very irresponsible so it might be thrown away. The doctor probably told them that nothing needed correction in my records so ignore further requests from me. The other staff member I dealt with seemed normal, but I complained to the doctor about the staff member I dealt with today when she failed to update my phone number that I gave to her a few times (and which she said she updated), which resulted in me showing up for an appointment (I traveled a distance) one of the testers thought she canceled by leaving voicemail for phone number I no longer had. What I mean is I told the doctor that the staff member said she updated my phone number when the doctor asked me why I was there when I showed up for that cancelled appointment. Unfortunately, this staff member answers the phone most of the time. I'm sure she did what she could to make me look bad to the doctor to make her look good because I complained about her. I feel like scheduling an appointment with a psychologist to tell her what happened with this name calling. I'm sure it's against therapist code or I'd like a psychologist's feedback on this doctor's behavior. There are other patient complaints about her on the Internet how she laughs at patient's pain and suffering. I feel that's how she treated me. Update: The staff member called me back to tell me the doctor amended my report and she put it in the mail. I wonder if the doctor discussed what she said to me with another doctor who told her what she did was unacceptable in the medical field. I am hoping my report is amended or new negative comments are not added by the doctor to say I keep writing her letters or something in that regard.
    • celiac disease is psychosomatic
      The letter I am suggesting has nothing to do with the doctor.  I would type it and walk it to the desk when are in the building for your other appointment. 
    • celiac disease is psychosomatic
      Thanks. I'm not sure if the doctor will read another email I send and that's the way I'm told by staff to contact her. It will just confirm that I keep writing her letters although I only sent her one email about it! I already told the staff and her that I didn't want my medical records sent to any doctor's office, but I don't know if they will do it out of spite. It was scary talking to this doctor because she wouldn't listen or let me get a word in...I guess that's the reason why I feel the need to raise my voice at this office. When I requested a Lyme disease prescription from another doctor years ago before I knew I had celiac disease, this ignorant doctor told me not to come back to his office because there's no such thing as Lyme disease so only crazy people think they have it. I thought that was the worst experience I had with a doctor, but this experience was worse. I mean this neuropsychiatrist kept calling me a sick person over and over. It's so scary dealing with doctors like this. I really don't know how many other doctors may have wrote in my records that my symptoms are all in my head because celiac disease isn't real.   And my neurologist said this neuropsychiatrist was great. Maybe he says that about all the doctors he refers to patients to? I don't know if you call her personality psychopath since she appeared really nice during my consult, but she was thinking all this negative s*** in her mind at the time or different than she appeared to be.
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