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The Good Over The Bad Of Celiac


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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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mushroom Proficient

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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Roda Rising Star

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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ravenwoodglass Mentor

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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allergyprone Contributor

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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pricklypear1971 Community Regular

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

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Bubba's Mom Enthusiast

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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Monklady123 Collaborator

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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LoriT817 Newbie

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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Poppi Enthusiast

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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moose07 Apprentice

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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moose07 Apprentice

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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Reba32 Rookie

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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T.H. Community Regular

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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Katrala Contributor

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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Marilyn R Community Regular

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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wheeleezdryver Community Regular

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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beebs Enthusiast

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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AVR1962 Collaborator

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

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melikamaui Explorer

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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bartfull Rising Star

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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    • Anmol
      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
    • trents
      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
    • knitty kitty
      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
    • trents
      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
    • Anmol
      Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things:  1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi  2. Why is she asymptomatic?  3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat?  4. Since she is asymptomatic, can we sometimes indulge in a gluten diet? ----------------------------------------------------------------------------------------------- Deamidated Gliadin, IgG - 64 (0-19) units tTG IgA -  >100 (0-3) U/ml tTG IgG - 4   (0-5) Why is this in normal range? Endomysial Antibody - Positive  Immunoglobulin A - 352 (87-352) ------------------------------------------------------------------------------------------------ Thanks for help in advance, really appreciate! 
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