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Does Anyone Like Being Celiac


runningcrazy

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runningcrazy Contributor

I know I probably sound like a nut, but I kind of enjoy it. I've always been a weird eater, and im also dairy free and vegetarian...I guess its kind of fun for me to be different.

Sure I hate getting weird looks when i bring weird food, or not being able to eat the cake at a party, or having to look stuff up ahead of time, or accidently contaminating myself..(jeez maybe im talking myself out of liking it) But I like to know that i am doing something healthy and i like the challenge of finding/making new foods. Does anyone else relate?


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Emilushka Contributor

I enjoy feeling better again. I can't say that I enjoy Celiac ... I'm weird enough without having dietary restrictions. But I don't really mind the Celiac too much by itself. I really miss cheese. I think if I could get back the ability to eat cheese, I wouldn't mind at all.

Rocknroll Celiac Newbie

it's funny, i'm a much different person than all my peers to begin with, and being a celiac - although extremely alienating - does force me to live a more healthy and productive lifestyle. I don't enjoy not being able to take part in any social aspect that all the other young people around me do, but the fact of the matter is that partying and being cool are a symptom of 21st century culture. It really opens up a different perspective on what the universe has planned for me.

So, no sir, I don't like it. But I like the effects of it.

jeanne- Rookie

Funny you started this thread. Yesterday I got the results from the genetic testing. Everything came back neg. I was disapointed. The gluten free diet does make me feel better (dx'ed non celiac gluten sensitivity). But I know that my family will think I can cheat because I don't have a REAL disease. If I could tell them that I have celiac, there would not be any hassle about meals for the holidays. I can hear them now asking why do I always have to be weird and different.

Coinkey Apprentice

Funny you started this thread. Yesterday I got the results from the genetic testing. Everything came back neg. I was disapointed. The gluten free diet does make me feel better (dx'ed non celiac gluten sensitivity). But I know that my family will think I can cheat because I don't have a REAL disease. If I could tell them that I have celiac, there would not be any hassle about meals for the holidays. I can hear them now asking why do I always have to be weird and different.

Ha Ha. That was my exact feeling. Disappointment that it is not properly diagnosed. So now I get to answer people with- I just feel better not eating gluten so I don't, most of the time it can't be diagnosed properly anyway and you have to be severely far gone for them to catch it- so I'm taking a shortcut and feeling way better and living my life from 26 instead of 45. Then I bite into my delicious rice pasta dish when they are sat there eating icky Kraft Dinner. :P I like being gluten free.

Juliebove Rising Star

I don't have celiac but I do have diabetes and other food allergies.

You mentioned cake. I have always hated cake! So much so that I used to ask for no cake to be served at my birthday. Frankly I would be far happier if there were no sweets served at my birthday. I have never been a big sweets eater. But my mom always insists on having something. She used to get me pie. I don't really like pie either. One year I just said I wanted fresh strawberries and sugar cookies. But do you think they could find sugar cookies? Apparently they are hard to find. And my mom doesn't like to cook or bake. But they finally found those and we had that.

Now at birthdays my mom my makes a big to do. Not only does she get the birthday person's favorite dessert, but she gets desserts for everyone else as well. Except for my daughter who needs the gluten-free. I think perhaps she just doesn't understand the diet for her or something. Or maybe she can't find the right stuff. She and my dad did go to the U district a couple of times for a vegan, gluten-free cake for her birthday. But now they just tell me to bring something for her. And she wants Udi's blueberry muffins. Fine.

But for me? Makes it tons easier. Used to be I would decline the cake, because I didn't want the cake and they would always insist that I ate least try the cake. Well, now I can't. I just tell them I have diabetes and an egg allergy and can't have it. Shuts them right up.

But would I honestly want to have diabetes and food allergies? Of course not! However I look at it from the standpoint that nobody is perfect. We all have something wrong with us. Or perhaps I should say something that makes us different than other people. It's just something we all have to deal with. I might not have celiac, but I have my own issues.

cassP Contributor

Funny you started this thread. Yesterday I got the results from the genetic testing. Everything came back neg. I was disapointed. The gluten free diet does make me feel better (dx'ed non celiac gluten sensitivity). But I know that my family will think I can cheat because I don't have a REAL disease. If I could tell them that I have celiac, there would not be any hassle about meals for the holidays. I can hear them now asking why do I always have to be weird and different.

nonceliac gluten intolerance can be just as serious!!!! sometimes more... just depends on everyone's individual makeup... and genetics.. gluten has been linked to Crohns.. antigliadin antibodies has been linked to heart disease.. wheat germ agglutin has been linked to esophageal and prostate cancer.. goes on and on and on..

PLUS- you said your genetic test was negative- but what did they test for?? only DQ2 and DQ8?? there's possibly 27 genes that could be involved


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jeanne- Rookie

nonceliac gluten intolerance can be just as serious!!!! sometimes more... just depends on everyone's individual makeup... and genetics.. gluten has been linked to Crohns.. antigliadin antibodies has been linked to heart disease.. wheat germ agglutin has been linked to esophageal and prostate cancer.. goes on and on and on..

PLUS- you said your genetic test was negative- but what did they test for?? only DQ2 and DQ8?? there's possibly 27 genes that could be involved

The test covered DQ1,2,3,and8. The test for Hashi's was a definate pos. at 1362 (normal < 60). Point well taken.

kareng Grand Master

Funny you started this thread. Yesterday I got the results from the genetic testing. Everything came back neg. I was disapointed. The gluten free diet does make me feel better (dx'ed non celiac gluten sensitivity). But I know that my family will think I can cheat because I don't have a REAL disease. If I could tell them that I have celiac, there would not be any hassle about meals for the holidays. I can hear them now asking why do I always have to be weird and different.

Why do they have to know the exact test results? Obviously, you are gluten intolerant. Tell them you have tested positive for gluten intolerance, cause ,with the diet response, you have.

cassP Contributor

The test covered DQ1,2,3,and8. The test for Hashi's was a definate pos. at 1362 (normal < 60). Point well taken.

there's gluten intolerants & celiacs on here with DQ6 and DQ9, etc, etc,

there is still so much for the medical community to learn about all of this

YoloGx Rookie

I like being celiac in that following this diet I look and feel like I am 15 to 20 years younger than most people my age (61). I also am much more knowledgeable about health which feels good. I already went through a lot of the stuff beginning in my twenties that a lot of people don't face until they are my age.

The final blessing came 3 years ago when I discovered I needed to be free of even trace glutens--which I didn't know about previously. The change in my health for the better was and is remarkable! I feel like I am way ahead of the game in that respect. I now look forward to the rest of my "old age" rather than dreading it like most people in this country. When I look at the average diet I cringe actually. I certainly wouldn't want to eat like most people here do...

Nevertheless, it would be nice to be less reactive to trace amounts of gluten since as it is I get cc'd from trace gluten in the environment at work etc. and have resultant migraines etc. I would rather not deal with. However it still is way better than being sick for one to three months like I used to get all the time...

One benefit actually that I have read about and observed is that it is often the case that people who have celiac and don't eat gluten are more flexible, are more resistant to disease and often live to be older compared to the rest of the population.

Bea

sandsurfgirl Collaborator

Funny you started this thread. Yesterday I got the results from the genetic testing. Everything came back neg. I was disapointed. The gluten free diet does make me feel better (dx'ed non celiac gluten sensitivity). But I know that my family will think I can cheat because I don't have a REAL disease. If I could tell them that I have celiac, there would not be any hassle about meals for the holidays. I can hear them now asking why do I always have to be weird and different.

Don't tell them!!! Lie and say it was positive. Make your life easier!!!

sandsurfgirl Collaborator

This is crazy talk-- liking celiac! LOL I abhor celiac and the pain in the buttocks it is for me. But... I love feeling good so I love that I was finally diagnosed celiac and I'm not sick anymore.

But if I could have 3 wishes from a genie I'd wish to be a gluten eater again in a heartbeat. Celiac SUCKS!!!!!

modiddly16 Enthusiast

I don't really like being a celiac but I do like educating people about it! Most people I talk to are quite interested in learning more about it and I think the more educated people are on the disease, maybe the more I'll end up liking it in the future when more places offer items for us to enjoy! (that may have been the longest sentence ever...I had to breath even after typing it :P )

kitgordon Explorer

I enjoy the challenge of cooking and baking new things, and finding and adapting recipes - I am actually liking to cook more than I have in years. I had gotten into such a rut of cooking the "same old things". And I enjoy not being afraid to be away from the bathroom. But, if I could make celiac go away, and go back to eating like everybody else, I would, of course.

precious831 Contributor

In my most optimistic voice I say, absolutely not! I don't like being this way. Even makes it harder because I have to be completely grain-free, aside from dairy and soy-free.

lynnelise Apprentice

Basically I like that it can be treated on my own without expensive drugs. I like that it can get me out of situations like eating gross storebought cake at work without hurting anyone's feelings.

I don't like that it makes traveling a pain. That outings with friends always involve a big debate about where I can and can't eat. I especially don't like that when my baby nephews toddle up with cookie crumbs all over their hands and face I have to reject their hugs and kisses.

tarnalberry Community Regular

I like that it has forced me to go out of my way to try new things and not fall into a "standard american diet" rut. It means that going dairy free was much easier, cooking for my picky husband is much easier, making modifications for other dietary issues (baby, hubby's high blood pressure, vegetarian friends, etc.) is much easier.

The rest of it, I'm fairly ambivalent about. It is what it is.

GlutenFreeManna Rising Star

Some days I like it, some days it's a nightmare. Just depends on the situation and my mood I guess. I like being healthy. I like cooking. I like trying new foods. I don't like the inconvience. I don't like the social limitations. I REALLY don't like that the smallest amount of CC can make me sick for close to a week.

srall Contributor

I agree with many of the above posters. This has forced me to really look at the American Diet. Because my diet was so "limited" (or so I thought) it ended up opening up a variety of yummy food I never considered. I've learned so much about eating organic, non processed food. I'm amazed that so many of my physical symptoms can be completely managed without drugs, just food and exercise. I in my heart believe that most of the population is walking around feeling like crap all the time and calling it normal. Until my body was clean I didn't realize I felt absolutely, well, like crap for probably a good decade. I feel years younger.

So it's totally inconvenient, has made traveling a scary ordeal...but I love feeling good and eating well.

GFinDC Veteran

I figure we are all made the way we are for a reason. And we need to accept that there is a reason for it and it is for the good. We may not understand it, but that's ok. We is just people after all. My cousin is unable to walk since birth, he is studying to be a teacher, and my ex has a son who can't walk. I've had friends who were blind, and I know a woman who is a quadraplegic and runs an IT department for the Navy and comes to work everyday in a wheelchair. She can't even drive. I like that I am not any of those people, even though they are actually amazing and wonderful people.

kdonov2 Contributor

I enjoy the challenge of cooking and baking new things, and finding and adapting recipes - I am actually liking to cook more than I have in years. I had gotten into such a rut of cooking the "same old things". And I enjoy not being afraid to be away from the bathroom. But, if I could make celiac go away, and go back to eating like everybody else, I would, of course.

^^^^^^Agreed.

Skylark Collaborator

As far as health problems go, it's not too bad. At least diet treats it. I don't feel like I'm missing out on anything important in life now that I'm gluten-free. If I could snap my fingers and not be celiac, I definitely would.

cap6 Enthusiast

Almost age 60 and only 7 months celiac. Do I like it? hmmm Some days I hate it and other days I don't mind so much. Each day I think it gets a tad easier. What I do like is that for the first time in my life I feel healthy and am eating healthy. I am enjoying trying new foods and (on some days!!) learning to cook. Overall - I don't like it and I don't hate it. It is as it is. Hey - we're all special!!! :o

anabananakins Explorer

Funny you started this thread. Yesterday I got the results from the genetic testing. Everything came back neg. I was disapointed. The gluten free diet does make me feel better (dx'ed non celiac gluten sensitivity). But I know that my family will think I can cheat because I don't have a REAL disease. If I could tell them that I have celiac, there would not be any hassle about meals for the holidays. I can hear them now asking why do I always have to be weird and different.

Ha, I was the same when I got my gene test results. I know I can't eat gluten, it would have been nice to have a concrete reason why. Oh well, I'm just waiting for science to catch up with how I feel.

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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