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Does Anyone Like Being Celiac


runningcrazy

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YoloGx Rookie

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.

I second that!

Bea


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rdunbar Explorer

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

I'm really sensative to trace amounts of gluten as well; after getting serious about removing any expososure I may be getting to t best of my ability for @8 months, I'm finally doing better. I didn't eat wheat or bread for @3 years previously with scant results.

Now I'm worried about my vitamins and supplements containing trace gluten despite it them saying 'no gluten' on the label.

To the OP, no, I don't like being celiac. I know what you mean, though, I certainly get satisfaction from eating no processed and packaged foods, and it's exciting to have hope of healing from all the damage that's been done from poisoning myself for 40 years;

I have dermatitas herpetiformis, and can tell you that no one likes going through having this condition. It's like asking if someone likes to be tortured. It's itchy to the point of intense pain and burning,

as far as the neurological problems I've had, it's definatly not fun either. Just all the mood disorders I've had have been unspeakably disabling and have interfered with my life so much, I can't even entertain the idea of liking it.

I do like finally having some answers about how gluten and my reaction to it have caused so many different problems for me that I didnt even dream were related to each other.

And I'm excited that I'm slowly getting better, and am finding out a little bit what it is to feel okay

Marilyn R Community Regular

I'm glad to have found answers for so many questions about my mental health. I'm happy to be happy again. I'm thrilled that I can laugh at a joke and can care about very basic things again.

I'm happy that something in me isn't always upset (mind, body, bowels, stomach, nerves).

And I'm really happy that things didn't progress. I don't have Lupus or MS or worse.

So, in following your OP, I am happy I know I have it. I miss a few things, but that's life. B) Happier now than before.

UnhappyCoeliac Enthusiast

^^ I know there is a relation to Celiac & MS but comparing them is a little to doomsday and doesnt serve much of a purpose IMO, my doctor and my good friend said genetically they're are still a fair way apart.

No... I'd say anyone saying yes is lieing

Ya being forced to eat a little healthier at some points doesnt out weight the con of all the time effort to research this and all the little pleasured u miss out on.

tennisman Contributor

The health problems I have had from being Celiac have been annoying.

But I kinda like being Celiac as it's a part of who I am, it also makes me more unique, and even though it has been annoying at times I feel lucky to be a Celiac and all the problems that go with it. It's wierd and strange to explain but I do kinda like it lol

Marilyn R Community Regular

I don't want to put a cramp on this post, but hello, MS and celiac has been linked. And celiac disease has been connected with several other autoimmune diseases. There is a definite link between MS and celiac disease.

Please do your homework before throwing forks. Or put a half cup of "shut up" in whatever you're drinking! :P

jenngolightly 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?

I hate it. I hate always thinking about food. I hate that other people feel bad even though I'm okay when they eat in front of me (I'm gluten-free cf sf df and sugar free). I hate that I always have to carry snacks with me in a BIG bag when my friends get to carry trendy little purses. I hate explaining to people when I go to events and refuse to eat the catered food (while I pull dinner out of my BIG bag).

Maybe it's too soon... it's only been 3 years.


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Nor-TX Enthusiast

No, I absolutely do not like this disease. It has become an invader of my every daily decision. What to bring to work for lunch? What to eat for dinner, for breakfast. I work at a school and there is always food being brought in by parents and teachers. I sit at staff meeting with others at my table munching cookies, cakes, chips, all kinds of foods. Celebrations here involve wraps, sandwiches, lasagna, crackers and cheese, breaded wings etc. I sit with whatever I have brought for myself and the sweet young things wave their goodies in front of my nose or try to tempt me.

Darn goneit, YES, I would love a piece of that chocolate cake or cookie or whatever they have, but I stick to my own food for fear of getting sick.

I have been gluten free for a year and no, it hasn't gotten easier. I buy all the right food, read all the right documentation/cookbooks/magazines but no, things are still very hard for me.

I am facing age 61 along with a total knee replacement and I am scared about the pain, the immobility, my UC flaring, what I will eat at the hospital, at home when I get back... I will have to adjust my Remicade infusions so that there is a longer time between the last infusion, the surgery and the next infusion.

No I am not happy about this disease. As much as I try, I have been cc'd alot and my will sometimes crumbles. Yes I know I am in charge of my body, and what I eat... but jeez... :huh:

i-geek Rookie

I'm not happy about the disease per se, but since autoimmune diseases run on both sides of the family, I'm very glad to have this one rather than Graves disease, diabetes, or rheumatoid arthritis (all possibilities with my genes). I'm hoping that I caught it early enough to stave off the others.

I'm not happy that I have to watch everything I eat and that when I go out with friends I often have to bring my own food while they chow down (and then explain why to everyone), but I'm happy that I can actually go out with them at all instead of being stuck at home with migraines, GI problems and intense fatigue.

Sure, some nights it's really annoying not to be able to stop and grab a pizza for dinner if I don't feel like cooking. But...it's nice to have the energy to cook once again since I always used to enjoy it.

I'm very happy that my usual severe seasonal allergies are now lessened to the point that I can use OTC meds sparingly, if at all. And I'm thrilled to be able to eat dairy again (full serving of ice cream last weekend without a lactase pill and no illness = VICTORY).

Looking for answers Contributor

For the most part, it's become such a way a life that I don't think much about it. Yes, I live very differently than other people my age, but oh well! I do HATE having it when I travel. I also can't eat dairy, nuts or eggs. Getting food in other parts of the world or rural areas in no easy feat and I often get very ill on vacation and come back with acne, bloat and general malaise for weeks.

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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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