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Does Anyone Like Being Celiac
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35 posts in this topic

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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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

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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.

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^^ 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.

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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

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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

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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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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:

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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).

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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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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
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