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Pitfalls Of Self-diagnosis


JerryK

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TestyTommy Rookie

Those of you calling celiac a 'choice' are using a ridiculously broad definition of 'choice'. Sure, we all have a choice of what we put in our mouths. No one follows me around and tasers me if I eat gluten. And there are morons out there who would rather have their intestines destroyed than give up cookies.

If I eat gluten I get sick. That's not a choice.


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darlindeb25 Collaborator

Choice, alternative, option, preference all suggest the power of choosing between things. Choice implies the opportunity to choose: a choice of evils. Alternative suggests that one has a choice between only two possibilities. It is often used with a negative to mean that there is no second possibility: to have no alternative. Option emphasizes free right or privilege of choosing: to exercise one's option. Definition from a dictionary!

Yes, choosing to be gluten-free is up to us, the lesser of 2 evils. Those of you calling celiac a 'choice' are using a ridiculously broad definition of 'choice'. Call it whatever you want Tom, I made the choice to go gluten free and I chose to live this lifestyle for the rest of my life. When you are faced with a disease, you must choose to live or give up, I choose to live my life to the fullest I am able.

I did not choose to be celiac, yet I do know in having this disease, the person I am has changed. I am much more understanding with people who hurt, I now know that pain doesn't have to be visible to others. I am always willing to help another with their problems, always ready to give the best advice I am able to give. I choose to live this lifestyle and not be angry that I have a disease. It is what it is and I choose to be thankful that I found out what was wrong with me.

Jestgar Rising Star

Nicely put.

TestyTommy Rookie

I don't follow how calling celiac a disease rather than a choice is equated with giving up or being angry. I haven't knowingly consumed gluten since I found out that I'm a celiac. Obviously, having a disease like this is going to change anyone afflicted with it. But if I truly had a choice, I could eat pizza and drink beer. I can't.

Maybe what we're really talking about is acceptance vs. denial.

Kaycee Collaborator
But if I truly had a choice, I could eat pizza and drink beer.

And you chose not to eat the pizza and drink the beer.

Cathy

darlindeb25 Collaborator

Thank you Cathy and Jestgar.

Yes Tom, you choose not to eat pizza and beer, no one is forcing you, it is a choice you make. I never said celiac is a choice, not a disease. I said, I have celiac disease and i choose to change my lifestyle to accomodate my needs. I am not twisting the meaning, you are. It is the difference between acceptance and denial. I have accepted the fact that I am celiac and will be for the rest of my life AND, I have made a lifestyle choice in living the best gluten-free life I can. Not eating pizza and beer is not the end of your world. You can still have pizza, my daughter loved my gluten-free pizza, and you can still have gluten-free beer. I can't. I can't have grains, any of them, I can't have any alcohol, it all makes me ill. I have had to give up so many of my favorites and it will always be my decision, my choice as to how healthy I can be--it's up to me to take care of me and make the best choices for me.

None of us want a disease, yet it is our choice as to how we handle the fact that we do have one or more. It's up to us to make that choice.

Fiddle-Faddle Community Regular

I don't know why you all can't just agree that there are different ways to look at things. Some of us feel that we have a choice; some of us feel that we have no choice. (And I feel both ways, though not usually simultaneously.)

Can those of you who feel like you have a choice please stop beating up those who do not or cannot see it that way? Just because it works for you doesn't mean it works for everyone. Please CHOOSE to accept that others may function and/or experience things differently from you.


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Jestgar Rising Star

Fiddle-Faddle,

Sorry you're feeling a little ganged up on right now, but I don't think it's meant that way. My point, and I think Deb's, is that you get what life gives you, but how you choose to react to it is up to you.

darlindeb25 Collaborator

Exactly Jestgar, exactly.

Kaycee Collaborator

Fiddle Faddle

We do not have a choice with the disease, I agree.

I will never ever choose, let alone think to have a slice of bread again. I made that choice when I was diagnosed, as I said to myself "well I have had my last sandwich!" I think now that my choice has been made and I do not have to think about that anymore, it is a done deal. Maybe that is what it is, the choice has been made by me, so no more choices ever to be made on that particular subject.

But then I am still faced daily or weekly with choices of whether to have that potato crisp or the spread that may have been manufactured on the same machinery that might have processed gluten. But that is being pedantic, everybody has a choice of what they eat whether they are gluten free or not. It is just our choices are less. I would rather be faced with less choice, than too many as I would eat everything.

Cathy

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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