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It's Feeling Better The Best Way To Go?


alissa

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alissa Rookie

Just reading some the the topics.... it's funny how family members that have stomach problems and "D" , pretty much all symptoms of celiac will not ask to be tested. I have been gluten-free for the past two years and always had stomach problems as per the rest of my family members on my mom's side. A couple of them are on stomach pills (we all have had galbladder removed) yet none of them have sinced been tested for celiac. I think there is a fear in them that the tests could actually be positve and they would have to go gluten free. I feel finding out and going gluten free has made all the difference. Isn't feeling healthy better than the suffering?


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wowzer Community Regular

Alissa, I'm with you. If you are gluten free and feel better, then why would you eat it? I grew up with a little sister that was diagnosed with celiac at a year old. I'm still trying to figure out if I am. My blood test came back negative. I have had many bouts of strange rashes over the years and I'm wondering if it might be DH. I finally went on the diet a month ago. I have had quite a few improvements in that little amount of time. I do notice if I eat gluten I seem more sensitive to it now. I was using a lip gloss that I didn't realize for about a week. I'm still learning.

Guest cassidy

My mother and I have several family members that we suspect have celiac. We have told them but they don't want to listen. When my mom first told me about it I didn't want to hear anything, but that was only for a day or two. I got tested and went gluten-free right away but at first I was in denial and I didn't want to have to deal with it. Maybe the denial phase lasts longer for some people, especially if they don't live with the celiac and aren't reminded of it often.

Same goes for people who smoke and now have a "smoker's cough" or people who are overweight and have diabetes or joint problems. They could stop doing something they like to make themselves feel better, but most people don't.

Jestgar Rising Star

There's a lot of personal responsibility associated with this disease. Some people accept that easily and others don't.

kbtoyssni Contributor
There's a lot of personal responsibility associated with this disease. Some people accept that easily and others don't.

I agree. It seems like most people have to be very sick before they seek answers. If you just feel a little tired or get a bit of a stomach ache every now and then, it's not worth giving up all that yummy food. Now if you were throwing up after every meal and were too exhausted to get out of bed, you might reconsider how badly you want that food.

jlinc Rookie
There's a lot of personal responsibility associated with this disease. Some people accept that easily and others don't.

I agree. I think that modeling good behavior is the only way to teach. If I take care of myself, people in my family are more likely to, as well. I've found that's been true for several people I'm close to.

I don't like to "educate" people unless they ask me.

Sometimes I feel compelled to say something, like to my parents about my mom's persistent rash (sure looks like DH to me!), but if they don't listen, I have to be satisfied with having tried. Nagging is something I don't like when it's done to me, and I don't want to do it to anyone else, either.

Josh.

blueeyedmanda Community Regular

My mom has "D" all the time so if we are going shopping or anywhere she will not eat or drink. If we go to eat out, she won't have any coffee or drinks cause she says that is what causes her problems. She also sometimes blames herself for worrying. I love her to death but I know what her problem could be...gluten! She is 65 and I don't see her testing or changing her diet. I guess by now she probably feels like why bother. I am not going to be the one to push her. The frustration is not worth it.


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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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