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Gluten Free Poll


twe0708

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Roda Rising Star
How many years have you been trying to live a gluten-free life?

How often or many times do you think you've been hit with wheat?

Anyone been diagnosed with cancer, kidney or liver problems?

Have you ever said "what the hell" and just ate something you aren't supposed to?

What is your age?

One year

Wheat in particular at least once. I ate an otherwise gluten free macaroon that a friend of mine placed on top of a brownie. It was only a month after I went gluten free and she tried really hard and I ate it so I would not hurt her feelings. Won't do that again. I have been hit with either cc or barly malt in "natural flavors" once by not verifying. I tried gluten free oats after 7 months gluten free in some cookies I made. I had a horrible reaction from them so I am even gluten free oats free.

No.

Sort of. My husband had some cheese that had beer in it. I took a very small nibble. I did not have any problem from it, but really decided that the cheese was not good! :lol: I ate some tortillia chips from a local mexican restraunt that someone had left over at work. They were more than likely fried in contaminated oil and who knows if they had wheat in them. Learned my lesson because the chips gave me wicked heartburn.

I am 36 years old.


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Switch2GF Rookie

How many years have you been trying to live a gluten-free life?

Diagnosed 5 years ago- officially gluten-free for 1 year. Had solid spurts of gluten-free during those first years, but always eventually relapsed.

How often or many times do you think you've been hit with wheat?

I'd say once every month or two I accidentally am glutened, almost always when out to eat. Honestly, if you eat out, it is going to happen whether you know it or not.

Anyone been diagnosed with cancer, kidney or liver problems?

Nothing yet, thankfully!

Have you ever said "what the hell" and just ate something you aren't supposed to?

Once in the past year... avoiding an awkward situation(long story).

What is your age?

Male - 25

(Just had to put male, since I am finding I am in the far minority in the active gluten free online community :D )

Karrin Rookie

How many years have you been trying to live a gluten-free life? Started June 2009

How often or many times do you think you've been hit with wheat? Probably once a month in small cc'd doses.

Anyone been diagnosed with cancer, kidney or liver problems? Just got over a kidney infection.

Have you ever said "what the hell" and just ate something you aren't supposed to?

Yes, homemade pumpkin custard that I suspected might have been cc'd.

What is your age?

27

foodiegurl Collaborator

How many years have you been trying to live a gluten-free life?

Since March 2009

How often or many times do you think you've been hit with wheat?

three time, I believe

Anyone been diagnosed with cancer, kidney or liver problems?

I had severe-pre-eclampsia and HELLP when I was pg (pre-diagnosis), and it effected my liver and kidneys while pg, but corrected itself after delivery.

Have you ever said "what the hell" and just ate something you aren't supposed to?

No way!!

What is your age?

37

jenngolightly Contributor

How many years have you been trying to live a gluten-free life?

2

How often or many times do you think you've been hit with wheat?

Too many - we don't eat out anymore... uh, well, except last weekend when we went to Boston Market and YES I got glutened dammit.

Anyone been diagnosed with cancer, kidney or liver problems?

No (but yes to osteoporosis and neurological issues and...)

Have you ever said "what the hell" and just ate something you aren't supposed to?

Never

What is your age?

39

gettinbetterbaby Newbie

How many years have you been trying to live a gluten-free life? One year and a couple of months.

How often or many times do you think you've been hit with wheat?

Maybe 10 or more times since the start. The learning curve was steep, and so it happens less often now, but still way too often (always when eating out). The longest I've felt well is 23 days in a row, which was phenomenal. Before that it was nine days.

Anyone been diagnosed with cancer, kidney or liver problems?

Two or three years before becoming gluten-free I was sent to a kidney doctor (nephrologist), for odd blood work; I was "dumping" potassium, magnesium and salt. He couldn't determine the cause, wondered if I was vomiting or taking laxatives: No. Weeks later, after consultation with colleagues, he diagnosed Gitelman Syndrome or Bartel's Syndrome, which is just a collection of symptoms. He was puzzled. I was too. I had mentioned stomach aches too, as I have over the past twenty years to all doctors with whom I've had contact. That led nowhere as always. So I treated the deficiency with magnesium supplements and noticed unexpectedly my stomach felt better for awhile, which was a bonus. I eventually put all this together myself, later, with much help from all of you on this forum who I'd like to thank here. I have learned so much.

Have you ever said "what the hell" and just ate something you aren't supposed to?

Never, but I've eaten around things I'm not supposed to eat, that was touching, and have most recently learned not to do this.

What is your age?

44

luvs2eat Collaborator

How many years have you been trying to live a gluten-free life?

7 years

How often or many times do you think you've been hit with wheat?

In the beginning, when I thought I was being gluten-free, but was making tons of mistake... lots. Now... maybe once or twice a year??

Anyone been diagnosed with cancer, kidney or liver problems?

Nope

Have you ever said "what the hell" and just ate something you aren't supposed to?

ONCE... when I'd been gluten-free for about a year, I scarfed down a huge slice of homemade bread w/ butter and nothing happened!! I had this idea that I could "plan" a cheat... maybe monthly. But... the longer I was gluten-free, the more sensitive I became and now I would NEVER, EVER say "what the hell"... EVER.

What is your age? 56. Two of my 3 daughters have been diagnosed too.


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spicenator3000 Apprentice

Trying to live a gluten free life for 5 years, had it since childhood and didn't know (lived with pain/problems).

Some how I get gluten about every month now, getting the diet and other products under control takes a long long time. Takes me about two weeks to get back to normal digestion (if I do my procedure of recovery).

Diagnosed with cancer at age 20-Non-Hodgkin's Lymphoma (about the size of a grapefruit in between my heart and lung-acted like heart attack symptoms). Also had malnutrition problems from childhood still lingering, cysts, and minor issues that come and go. Family has had many cases of cancer, liver disease, kidney, reproductive and neurological issues. Seems that those people before me had celiac disease and never were diagnosed. This leads me to believe it gets worse every generation that is not taken care of.

Absolutely have just ate stuff I wasn't sure was gluten-free. Typical human nature to rebel against what I know is right and wrong.

I am now 25, will be 26 in 3 months. So 6 years cancer free.

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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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