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Grandparents And Celiacs


Guest Zmom

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Guest Zmom

Anyone else have to deal with grandparents who refuse to wash their hands after eating gluten?

Even after my Doctor wrote them a letter? Even when their Grandson asks. They think we are exaggerating and his Grandmother even Grabbed and held my son's hand after eating a piece of bread when he asked her to wash her hands. totally frustrated. Any suggestions?


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KaitiUSA Enthusiast

How rude(if it is on purpose)....I can't believe they would not follow something to help their grandson. This may make them mad but personally I would say..."This can make him very sick and if you can not respect that, as much as we hate to do this, then we will not be allowing him over anymore."

At this point they are blowing it off like its nothing. If they realize that this is serious and if they don't follow it then they won't get to see him then hopefully they would change.

This is just my opinion...there are other ways you could approach it.

Guest nini

Shoot, I have a HUSBAND that forgets to do that...

as far as grandparents go... that's a whole "nuther" can of worms... I don't think they do it intentionally, but they def. expose my daughter to gluten by some of their actions... My mom's house is SOOOOO Not gluten free, even though I've stocked her up with safe snacks and such, they still have an abundance of gluten laden goodies laying around and they will munch them, not wash hands OR MOUTH and will hug and kiss her all the time I'm just wigging the entire time. I feel like I can't relax.

Guest taweavmo3

My parents were alot like that, unitl Emmie got really sick a few weeks ago. They never intentionally gave her gluten or anything, they just didn't understand the seriousness of it. If Emmie broke out in hives or had trouble breathing, it would be easier for them to "get" I think.

Last time Em's spent the night, the next day she was very lethargic, was crying/screaming all day, and wouldn't eat. This lasted for nearly two weeks. So, now they totally get it. They are so good now......she spent the night again last weekend and my parents made a special trip to the store to load up on gluten-free goodies before their outing.

I don't know what I would do if my parents actually refused to comply with washing of their hands.........I guess I'd have to tell them that my kids couldn't come over until they took the disease for the seriousness that it is. My parents didn't do anything intentional, they really just didn't know or they would forget. As hard as it was seeing Emmie so sick, at least it opened my parents eyes to the disease and how much havoc it can cause on such a little body. That was really the only thing that worked.

wclemens Newbie

Okay guys, listen to this...I am Dakota's 60 year old grandma, and it was I who sent away for the $378 spectrum of tests which identified that Dakota has gluten intolerance and allergies to milk and dairy. It was I who spent his first 11 months of life as his primary daycare provider, watching like a guard-dog to make sure he stayed on his diet. Then at 1 year of age his parents put him into preschool and stopped his special diet after a Kaiser doctor gave him a blood test and said he didn't have Celiac. Now I'm keeping him again 1-2 days a week, and can't help but feed him gluten-free, milk and dairy-free foods (I have had the same intolerances since the age of 8).

I am once again creating special foods for Dakota and even leaving them in special containers in the refrigerator at his family's home. I know that no one else in the family realizes that Dakota's eating forbidden foods can have truly drastic effects, but since my symptoms are asthma and wheezing when I eat those foods, they realize that I must stick to my special diet.

It is a day-by-day journey. We must do what we can, no matter how big or small, and these family members are looking ultimately to us for patience, steadfastness, understanding and TOLERANCE. Lord help us to be the examples we can be! I am so glad you are all there. Welda Lou

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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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