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Ohhh Jeeze My Friend


w8in4dave

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w8in4dave Community Regular

 Funny lil story , a friend of mine called me yesterday and asked if I wanted to come over for a beer. I told her a couple weeks ago I could not drink beer (she forgot), I told her I could have a drink and that I would bring it. So as we are sitting there talking she asked me about Celiac , I told her again what it was and stuff, She said ohh so after you heal you can have a beer? I said no I can never have a beer (unless Gluten Free) I said this is a diet changing disease and I have got to stay on it forever. By george I think she was going to cry! I said don't worry it is a easy diet. Just eat fresh stuff!! No worries!! She said but what are the Drs. doing about it? I said they don't do anything about it, I do. She said I hope I don't get it , that would be horrible. I said it is not horrible unless I eat Gluten ... I just got a kick out of it so had to share :) 

It may take her a while to wrap her head around it , I wrote it down so she could look it up :) 


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1desperateladysaved Proficient

Nice to have someone that cares!

luvs2eat Collaborator

I've had several situations like this. I was diagnosed very quickly and when people would ask me what the symptoms of celiac disease are I'd say, "Well, unexplained weight loss is one..." and then I'd look down at myself and say, "Um... I didn't get that one! "

 

Another time I was pressured to buy something from a bake sale. I said to the lady, "Would you believe there is not one thing here I can eat?" We had a short conversation about celiac disease and she said, "You poor thing!! What on earth do you eat??" Again, I looked down and said, "Um... do I LOOK like I'm starving?"

 

ha ha ha

w8in4dave Community Regular

Awee yea I was losing weight , I think I have stabilized now, but my other friend does say she better not ever get Celiac because she would just die!! My other friend actually tell me " I cannot believe the Dr's tell you not to eat something and you just don't eat it" I said " Well it's either that or die from malabsorption"  no worries!! :) 

Celtic Queen Explorer

Yeah, when people say to me that they couldn't live without eating wheat I tell them I would rather be a Celiac without wheat than to have Lupus, which is where I was headed before going gluten free. 

w8in4dave Community Regular

Absolutely where my doc kept looking was for was Lupus. There are alot of things I could think of that is worse than Celiac .. I'd much rather have this ,than any of the devastating diseases that there is out there! If I can control with diet , ohh heck yea!! Thank you!! :) 

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    • trents
      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
    • Levi
      When I was first Dg’d I researched like mad. One thing I remember from then, which may have changed with advancement in medical science, is that Coeliac is a first generation disease which means either you or your husband need be Coeliac for your daughter to have inherited it. Far as I know, and I’m not a scientist just a victim, the amount of gluten (wheat, rye, or barley) one consumes does not cause a person to contract Coeliac Disease. So if neither of you as her biological parents have Coeliac then your daughter cannot pass any blame should she contract this horrific disease.     It’s humbling, and sometimes I believe GOD allows such as these autoimmune diseases for those who need it most. 
    • Lori Lavell
      The body reacts to all grain proteins in all grains from my observation. Call it Gluten, Gliadin, which is what they test for commonly, however, I am Celiac and react with dermatitis herpetiformis to corn and the glutenous protein in it is called Zein. They only test for Gliadin. Testing needs to be updated in my opinion. It only take a small parts per million to continuously create systemic inflammation. This is not productive to healing and all grains contain some for gluten like substance. It's called Molecular Mimicry.
    • Scott Adams
      Thank you for sharing your perspective. It's true that many grains contain proteins that are technically classified as "glutens" (like zein in corn and orzenin in rice), but it's important to clarify that these proteins are not the same as the gluten found in wheat, barley, and rye, which contains gliadin and glutenin. These specific proteins are the ones that trigger an autoimmune response in people with celiac disease. For individuals with celiac disease, the primary concern is avoiding gluten from wheat, barley, and rye, as these are the grains scientifically proven to cause damage to the small intestine. While some people with celiac disease or non-celiac gluten sensitivity may also react to other grains, this is not universal and varies from person to person. For most people with celiac disease, grains like corn and rice are considered safe and are widely recommended as part of a gluten-free diet. That said, you raise an important point about systemic inflammation and individual tolerance. Some people may indeed have sensitivities to other grains or find that eliminating additional grains helps them feel better. However, it’s crucial to differentiate between celiac disease, which requires strict avoidance of wheat, barley, and rye, and other conditions or sensitivities that may involve broader dietary restrictions.
    • trents
      I disagree, Lori. Gluten is a particular protein, not a category of proteins. It is found in wheat, barley and rye. Other cereal grains have proteins that resemble gluten to one degree or another but are not gluten. Gluten is gluten. Avenin is avenin. But yes, it is true, that informally speaking, some have used the term "gluten" to refer to the proteins found in these other cereal grains. It's like the term "kleenex" has come to refer to all facial tissues.
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