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Introduction


katecopsey

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katecopsey Newbie

Having found you, I thought I would introduce myself, before I pepper the board with comments!

I was diagnosed, the traditional way, as celiac in the 60's when not much was available in England. We moved to the states in the early 80's to find even less over here! I was very active in the Celiac Sprue Association in the early days, and mentored local people who were new to the diagnosis. Kids came along and as none of them had gluten problems I became otherwise occupied (having kids does that!).

The last child has Aspergers (there is another hard to diagnose problem - talk of horror stories), so that has taken alot of my energy the last few years too. Ironically he may also be gluten sensitive but until I do a blood test we will not know for sure. He has had so much blood work done for the learning/aspergers problems that I really didn't even think to add that onto it, and now I am reluctant to put him thru it all again just for a formal diagnosis. The only symptom he has is a bloated look sometimes, which I think may be associated with when he eats large amounts of hi gluten things. He is virtually gluten free anyway at home, so we are cutting out all gluten for a while to see what happens. It is interesting though that gluten and cassein free seem to be associated with aspergers/autism too. School starts next week so that will be the problem time - lack of control about what he eats.

After several years of growing herbs, I turned to writing about gardens, then apergers/learning problems and it occurred to me to add celiac problems to that mix. Hence I have been re-educating myself with new developments and statistics. I find it hard to believe that 1:200 have gluten problems as I have only met one other person who was celiac! Are we all closet celiacs?????

If anyone has horror stories about having a young child diagnosed or was daignosed during pregnance and what the symptoms there are, and would like to share them, I would be happy to consider them in articles.

As with aspergers, I have found the doctors extrememly supportive of getting the word out about these subtle but badly diagnosed problems.

I look forward to contributing where I can and reading everyone's posts.

Kate

www.katecopsey.com


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Ursa Major Collaborator

Hi Kate, and welcome to our board.

oceangirl Collaborator
Hi Kate, and welcome to our board.

Hello, Kate,

Welcome to the board!

lisa

Guest nini

Hi Kate, welcome to the board, I too am writing about Celiac... I've been writing articles for my local health food co op for several years now, and am finally in the process of working on a book

TinkerbellSwt Collaborator

Hello there Kate!

Welcome!

ebrbetty Rising Star

welocome to the board :D

schuyler Apprentice

Welcome Kate!


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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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