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  • Jefferson Adams
    Jefferson Adams

    5 Things People With Celiac Disease Need You to Understand

    Reviewed and edited by a celiac disease expert.

    Caption: Photo: Wikimedia Commons--enoch lau

    Celiac.com 06/12/2014 - Here are five things people with celiac disease need regular folks to know about celiac disease:

    1. Photo: Wikimedia Commons--enoch lauWe are NOT on a Fad Diet—Celiac disease is not some vague, make-believe condition. Celiac disease is a potentially serious immune disorder that, if left untreated, can lead to a very deadly types of stomach, intestinal, and other cancers. Just because a bunch of people seem to think that gluten is the new high fructose corn syrup, doesn’t mean that I’m one of them. Remember, for people with celiac disease, gluten is no joke, and avoiding gluten is the only way to stay healthy.
    2. We Won’t Be Getting Over It—Currently, there is no cure for celiac disease, and the only treatment is a gluten-free diet. That’s the only way to avoid the gut damage, lower risks for other types of auto-immune conditions, and minimize the risk of various types of cancer associated with celiac disease.
    3. Celiac Disease is a Serious Condition—Since the effects of untreated celiac disease unfold slowly over time, it’s tempting for some people to look at celiac disease as a minor inconvenience. However, it’s important to understand that celiac disease is a potentially serious autoimmune disorder that, if left untreated, can leave people susceptible to other autoimmune conditions, and to deadly types of stomach, intestinal, and other cancers. 
    4. A ‘Little Gluten’ Might Hurt Me—There’s no such thing as ‘a little gluten’ to people with celiac disease. Gut damage happens with as little as 20 parts of gluten per million. That is a microscopic amount. A 'gluten-free' diet means no gluten. Period.
    5. When in Doubt, Ask—If you’re not sure if I can safely eat a certain ingredient, or a certain food, just ask. Figuring out what is or is not gluten-free can be tricky, even for me. So, it's best to ask if you're not positive.

    Can you think of others?

     


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    I am so glad to learn more. By choice I am gluten free due to the wheat today being GMO .

    But ... wheat isn't genetically modified ... it has been hybridized beyond recognition, but is it not genetically modified like corn and soy and sugar beets.

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    Another outstanding piece of writing, Thanks Jefferson... I shared it on FB... my husband and I make sick "jokes" about me"getting over" being celiac .... but it is true, people do not understand it at all, and having people not gluten intolerant on a gluten-free diet, makes it hard. Thank you so much!

    Hilary, you are SO right about "people not understanding it" but what's worse, in my opinion is the disservice brought on by "trend setters" that think they will lose weight on a gluten-free "diet"..yes, they think it's just the newest diet craze!, and because of that, people do not take celiac DISEASE seriously. This affects how we are treated in restaurants (as the waiters/waitresses and chefs even,may not take as many precautions), how we are treated with friends and relatives who just can't get it through their head that this is an autoimmune DISEASE!! Not a diet! I like that the word is finally getting out about gluten-free items and the products they sell are much better than they were even 5 years ago, but...the above mentioned gripe I think just sets us back a bit. It's bad enough that people don't understand celiac, or the popular phrase "I've never heard of celiac..what is that?" but to now be lumped in with the "gluten-free is a fad diet" crowd is a step back.

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    I am excited! I am excited to have found this web site, that is full of information that will help me understand my disease better and that informs me of the latest products and research in the celiac world. I am very excited about the explosion of over due diagnoses and products available to us. I was diagnosed twenty years ago and only someone in the same boat can understand and appreciate how truly far we have come.

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    I am so glad to learn more. By choice I am gluten free due to the wheat today being GMO .

    Wheat is not GMO. It has been bred to have more gluten, but it is not genetically modified to be resistant to pesticides. There is quite a difference between natural breeding of plants and spicing in bacterial DNA.

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    I would add that having "no symptoms" is not an indicator of "no damage". We tend to think that if one doesn't react in a measurable way, you are ok. However, in the case of Celiac disease 60% of patients are "latent" in that their immune system is reacting but the patient doesn't have recognizable symptoms. Hence, the feeling that this isn't a serious condition . . .

    I agree - this is a very important one to add!

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    I am so glad to learn more. By choice I am gluten free due to the wheat today being GMO .

    Commercial wheat is not GMO. GMO wheat has not been approved for sale in the US. There is some GMO wheat being tested experimentally, but it is not legal to sell it. GMO means protein from a foreign organism has been inserted into the genetics of the plant.

     

    However, wheat has been hydridized, and now has something like 42 chromosomes in it as compared to the the smaller number (16?) found in ancient wheat. Today's wheat is dramatically different than ancient wheat, but it is not GMO, yet. Also, glyphosate (Roundup) is sprayed on many plant crops, including wheat, about a week or so before harvest, to kill off the vegetation and make it easier to harvest the crop. This leaves residues of glyphosate on grain and legume crops when they're harvested.

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    I was 71 when I got diagnosed--went gluten free too late. I already had Hashimoto's thyroiditis and Sjogren's syndrome--both autoimmune diseases which might not be there if I had gone gluten-free years ago. So if you have some gut symptoms and your doc just passes it off as IBS or something else, ask him/her to specifically test you for celiac with a specific serology and maybe even get a biopsy or two.

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    Thank you for the article. I have no symptoms so it is hard even for me to explain why I don't eat gluten other than I think I might get stomach cancer or worse one day. I am one of the lucky ones who found out because of genetics. Otherwise, I would merrily eat loaf after loaf of bread. It's not such a hard diet if one simply eats well and avoids processed food altogether.

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    Now we are getting somewhere. I recently answered a survey and one part I answered to a question, gluten free products carry a lot of additives and derivatives and that is why you will never see these words on the gluten free packets "suitable for coeliacs."

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    But ... wheat isn't genetically modified ... it has been hybridized beyond recognition, but is it not genetically modified like corn and soy and sugar beets.

    dee is correct. Wheat is hybridized beyond recognition, but not GMO.

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  • About Me

    Jefferson Adams is Celiac.com's senior writer and Digital Content Director. He earned his B.A. and M.F.A. at Arizona State University, and has authored more than 2,000 articles on celiac disease. His coursework includes studies in science, scientific methodology, biology, anatomy, medicine, logic, and advanced research. He previously served as SF Health News Examiner for Examiner.com, and devised health and medical content for Sharecare.com. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of the book "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

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