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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 would like to add the DH aspect of celiac--it is rarely mentioned and it is also real and dangerous. I've seen comments to the contrary..." tissues and TP will not hurt you unless unless you eat it"...WRONG!!!

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    I'm 41 and just diagnosed with celiac disease. My intestinal and overall health has declined over the past 6 months. Blood tests have revealed the allergy and I'm to undergo an upper endoscopy shortly. I thought gluten free was a fad until I realized that the disease has seriously has affected my quality of life.

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    remember it is not an allergy!!!! I finally know why soaps, lotions, makeup and all things that go on skin made my body react not like an allergy but very angrily. the laundry soap and dish soaps even have to be free of wheat barley and rye byproduct.

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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 . . .

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    Celiac disease is not an allergy. I do not carry an epi-pen. I do not break out in hives or start sneezing. I do not get ill immediately if I accidentally ingest a minute amount of gluten (from cross-contamination). Celiac disease is more insidious than all that.

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    I would like to add the DH aspect of celiac--it is rarely mentioned and it is also real and dangerous. I've seen comments to the contrary..." tissues and TP will not hurt you unless unless you eat it"...WRONG!!!

    Perhaps you could tell us what the acronyms DH and TP are? I have no idea what you are trying to say.

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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!

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    I'm 41 and just diagnosed with celiac disease. My intestinal and overall health has declined over the past 6 months. Blood tests have revealed the allergy and I'm to undergo an upper endoscopy shortly. I thought gluten free was a fad until I realized that the disease has seriously has affected my quality of life.

    To Robert:

     

    Celiac disease is not an allergy, altho there is a condition called "Wheat Allergy". That is definitely classified as an allergy. Celiac disease is an autoimmune disease. My advice to you is to join a support group in your area for guidance and support as you learn to live with this disease.

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    Many gluten-free products can still contain gluten make sure it's certified and eat whole real foods to heal. Also if someone has a intolerance to gluten same rules apply!

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    I'm 41 and just diagnosed with celiac disease. My intestinal and overall health has declined over the past 6 months. Blood tests have revealed the allergy and I'm to undergo an upper endoscopy shortly. I thought gluten free was a fad until I realized that the disease has seriously has affected my quality of life.

    Robert, I have been where you are and it's hard, but it will get better as you come to better understand the diet and it's limitations. Your health should improve, but that will take some time. Do you need the endoscope if celiac is confirmed? Now a days the scope is no longer the gold standard if symptoms, blood work, etc are at certain levels.

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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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