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How Do You Explain Celiac To Others?

Walter S

By Walter S
in Coping with Celiac Disease

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Walter S Explorer
Walter S
Posted

Is there anything out there (a good book or website) that can help me to explain what Celiac is like to live with to my family? They just don't seem to get how tough it can be. If I get tired or weak or need a break thay get very impatient and just don't seem to get it! Thanks in advance for any input!

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Crystalkd Contributor
Crystalkd
Posted

I'm in search of one of those too! lol Mine laid off a bit when they saw a reaction first hand and realized how quickly I go down hill and how long it akes me to recover. There are other who simi get it but don't understand CC and why my food really needs to be fixed seprately.

Guest micah
Guest micah
Posted

Hi Walter,

Here are a couple of interesting sites that help paint a picture of the seriousness of celiac and hard it is to deal with it.

Open Original Shared Link

Open Original Shared Link

Micah

Teacher1958 Apprentice
Teacher1958
Posted
Is there anything out there (a good book or website) that can help me to explain what Celiac is like to live with to my family? They just don't seem to get how tough it can be. If I get tired or weak or need a break thay get very impatient and just don't seem to get it! Thanks in advance for any input!

I tell people that I have a genetic inability to digest the gluten protein. I also tell them that it's like a severe peanut allergy in that even a tiny amount can set things off. I tell them that because of this, if I eat gluten, I am at a much higher risk for other disorders, some of which may eventually be fatal. Truthfully, I learned over the years with other issues that family members can be some of the most damaging and hurtful people to a person's psychological well being. I don't feel obligated to spend time with them anymore.

kbtoyssni Contributor
kbtoyssni
Posted

I also like the book "Dangerous Grains" if you want to emphasize the seriousness of the disease and all its complications.

Rosewynde Rookie
Rosewynde
Posted

The way I explained how I felt was to ask if they'd ever had a flu bug that drained all their energy. Where if you moved your arm or leg an inch it felt like you just ran a marathon. Most people can relate to that. I also liked how one person described getting glutened as being just like food poisoning.

pellegrino Apprentice
pellegrino
Posted

I too like the book Dangerous Grains and recommended it to my family members. I doubt they've read it yet, since I was just diagnosed, but I hope they do. I also read Celiac Disease: A Hidden Epidemic after I was diagnosed. I would recommend that more for the person WITH celiac.

I think Dangerous Grains would be better for family members to read, because I think the way they explain things would be easier for others to understand. The authors also talk a lot about non celiac gluten sensitivity, which they believe is far more common than celiac disease, and is also often overlooked.

Even if your family members are tested and don't have celiac, Dangerous Grains might make them think twice about eating gluten, and about whether or not they have a sensitivity to gluten, even if they don't have celiac disease. And of course it will help them understand what you're going through, and the diseases you're more susceptible to as a result of having celiac disease.

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    • Dizzyma
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      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
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