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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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    • Levi
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By Levi · Posted

      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
      Oats gluten free?

      By Lori Lavell · Posted

      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
      Oats gluten free?

      By Scott Adams · Posted

      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
      Oats gluten free?

      By trents · Posted

      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.
    • Lori Lavell
      Oats gluten free?

      By Lori Lavell · Posted

      In fact ALL grains contain different forms of gluten that go by different names. Corn contains Zein and Rice contains Orzenin. We all need to realize that a very small amount of any of these grains can cause continued systemic inflammation which is not optimal for allowing the body to heal itself.  
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