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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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      ok thanks for your advice. But my question was what happens when someone you know in a house is cooking pasta or toast that's flour Airbourne without eating.?
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    • knitty kitty
      symptoms.

      By knitty kitty · Posted

      Yes, except for the most sensitive, cross contamination from airborne gluten should be minimal. Highly sensitive people may have nutritional deficiencies.  Many times their bodies are in a highly inflamed state from Celiac, with high levels of histamine and homocysteine.  Vitamins are needed to break down histamine released from immune cells like mast cells that get over stimulated and produce histamine at the least provocation as part of the immune response to gluten. This can last even after gluten exposure is ended.  Thiamine supplementation helps calm the mast cells.  Vitamin D helps calm the immune system.  Other B vitamins and minerals are needed to correct the nutritional deficiencies that developed while the villi were damaged and not able to absorb nutrients.  The villi need vitamins and minerals to repair themselves and grow new villi. Focus on eating a nutritional dense, low inflammation diet, like the Autoimmune Protocol Diet, and supplementing to correct dietary deficiencies.  Once your body has the vitamins and minerals needed, the body can begin healing itself.  You can have nutritional deficiencies even if blood tests say you have "normal" blood levels of vitamins.  Blood is a transport system carrying vitamins from the digestive system to organs and tissues.  Vitamins are used inside cells where they cannot be measured.   Please discuss with your doctor and dietician supplementing vitamins and minerals while trying to heal.  
    • trents
      symptoms.

      By trents · Posted

      Should not be a problem except for the most sensitive celiacs. The amount of gluten that would get in the air from cooking alone has got to be miniscule. I would be more concerned about cross contamination happening in other ways in a living environment where others are preparing and consuming gluten-containing foods. Thinks like shared cooking surfaces and countertops. And what about that toaster you mentioned?
    • knitty kitty
      Newly Diagnosed

      By knitty kitty · Posted

      Hello, @NCalvo822, Blood tests for Celiac Disease test for antibodies our bodies make in response to gluten exposure.  These Tg IgA 2 antibodies mistakenly attack our own bodies, causing problems in organs and tissues other than just the digestive tract.  Joints can ache, thyroid problems or the pancreas can develop.  Ataxia is just one of over two hundred symptoms of Celiac Disease. Some people with Celiac Disease also make tTg IgA 6 antibodies in response to gluten exposure.  The tTg IgA 6 antibodies attack the brain, causing ataxia.  These tTg IgA 6 antibodies are also found in people with Parkinson's disease, though they may not have Celiac Disease.  First degree relatives (parents, siblings, children) of those diagnosed with Celiac should be tested as well.  Celiac is genetic.  Your mom and sister should be tested for Celiac, too!   Definitely a good idea to keep to a gluten free diet.  
    • knitty kitty
      symptoms.

      By knitty kitty · Posted

      @Rebeccaj,  When you smell toast or pasta cooking, that means that particles of that food are floating around in the air.  Airborne gluten can then be inhaled and swallowed, meaning the food particles get into your digestive tract.   If you're careful to avoid gluten and are still having symptoms, those symptoms could be caused by vitamin deficiencies.  
    • Rebeccaj
      symptoms.

      By Rebeccaj · Posted

      ok thanks for your advice. But my question was what happens when someone you know in a house is cooking pasta or toast that's flour  Airbourne without eating.?
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