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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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      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
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      Fruits & Veggies

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      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
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      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
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      26F!
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