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If You Could Only Use A Paragraph To Describe Celiac Disease


MRM

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MRM Apprentice

i'm getting closer to an official diagnoses for my son. his GI doc is counting on his blood work to come back positive this week. i plan on doing any necessary testing to have a diagnoses. we'll also be testing my daughter and i may pursue a biopsy for me since my blood work came back negative. once that happens i will need to educate family on our new life style.

if you had to tell someone who knows nothing about celiac disease how it works and why you can't have gluten, what would you say?


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Bobbijo6681 Apprentice

i'm getting closer to an official diagnoses for my son. his GI doc is counting on his blood work to come back positive this week. i plan on doing any necessary testing to have a diagnoses. we'll also be testing my daughter and i may pursue a biopsy for me since my blood work came back negative. once that happens i will need to educate family on our new life style.

if you had to tell someone who knows nothing about celiac disease how it works and why you can't have gluten, what would you say?

Great Question!!

I would say this "Celiac is an Auto-Immune disease that effects my body's ability to digest gluten products effectively. Auto-Immune means that anytime I eat gluten products my body tries to fight itself and damages my small intestines in the process. The only way for me to feel better is to not eat or drink anything that contains gluten. Gluten can be found in all kinds of places, but comes from Wheat, Rye, Barley, and in some people oats. Even the smallest amount of one of these products is enough to set off an attack, so I must be VERY careful about what I eat."

That kinda sums it up in a quick answer, but that may lead to more questions from the person that you are talking to. If they ask for more details educate them, that is the best way for us to protect ourselves from CC or accidently glutening.

Good Luck with the tests and hopefully you will find your answer!

Melanie1330 Newbie

i'm getting closer to an official diagnoses for my son. his GI doc is counting on his blood work to come back positive this week. i plan on doing any necessary testing to have a diagnoses. we'll also be testing my daughter and i may pursue a biopsy for me since my blood work came back negative. once that happens i will need to educate family on our new life style.

if you had to tell someone who knows nothing about celiac disease how it works and why you can't have gluten, what would you say?

Good question! I would say that it is an autoimmune disorder that is triggered by gluten, a protein found in wheat, barley, rye. When an individual with celiac disease ingests gluten, it triggers the immune system to attack, and damage the lining of the small intestine (or the villi). This damage prevents the person from obtaining the proper nutrients from food, and left undiagnosed, can lead to malnutrition, other autoimmune diseases, or cancer (just to name a few). celiac disease is very difficult to diagnose, largely because there are over 300 symptoms that can be related to the disease. One individual may have extreme rashes, another have stomach problems, another depression or anxiety, and yet others may have no symptoms at all. Even when symptoms are not present, celiac disease continues to damage the body each time gluten is ingested. The only cure for celiac disease is a strict gluten-free diet. Once on the diet, most patients are able to reverse the damage done to the small intestine (if caught early enough), and symptoms subside almost immediately. celiac disease is different from any other autoimmune disease because it is known what triggers it (gluten), and because once the source is removed, the body most often can reverse the damage and heal itself.

So will you give me a grade? It was a helpful question to think about because it is difficult to explain to others. Let us know how it goes for your son, yourself, and the rest of the family.

tarnalberry Community Regular

My short description:

"Celiac is an autoimmune condition in which gluten causes my body to produce antibodies that attack my intestines. That makes me feel crappy for a week."

(For the "don't even suggest eating gluten to me" shock value, since I'm pregnant, I would add "According to recent research, those antibodies also attack the placenta, so I'm not about to consider risking anything with gluten.")

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    • Scott Adams
      Your doctor is most likely correct here, and if you had high tTg-IGA and villous atrophy you likely have celiac disease and need to be gluten-free. If regular small amounts of gluten get in your diet, it will prevent recovery. Eating out in restaurants is the primary source of such contamination.
    • Scott Adams
      Mostly trial and error and noticing the effects of the supplements over time. It's important to look at the bottom of my original post in this thread to see nutrients that can be toxic in higher does, especially over long periods of time.
    • Scott Adams
      As @trents mentioned, removing gluten if you have celiac disease would be key to villi recovery, and if you still are having issues trying to identify other triggers would be the next step, even though the additional intolerances will not likely contribute to villi recovery. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:      
    • trents
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    • ehb
      I am wondering how you developed this supplementation regimen? Was it just through trial and error? Did you base this trial and error on blood tests or symptom improvement? It cost me $300 for the blood tests, so I would prefer not to do those regularly
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