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How Did I Miss That?


skipper30

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skipper30 Enthusiast

Ok..I am still new to this whole Celiac thing...but how did I miss the whole celiac is considered a deadly disease. I mean...I knew and know how important that it is to follow the gluten-free diet...but I guess that somewhere along the crazy road of just being happy we finally had a dx..that I missed that one. :o


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Smunkeemom Enthusiast

un-treated or undiagnosed celiac can kill, it's very rare that a person who is diagnosed and eating gluten free dies.

Think of it this way, when a celiac eats gluten they can't absorb the food they eat because of the damage to the intestines, basically no matter how much they eat they starve to death.

If you go gluten free and your intestines heal, you can live a normal life, and not starve to death.

plantime Contributor

For a child to have it, in this day and age, can be very serious, perhaps deadly. The risk of contamination, between day care, school, and friends houses, is very high. Perhaps that is why it was considered to be a deadly disease by the Make-A-Wish Foundation.

skipper30 Enthusiast

Thanks for the responses!! I think I just had a paniky mom moment!! :blink: Or a brain fart..and with 4 boys under 6 here....it happens so often!!! I am better now!!

Dallas :D

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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