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Don't Believe It


Carolina Girl

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Carolina Girl Newbie

I was told on Monday of this week that I have a classic case of Celiac Spure but I find it hard to believe. I had diaherria for five months but when my regular physician changed my blood pressure meds the diaherria stopped. Gastro doctor did colonscopy and endoscopy and said that the picutres show classic Celiac Sprue. I have NO symptons - none. He wants me to go on a gluten free diet and have my adult children tested for Celia. No one else in my family has ever have Celiac or had any symptons of Celiac. The doctor told me that I could get a second opinion but that he would guarantee that the second opinion would also be Celiac. Am I just being stubborn or what?


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Jestgar Rising Star

If you want to be sure, then get the second opinion. It won't hurt, and maybe it will hep convince you one way or the other.

lmvrbaby Newbie

I too had absolutely no symptoms, not even the D. I ended up with gall bladder problems and through all of that testing I was told I had it from the biopsy that was done. Later I had the blood work done to confirm what the biopsy had shown. Some people have no symptoms until something else happens. I guess it depends on the person. Also no one else in my family has nor heard of Celiac until I was diagnosed. Now 3 of my 4 boys have been tested and only the oldest who is also diabetic has it. So good luck and get the second opinion. Not all doctors are right at first chance.

happygirl Collaborator

You don't need symptoms to have Celiac. Symptoms aren't what Celiac is. Celiac is defined by the damage to the villi by the presence of gluten.

Open Original Shared Link is a good site with many resources. It is one of the best Celiac practices in the country.

"Characteristics of celiac disease

It is unclear whether celiac disease is an autoimmune disease or an inflammatory condition with autoimmune aspects. The clinical classification of celiac disease is based on the presence of gastrointestinal symptoms. Symptomatic, active or classical celiac disease refers to presentations with diarrhea, with or without malabsorption, whereas in asymptomatic or silent celiac disease gastrointestinal symptoms are lacking or not prominent even though extra-intestinal symptoms may be present. The majority of individuals with celiac disease are considered to have the silent form."

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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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