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Son Does Have Celiac

The Horticulturalist

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The Horticulturalist Apprentice
The Horticulturalist
Posted

Previous thread here

We had the biopsy on Monday, it went well. the surgeon saw "patchy moderate erythematous mucosa without active bleeding in the duodenal bulb" He said it was highly suggestive of celiac, or as the report said "high likelihood of duodenitis."

He gave us a copy of the endoscopy report to take home, it had photos on it (which I will post if I can figure out how to do upload them) of the duodenal bulb, you could see the red patchy spots in that area, the duodenum beyond that looked normal, he biopsied that also.

Just had a phone call from the clinic and he has celiac, it was Marsh 3a.I have asked her to fax me the report so that I can see the details. They are also going to fax me an order for his brother to have celiac bloods checked, that will save me a trip to the pediatrician at least.

Very pleased with the care we received, thankfully very different to the debacle I had to endure.

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carecare Enthusiast
carecare
Posted

Now at least you can keep your son healthy....always good to have answers. Best of luck with your son's new diet. :)

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    • par18
      Is it gluten?

      By par18 · Posted

      Thanks for the reply. 
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      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
      Is it gluten?

      By Scott Adams · Posted

      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.
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