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Celiac, Anorexia, Or Both?


MomOfTwins98

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MomOfTwins98 Newbie

I'm new to this forum. My 13-year old daughter was just recently diagnosed with celiac disease. Her blood test was showing the following results:

Celiac Disease Panel

Endomysial Antibody IgA --- Positive ----- Abnormal

t-Transglutaminase (tTG) IgA --- 20 ---------- High

Then, she had the Small Intensine Biopsy done. The Pathology Report has the following note: "The findings are mild, focal and non-specific. Possible etiologies include celiac disease as well as other immune-mediated processes, infection, peptic injury and medications. However, in the appropriate clinical setting, with appropriate serologic findings, these factors are compatible with celiac disease"

Do the above results indicate celiac beyond any doubt? The words "mild, focal and non-specific" are confusing to me...

My D was diagnosed with Anorexia in the beginning of November. She had a lot of classic signs of anorexia (big weight loss, preoccupation with fat content of food, excessive exercise). Once diagnosed with AN, we started refeeding at home using a Maudsley approach. She started eating normally with no problems at all (same amounts as prior to getting sick). Then, as we started increasing the number of calories, she still wasn't gaining any weight. Last week, she started a day program for eating disorders (lost more weight in the preparation for colonoscopy/endoscopy testing), and it became very clear to me that she doesn't quite belong there - unlike other girls, she doesn't have distorted body image, she is eating quite a lot (but refusing some type of foods), not really depressed. Sometime during the process, the pediatrician ordered the above blood test, and based on abnormal results, we met with a GI doctor who later performed the biopsy. Few days ago we received the results of the biopsy, based on which it was concluded that she does have celiac disease. We started the gluten-free diet 2 days ago. Now, I can't stop wondering whether she has anorexia, and if so, will the gluten free diet be helpful with the weight gain. Anyone encountered similar scenerio?


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domesticactivist Collaborator

Those results would have me convinced it's celiac. There are a few other things that can bring up tTG, but it's not common. EMA is highly specific to celiac disease. If she's going to have the endoscopy as well make sure it happens right away or she stays on gluten until it is done.

People thought my daughter had anorexia, but it turned out she just needed the GAPS diet to get her eating again. She used to be so picky (and hated fat, loved sugar!), but the dietary changes helped her sensory processing issues and made a *huge* difference. Now she loves to eat.

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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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