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Starting Dietary Changes


Ab-Normal

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Ab-Normal Rookie

I got "that call" this morning from the doctor's office, confirming that the blood test and biopsy were positive for celiac. At that time, I was scheduled for a bone density test and a follow-up with the gastroenterologist almost a month from now. The person I spoke with didn't mention dietary changes, except to reassure me when I jokingly said, "Goodbye, bread! Goodbye, beer!"

I realize I should probably ask my doctor this, but I thought it couldn't hurt to ask here as well: Should I start eliminating gluten from my diet now that I've received a positive diagnosis? Or should I wait for official notification? To be honest, I'm thinking "woo-hoo! four more weeks of food that I'm used to!" but my husband was dubious when I put it to him in that fashion. (A little history: I ended up at the hematologist/oncologist with iron-deficiency anemia that didn't respond to oral supplements; the hematologist referred me on to the gastroenterologist for colonoscopy + upper endoscopy; endo found scalloping of the duodenum, and here I am. Since my guts haven't obviously been a problem, I'm more inclined than I probably should be to just "keep on eating".)

Thanks in advance,

Norma


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home-based-mom Contributor

Hi, Norma, and welcome to the forum. You will learn a lot here.

Just because you are not experiencing GI symptoms does not mean that gluten is not doing its insidious damage. You really should go off the gluten ASAP now that you have your diagnosis. Shop around the edges of your grocery store for fresh and frozen meats and produce. If you need help adjusting, read, read and read some more. Do a forum search and if you don't see an answer, post your question and someone will know!

Ab-Normal Rookie
Hi, Norma, and welcome to the forum. You will learn a lot here.

Just because you are not experiencing GI symptoms does not mean that gluten is not doing its insidious damage. You really should go off the gluten ASAP now that you have your diagnosis. Shop around the edges of your grocery store for fresh and frozen meats and produce. If you need help adjusting, read, read and read some more. Do a forum search and if you don't see an answer, post your question and someone will know!

Thanks! My husband and I had a good discussion about this last night, and he agrees with you. :D Since he's our stay at home parent, and therefore does all the shopping and 99% of the cooking (somewhere I turned into Ward Cleaver, go figure), I feel very fortunate to have his buy-in and enthusiastic support in this.

Ab-Normal Rookie

PS just heard from the PA at the doctor's office, she agrees with you that I should start right away. To the grocery store!

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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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