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Kenpo89

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Kenpo89 Newbie

Hi all, I am new to this site and am still trying to figure things out. I was diagnosed with celiac almost a year ago and am still trying to get it under control. I have a few questions but I will ask in some other posts.


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mamaw Community Regular

Hi Welcome to this site.

There are some of the very best people on here who have answers to alot of ???'s.. You will learn alot here... I'm a mentor from Pa . I have just started a support group in my area. If I can be of help to you regarding the best gluten-free foods & help in any of your gluten-free food cravings please feel free to ask me.

blessings

mamaw

Lisa Mentor

Welcome! Feel free to jump in...the waters pretty warm :)

blueeyedmanda Community Regular

Hi and Welcome to the Board! Feel free to ask any questions you might have, someone will have an answer :)

Guest GFinSoCal

A sunny California Merry Christmas to all. I am going to the GI doctor for follow up next Wednesday. I was diagnosed with DH in Sept this year, with a positive biopsy. Since then, my first bloodwork showed an IgG of 179. I was just tested again after being 3 months gluten free and my IgG is down to 107. I know the range should be less than 9. My IgA is 24. I just had all the xrays done this week (UGI & small bowel). My concern is, why would I need the biopsy done of my intestines, when I have the positive biopsy of DH and all of the bloodwork shows Celiac? I just want to get some opinions from you before I speak with my doctor about this.

By the way, I felt really bad for several days when I went gluten free. Severe stomach cramps, stayed in bed all day, etc. Is this normal?

Thanks so much for any advice or input, since I am so new with this disease.

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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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