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Thoughts on Lab Results/ Diagnosis


AnnaG

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AnnaG Newbie

Hi All- 

I wanted to get some opinions on a potential Celiac diagnosis. I have pretty frequent lower abdominal pain, and recently broke out in a SUPER itchy rash on my wrist that my doc diagnosed as Dermatitis Herpetiformis. 

Blood results: 

abnormal but weak IGE (true allergy) to wheat 

AntiGliadin IgG @ 15 (low, but exist)

Tested positive for both DQ2 & DQ8

I think I clearly need to avoid gluten, but how do I know if I have celiac? A slight gluten allergy and celiac require totally different lifestyle changes... 

Thanks! 

 


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cyclinglady Grand Master
(edited)

An endoscopy to obtain small intestinal biopsies or a skin punch biopsy are the gold standards for obtaining a celiac disease diagnosis.  Your blood test result is not common and just having the celiac genes is used to rule out but not diagnose celiac disease.  That is because 30% (that is a ton of people) carries the genes but only a few of those go on to develop celiac disease or DH.  Allergy testing is iffy.  Did you also have the TTG IgA, TTG IgG and DGP IgA tests?  Did they test your Immunoglobulin A?  

I think you need a second opinion and more research.  It is obvious that you are not sold on this diagnosis.  Get to a dermatologist or Gastroenterologist.  If you decide to go this route, stay on gluten.  This is critical as all celiac disease testing, even the skin biopsies, require you to be on a full gluten diet.  

Start here to learn more:

https://celiac.org/about-celiac-disease/related-conditions/dermatitis-herpetiformis/

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

https://celiac.org/about-celiac-disease/screening-and-diagnosis/diagnosis/

https://www.healthline.com/health/allergies/rast-test-vs-skin-test#when-to-seek-help

Edited by cyclinglady

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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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