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Thoughts on Lab Results/ Diagnosis

AnnaG
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AnnaG Newbie
AnnaG
Posted

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
cyclinglady
Posted
(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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    • trents
      EMA Result

      By trents · Posted

      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
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      By Scott Adams · Posted

      This article, and the comments below it, may be helpful:    
    • Scott Adams
      Seeking advice on potential gluten challenge

      By Scott Adams · Posted

      That’s a really tough situation. A few key points: as mentioned, a gluten challenge does require daily gluten for several weeks to make blood tests meaningful, but negative tests after limited exposure aren’t reliable. Dermatitis herpetiformis can also be tricky to diagnose unless the biopsy is taken from normal-looking skin next to a lesion. Some people with celiac or DH don’t react every time they’re exposed, so lack of symptoms doesn’t rule it out. Given your history and family cancer risk, this is something I’d strongly discuss with a celiac-experienced gastroenterologist or dermatologist before attempting a challenge on your own, so risks and benefits are clearly weighed.
    • Greymo
      Violent reaction to gluten after going gluten-free?

      By Greymo · Posted

      https://celiac.org/glutenexposuremarkers/    yes, two hours after accidents ingesting gluten I am vomiting and then diarrhea- then exhaustion and a headache. see the article above- There is research that shows our reactions.
    • trents
      EMA Result

      By trents · Posted

      Concerning the EMA positive result, the EMA was the original blood test developed to detect celiac disease and has largely been replaced by the tTG-IGA which has a similar reliability confidence but is much less expensive to run. Yes, a positive EMA is very strong evidence of celiac disease but not foolproof. In the UK, a tTG-IGA score that is 10x normal or greater will often result in foregoing the endoscopy/biopsy. Weaker positives on the tTG-IGA still trigger the endoscopy/biopsy. That protocol is being considered in the US but is not yet in place.
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