Diagnoses.

[Paul-75 0]

Hi all.
I'm wondering if any of you here were diagnosed based on blood tests only? My GP said both tests they did were conclusive so he didn't send me for a biopsy.
I also have a very itchy, red scalp and no shampoo can help. Can this be related?
Thanks,
Paul.

[GFinDC 841]

You might have DH (Dermatitis herpetiformis).  DH is an itchy rash that only people with celiac disease get.  There is a separate section of the forum for DH info.

[Paul-75 0]

Oh thanks for the Info. My GP never mentioned that rash. 

[cyclinglady 1,597]

Some researchers in the EU are diagnosing patients (especially children) based on just the antibodies test results and a resolution of symptoms on a gluten free diet.  In the US, doctors still prefer biopsies via endoscopy.  This can be helpful in adults where long term damage may have incurred and not just from celiac disease (e.g. H. pylori, SIBO, IBD, cancer).  

It sounds like your GP really thinks you have celiac disease.  If you are doubting that diagnosis, consider getting a second opinion.  Doubt can make it hard to adhere to the diet. 
 

You could have DH (dermatitis Herpetiformis), eczema, or other rashes.  Many are attributed to celiac disease and resolve on a gluten-free diet.  If you do have DH, you might need to be stricter than a celiac who does not have DH.  
 

Your best defense, is to research all that you can about celiac disease.  Welcome to the forum.  

[Paul-75 0]

Thank you for your reply cycling lady. Yes it puts me in doubt. For something this life changing I was thinking that a Gatroenterologist should investigate. I think I will ask for a referral. 

Regarding my scalp the itch is so bad. I tried all shampoos, prescription and non. I also tried steroid creams which made it worse. 

Thank you for your time. 

Paul. 

 

[GFinDC 841]

Hi Paul,

If it is DH they have a different method of diagnosing that.  For DH they take a small skin sample from next to a lesion.  Also, people with DH sometimes don't show as much damage on the endoscopy.  Probably because the immune attack is centered on the skin instead.  DH testing can be done by a dermatologist.

Regardless of what celiac testing you have, you need to stay on gluten until all testing is done.  The test results measure the immune response so they aren't accurate if you haven't been eating gluten for a while.

It is a good idea to do an internet search for celiac doctors in your area.  Not all doctors are knowledgeable about celiac testing.  You also could search for celiac clubs or support groups.  They can sometimes suggest good doctors to go to.

[Paul-75 0]

Thanks a million for your time replying. All of this info is great. Knowledge is power.