Gluten free for almost 2 years and still derm hepetiformis

[SWC3]

Hi! I'm new to this forum but have been following threads on this site for the last two years during which I have been gluten free. I made the diet switch due to terrible daily GI problems and skin rashes on my scalp, back and elbows. Both the GI and skin issues improved dramatically after several months on the gluten free diet, yet even now I still am getting itchy/painful sores on my elbows, occasionally on my back and have dry and sore scalp issues (not.sure if this is related to the rashes). What am I missing? Could trace gluten be causing me problems? I tested negative to Celiac's 2 years ago and am super careful to read ingredients on everything i eat. Could something else be triggering this rash? Appreciate your thoughts!!

[cyclinglady]

Welcome!  First, I do not have DH.  I would suggest reading through the DH section for advice and tips.  I can say that many DH members have to be super strict.  20 ppm might be too much for them.  Instead a Whole Foods diet seems to help.  Antibodies can take forever to leave the skin too.  

Consider the Fasano diet (Dr. Fasano, Ped GI at Mass General/Harvard).    It worked for SquirmingItch!  

http://www.mdpi.com/2072-6643/9/10/1129/pdf

[Levi]

On 5/23/2018 at 9:08 PM, SWC3 said:

Hi! I'm new to this forum but have been following threads on this site for the last two years during which I have been gluten free. I made the diet switch due to terrible daily GI problems and skin rashes on my scalp, back and elbows. Both the GI and skin issues improved dramatically after several months on the gluten free diet, yet even now I still am getting itchy/painful sores on my elbows, occasionally on my back and have dry and sore scalp issues (not.sure if this is related to the rashes). What am I missing? Could trace gluten be causing me problems? I tested negative to Celiac's 2 years ago and am super careful to read ingredients on everything i eat. Could something else be triggering this rash? Appreciate your thoughts!!

 

DH here… Dg’d Dec 2006.

In answer to ur ?, yes something else cud, but I’m almost certain that gluten is the culprit. I have tried maintaining a gluten-free diet almost 13 years and for the last 5 or so I have been very diligent in keeping all gluten out as I started suffering from gut issues which affects one’s digestive system. 

Though very careful in maintaining a gluten-free diet it just isn’t 100% possible as there will always be the occasional cross contamination, and the freedom of manufacturers to label a product “gluten free” when less than 20 parts per million of an offending grain exist. So, if you have DH, your always gonna get a flare up here and there, just as I do.

Also, you might as well know that researchers and specialty Drs have already concluded that if you have DH you have Coeliac Disease; you cannot have DH without having celiac disease. I am a living testament to such, though gut problems may not surface for several yrs after Dg’d DH. 

Fyi, according to the USFDA and AMA, distilled vinegar remains up in the air as to whether gluten-free or not… I breakout with gluten bumps “aka” flare ups every time I consume something with distilled vinegar. 

 

GOD Bless us, Keep us, make us YOUR Saints  +++ 

 

[NoGlutensToday]

I had recurring rashes for a few years after going gluten free. It didn't clear up until I started following the Fasano Diet. It is quite strict, but if you're like me you'll appreciate the relief of not getting sick anymore.