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New Here And Pyoderma Gangrenosum

Shejm

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Shejm Newbie
Shejm
Posted

Greetings fellow Celiac's and what a thrill to find all of you..Pretty much thought I was alone until I started reading this forum which I am new at forums duhhh. So winging it here, please have patience with me :)

I am Dr.diagnosed, with no testing, Celiac. How it came about was I kept getting sore/ulcers (one at a time)popping up on my hand that would not heal, along with all the other celiac symtoms. Finally my Dr.sent me to a Dermotologist for biopsy and it came back Pyoderma Gangrenosum, that's when my Dr. said "You have Celiac disease". I have looked in this forum and have not seen anyone with this pyoderma gangrenosum. Was wondering if anyone else is familar with it?

Again, so very very happy I found all of you.

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mommida Enthusiast
mommida
Posted

I just did a very quick look up, so I don't much about pyderma gangrenosum. It seems to be more associated with colitis and chron's. So your doctor diagnosed with Celiac without testing?

Well welcome to the board and feel free to ask any question!

I suggest you keep a food journal as sometimes other food sensitivities come into play. Believe it or not cross contamination can even come from kissing. I agree some things sound like we are over the top fearful of gluten, but these experiences are for real.

  • 6 years later...
Audry Newbie
Audry
Posted

Hi all:

I was diagnosed with Celiac in 2010 with blood testing and small bowel biopsy.  I have been following a gluten-free diet since and a lot of my symptoms and skin problems have gotten better.  However, I was at the beach and got bitten by flies and after biopsy of my legs and a whole Hurd of blood tests the diagnosed me with pyroderma gangrenosum (PD).  It is very painful and takes a long time to heal.  There is some research out there that does relate pyroderma gangrenosum to any inflammatory bowel disease. 

I could only attach one photo but I hope this helps others to know PD is a big problem.  

IMAGE CENSORED BY GOOGLE AS "SHOCKING CONTENT," SO YOU WILL HAVE TO VIEW IT HERE:

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cyclinglady Grand Master
cyclinglady
Posted
On 9/19/2017 at 5:02 AM, Audry said:

Hi all:

I was diagnosed with Celiac in 2010 with blood testing and small bowel biopsy.  I have been following a gluten-free diet since and a lot of my symptoms and skin problems have gotten better.  However, I was at the beach and got bitten by flies and after biopsy of my legs and a whole Hurd of blood tests the diagnosed me with pyroderma gangrenosum (PD).  It is very painful and takes a long time to heal.  There is some research out there that does relate pyroderma gangrenosum to any inflammatory bowel disease. 

I could only attach one photo but I hope this helps others to know PD is a big problem.  

IMAGE CENSORED BY GOOGLE AS "SHOCKING CONTENT," SO YOU WILL HAVE TO VIEW IT HERE:

Open Original Shared Link 

Welcome! 

I am so sorry that you are dealing with this.  With all your testing was active celiac disease ruled out?  Did they check for UC or Crohn's?  Flies?  I am on the West Coast.  The wind is usually too steady for any insect to hang around at the beach, but I recall getting attacked by them while visiting Mt.  Vernon.  

Thank you for taking the time to share with us.  I am sure you can help someone else with PG.  You might enjoy hanging around with a group of people who have celiac disease like you!  ? I wish you well!  

Awol cast iron stomach Experienced
Awol cast iron stomach
Posted

Wow everyone my memory lane stuff just keeps popping up on this forum!!!!

Thanks for sharing the post op and Audrey the pic. I had what looked like this on my inner left ankle in my late 20's!  It never got diagnosed at the time. I was seeing Dr's at time early pregnancy and then missed miscarriage.

 dr's I had at the time I asked didn't know what it was. Period of time I had some of the worst headaches of my life etc. I didn't know if I had been bitten by a spider (brown recluse not in my area though) , the miscarriage, or picked up something from the hospital during my follow up miscarriage stuff-stirrup /ankle. I don't have a pic of it to share.

Dr's didn't know, my mom a nurse didn't know , that left my husband who is a bit more holistic based and helped me on healing it  at home.

I am really shocked to see see posts and all too often say wow! That's my .... from whatever decade 

I'm newly recognized/diagnosed too so this was 15 years ago!

wow

if any one has any active pg I wish you comfort and swift healing . Been there but didn't have the puzzle piece until you gave it to me now.

so many puzzle pieces....finally .....start making an image since I joined this forum.

 

 

knitty kitty Grand Master
knitty kitty
Posted

Open Original Shared Link

Found this article that suggests a link between PD and the Mthfr genes (which are also associated with Celiac Disease).    Taking methyl forms of B9 (methylfolate) and B12 (methylcobalamine), and B6 (P5P), makes these vitamins more usable to people with the Mthfr genes.  

Celiac Disease causes malabsorption.  Celiacs on a gluten free diet may develop deficiencies.  (Gluten free breads and cookies are not required to be fortified with vitamins like their gluten containing counterparts.)  

Perhaps adding these vitamins would be beneficial.

Hope this helps.

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