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Possible Dh- Need Some Advice

Mb17daisy

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Mb17daisy Newbie
Mb17daisy
Posted

Hi, I am new here and I was wondering if anyone has some advice or suggestions. For over a year now I have been having stomach issues..I had blood work done for celiac but I was on a Paleo diet which consisted of not eating carbs and the test came back negative. This past June I developed a horrible rash on my leg which I was told was chigger bites..they started off so small but itched to no end I ended up with scabs and now have scars! The rash started on one leg then went to the other. It went away and it came back in full force. Once again it started on my leg went to the other leg then my arm and elbows then the next day it was in the same spots on my other elbow. My legs and arms are scabbed And scarred to no end- it's embarrassing. Went to a dermatologist and I got a skin biopsy and came back inconclusive. This dr gave me clobestal which help relive the itch but didn't do much. To make a long story short I left that dr And went to another dr because the rash is now on my upper legs..this dermatologist suggested celiac and did a biopsy. The results came back with eczema and now she wants me to get a patch test from an allergist.

I do get stomach pains and have a bad stomach after I eat gluten. Does anyone have any advice on what I should do, do I have a say I the patch test on what it should test or what should I ask? Does this sound like dh to any of you? Thanks for giving me the chance to vent and ask questions! Looking forward to your responses!

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mushroom Proficient
mushroom
Posted

Welcome Daisy.

 

Did your dermatologist biopsy the rash itself? or the clear skin adjacent to a rash lesion?  If she biopsied the rash itself it was done incorrectly and would not find the gluten antibodies.

 

Did you have any celiac blood work drawn?  While those who have DH often test negative on blood work it should always be run nevertheless.  These are the tests which your primary care doctor can order:

 

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

 

I assume she is planning to check for food allergies with the "patch" test.

 

Can you describe your rash for us?  Does it form a head?  Does it blister and contain fluid?  Does it leave a purple scar?  These are often telltale signs of DH.  Does it hurt/sting as well as itch?  It could well be Dermatitis Herpetiformis but it is really hard to know.

 

I hope you can get to the bottom of it soon :)  and get some relief.

rosetapper23 Explorer
rosetapper23
Posted

I would strongly suggest avoiding iodine--eating iodine with gluten can cause DH.  

Mb17daisy Newbie
Mb17daisy
Posted
  • Author

Welcome Daisy.

 

Did your dermatologist biopsy the rash itself? or the clear skin adjacent to a rash lesion?  If she biopsied the rash itself it was done incorrectly and would not find the gluten antibodies.

 

Did you have any celiac blood work drawn?  While those who have DH often test negative on blood work it should always be run nevertheless.  These are the tests which your primary care doctor can order:

 

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

 

I assume she is planning to check for food allergies with the "patch" test.

 

Can you describe your rash for us?  Does it form a head?  Does it blister and contain fluid?  Does it leave a purple scar?  These are often telltale signs of DH.  Does it hurt/sting as well as itch?  It could well be Dermatitis Herpetiformis but it is really hard to know.

 

I hope you can get to the bottom of it soon :)  and get some relief.

Thank you for the quick reply.

I would have to look for the blood results since they are almost two years old.

The rash is extremely itchy, it burns, and stings-I fees better when I itch it but st the same time it hurts and feels like someone is taking sharp objects to my skin and after i itch it it hurts just the same as before I started. It is red and slightly raised. I have not seen blisters or fluid but my body becomes extremely itchy and the next day or a little while later I have a rash and I have already stared bleeding since I'm itching it so much. I do have purple scars-which I thought was weird-dr gave me retionsl ..she said it will help with the scarring. I notice after I eat gluten I become itchy and develop more bumps or a rash.

What are some things iodine are in...whatnisbthe relationship between the two?

mushroom Proficient
mushroom
Posted

Thank you for the quick reply.

I would have to look for the blood results since they are almost two years old.

The rash is extremely itchy, it burns, and stings-I fees better when I itch it but st the same time it hurts and feels like someone is taking sharp objects to my skin and after i itch it it hurts just the same as before I started. It is red and slightly raised. I have not seen blisters or fluid but my body becomes extremely itchy and the next day or a little while later I have a rash and I have already stared bleeding since I'm itching it so much. I do have purple scars-which I thought was weird-dr gave me retionsl ..she said it will help with the scarring. I notice after I eat gluten I become itchy and develop more bumps or a rash.

What are some things iodine are in...whatnisbthe relationship between the two?

The blood tests from two years ago when you were eating Paleo, no carbs, would not be valid because you have to be on a full gluten diet to produce the autoantibodies to gluten which is what the tests are looking for.  If you are eating gluten now you should have the tests rerun.  Also, did your derm do the biopsy correctly?  If not, that should be redone too!

 

Iodine can be an initiator of DH flares and can keep the reaction going, so if you are an iodine responder you should try to eliminate it - no iodized salt, no kelp, seaweed, etc.  Do a google search for the foods that contain iodine like egg yolks and yank them from your diet.

 

ETA:  You might do a search through the photobank here: https://www.celiac.com/forums/topic/94056-dh-photo-bank/ to compare your rash with others'. 

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