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Itching

jenski

By jenski
in Dermatitis Herpetiformis

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jenski Newbie
jenski
Posted

I have extreme itching at night, is anyone else having that symptom?

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trents Grand Master
trents
Posted

Have you been officially diagnosed with DH or if not, are you trying to figure out if your symptoms indicate DH?

jenski Newbie
jenski
Posted
  • Author

Hello Trents,

I have not been officially diagnosed. But from everything I have read it is probably what I have. It started back in October and was told it is just contact dermatitis. I have changed all the soaps and detergents and still no relief.  On March 4th I gave up gluten and things are getting better or at least not getting worse. Have itchy bumps mostly on the back of my head, hips, buttocks, lower back, upper back and neck. With flare ups in other places in small amounts. Go to the dermatologist this morning, will see what they say. From everything I have heard it may take awhile to get an official diagnosis. I also have one of the genetic markers for Celiac.   

trents Grand Master
trents
Posted

DH has a characteristic appearance with little blisters or pustules tin the center of the bumps according to my understanding. It is also important to get a skin biopsy done when you are having a fresh outbreak and the biopsy should be taken from between the bumps not on the bumps. That's what I have discerned from this forum. I do not suffer DH myself.

jenski Newbie
jenski
Posted
  • Author

Thank you Trents. The dermatologist still believes it is contact dermatitis. I let them know it is aggravated by wheat but just told me to stop eating it, which I have about a week ago. Probably won’t go back to that dermatologist and just continue to not eat gluten. I just won’t have a formal diagnosis. 

USF1970 Apprentice
USF1970
Posted

It took FOUR years of severe itching b4 being diagnosed with celiac disease and the allergist who found DH, said he had seen similarities in textbooks. As a result, I don’t put a lot of faith in dermatologists. And it took well over 6 months on a strict gluten-free diet for my skin to calm down.

  • 1 month later...
Guest 648
Guest 648
Posted
On 3/13/2023 at 11:16 AM, trents said:

DH has a characteristic appearance with little blisters or pustules tin the center of the bumps according to my understanding. It is also important to get a skin biopsy done when you are having a fresh outbreak and the biopsy should be taken from between the bumps not on the bumps. That's what I have discerned from this forum. I do not suffer DH myself.

I think trents is 100% over the target on this one.

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    • trents
      Awaiting diagnosis

      By trents · Posted

      I would ask for a total IGA test (aka, Immunoglobulin A (IgA) and other names as well) to check for IGA deficiency. That test should always be ordered along with the TTG IGA. If someone is IGA deficient, their individual celiac IGA test scores will be artificially low which can result in false negatives. Make sure you are eating generous amounts of gluten leading up to any testing or diagnostic procedure for celiac disease to ensure validity of the results. 10g of gluten daily for a period of at least 2 weeks is what current guidelines are recommending. That's the amount of gluten found in about 4-6 slices of wheat bread.
    • jlp1999
      Awaiting diagnosis

      By jlp1999 · Posted

      There was not a total IGA test done, those were the only two ordered. I would say I was consuming a normal amount of gluten, I am not a huge bread or baked goods eater
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      Awaiting diagnosis

      By trents · Posted

      Were you consuming generous amounts of gluten in the weeks leading up to the blood draw for the antibody testing? And was there a Total IGA test done to test for IGA deficiency?
    • jlp1999
      Awaiting diagnosis

      By jlp1999 · Posted

      Thank you for the reply. It was the TTG IGA that was within normal limits
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      Awaiting diagnosis

      By trents · Posted

      Welcome to the forum, @jlp1999! Which IGA test do you refer to as being normal? TTG-IGA? Total IGA? DGP-IGA? Yes, any positive on an IGA or an IGG test can be due to something other than celiac disease and this is especially true of weak positives. Villous atrophy can also be cause by other things besides celiac disease such as some medications, parasitic infections and even some foods (especially dairy from an intolerance to the dairy protein casein). But the likelihood of that being the case is much less than it being caused by celiac disease.
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