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ernieb

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by ernieb

  1. ernieb
    Biopsies will be negative because docs are looking for celiac disease. Having dermatitis herpetiformis could only mean that you are gluten sensitive and not offically celiac . If so you are going to itch when exposed to gluten
  2. ernieb

    If your problems is gluten sensitivity resulting in DH, I predict that biopsies will not show positive.  I had multiple biopsies ordered and reviewed by various physicians, dermatologists, surgeons, internal med, and none, NONE of them dedected anything from their biopsies.  Only when an experienced allergy specialist took one look at my skin then he was the very first of many docs to say without question my particular DH issue.  

    1. ItchDrivingMeCrazy

      ItchDrivingMeCrazy

      Thank you Ernieb,

      I have decided to start a gluten-free diet after the biopsy is done. What you say supports that decision. I have no idea at the moment what is causing the issue, but I know that I can eat a healthy diet that is gluten-free, so I cannot see the harm in going down all avenues. 

      All doctors I speak to tell me to stay off the internet. But I must say that without the internet I would go insane. All your answers here support ways that can lead to a solution. The hope of finding an actual reason for this is much more calming than a tube of steroids.

  3. ernieb
    It is maddening when apparent competent physicians fail to diagnose an obvious important issue such as itching. You clearly are gluten sensitive which manifests as DH. I was diagnosed at age 70 with DH and placed on Dapsone 50 mg daily. Itch solved. I call dapsone a wicked drug as it lowers your red blook count, etc. However, I accept the...
  4. ernieb
    regarding DH: I call this situation gluten sensitivity, and in my case, I always test negative for celiac. 12 years into this, I have controlled it best ( whenever I'm exposed to gluten or even think I've been exposed) with Dapsone 50 mg daily. Not a pleasant drug as it reduces one's red blood count and hemoglobin, so I'm chronically anemic but it's tolerable...
  5. ernieb
    agree that one must be aware of the risks involved; however for me, the risk is small when compared to uncontrollable itching results from unintentional glutening
  6. ernieb
    I have experienced DH for 14 years and many times with GI symptoms. The only way I have been able to control DH (because quite frankly all of us get exposed routinely to gluten through fillers in the various tablets we ingest) is to take a drug called Dapsone. Look it up, speak with your doc about it. 50 mg of Dapsone at bedtime usually keeps DH AWAY!...
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