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DH or eczema?

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I am writing here in hopes that your collective wisdom can help me make sense of what I thought was a dermatitis herpetiformis situation.

I was seen by a GI doctor and then a dermatologist roughly a month ago because of a terrible skin situation. I was itching my forearms, upper arms, and thighs so intensely that they were bleeding. I was waking up in the middle of the night for bouts of itching. It is hard to overstate how unpleasant that this situation was. Gluten and Celiac had been on my mind, and after some quick research I told myself that this must be DH.

As background, I eliminated gluten from my diet about two years ago. My mom was diagnosed with Celiac, and I had some symptoms that made me think that I was having issues with gluten. I have been experiencing GI issues since I was an infant. (My parents took me to many doctors.) I’ve lived with it, but now in my 30s, I started to develop chronic joint pain (especially in my hips). This was on top of the excessive amount of gas, looser stool, low energy levels, and dry skin on my forearms. Within days of eliminating gluten from my diet my GI issues improved, my joint pain went away, and the dry skin on my arms cleared. Night and day. I went to my primary care doctor a little while later, because I was curious about whether I had Celiac or just a sensitivity. A test revealed that I had the genetic marker for Celiac, but the blood work did not indicate Celiac. I went to GI doctor #1 who had me do a gluten challenge for two weeks, and then did an endoscopy. Everything looked normal, he said.

I made an appointment with GI doctor #2 roughly 1.5 years later, when this skin situation surfaced. I must have undiagnosed Celiac, I have been exposed, and I must be experiencing DH for that reason, I told myself. GI doctor #2 told me that a two-week gluten challenge would not have been sufficient to really see a response in the endoscopy done by GI doctor #1. However, she was unsure if my skin situation was DH because it was not on the caps of my knees, and the corners of my elbows, or on my buttocks. She thought it might be eczema, but I felt that it was DH. GI doctor #2 recommended a skin biopsy. I wanted the biopsy to be true, so I consumed a little gluten in the days before my visit to the dermatologist. It flared badly within hours of eating gluten every time. It would also flare badly when I ate pretzels with salt (iodine), which I read is consistent with DH. When I itched, there was a fluid on my arms. But a punch biopsy that was done by the dermatologist revealed eczema. I was so discouraged and confused.

Can DH be misdiagnosed as eczema, even if a biopsy is done? Is it possible for eczema to itch so badly that you start bleeding? Does iodine cause eczema to flare?

I am at a point where I am very frustrated because what I feel – that I have Celiac Disease, and DH associated with it – continues to be contradicted by the tests and procedures that are done. I am going to stay off gluten, but a part of me wanted the certainty and validation that comes with a diagnosis.

Has anyone had a similar experience?

Any wisdom or support would be appreciated.

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When you went to doctor #1, the blood tests were likely false negative b/c you had been gluten free. One has to do a 12 week gluten challenge for blood work. As far as endoscopy, most say a 2 week gluten challenge. That is consuming a slice of bread, or a couple crackers or a bowl of pasta every single day for the 2 weeks. Did you?

As far as GI #2, dh can present anywhere on the entire body. Too many docs are not in the know about it's presentation. A hallmark is bilateral presentation. The itching that keeps you awake at night or wakes you up as well as itching all day long. But when you had the biopsy for the dh, once again you had been gluten free. Even though you say you consumed a little gluten in the days leading up to the punch biopsy; it wasn't enough. For the dh biopsy, you have to do a gluten challenge just like for the blood work & that is 12 weeks of eating gluten every day. Then the biopsy has to be done correctly which is on clear skin adjacent to an active lesion NOT ON a lesion.

60% of those with dh test negative on the blood work. We also tend to have patchier damage to the villi;  in an endoscopy  hitting the "sweet spot" for the biopsies is harder.

Your mom has celiac, you have the genes, you have the symptoms. You either do the 12 week challenge or you listen to what your body has been telling you repeatedly & live like you are a dx'd celiac. It's up to you.

As far a dh rash goes, the gluten antibodies get deposited underneath the skin & can lay there dormant until something sets it off.

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