Just diagnosed

[Michellelle]

Hello guys. I have been experiencing a rash for about 8 months. I was told over and over I had ezcema and have been slowly bumped up to the highest topical steroid cream. After frustration of the rash continuing I went to an allergist. I did not react to food or airborn allergies but I did have an allergy to fragrance and formaldehyde. I have replaced everything in my house from top to bottom. 

I followed all the rules for a month and no changes. I recently went to a new Dermatologist. She observed my rash and tested me for celiacs. I tested real high on the following tests:

TTg IgA      >100

Glaidin IgG   128

Glaidin IgA   204

Endomys Ab Ttr   1:320 

the Doctor phoned me to diagnois me with Dermatitis Herpetiformis and has made a refferal with a GI Doctor. She did not recommend that I need a skin biopsy, is that normal? I am currently awaiting for that appointment. 

I have been reading a lot about this disease and I wanted to know what other people are experiencing with this rash. For me it's:

Re occurring (constant) new little blisters on my hands. They itch and burn and I itch until the skin breaks. It seems like my hands never heal. My skin is rough and very thick. My skin is also peeling and hard. New blisters continue to form. There is fluid under the skin around old blisters that have opened. 

Its also on my Outter elbows and knees. But it looks different. The bumps are larger and do not appear to have fluid in them. They itch but not as bad as my hands. I also have them on my feet as well. They seem to never heal. I have scratched them open several times. A few of them I have left alone for like a month and they seemed to lay flat but they are still there. Slightly purple in color. 

Im wondering if I was misdiagnosed or if I have more than one skin condition. I'm also reading conflicting facts that this means I would also have celiacs..... I am experiencing some light joint pain. Either way I am patiently awaiting my GI appointment but as I understand it, I need to remain on a gluten diet until he/she can run a biopsy if desired. All of my other blood tests came back negative. My white blood cells were elevated. Any help or comments would be greatly appreciated. 

 

Respectfully,

Michelle

 

 

 

[GFinDC]

Hi Michelle,

The dermatologist can diagnose you for DH by taking a biopsy skin sample from adjacent to a lesion/blister.  You shouldn't have to wait for or get an endoscopy.  Only people with celiac disease get DH (dermatitis herpetiformis).  So if you are diagnosed with DH you are diagnosed with celiac disease.

[Michellelle]

Thanks for responding. I've only had blood work. The derm is setting me up with a GI who will likely do more testing. I'm currently in Puerto Rico working on storm damage and may not return back to the states for a few more weeks. I did the blood work before I came out here and was called with the results. I will make sure they do a punch biopsy and an endoscopy if they feel it's neccesssry too. 

[squirmingitch]

Open Original Shared Link

Frequently Asked Questions

Q

 

Can a skin biopsy for dermatitis herpetiformis (DH) confirm celiac disease or is an endoscopy still needed?

A skin biopsy should be done on a non-affected portion of the skin near the rash when there is an outbreak. It’s not necessary to perform an intestinal biopsy to establish the diagnosis of celiac disease in a patient with DH; the skin biopsy is definitive. July, 2012

[squirmingitch]

So you see Michelle, there is absolutely no reason for you to have to go through an endoscopy. BTW, unless you post the reference ranges for your blood tests, we can't tell what's going on with them. All labs are different so they have different reference ranges.

 

And THANK YOU  for helping the people of Puerto Rico recover!!!!!!!

 

Ask us any questions you have. Really though, I don't know why the term didn't just do a punch biopsy in the first place. If she can recognize it or suspects that strongly by looking at the rash then she should have enough knowledge to do a dh biopsy correctly. BTW, it's not ON a lesion but from a clear area ADJACENT to an active lesion.

 

[ravenwoodglass]

Labs may have different ranges but those results look quite high even without you posting them.  I could be wrong but if your doctor has seen a number of DH patients and seeing your results on the celiac panel being that high the doc may be confident that you have celiac. You could call the office and ask for a biopsy but I agree with the others that a diagnosis of DH is a diagnosis of celiac. Your doctor may be comfortable giving you an 'official' diagnosis after the antibodies have resolved on the diet. The choice whether to have an endoscopy is yours to make. Just don't think you  don't need to be gluten free if the results should be negative. 

When you go gluten free do be sure to cut down or cut out iodine from your diet until your lesions are well healed. For some reason the iodine can keep the antibodies active in the skin. Do add it back on after you are healed as it is an important nutrient. Some have to avoid high iodine foods like seaweed and shellfish. Myself I just dropped iosized salt and made sure my supplement didn't have it.