Gluten sensitivity and Dermatitis Herpetiformis

[amine33]

Hello,

Since 7 years ago, I have been suspecting gluten sensitivity. The only symptom I had was brain fog that last 3 days after gluten ingestion. I have been on and off gluten free diet for those 7 years and I couldn't stand 2 weeks without eating gluten. My brain fog symptoms have increased lately so I decided to completely cut off gluten. Only it lasted for 3 months (my longest streak). Then I decided to eat a Pizza + a big bowl of pasta in one meal because I could not resist. Before I went to sleep, I had itching in my elbows but I taught it was only mosquitos. In the morning, I had red itchy marks in my elbows and legs. 1 week later I have this. I never had something similar in the past and I just discovered that gluten can cause similar skin rash and it is called Dermatitis Herpetiformis. Though I have no digestive symptoms that could make me think that I have celiac disease.

What to you think ?

I have an appointment with the doctor Wednesday.

Thanks a lot.

[Scott Adams]

Of course we could not actually diagnose you from this image and your post, however, your symptoms and the image are certainly consistent with DH, and to verify it you would need to keep eating gluten daily and go to a dermatologist who knows how to properly test you for it...that is, if you need an official diagnosis to help you stay gluten-free. 

For many with DH a gluten challenge is extremely difficult due to how uncomfortable the symptoms are, and how long they last after going gluten-free. For many symptoms can last for days or weeks after even a small amount of gluten.

Another challenge is finding a dermatologist who knows what they are doing and can run the proper protocol for DH, as many in this forum have reported doctors who don't know how to properly run the tests.

[amine33]

3 hours ago, Scott Adams said:

Of course we could not actually diagnose you from this image and your post, however, your symptoms and the image are certainly consistent with DH, and to verify it you would need to keep eating gluten daily and go to a dermatologist who know how to properly test you for it...that is, if you need an official diagnosis to help you stay gluten-free. 

For many with DH a gluten challenge is extremely difficult due to how uncomfortable the symptoms are, and how long they last after going gluten-free. For many symptoms can last for days or weeks after even a small amount of gluten.

Another challenge is finding a dermatologist who knows what they are doing and can run the proper protocol for DH, as many in this forum have reported doctors who don't know who to properly run the tests.

Thanks a lot Scott.
I have an appointment with a random dermatologist. I did not ask him if he is familiar with DH screening procedure because some doctors can be very upset in the case of an apparent self diagnosis. And finally the idea of eating gluten daily for weeks scares me a lot given the amount of "brain fog" as well as the extreme itchiness of the rash. As of today, one week and few days after the appearance of the rash, the vesicles started to dry up and my skin is not itchy anymore. I am very scared of the idea of reintroducing gluten. In any case, I will share with you the outcome of my session with the dermatologist.

[Scott Adams]

Sure, you may also consider getting a celiac disease blood panel around the same time. If you have DH, you will most likely also have celiac disease.

[Awol cast iron stomach]

I would encourage you to call to I inquire if this Dr has an interest in DH. Reason being some of us had decades of misdiagnosis. I was misdiagnosed in my early 20s with another gi disease based on symptoms only. In my 30s I was having terrible symptoms and concerns my thyroid, metabolics, skin, and immune system was malfunctioning. I went to see my ob/gyn, a gp, an immunologist/allergist, a dermatologist, and I had a gastroenterologist who had performed a colonscopy. I was told take a good multi vitamin, nothing is wrong thyroid is fine, eat more fiber, you have environmental allergies take this pill, nasal spray etc, my moles were checked by my skin concerns were skin damage wear sunblock, dermatitis. Lastly, it was psychological. 

I then moved found a new gp who discovered I was vitamin d deficient . Finally In my late 30s I realized I might have to go off gluten after reading a researcher article. I went to go tell the newest gp who discovered the vitamin D deficientcy. When I got there I  had found she left practice to teach at a university.  I started to eat gluten-free  and to feel better and look better. 

In my 40s after a bad gluten incident that was likely intentional, I found my way to a new allergist/immunologist. She realized what I likely had and referred me to the person who trained her who specialized in people like me as she didn't have the proper test. That immunologist and her team of gi Dr's, Physician assistant, and nutritionist are the ones to figure it all out.

Sometimes a random Dr is the one who figures it out, but it is important that is one who knows what DH/celiac/NCGS looks like.

good luck on your diagnosis journey. Please let us know how things go.

Edit: also if you don't want to call the Dr office directly you can try the find a Dr line at the affiliated hospital. The staff that answers and assist often have details about areas of interest and or expertise. 

Edited July 3, 2020 by Awol cast iron stomach
Edit

[jas3734]

Don't be afraid to self advocate for yourself!

[Karino]

Hello,

I just got diagnosed and I'm getting Itchy hives and welts all over my body that come and go. I'm barley getting started on a gluten free diet. But I was always a clean healthy eater. I heard you can get rashes from Celiac but hives and welts? Has anyone experience this? 

[Scott Adams]

Hives and welts are typically associated with allergies or things like contact with poison ivy or poison oak. If yours look like tiny blisters with clear heads, and are very itchy, they could also be dermatitis herpetiformis, and if so, a gluten-free diet would be the way to go. Of course the best approach for you would be to see a dermatologist or your doctor to find out exactly what issue you have.

[DebJ14]

On 7/3/2020 at 5:18 PM, amine33 said:

Thanks a lot Scott.
I have an appointment with a random dermatologist. I did not ask him if he is familiar with DH screening procedure because some doctors can be very upset in the case of an apparent self diagnosis. And finally the idea of eating gluten daily for weeks scares me a lot given the amount of "brain fog" as well as the extreme itchiness of the rash. As of today, one week and few days after the appearance of the rash, the vesicles started to dry up and my skin is not itchy anymore. I am very scared of the idea of reintroducing gluten. In any case, I will share with you the outcome of my session with the dermatologist.

Make sure that any biopsy is taken on the skin around the rash, not from the rash itself.  Otherwise, it will be pointless.  If the doctor starts to take a sample from the rash, pull your arm away quickly and go find another doctor.