Thoughts On Dermatitis Herpetiformis Diagnosis

[Sunshine Sassie]

Hi everyone,

 

I've returned after a few months seeking some more helpful advice. I learned a great deal of knowledge from here and I must say this is a top-notch forum! I am currently diagnosed with IBS-C and have been following some other forums but I must say this is by far my favorite! Everyone who responded to me in the past were more than supportive, positive, and genuinely cared 

 

Short re-cap of my story:

 

Constipation (Never have the urgency)

 

Symptoms that only appear when consuming gluten: Extreme bloating, cramping of intestines and raw feeling, gas, mucus in stool.

 

I have been tested for Celiac Disease twice by blood but have a low IGA/IGA deficiency. My plan was to start eating gluten again to get a proper diagnosis, but I can't bring myself to last longer than four days. I've attempted many times but I just can't do it.

 

Over Christmas I accidently consumed gluten quite a few times and still have not recovered. I've developed a strange rash on my hands in the last week which has had me scratching my skin off! I am prone to dry skin but I can tell this is different. It is not improving with lotion like normal dry skin and I haven't changed any products. It has also completely stopped itching since Monday but doesn't look any better. I went to my primary care doctor and he told me my skin was inflamed and it looked like Dermatitis. I am aware there are different types of Dermatitis and it doesn't mean it is Dermatitis Herpetiformis but wonder if I should seek out a dermatologist and have it biopsied? My doctor gave me a steroid shot and cream but it hasn't changed the rash so far.

 

I'm scared by the time I get an appointment with a dermatologist the rash will be gone. I would hate to miss this opportunity of confirming a Celiac diagnosis without having to do the gluten challenge. Any thoughts would be much appreciated.

 

Marie

[squirmingitch]

You've been gluten free so a biopsy of dh will come up negative. You would have to do a gluten challenge just like for the blood work. Then there is another obstacle which is the steroid shot which will turn up a false negative. You would have to wait 2 months for that to clear. Sooooo, I'm sorry to tell you you're out of luck. You know how gluten makes you feel. You said you couldn't last more than 4 days on the challenge. You'll just have to trust your body & it's telling you not to eat gluten. 

[Sunshine Sassie]

Thank you for the quick response Suirmingitch! and thank you for the great advice! I did not know the lack of gluten consumption and the steroid shot would interfere with the diagnosis. I'm sure glad you replied you saved me and my insurance some money on a wasted dermatologist appointment.

 

I wish it was easier to rule out/get a diagnosis of Celiac!

[Sunshine Sassie]

I apologize I spelled you name wrong in my last post (Squirmingitch). Do you have D H ? If you do does yours lose it's itch?

[squirmingitch]

No problem about spelling the name -- don't think another thought about it.

 

I'm not real clear on what you mean by your question. Can you clarify please?

[squirmingitch]

I forgot to answer your question as to if I have dh. Yes, I do as does my husband.

[Sunshine Sassie]

I'm sorry to hear you both suffer from D H What I meant by "does it lose it's itch" was does the rash ever come to a point where it's still physically there but no longer itches? I know that sounds strange but mine has kind ve become crusty and has completely stopped itching. I'm relieved the uncontrollable itch has subsided but I can't figure out why it's still there.

[squirmingitch]

The rash can stop itching & yet still be there. It can re-flare OR it remains until the skin heals. Also, you had the steroid shot which will make the rash stop itching but I will warn you many, many of us with dh have felt the payback of steroid usage when dealing with the rash. There is a backlash when the steroid is withdrawn & it pays you back in spades. Been there, done that & no thank you!

My husbands does the stop itching, become crusty thing. Sometimes it heals up & sometimes it just kind of stays, not itching, but you can see "it" is still there just waiting to rear it's ugly head again & eventually it does. It can take a LONG time for the antibodies to get out of your skin, until that time, even when being very strict gluten-free, the rash can & does flare. This is what is so vexing about the rash. The rash can come & go even while one IS eating gluten and the same is true when eating gluten-free so it's imperative to make sure you're not getting cross contamination. The rash is sensitive to the tiniest amount of gluten.

 

Go over to the dh forum & read thread after thread & you will learn much.

https://www.celiac.com/forums/forum/26-dermatitis-herpetiformis/

[Sunshine Sassie]

Thank you so much for taking the time to help me Squirmingitch. I really appreciate it, you've been very helpful and I'm going to read through these posts to learn more about D H and if I can identify with it or not.

[squirmingitch]

You're very welcome! You might want to pay special attention to the sticky at the top of the dh forum. This one:

https://www.celiac.com/forums/topic/84513-descriptions-of-dh-types/