Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Thoughts On Dermatitis Herpetiformis Diagnosis

Sunshine Sassie

Recommended Posts

Sunshine Sassie Rookie
Sunshine Sassie
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

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 Rookie
Sunshine Sassie
Posted
  • Author

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 Rookie
Sunshine Sassie
Posted
  • Author

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 Veteran
squirmingitch
Posted

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 Veteran
squirmingitch
Posted

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

Sunshine Sassie Rookie
Sunshine Sassie
Posted
  • Author

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

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 Rookie
Sunshine Sassie
Posted
  • Author

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 Veteran
squirmingitch
Posted

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/

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,840
    • Most Online (within 30 mins)
      7,748
    Gabcar14
    Newest Member
    Gabcar14
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • HilaryM
      New onset constant gas

      By HilaryM · Posted

      Thank you Scott - I can’t think of much that’s changed diet wise but I’ll definitely try to see if any of this works and probiotics are a great idea thank you!
    • cristiana
      4 Years and very little progress

      By cristiana · Posted

      Hello there @maylynn  I'm a slow healer from the UK.  I sympathise.  Despite three endoscopies which showed nothing wrong, I frequently suffered from a very sore stomach, bloating, feeling queasy.   For some time I was taking the wrong iron supplement (Floradix instead of Floravital - the former has gluten in it, but the latter none).  But I would say even very little iron from an approved source made my stomach sore, I think it can be quite irritating. Perhaps that is an issue for you? Oats (the gluten-free pure ones) were an issue for many years (now fine).   Even though my endoscopy findings did not reflect any problems with healing, or any other issues, I self-diagnosed myself with gastritis as it seemed the feeling of nausea and in my case burning in the stomach pointed to it.  I went onto a gastritis/reflux diet and that really helped.   Have a google - there are tonnes online.  That meant avoiding spicy, greasy food, onions, tomatoes, coffee and alcohol.  (Actually, I don't drink, but I did toast someone during that time at a baptism and it set my stomach on fire.)   Instead of drinking strong coffee, I drank water, camomile tea, warm ginger water... so soothing.  I would not go to bed with a full stomach when things were bad, I would let my stomach rest from say 8pm to 8am, which really helped.   My husband and I then decided to buy a new oven and to buy a new dishwasher - we did need new ones anyway.  The new oven had two compartments, gluten goes in one, gluten free in the other.  The new dishwasher was a Miele which does a full rinse with clean water before washing the dishes.  But before I could afford a new dishwasher I would hand wash the dishes and make sure they were really rinsed well, no residue  (unlike our old dishwasher that was really not rinsing well at all). I stopped eating out for quite a few years - I think this is a biggy - although I would have coffee and soft drinks out. Eventually, my levels normalised.  What of the above was the 'silver bullet'?  I am not sure, but finally I did feel a lot better.  Occasionally I will take an over the counter PPI (omeprazole) or a small dose of Gaviscon, but most of the time I don't need them now. I'm not expecting anyone to go to all these lengths, but it could be that one or two of the tips I give you might work.  Don't give up hope! Cristiana
    • RMJ
      High IGA antigliadin, everything else normal, what does this mean?

      By RMJ · Posted

      Yes, it would make sense to go mostly gluten free, since it gives your troubles.
    • SMK7
      High IGA antigliadin, everything else normal, what does this mean?

      By SMK7 · Posted

      Yes, I made an effort to eat extra gluten at least 3 weeks before the endoscopy. I probably ate a some amount in the weeks before that. I had diarrhea, which resolved once I cut back after the endoscopy. So I think it would make sense to go mostly gluten free?  
    • RMJ
      High IGA antigliadin, everything else normal, what does this mean?

      By RMJ · Posted

      Yay for the normal biopsy! Thanks for the follow up. Were you eating gluten prior to the endoscopy?
×
×
  • Create New...