Jump to content

  • 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
      132,021
    • Most Online (within 30 mins)
      7,748
    maltawildcat
    Newest Member
    maltawildcat
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • NanCel
      Celiac getting dentures

      By NanCel · Posted

    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
    • knitty kitty
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By knitty kitty · Posted

      Please do more research before you settle on nicotine. Dr. Paul New house is a psychiatrist.  His latest study involves the effect of nicotine patches on Late Life Depression which has reached no long term conclusions about the benefits.   Effects of open-label transdermal nicotine antidepressant augmentation on affective symptoms and executive function in late-life depression https://pubmed.ncbi.nlm.nih.gov/39009312/   I'm approaching the subject from the Microbiologist's point of view which shows nicotine blocks Thiamine B1 uptake and usage:   Chronic Nicotine Exposure In Vivo and In Vitro Inhibits Vitamin B1 (Thiamin) Uptake by Pancreatic Acinar Cells https://pubmed.ncbi.nlm.nih.gov/26633299/   While supplementation with thiamine in the form Benfotiamine can protect from damage done by  nicotine: Benfotiamine attenuates nicotine and uric acid-induced vascular endothelial dysfunction in the rat https://pubmed.ncbi.nlm.nih.gov/18951979/   I suggest you study the beneficial effects of Thiamine (Benfotiamine and TTFD) on the body and mental health done by Dr. Derrick Lonsdale and Dr. Chandler Marrs.  Dr. Lonsdale had studied thiamine over fifty years.   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ I suggest you read their book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.     Celiac Disease is a disease of malabsorption causing malnutrition.  Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      Thanks for your response.  Everything you mentioned he is and has been doing.  Tobacco is not the same as nicotine.  Nicotine, in the form of a patch, does not cause gastrointestinal irritation.  Smoking does. He is not smoking.  Please do your research before stating false information. Dr. Paul Newhouse has been doing research on nicotine the last 40 years at Vanderbilt University Medical Center.  
    • Jmartes71
      Fighting for a name

      By Jmartes71 · Posted

      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.