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

Finally A Good Doctor!

Mother of Jibril

Recommended Posts

Mother of Jibril Enthusiast
Mother of Jibril
Posted

I've been seeing a new dermatologist since August. I called her office yesterday because I have a rash (which pops up when I get CC) and taking a shower makes it really ITCHY. She prescribed a couple of shampoos for yeast overgrowth on my scalp... which seems to be fine... but my painfully dry skin just can't handle daily showers. I thought she might come up with a different plan.

To my surprise, she got me in right away for an appointment. After scraping my rash and checking it out under a microscope she said it's not an infection or insects. It's some kind of allergic reaction... maybe DH. And... she asked if she could do a biopsy. Yes! I should have the results within the next two weeks. I can't believe I finally found someone in this town who will take gluten issues seriously!

Incidentally, the biopsy was no big deal. They give you lidocaine to numb the area and it only takes a couple of minutes to extract the samples and put in the sutures. I didn't feel a thing.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

I am glad she was so prompt to see you and biopsy. I do hope she didn't do the rash itself but the skin next to it. If she biopsied the rash it will be negative even if it is DH.

Mother of Jibril Enthusiast
Mother of Jibril
Posted
  • Author

Yeah... I watched what she was doing :) She took two samples... one from a lesion (from a cluster of bumps on my arm) and one from a clear patch of skin right beside it. She even mentioned that the pathologist would be looking for "fluorescence."

I've been glutened three times in the last month. Not by eating gluten foods... by not being paranoid enough! The first time was over Thanksgiving. My husband got a turkey that turned out to be self-basting. I called the company to ask about gluten and corn and I had a sense that the person who answered the phone didn't really understand what I was asking. He was more interested in telling me how I could make gravy with the tips of the wings. <_< The resulting constipation and rash told me I should have trusted my instincts.

Hopefully, some good will come from this.

jerseyangel Proficient
jerseyangel
Posted
Hopefully, some good will come from this.

Yes! Keep us posted :)

  • 2 weeks later...
Mother of Jibril Enthusiast
Mother of Jibril
Posted
  • Author

Well... I got my biopsy results today. The dermatologist says it's not DH, it's "acute dermatitis." Here's one definition I found when I googled it...

"An itchy rash that occurs in response to an intense inflammatory process somewhere else on the body, especially fungal infections."

I want to get a copy of the pathologist's report, but this does seem like a reasonable explanation. I hope the SCD/anti-candida diet prevents the rash from coming back :angry:

wildwood Apprentice
wildwood
Posted
Well... I got my biopsy results today. The dermatologist says it's not DH, it's "acute dermatitis." Here's one definition I found when I googled it...

"An itchy rash that occurs in response to an intense inflammatory process somewhere else on the body, especially fungal infections."

I want to get a copy of the pathologist's report, but this does seem like a reasonable explanation. I hope the SCD/anti-candida diet prevents the rash from coming back :angry:

The same thing happened to my daughter recently. She has been told for years she has psoriasis. She was dx'd celiac in August and is now following gluten free diet. Her rash became much better after a month or so on the diet. She then started taking a vitamin supplement in early November and the rash came back with a venegance. I called the manufacturer, but was told the supplement was gluten free. I took her to the dermatologist feeling this is definately celiac related. A biopsy was done and it came back as "eczema". Funny thing is, now that she is off the supplement and has not been glutened recently the rash is better again. She can always tell when she has inadvertantly ingested gluten somewhere because she will get the rash. To our surprise apparently it is not DH, but it is quite apparent whatever this rash is DH or otherwise, it is definately gluten related.

Mother of Jibril Enthusiast
Mother of Jibril
Posted
  • Author

Yeah... I still think my rash is food-related too. Gluten and corn cause terrible inflammation in my body! I know I also have candida overgrowth... put the two problems together and WHAM.

I have been VERY careful with food for the last three weeks. The only thing I've had at a restaurant is a cup of soy chai (which felt so risky!)... the rash is no longer itchy and has nearly disappeared.

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

Celiac.com Sponsor (A8-M):


Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

I can't help wondering if the diagnostic criteria for DH is either inaccurate or incomplete.

They used to say that you couldn't have celiac if you weren't wasting away, and they were obviously wrong there! I bet that someday, they'll discover that all these pseudo-eczema and pseudo-psoriasis (ps ps!) rashes are actually forms of DH and that the current tests simply aren't sensitive enough, or that they work by another mechanism besides for IgA deposits.

Archived

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

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


  • Member Statistics

    • Total Members
      131,900
    • Most Online (within 30 mins)
      7,748
    tessycork47
    Newest Member
    tessycork47
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.