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

Just diagnosed

Michellelle

By Michellelle
in Dermatitis Herpetiformis

Recommended Posts

Michellelle Rookie
Michellelle
Posted

Hello guys. I have been experiencing a rash for about 8 months. I was told over and over I had ezcema and have been slowly bumped up to the highest topical steroid cream. After frustration of the rash continuing I went to an allergist. I did not react to food or airborn allergies but I did have an allergy to fragrance and formaldehyde. I have replaced everything in my house from top to bottom. 

I followed all the rules for a month and no changes. I recently went to a new Dermatologist. She observed my rash and tested me for celiacs. I tested real high on the following tests:

TTg IgA      >100

Glaidin IgG   128

Glaidin IgA   204

Endomys Ab Ttr   1:320 

the Doctor phoned me to diagnois me with Dermatitis Herpetiformis and has made a refferal with a GI Doctor. She did not recommend that I need a skin biopsy, is that normal? I am currently awaiting for that appointment. 

I have been reading a lot about this disease and I wanted to know what other people are experiencing with this rash. For me it's:

Re occurring (constant) new little blisters on my hands. They itch and burn and I itch until the skin breaks. It seems like my hands never heal. My skin is rough and very thick. My skin is also peeling and hard. New blisters continue to form. There is fluid under the skin around old blisters that have opened. 

Its also on my Outter elbows and knees. But it looks different. The bumps are larger and do not appear to have fluid in them. They itch but not as bad as my hands. I also have them on my feet as well. They seem to never heal. I have scratched them open several times. A few of them I have left alone for like a month and they seemed to lay flat but they are still there. Slightly purple in color. 

Im wondering if I was misdiagnosed or if I have more than one skin condition. I'm also reading conflicting facts that this means I would also have celiacs..... I am experiencing some light joint pain. Either way I am patiently awaiting my GI appointment but as I understand it, I need to remain on a gluten diet until he/she can run a biopsy if desired. All of my other blood tests came back negative. My white blood cells were elevated. Any help or comments would be greatly appreciated. 

 

Respectfully,

Michelle

 

 

 

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

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted

Hi Michelle,

The dermatologist can diagnose you for DH by taking a biopsy skin sample from adjacent to a lesion/blister.  You shouldn't have to wait for or get an endoscopy.  Only people with celiac disease get DH (dermatitis herpetiformis).  So if you are diagnosed with DH you are diagnosed with celiac disease.

Michellelle Rookie
Michellelle
Posted
  • Author

Thanks for responding. I've only had blood work. The derm is setting me up with a GI who will likely do more testing. I'm currently in Puerto Rico working on storm damage and may not return back to the states for a few more weeks. I did the blood work before I came out here and was called with the results. I will make sure they do a punch biopsy and an endoscopy if they feel it's neccesssry too. 

squirmingitch Veteran
squirmingitch
Posted

Open Original Shared Link

Frequently Asked Questions

Q
 

Can a skin biopsy for dermatitis herpetiformis (DH) confirm celiac disease or is an endoscopy still needed?

A skin biopsy should be done on a non-affected portion of the skin near the rash when there is an outbreak. It’s not necessary to perform an intestinal biopsy to establish the diagnosis of celiac disease in a patient with DH; the skin biopsy is definitive. July, 2012
squirmingitch Veteran
squirmingitch
Posted

So you see Michelle, there is absolutely no reason for you to have to go through an endoscopy. BTW, unless you post the reference ranges for your blood tests, we can't tell what's going on with them. All labs are different so they have different reference ranges.

 

And THANK YOU  for helping the people of Puerto Rico recover!!!!!!!

 

Ask us any questions you have. Really though, I don't know why the term didn't just do a punch biopsy in the first place. If she can recognize it or suspects that strongly by looking at the rash then she should have enough knowledge to do a dh biopsy correctly. BTW, it's not ON a lesion but from a clear area ADJACENT to an active lesion.

 

ravenwoodglass Mentor
ravenwoodglass
Posted

Labs may have different ranges but those results look quite high even without you posting them.  I could be wrong but if your doctor has seen a number of DH patients and seeing your results on the celiac panel being that high the doc may be confident that you have celiac. You could call the office and ask for a biopsy but I agree with the others that a diagnosis of DH is a diagnosis of celiac. Your doctor may be comfortable giving you an 'official' diagnosis after the antibodies have resolved on the diet. The choice whether to have an endoscopy is yours to make. Just don't think you  don't need to be gluten free if the results should be negative. 

When you go gluten free do be sure to cut down or cut out iodine from your diet until your lesions are well healed. For some reason the iodine can keep the antibodies active in the skin. Do add it back on after you are healed as it is an important nutrient. Some have to avoid high iodine foods like seaweed and shellfish. Myself I just dropped iosized salt and made sure my supplement didn't have it.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease...
    2. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especia...
    3. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can t...
    4. Scott Adams
      - Scott Adams commented on knitty kitty's blog entry in Thiamine Thiamine Thiamine
      1

      About Celiac Remission

      This idea comes up often, but it’s important to separate theory from what’s actually supported by evidence. In celiac disease, the immune system does not “forget” gluten in a permanent or reliable way, even after long periods of avoidance, and the celiac genes do not turn off. While antibody levels (like tTG IgA) can normalize on a strict gluten-free diet an...
    5. Scott Adams
      - Scott Adams replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      need help understanding testing result for Naked Nutrition Creatine please

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748
    Atl222
    Newest Member
    Atl222
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
    • Scott Adams
      need help understanding testing result for Naked Nutrition Creatine please

      By Scott Adams · Posted

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold; if it’s <0.025 mcg per kilogram, it would be extremely low and well within GF limits. Without the denominator, the result is incomplete. It’s reasonable to follow up with the company and ask them to confirm the result in ppm using a validated method (like ELISA R5)—that’s the standard used to assess gluten safety.
    • Scott Adams
      Medications

      By Scott Adams · Posted

      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fact that it helped bloating suggests it may be affecting gut–nerve signaling, which makes sense in the context of SIBO, but that doesn’t mean the side effects should be ignored. You’re carrying a heavy load right now with ongoing skin, eye, and neurological uncertainty, and living in that kind of limbo is exhausting on its own. It’s understandable to feel overwhelmed and discouraged when systems and providers don’t meet you where you are—your experience is valid, and continuing to advocate for yourself, even when it’s hard, really does matter. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • 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.