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

Dh Vs. Pemphigus?

FlyGirl

By FlyGirl
in Dermatitis Herpetiformis

Recommended Posts

FlyGirl Rookie
FlyGirl
Posted

I was struck by how similar the DH rash is to my mother's skin problem. However, she was diagnosed with Pemphigus in 2002, another auto-immune skin problem. Is there any crossover between these two? Her 'treatment' has been a list of foods to avoid.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

A quick google search turned up an awful lot of stuff which I don't really have time to go through right now. I would advise you to enter pemphigus and celiac into a search engine and take a look at some of the articles, it appears they may very well be associated. Has she had a celiac panel or any other celiac testing?

FlyGirl Rookie
FlyGirl
Posted
  • Author

Actually, after reviewing the options I realized that my mom must have been diagnosed with bullous pemphigoid as that is the proper look and symptoms. Her main complaint is the severe itching and painful nature of the sores. At first they were exactly like the raised blisters shown in both the DH and bullous pemphigoid references. Now they typically don't blister but cause purple-ish itchy painful spots that sometimes do ooze clear liquid. Searching on both celiac & pemphigoid does pull up a number of matches, but no clear association. Seems even less is understood about pemphigoid than celiac.

My mom has several food sensitivities but is uninterested in doing anything with that information. She admits that if she stops eating wheat her nose 'stops dripping' and it appears that she stops getting the sores. But at 87, she's not very impressed by the idea that she should inconvenience herself with dietary restrictions.

I have dairy, soy and wheat issues, but have no celiac diagnosis. I had an endoscopy (2 weeks with gluten after 6 months without) and my gut looked like the picture of health, negative biopsies and blood work. My niece was just advised to eliminate wheat due to some rash and other issues she was having, don't have the details on that one yet. Eliminating wheat has become very fashionable so there is no reason to make assumptions here.

ravenwoodglass Mentor
ravenwoodglass
Posted
I have dairy, soy and wheat issues, but have no celiac diagnosis. I had an endoscopy (2 weeks with gluten after 6 months without) and my gut looked like the picture of health, negative biopsies and blood work.

You need to be actively consuming a full gluten diet for at least 3 months before testing can have any possibility to be positive. If you were gluten free for 6 months that is plenty of time for the antibodies to leave the blood and the villi to heal and it takes time for them to get to the point of damage where doctors will diagnose celiac.

Archived

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

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


  • Member Statistics

    • Total Members
      130,574
    • Most Online (within 30 mins)
      7,748
    ArcRose
    Newest Member
    ArcRose
    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

    • Rejoicephd
      Struggling to get into a good pattern

      By Rejoicephd · Posted

      Thank you very much @trents! This is super helpful. The only time I wasn’t sick after my diagnosis was when I was ordering and eating certified gluten-free meals from a company. I did that for a few months right after being diagnosed and then I started to try to figure it out how to cool and eat gluten-free meals myself. I think I’m probably getting low levels of gluten exposure and maybe that’s what’s making me ill. Possibly other things also not helping the situation (like dairy). Anyway this gives me something to focus on to see if it helps. So thanks for that!
    • trents
      Struggling to get into a good pattern

      By trents · Posted

      Welcome to the celiac.com, @Rejoicephd! 1. "Gluten Free" does not equate to "contains no gluten". According to FDA advertising regulations, it means it cannot contain more than 20ppm of gluten. This is a good standard for most in the celiac community but not good enough for those on the sensitive end of the spectrum. If you find the "Certified Gluten Free" symbol on a package that is even better, indicating that there is no more than 10ppm of gluten.  2. When you are choosing "gluten free" items from a restaurant, realize that it only means gluten is not an intentional ingredient. It does not rule out CC (Cross Contamination) caused by those cooking and preparing the food back in the kitchen who may be cooking it on the same surfaces or in the same pots/pans as they are gluten containing food items and handling it with the same utensils they are handling gluten-containing food. 3. About 8% of celiacs react to the protein avenin in oats as they do the protein gluten in wheat/barley/rye. In addition, some cultivars of oats actually contain the protein gluten. Many celiacs also react to the protein casein in dairy products as they do gluten or they are lactose intolerant. Eggs, soy and corn are also common "cross reactors" in the celiac community but oats and dairy are the most common.
    • Rejoicephd
      Struggling to get into a good pattern

      By Rejoicephd · Posted

      Hi everyone! I was diagnosed with celiac a year ago (they confirmed it on endoscopy following a positive TTG antibody and positive genetic test). I thought the gluten free diet thing wasn’t going to be that hard of an adjustment, but man was I wrong. I’m a year in and still having issues in terms of accidentally glutening myself and getting super sick (I’m starting to think I need to just bring my own food everywhere I go). And also even when I am eating foods that say they are gluten free, I’m still dealing with an upset stomach often. My GI doc said I should avoid dairy as well, and the internal medicine doc said my gut microbiome might be messed up from all of this. I’m just looking for some answers/ideas/tips on what additional things I can do to feel better. Do you all do avoid additional categories of foods beyond just gluten to help alleviate symptoms? Thanks! 
    • trents
      Weakly positive DGP IgA

      By trents · Posted

      If your total IGA is low then the values for the other IGA tests cannot be trusted. They will be depressed. Celiacs who have the DQ2 gene typically are on the more sensitive side as opposed to those who only have the DQ8. But keep in mind that having either or both of those genes does not equate to having celiac disease as 40% of the general population have one or the other and only about 1% of the general population develops active celiac disease. Genetic typing can be used for ruling it out, however. Because of the low total IGA, symptoms and the possession of the DQ2 gene, my suggestion would be for you to go seriously gluten free for a few months and see if your symptoms improve. It may be the only way you can ascertain if you are gluten intolerant because of the low total IGA.
    • Cat M
      Weakly positive DGP IgA

      By Cat M · Posted

      Ah ok, I just saw didn’t even post the DGP IgA at all. 😫 I started with itching and hives Jan 2024, been taking a ton of meds and on Xolair and even that is not providing total relief. The other primary symptoms: intermittent but worsening abdominal pain, diarrhea and bloating. This summer I am just exhausted. I uploaded my 23andMe data to genetic lifehacks and discovered quite a few variations, including DQ2, MTHFR, VDR and I have always had very low ferritin, vitamin D and B12. I still think that mast cell disease makes the most sense, but latest labs show I am barely in range for thiamine, zinc and vitamin A, so the GI stuff feels more important to figure out than the hives right now. I did SIBO testing this morning. TTG IGA <2   0-3 is negative TTG IGG  3   0-5 is neg DGP IGA 21    20-30 is weak positive DGP IGG 4    0-19 is negative Although total IGA is not resulted, there is a footnote stating it was low and the reason they ran IGG.  
×
×
  • Create New...