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

Confused and frustrated

Pinkdaisygirl

By Pinkdaisygirl
in Dermatitis Herpetiformis

Recommended Posts

Pinkdaisygirl Newbie
Pinkdaisygirl
Posted

Hi all!  I've been reading stuff on this forum for about three years now and I have to say thank you!  This is an amazing site and has answered so many questions. I was diagnosed by a chiropractic physician a few years ago with celiac disease so I have no official celiac doctor and am extremely frustrated. I have read a few other posts about this too. I seem to be getting more and more sensitive as the days go on. I have celiac disease and also dairy allergy and seem to be allergic to tapioca and Shea as well. But I'm not sure what else. This year I have developed a rash that appears to be dh?  It's itchy but when i scratch or even touch it it feels like it's on fire!  But it acts and looks different depending on where it is on my body. Started in the middle of my chest - yep super uncomfortable and then spread to my upper back. Both of those areas cleared up but it had also spread up the back of my neck and even into my hairline somewhat. Seems like every time it starts to go away then it suddenly gets worse. I have changed my shamooo, my conditioner, my soap I use in the shower, no more hair products everything. I'm so frustrated. I can't figure out what it may be that makes it not want to go away. I use wintergreen rubbing alcohol on it a lot bc that seems to help it dry up faster. Also I do use essential oils a lot instead of medicine. They are pure and natural oils and shouldn't contain any gluten as nothing is added to these particular oils. I'm wondering if maybe the oils are irritating it?  Or is there anything else that you all may know of that could be keeping this rash active?  I use All Free and Clear laundry soap, I switched to Naturelle brand shampoo - no conditioner right now (very dry frizzy hair ATM) no hair products. I was using plain glycerine soap - yuck! And am going to try kirk's Castile soap tonight. Any suggestions would be greatly appreciated. Anything to help the rash go away, stay away, feel even a tiny bit better, anything. Thanks. 

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted
8 minutes ago, Pinkdaisygirl said:

Hi all!  I've been reading stuff on this forum for about three years now and I have to say thank you!  This is an amazing site and has answered so many questions. I was diagnosed by a chiropractic physician a few years ago with celiac disease so I have no official celiac doctor and am extremely frustrated. I have read a few other posts about this too. I seem to be getting more and more sensitive as the days go on. I have celiac disease and also dairy allergy and seem to be allergic to tapioca and Shea as well. But I'm not sure what else. This year I have developed a rash that appears to be dh?  It's itchy but when i scratch or even touch it it feels like it's on fire!  But it acts and looks different depending on where it is on my body. Started in the middle of my chest - yep super uncomfortable and then spread to my upper back. Both of those areas cleared up but it had also spread up the back of my neck and even into my hairline somewhat. Seems like every time it starts to go away then it suddenly gets worse. I have changed my shamooo, my conditioner, my soap I use in the shower, no more hair products everything. I'm so frustrated. I can't figure out what it may be that makes it not want to go away. I use wintergreen rubbing alcohol on it a lot bc that seems to help it dry up faster. Also I do use essential oils a lot instead of medicine. They are pure and natural oils and shouldn't contain any gluten as nothing is added to these particular oils. I'm wondering if maybe the oils are irritating it?  Or is there anything else that you all may know of that could be keeping this rash active?  I use All Free and Clear laundry soap, I switched to Naturelle brand shampoo - no conditioner right now (very dry frizzy hair ATM) no hair products. I was using plain glycerine soap - yuck! And am going to try kirk's Castile soap tonight. Any suggestions would be greatly appreciated. Anything to help the rash go away, stay away, feel even a tiny bit better, anything. Thanks. 

How did your Chiropracter diagnose you with Celiac?  I am  pretty sure he didn't biopsy your rash or small intestines.  Also, are you actually allergic or just seem to have upset stomach issues with these other foods?  Are they causing a rash?  If you are really gluten free for 3 years, this rash may have nothing to do with gluten.

cyclinglady Grand Master
cyclinglady
Posted

It might be worth going to a MD and getting a celiac blood test and a referral to a dermatologist for a skin biopsy (make sure he/she is celiac savvy).  Your antibodies could be elevated (or maybe not).  You could be getting gluten exposure somehow.  But, as Karen said, it could be completely unrelated to gluten.  Wish I could be of more help.  

Ennis-TX Grand Master
Ennis-TX
Posted

One of the allergies I developed and has gotten worse over the years was corn, and I get a allergic rash with a burning sensation when ever something made of corn, or contains corn contacts my skin. Celiac disease does odd things to ones body especially in the immune system department, you might have come down with a odd allergy to something in you laundry detergent, a essential oil, soap, etc. and it could be something you use everyday without thinking. It could really be anything, agree with the others here perhaps go see a MD, I might suggest getting a complete allergy test done both skin prick and blood, and as cyclinlady mentioned getting a good dermatologist.

Pinkdaisygirl Newbie
Pinkdaisygirl
Posted
  • Author
On 11/14/2016 at 11:44 PM, kareng said:

How did your Chiropracter diagnose you with Celiac?  I am  pretty sure he didn't biopsy your rash or small intestines.  Also, are you actually allergic or just seem to have upset stomach issues with these other foods?  Are they causing a rash?  If you are really gluten free for 3 years, this rash may have nothing to do with gluten.

Thanks. Yes I am sure it is celiac. We did some stool testing and years of seeing him - he has it too - but mainly my symptoms for gluten are my head spins very badly, I get a little nauseous sometimes, and sometimes it's just a horrible migraine that lasts for days. This skin issue has started within this last year and it's terrible. I live in a small town and have no medical insurance except for Medicaid and there aren't many specialists in my area. I'm going to have a physical done soon and am going to inquire for a referral. Thanks for responding. It means so much to have others who know your misery sometimes :) 

yea I am wondering if my rash may have more to do with the essential oils I have been using or a new reaction to something I've been using for a while. There's nothing bad in them though and have used them for a few years now too. But I am noticing that new things crop up often. 

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. Rogol72
      - Rogol72 replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying...
    2. Scott Adams
      - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin. In the early 1900s, refined white flour replaced whole grains, and people began...
    3. Scott Adams
      - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted...
    4. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      CT with contrast.

      Thank you.
    5. deanna1ynne
      - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased int...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,442
    • Most Online (within 30 mins)
      7,748
    Nony
    Newest Member
    Nony
    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

    • Rogol72
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
    • Scott Adams
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
×
×
  • 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.