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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,730
    • Most Online (within 30 mins)
      7,748
    Sumac
    Newest Member
    Sumac
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Theresa2407
      How Come Gluten Didnt Bother Me In Italy

      By Theresa2407 · Posted

      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Possible celiac - need advice

      By Scott Adams · Posted

      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      Celiac or not??

      By Scott Adams · Posted

      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      How Come Gluten Didnt Bother Me In Italy

      By Scott Adams · Posted

      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
×
×
  • 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.