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

Dh On My Scalp


Lawspike

Recommended Posts

Lawspike Rookie

I was diagnosed 7/10/09 with Celiac. Almost immediately after, I got confirming biopsy for dh on my scalp, back and forehead. The back and forehead had JUST started, and thankfully - and is going away, FAST!

I can't remember in the last 15-20 years, or more, when I was not trying to control a *psoriasis* outbreak on my scalp. Special shampoos, creams and WEARING GLOVES - in order to avoid scratching my scalp and what skin was left that was actually not raw, bleeding or worse. July 22 was the beginning of my gluten/casein/soy/eggs free elimination.

I AM SHOCKED. This is the FIRST TIME in almost two decades that I have nothing - NOTHING - on my scalp, EXCEPT HAIR!!!!!!!!!!!!! NO LUMPS, no p%$#@# bumps, no bleeding under my nails when I scratch an itch (and I have barely even scratched an itch, at that, in nine days!

I AM SO ECSTATIC! I know I have a LOOOOOOOOONG way to go with the rest of my horrible Celiac ailments, due to YEARS of misdiagnoses... BUT, I HAD to share this! I am almost brought to tears, by the simple fact that my head is almost completely cleared up... And, I have not even noticed that brushing it does not even hurt!! :D

:D :D :D :D :D :D :D :D :D


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



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

I'm so happy for you!! :D It's wonderful, isn't it, when we finally have an answer--and better still that there's something we can do about it.

ravenwoodglass Mentor

I felt like jumping for joy too. I had the sores all over my face also and it is soooo wonderful when they are gone. I am so glad you had a quick response, I did to.

YoloGx Rookie

Yay for you!

Bea

rpinette Newbie

Hi Lawspike,

I'd love to know where you're located. I'm looking for a Doctor in the LA area to determine if I too have DH as I've had the SAME symptoms on my scalp for over 2 years now & would LOVE to find out what it is!!

Thanks!!!

Lawspike Rookie
Hi Lawspike,

I'd love to know where you're located. I'm looking for a Doctor in the LA area to determine if I too have DH as I've had the SAME symptoms on my scalp for over 2 years now & would LOVE to find out what it is!!

Thanks!!!

Hi! I am in TN. The armpit of the south! LOL.... was relocated for husband's career - from South Florida! I actually marched back into the HARVARD trained dermatologist I was seeing here - AFTER my Celiac biopsy and follow up bloodtests came back SCREAMING CELIAC... and DEMANDED he biopsy the scabby things... on my scalp. One way to tell if it is DH. SURE AS ANYTHING... it was! I wanted to knock him out. 20 creams and hundreds of dollars in visits... over 2.5 years...

tell your dermatologist you have Celiac and want a biopsy... they should have NO problem... they just scraped one of my things on the scalp... a few days I waited and WHALAH!

declan Newbie
I was diagnosed 7/10/09 with Celiac. Almost immediately after, I got confirming biopsy for dh on my scalp, back and forehead. The back and forehead had JUST started, and thankfully - and is going away, FAST!

I can't remember in the last 15-20 years, or more, when I was not trying to control a *psoriasis* outbreak on my scalp. Special shampoos, creams and WEARING GLOVES - in order to avoid scratching my scalp and what skin was left that was actually not raw, bleeding or worse. July 22 was the beginning of my gluten/casein/soy/eggs free elimination.

I AM SHOCKED. This is the FIRST TIME in almost two decades that I have nothing - NOTHING - on my scalp, EXCEPT HAIR!!!!!!!!!!!!! NO LUMPS, no p%$#@# bumps, no bleeding under my nails when I scratch an itch (and I have barely even scratched an itch, at that, in nine days!

I AM SO ECSTATIC! I know I have a LOOOOOOOOONG way to go with the rest of my horrible Celiac ailments, due to YEARS of misdiagnoses... BUT, I HAD to share this! I am almost brought to tears, by the simple fact that my head is almost completely cleared up... And, I have not even noticed that brushing it does not even hurt!! :D

:D :D :D :D :D :D :D :D :D


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



Celiac.com Sponsor (A8-M):



declan Newbie

I am so glad for you Very many of us know the joy of finding out what is wrong and finding a solution. Good luck.

declan

Bonnie Bryant Newbie

Hi There,

Congrats on finally having an answer and a solution to the problem. My name is Bonnie Bryant and I have a friend who just found out she has Celiac Disease and she needs special shampoo to keep her hair from drying out and body washes to keep her skin from getting irritated. I sell AVon and she asked me if they Have Gluten free Product like shampoo, body wash conditioner makeup. etc. And i have a list of all that they have that IS GLUTEN FREE. I was shocked myself asd i did just start working with Avon. They have an amaxing amount of Gluten Free Products. If you need any way of finding out let me know...my email is Bonnie@mulelighting.com and my Avon web siite is:

Open Original Shared Link

Thanks for sharing !!

Bonnie bryant

angieInCA Apprentice

Congrats! I can relate to your elation on realizing what has really been going on all these years and can now take control and regain your heath. Life is Good!

romi Newbie

Could someone tell me if you can still get this dermatitis if you are already on a gluten free diet? I was diagnosed about 7 years ago, but have this dermatitis very bad in my scalp and forehead. What does anyone if anything use for this condition?

ravenwoodglass Mentor
Could someone tell me if you can still get this dermatitis if you are already on a gluten free diet? I was diagnosed about 7 years ago, but have this dermatitis very bad in my scalp and forehead. What does anyone if anything use for this condition?

Have you checked whether your shampoos etc are safe? What has you dermatologist said about it and have they tested it and confirmed it is DH? If they have then gluten may be sneaking in somewhere.

YoloGx Rookie

You could also have some other allergen...or even candida overgrowth showing on your skin. But do check, maybe the other respondent is right and some gluten has snuck in somewhere or other...

Bea

  • 2 weeks later...
rpinette Newbie
Hi! I am in TN. The armpit of the south! LOL.... was relocated for husband's career - from South Florida! I actually marched back into the HARVARD trained dermatologist I was seeing here - AFTER my Celiac biopsy and follow up bloodtests came back SCREAMING CELIAC... and DEMANDED he biopsy the scabby things... on my scalp. One way to tell if it is DH. SURE AS ANYTHING... it was! I wanted to knock him out. 20 creams and hundreds of dollars in visits... over 2.5 years...

tell your dermatologist you have Celiac and want a biopsy... they should have NO problem... they just scraped one of my things on the scalp... a few days I waited and WHALAH!

THANK YOU LAWSPIKE. I am going to ask my Dermatologist to do a biopsy & check for DH.

Archived

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

  • 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. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

    2. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    3. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,416
    • Most Online (within 30 mins)
      7,748

    Heather8280
    Newest Member
    Heather8280
    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

    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
×
×
  • 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.