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

Awful Facial Rash

missy--m

Recommended Posts

missy--m Newbie
missy--m
Posted

Twice in the last few months I've had a horrible, horrible skin rash. My doctor is convinced it is Herpes Simplex (cold sores) but that sounds crazy to me, it's all over my face, my earlobe, my forehead, and I have an itchy scalp. I submitted a blood test but am waiting for results. But I doubt she's testing for anything else and even if I have the virus that doesn't mean that's what this is on my face as she took no swab or biopsy.

I told her I'd taken Aleve (NSAID) the day this rash came back, and recently I read that could indicate celiac disease/gluten intolerance). She said people rarely react to Aleve. Hmm. I also have had bloating and irregular periods recently and I've just read that could also be related.

But the rash on my face didn't look exactly like celiac-related dermatitis. I've cut out gluten as an experiment, but has anyone else had a similar rash? It starts out bright pink and feels very hot, then swells up, and eventually blisters form in some places. It burns and stings more than itches. My scalp itches too but not severely. The first time I got it cortisone cream worked well, this time the doctor told me not to use it (as she's already assuming it's cold sores). When the rash recurred, it was in exactly, exactly the same patterns and places.

I'd really appreciate it if anyone else here can tell me if they have had a similar recurring rash?

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

Celiac.com Sponsor (A8-M):


Alwayssomething Contributor
Alwayssomething
Posted

Yes, only mine started on my body, each time it came back it spread a little further. Then I noticed that my face was on fire everytime this rash appeared, ears (inside and out) scalp and even my eye lids. It took 12 weeks for a diagnosis and it took almost a month for the rash to clear 100%, now if I get any gluten my face (in the exact same spots on the sides of my cheek/chin) behind my ears and all over my neck break out immediately, sometimes they blister sometimes not, mine itches like crazy. I did have to change my makeup, face soap, shampoo, and soap as well as my diet.

A dr did just suggest I go back on gluten to be tested for celiac that way I had an official "diagnosis" I told him no thanks, there is no way I would eat gluten again for 10-12 weeks and endure this rash, my immediate rash upon being glutened is enough of a diagnosis for me.

I did learn that this rash with the celiac is often associated with a thyroid condition called hoshimoto's, I tested positive for that as well.

squirmingitch Veteran
squirmingitch
Posted

Missy,

Read this thread all the way through. it will tell you much about the differing dh experiences we have & the way dh presents for different people.

https://www.celiac.com/forums/topic/91270-symmtery-in-dh/

And Always...., Yeh! I hear you! No way, no how I'm going back on gluten to get an official diagnosis. As far as I'm concerned I DO have an official diagnosis.

dani nero Community Regular
dani nero
Posted

You need another doctor. I swear these doctors need to be re-schooled

ravenwoodglass Mentor
ravenwoodglass
Posted

Can you find a dermatologist who is familiar with DH? The doctor can biopsy intact skin next to the lesions to look for the antibodies. The doctor has to tell the lab he suspects DH as they need to be testing for it to find it. A diagnosis of DH is a diagnosis of celiac and no other testing would be needed. There is a reason it is called dermatitis herpeformis as the lesions do look like herpes lesions. You need a doctor who doesn't just diagnose on appearance alone.

missy--m Newbie
missy--m
Posted
  • Author

Thank you all! I read the other thread and it's good to know that not all DH symptoms are the same.

Well my test for herpes came back negative. In fact I am very healthy apart from a severe Vitamin D deficiency, which I have heard can also be a symptom of gluten intolerance/celiac! But of course my doctor didn't test for gluten antibodies and she actually said to me "it's not celiac" and I said "how do you know if you didn't even test for it?". So frustrating.

So today I went to a dermatologist but weirdly she didn't want to do a biopsy. Now I'm keeping a food diary, but I've cut out gluten anyway to see if that helps...... maybe I'm just going to have to diagnose myself. I really don't know why doctors are so against even considering gluten as a culprit, it makes so much sense to me.

missy--m Newbie
missy--m
Posted
  • Author

Can you find a dermatologist who is familiar with DH? The doctor can biopsy intact skin next to the lesions to look for the antibodies. The doctor has to tell the lab he suspects DH as they need to be testing for it to find it. A diagnosis of DH is a diagnosis of celiac and no other testing would be needed. There is a reason it is called dermatitis herpeformis as the lesions do look like herpes lesions. You need a doctor who doesn't just diagnose on appearance alone.

Hm, maybe then it's worth continuing to eat gluten and if the rash comes back then demanding a biopsy immediately.....ugh, not sure I can go through it again!

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Doctors are taught very little about celiac disease in medical school and it is never something they first think of - in fact they seldom think of it at all :rolleyes: And that goes for dermatologists too! It shouldn't be so hard to get the keys to unlock the door, but it is. A derm. biopsy of an active lesion would definitely be the best way to go if you could find a dermatologist willing to do it. And it has to be taken adjacent to an active lesion, not on the lesion itself. And they have to specify it's a dermatitis herpetiformis biopsy because it requires special staining to diagnose it.

pricklypear1971 Community Regular
pricklypear1971
Posted

Ridiculous.

If you find a doctor to test you, wait a while. Steroids can negate Celiac testing by suppressing the immune system.

I wonder if that's why DH is hard to dx, because they toss steroids out like candy first.

You may read some of the recent threads in the DH area about ways to combat rashes.

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. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    2. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    3. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
    4. trents
      - trents commented on Jefferson Adams's article in Other Diseases and Disorders Associated with Celiac Disease
      6

      Celiac Disease Patients Face Higher Risk of Systemic Lupus

      What kind of practitioner did the blood test? Was this a medical doctor, a naturopathic doctor, a GI doc? I would certainly follow up with them and ask why they advised you not to eat red meat. I mean, it could be something like they, themselves, are a vegetarian and give that advice to everyone. Have you had an endoscopy with biopsy of the small bowel...
    5. knitty kitty
      - knitty kitty replied to EndlessSummer's topic in Food Intolerance & Leaky Gut
      2

      Dizziness after eating green beans?

      @EndlessSummer, You said you had an allergy to trees. People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits. Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease. Switching to a low histamine diet for a while can give your body time to rid itself of...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,692
    • Most Online (within 30 mins)
      7,748
    Ali Zaib
    Newest Member
    Ali Zaib
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • cristiana
      Issues before diagnosis

      By cristiana · Posted

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac. (This was the same GP who said Dad didn't have dementia, when months before one of his colleagues suspected it and told me Dad must be diagnosed).  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
    • sha1091a
      Issues before diagnosis

      By sha1091a · Posted

      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.   going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 
×
×
  • 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.