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

Is this DH? All labs negative


Casy

Recommended Posts

Casy Contributor

Hi folks! I was on one of the other boards, but since my primary indicator these days is a rash, I figured I'd head over here. I'm glad I did... I was under the impression that I could maybe ignore these issues since I'm in "remission" but I'm starting to think that's not a great idea. I have had a large number of celiac-related symptoms in the past, but since going off of milk, all I see are the skin rashes on my elbows and in my hairline, plus my hair sheds more than normal. The rashes come and go, sometimes 6 or more months apart. All my blood tests came up negative, and yes I was eating gluten. Now if I drink milk, my constipation comes back as well as mucousy poo. (TMI, I know), but all the malabsorbtion-related stuff if fine now. I also do turmeric and B-12 every day with a good multi-vit. Maybe this isn't gluten related but something else I'm reacting to? There's no rhyme or reason to when a rash breaks out. These pictures are a month apart from a pretty minor breakout. The little spots are filled with clear fluid, and they itch.

20170422_205338.webp&key=edca9737fb0e6efa

20170511_215313.webp&key=b98c7115d682687e

20170512_161859%25202.webp&key=66e62031aa

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Have you looked into these autoimmune rashes?  

https://rarediseases.org/rare-diseases/autoimmune-blistering-diseases/

Really, skin biopsies are needed to diagnose DH, if you have failed the celiac blood panel.  You can not judge by visually looking at it.  Note that some folks with DH are seronegative.  

Link to comment
Share on other sites
Casy Contributor

My rash is now clear, save for a few small scabs, so I have to wait for it to come back again and try to get in for a skin biopsy. My doc said we'd do the biopsy the next time the rash cropped up if the labs didn't show anything. Some people's DH looks very different than mine though (of course, I'd been scratching and it burst the blisters).

I have taken a look at other auto-immune blistering rashes, but none of them seem to match mine. I only get the itchy rash on my elbows and scalp, once or twice I've had a couple blisters on my knees.

Link to comment
Share on other sites
Victoria1234 Experienced
1 hour ago, Casy said:

My rash is now clear, save for a few small scabs, so I have to wait for it to come back again and try to get in for a skin biopsy. My doc said we'd do the biopsy the next time the rash cropped up if the labs didn't show anything. Some people's DH looks very different than mine though (of course, I'd been scratching and it burst the blisters).

I have taken a look at other auto-immune blistering rashes, but none of them seem to match mine. I only get the itchy rash on my elbows and scalp, once or twice I've had a couple blisters on my knees.

My dh looked a lot like yours. It could have been me you took photos of. I got it on my elbows and scratched like crazy too. My biopsy showed dh. My dh didn't go away until I went gluten-free cf for a few months, then for a couple years, the itch, not the rash, was the first sign I had glutened myself. Now I don't even get an itch (I've been gluten-free since 2008).

Link to comment
Share on other sites
Casy Contributor

I see so many different DH rashes! Thanks for confirming it may fit the profile. I'm thinking a biopsy is in my future... hopefully I can catch a dermatologist when I have an outbreak. 

Link to comment
Share on other sites
squirmingitch Veteran

If you have an outbreak & have it biopsied for dh, it will turn up negative. Sorry. Just like for the blood tests & the endoscopy, you MUST have been eating gluten. So you would have to do a gluten challenge.

Link to comment
Share on other sites
Laoshi Rookie

I went off gluten, and the dh didn't go away but got gradually worse.  Then I went off dairy completely and the dh cleared right up.  It hasn't come back, and I've heard that dairy is not much different from gluten on the molecular level, so the immune system is just being overly protective I guess.  After a year I re-introduced dairy gradually and the dh didn't come back, but other symptoms did. Go figure. So now I'm off dairy again. Aargh.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Casy Contributor
2 hours ago, squirmingitch said:

If you have an outbreak & have it biopsied for dh, it will turn up negative. Sorry. Just like for the blood tests & the endoscopy, you MUST have been eating gluten. So you would have to do a gluten challenge.

I have never stopped eating gluten, like, not ever.

Link to comment
Share on other sites
Casy Contributor
30 minutes ago, Laoshi said:

I went off gluten, and the dh didn't go away but got gradually worse.  Then I went off dairy completely and the dh cleared right up.  It hasn't come back, and I've heard that dairy is not much different from gluten on the molecular level, so the immune system is just being overly protective I guess.  After a year I re-introduced dairy gradually and the dh didn't come back, but other symptoms did. Go figure. So now I'm off dairy again. Aargh.

You know, the thing I have been really wondering is if people can have celiac-like reactions to casein alone.  I haven't ever come across any reading that suggests that could be a possibility though. Everything I have read regarding casein is that yes, it can make celiac symptoms worse, or if it's an allergy, there will be typical allergy reactions (ie, vomiting, nausea).

Link to comment
Share on other sites
squirmingitch Veteran
4 hours ago, Casy said:

I have never stopped eating gluten, like, not ever.

Okay then, you're good to go for a biopsy. Sorry I misunderstood & thought you were off gluten now. Make sure the biopsy is taken correctly from clear skin adjacent to an active lesion. Warning ~~~~ scratching easily destroys the patterning the pathology will be looking for.

60% of us with dh test negative on the blood work so a dh biopsy is the best way to go.

Link to comment
Share on other sites
  • 2 years later...
Meggan Newbie
On 6/4/2017 at 1:45 PM, squirmingitch said:

Okay then, you're good to go for a biopsy. Sorry I misunderstood & thought you were off gluten now. Make sure the biopsy is taken correctly from clear skin adjacent to an active lesion. Warning ~~~~ scratching easily destroys the patterning the pathology will be looking for.

60% of us with dh test negative on the blood work so a dh biopsy is the best way to go.

Wait if you have cut out gluten you could get a negative from biopsy? I thought the antibodies were there under the skin regardless?

I had been gluten-free for a couple weeks but with probably one f$#% up a week, I call it the learning curve. So not fully gluten-free before the biopsy. But I didnt realize that could give you a negative because the rash wash still so itchy and moving all over. Not as mental as before though.

 

 

 

 

Link to comment
Share on other sites
squirmingitch Veteran
On 11/26/2019 at 10:40 PM, Meggan said:

Wait if you have cut out gluten you could get a negative from biopsy? I thought the antibodies were there under the skin regardless?

I had been gluten-free for a couple weeks but with probably one f$#% up a week, I call it the learning curve. So not fully gluten-free before the biopsy. But I didnt realize that could give you a negative because the rash wash still so itchy and moving all over. Not as mental as before though.

 

 

 

 

I know, it's a mind&%$&. Yes, the antibodies do linger there under the skin but not in a manner that shows in the pathology of the skin biopsy. The rules for a dh skin biopsy are the same as for celiac serum panel or endoscopic biopsy -- you MUST continue eating gluten every day until the day of the biopsy or blood draw.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Mary Em's topic in Related Issues & Disorders
      9

      Passing out

    2. - Dhruv replied to Dhruv's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      Confused with test results

    3. - Suzyq112 replied to Jean Shifrin's topic in Related Issues & Disorders
      17

      Severe joint swelling from Celiac

    4. - trents replied to Dhruv's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      Confused with test results

    5. - trents replied to Dhruv's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      Confused with test results


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,751
    • Most Online (within 30 mins)
      7,748

    Xinlu
    Newest Member
    Xinlu
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Y'all may want to get tested for POTS (Postural Orthostatic Tachycardia Syndrome) which can cause fainting, and Gastrointestinal Beriberi, which manifests with vomiting, abdominal pain, diarrhea, fever, chills, and low blood pressure. POTS and Gastrointestinal Beriberi are Thiamine Deficiency Disorders.  Celiac Disease causes malabsorption which results in malnutrition.  Malabsorption affects all the essential vitamins and minerals.  Thiamine, in conjunction with the other B vitamins, makes life sustaining enzymes which enable our body to function.  Gluten free diets can be low in essential B vitamins, especially Thiamine Vitamin B1.  Gluten free processed foods are not required to be enriched with vitamins like gluten containing products.  We need additional extra Thiamine when we consume a high carbohydrate diet.  Consistently eating lots of empty carbohydrates (like gluten free processed foods) can precipitate Thiamine Deficiency Disorders because Thiamine is necessary to turn carbohydrates into energy for the body.  We have an increased demand for Thiamine when we are physically ill, emotionally stressed and physically active, especially in hot weather.  Thiamine cannot be stored in the body longer than three weeks, so deficiency symptoms can appear in as little as three days.  Early symptoms which are vague, include fatigue, depression, irritability, anxiety and malaise.  Symptoms can wax and wane depending on how much Thiamine we consume in our daily diet.  A twenty percent increase of dietary thiamine causes an eighty percent increase in brain function.  The brain, just sitting and worrying, uses as much Thiamine as muscles do while running a marathon.  The cerebellum and the Vagus nerve, which controls blood pressure, digestion, heart rate, also use LOTS of Thiamine.   I limped along for years with a subclinical thiamine deficiency, while suffering from bouts of Gastrointestinal Beriberi and POTS.  My doctors never connected any of my health problems to nutritional deficiencies.  It's just not on their radar.  I studied nutrition before earning a degree in microbiology.  I was curious what vitamins did inside the cells of the body.  I thought "it couldn't be that easy."  Though doubtful, I started supplementing with high dose Thiamine, and had improvement within an hour!  Occam's Razor:  sometimes it's the simplest things.  Thiamine is safe and nontoxic even in high doses.  The B vitamins work together, so I took a B Complex.  The B vitamins are water soluble and easily excreted if not needed.  No harm, no foul to try.    Do talk to your doctor and nutritionist about supplementing with essential vitamins and minerals.  Testing for nutritional deficiencies (though not accurate measurements of deficiencies) should be done before beginning supplementing otherwise you're just measuring the vitamins you ate.  You can have vitamin deficiency symptoms before there are changes in blood levels.   Anemia can be helped by supplementing copper, thiamine and the other B vitamins like B12, as well as iron.   Migraines are improved with Riboflavin Vitamin B 2.  I used to have severe three day long migraines, but Riboflavin made them go away.     Thiamine deficiency disorders: a clinical perspective https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/
    • Dhruv
      @trentsvery well said. But in india we mostly use pure form of wheat,  like wheat flour or Samoline than refined all purpospurpose Flour, which is very unhealthy. Over the period since atmosphere changes, globe warming definitely affecting whole farming concepts. I m not worried about how my child go off on wheat but why he can't eat once in a while his favorite food? I m also worried to take him completely off from wheat as that may make him more sensitive and cause any other diseases. No doctor has answer of my questions. How many people in this country or india suffer from more dangerous stomach diseases? If you see nothing is good for our body, drinking alcohol, medicines, smoking,  spicy food, green chilli, still we eat, and specially in India,  we eat a lot of spice everyday, our internal body organs had made that way, that's not the case anywhere else in the world we have more than 261 states if india , each state/city has different food, use different ingredients, ultimately it's human body, but it's the way how you develop your body and for which food. Cutting off on staple good is not a good idea, definitely we can decrease the quantity,  if i put my son only on rice, he may get sugar, that means one or other problem. How he can get his energy without eating carbs. I believe everything in small quantity is good for your health. Overdue or stopping can make more complications. When I send my sons reports to india , doctor said he is just above normal,  and don't think about it as if you eat wheat,  you will come positive for this test. I m just gathering opinions to make best decision. We asked him to keep a balance, once in while eating will never be harmful! 
    • Suzyq112
      Thank you! I will look into these! 
    • trents
      http://celiacindia.org.in/about-celiac-disease/celiac-disease/prevalence/ The incidence of celiac disease in India is the same as in the West. There has been a dramatic increase in the diagnosis of celiac disease in the past 30 or so years in developed countries. This has coincided with the development of good diagnostic tools and greater awareness and may also indicate higher rates of development of the condition due to changes in diet, environmental toxins, overuse of antibiotics and whatever things contribute to gut dysbiosis in our modern lifestyles. Some people believe that hybridization of wheat to produce varieties that are more drought and disease resistant and contain more gluten has also contributed to the problem.
    • trents
      The onset of celiac disease can happen at any stage of life. And I don't think wheat is any less a part of the typical American diet than it is in India. But it may be true that we probably introduce wheat later into the diet after birth in the West than is common in India. I'm not sure it is accurate to say that having Asian genes affects the diagnostic process. Celiac disease is not uncommon in India. We have lots of Indian celiacs who have participated in our forum. It probably is true that the recognition of celiac disease in India by the medical profession happened later than it did in the West but I think it has become just as common in India as it has here. 
×
×
  • Create New...