Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

What Do I Have?
0

4 posts in this topic

I believe I have DH. After seeing several dermatologists, I am always told that the tests are negative and no-one knows what I have. I have read a lot of the forums and my symptoms seem to be different. I'm hoping the description of what happens to me sounds familiar to other forum members and hopefully I can have a more definitive self-diagnosis. My outbreaks occur on my hands, fingers, feet, ankles, legs, arms and, sometimes, my buttocks. I will suddenly get very itchy in one spot and the itch is intense. There is no rash but sometimes there are little bumps on the surface. I must scratch - there's no way I cannot. When I scratch the area, the skin starts to peel but only the top layer of the skin comes off (similar to peeling after a sunburn). Once the top layer of skin has been opened, the itch goes away. It doesn't bleed but the area waters and the next day I have a very red and sore patch where I scratched. Does this sound familiar to anyone?

Thank you in advance for your reading of my post and, hopefully, a response.

bananababy

0

Share this post


Link to post
Share on other sites


I have DH and have experienced something similar. First: the itching. Almost feels like it is coming from the inside. Second: the little bumps. If it is a large patch of skin that is itching it can almost feel like an orange peel. At this stage, if I catch it before I have scratched too much, I can look with a magnifying glass and see little water blisters that are not always visible to the naked eye. At this stage they itch so much I have to scratch. Third:Skin peels off in a sheet and the lesion is sticky and oozy for a day or two. During this stage it burns. Fourth: Crusts over and eventually heals. In my case the lesion rarely heals right away. It will hang around for weeks or months because new itchy blisters form around the edges. I have had lesions on ankles, elbows, from knee to ankle on shins, buttocks, back of the neck, upper back, forearms from elbow to wrist on the outside. I have had a few isolated ones on my knuckles and hands, my face, on one toe.

Now that I have been gluten-free/iodine-free for a year, when I blister, they are isolated singles and they don't itch nearly as much and don't last nearly as long.

What kind of testing have they done? Bloodwork (celiac panel)? Skin biopsy (from the skin next to an active lesion)? Sometimes if they are not specifically looking for DH, they won't order the correct tests.

0

Share this post


Link to post
Share on other sites

I have had numerous blood tests and a biopsy but I'm not sure it was taken from the right spot. I've also had a colonoscopy and an endoscomy. I've never had a celiac panel - what kind of doctor do you go to to get that test? You are the first person to ever give me a definite answer - thank you!

I have DH and have experienced something similar. First: the itching. Almost feels like it is coming from the inside. Second: the little bumps. If it is a large patch of skin that is itching it can almost feel like an orange peel. At this stage, if I catch it before I have scratched too much, I can look with a magnifying glass and see little water blisters that are not always visible to the naked eye. At this stage they itch so much I have to scratch. Third:Skin peels off in a sheet and the lesion is sticky and oozy for a day or two. During this stage it burns. Fourth: Crusts over and eventually heals. In my case the lesion rarely heals right away. It will hang around for weeks or months because new itchy blisters form around the edges. I have had lesions on ankles, elbows, from knee to ankle on shins, buttocks, back of the neck, upper back, forearms from elbow to wrist on the outside. I have had a few isolated ones on my knuckles and hands, my face, on one toe.

Now that I have been gluten-free/iodine-free for a year, when I blister, they are isolated singles and they don't itch nearly as much and don't last nearly as long.

What kind of testing have they done? Bloodwork (celiac panel)? Skin biopsy (from the skin next to an active lesion)? Sometimes if they are not specifically looking for DH, they won't order the correct tests.

0

Share this post


Link to post
Share on other sites

I gave up on dermatologists after going to three of them who just told me "don't scratch" and "apply this cream". One of them biopsied right in the middle of a lesion (wrong!). I knew that it was something I was eating, so I went to an allergist. He ordered the celiac panel (blood test) and did extensive allergy testing. He suspected celiac due to the appearance of the rash. All of the allergy tests came back negative. By process of elimination he still felt it was celiac. The blood test then came back negative. Further research indicated that a negative blood test is possible with DH in a certain percentage of patients. There was no way I was going back to a dermatologist so I ordered a test from EnteroLab on-line. They tested for the gluten sensitivity and also did a gene test. The EnteroLab test indicated I was having active dietary gluten sensitivity and also had two genes predisposing me to gluten sensitivity/celiac. My allergist felt that the test results from EnteroLab were conclusive enough so I immediately went gluten-free.

In answer to your question, I think any doctor can order the blood test, but a dermatologist would need to do the skin biopsy unless you stumble across a family doc who knows how to do it correctly.

I had to pay for the EnteroLab test myself because my insurance wouldn't cover it, but it was worth it.

My advice to you would be to get copies of your test results and find out if they were looking for celiac. Find out if the dermatologist biopsied correctly. If you feel that you have exhausted all avenues with the docs you can always go strictly gluten/iodine-free and see if it helps you. If you research these forums you will find all kinds of information about how to do it. There are also many resources available both on the web and in books.

1

Share this post


Link to post
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
0

  • Forum Statistics

    • Total Topics
      102,680
    • Total Posts
      914,400
  • Topics

  • Posts

    • Blood sugar, hunger, celiac
      Thanks for your reply. I'm not sure how much fat I'm having, I will check. That could be contributing. Yup I do know about the link between Type 1 and celiac. But when it was first discovered my blood sugar was high, my insulin was tested and it was high...actually it was double the normal amount. C-peptide was tested too and I don't remember exactly but I think it was slightly high? If I had Type 1 or LADA, wouldn't my insulin be lower? It is strange though how I have none of the risk factors for insulin resistance and/or type 2... And in fact I had been on a super healthy whole food, "anti-candida" diet for several years before my blood sugar suddenly went really wacko!
    • CALL TO ACTION: YOUR INPUT IS REQUESTED BY THE FDA ON GLUTEN-FREE ISSUES
      FDA proposed rule on gluten-free labeling of fermented or hydrolyzed foods: If you haven’t already, please take the time to comment on the rule. The comment period closes February 16. But this is truly a CALL TO ACTION.  Your input is needed. You have a voice, you are an advocate for the gluten-free community. Now is the time to stand up and be heard.  Your voice, your words, can help all of us stay safe when purchasing food labeled gluten-free.  Johnna’s Kitchen posted a sample letter you may find helpful http://injohnnaskitchen.com/2016/01/call-to-action-your-input-is-requested-by-the-fda-on-gluten-free-issues/ It takes almost no time at all to copy & paste Johnna's letter into the FDA comment site & it will help us all.
    • Chipolte New Marinade
      I don't think any of their food was " certified" gluten-free?  
    • "Pre-Celiac" & scared
      Is there anyone else "pre-celiac" and asymptomatic like me who has had long-term success without losing their mind and still enjoying eating out without feeling like you have to stay in a plastic bubble?  This site has been helpful to me these past months.   I don't have it "Yet" and I am scared.  Sorry this is long but I wanted to be thorough: Two years ago I started experiencing GERD (heart burn, pain under my left rib cage, and regurgitation).  After trying probiotics, kambucha, kefir, apple cider vinegar, aloe juice, eliminating chocolate, citrus, tomatoes, spices, cinnamon, mint, alcohol, not eating 3 hours before bed, I was no better. I got an endoscopy/colonoscopy.  The dr found gastritis and esophagitis.  No hernia, infection or ulcer.  He started me on PPI.  I got 99% relief.  After 6 months I decided to go off PPI.  After suffering for 3 months, I went back to dr and back on PPIs for a year.  Because I am young, 39, and the PPIs have side effects, he discussed surgery with me. I went to a specialist. All the tests showed my esophagus was normal but my lower esophageal sphincter was not closing properly.  I was a good candidate and decided on the MUSE, (Endoscopically stapling the esophagus to prevent reflux) When the specialist did his endoscopy (1 year after previous one and before I was on PPIs regularly)  he saw villi damage that looked like textbook Celiac.  HUH?  I don't have ANY symptoms.  No cramps, vomiting, diarrhea, bloating, gas, discomfort, NOTHING.  He took biopsies and the results were "non-specific" perhaps "clinically latent celiac sprue" or a number of other things. So I took blood tests.  The celiac gene test was "susceptible" and I had "high" antibodies, but not positive.  Dr said go gluten-free to prevent  celiac. Did the PPIs cause the villi damage because I couldn't absorb the wheat properly and triggered celiac in me?  It sounds reasonable.   I wonder if now that I have had the MUSE and may be able to stop PPIs, will I be able to digest gluten better? Very interesting.  I plan to call a celiac specialist where I live to discuss this with him. I have not eaten gluten intentionally for 2.5 months now.  It did not help my GERD before the surgery.  Dr said they were unrelated anyway.  I am concerned about CC, breathing in, and accidental ingestion, but since I have no symptoms, I can never tell.  So I take glutenease when I eat out and glutamine powder to try to repair the damage.  How careful should I be since I don't have it "yet"? Amy's gluten-free frozen foods are great, and I read every label at Trader Joe's, eat off the gluten-free menu, corn tortillas @ Mexican, no soy sauce or imitation crab @ sushi, steamed veggies @ Chinese, & gluten-free pasta @ Italian. Member Lisa wrote, "Even though you eat as gluten free as possible, you probably consume close to that amount of gluten due to cross contamination in processed gluten free food and other exposures. ...Eating 100% gluten free is a total improbability. "
      Most people with Celiac can handle 20ppm.  So is that equivalent to breathing in flour?  Having a half a teaspoon of soy sauce by accident in Asian food?  I can live without bread and cookies, but gluten is IN  so many things. Some on this site with Celiac have separate toasters, don't eat out, and don't walk into bakeries while there are others that eat out and eat fries made in shared oil at BK.  Even I haven't done that.  Isn't it dangerous? Thank you for you help!!
    • Pins And Needles
      You sure did nail it! I was too worried it was MS or Lupus or Celiac to be able to really give that option a chance. If anything my guess was low b12. The only obvious things in my diet are Vitamin water and protein bars. If you look at food it's in practically everything in pretty high doses. Going gluten-free uncovered this or made it start. MTHFR gene maybe? Magnesium too low? I haven't taken my multi & am looking up everything I'm eating. Still having the twitches but not near as much in my calves and feet. My arch pain is gone & energy is up a bit. Still twitching though and had some arm and shoulder pain overnight. I read it can be 6 months or longer for nerves to heal.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      59,706
    • Most Online
      1,763

    Newest Member
    between_spaces
    Joined