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

Tell Me About Your Dh--where Is It? How Much Do You Have?

AudraB

By AudraB
in Dermatitis Herpetiformis

Recommended Posts

AudraB Newbie
AudraB
Posted

I am really freaked out. I have the worst doctor in the world and am just beside myself with worry. I have a rash on my buttcheck. I have been wondering the last month or so about celiac. Terrible gas, bloating and alternating constipation/diarrhea. I have been trying to limit the wheat the last few weeks and the gas seems somewhat better. Then I develop this rash about a week ago on my buttcheek.

Went to the Dr today and told him all of this. Showed him my rash. He seems to think it is HSV II (herpes simplex II/otherwise known as genital herpes). My husband of 10 years does not have any rashes or has never had one. He swears he hasn't strayed. I did notice the rash about 3 days after going to the tanning bed. I have looked online at pictures of DH and HSVII on the buttock and they are quite similar.

In a nutshell, I really just want your opinions on your rashes. Are yours widespread or localized? Mine is 1 round spot the size of a quarter.

I insisted on a blood test from my MD for HSVII after my appointment and I had time to digest everyting mentally. I HAD TO TELL HIM THERE WAS A BLOOD TITER TO FIND OUT IF IT IS IN YOUR BLOOD! I work at a hospital and knew this why didn't he???

I am getting a new dr by the way. Any help you have would be appreciated.

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

Celiac.com Sponsor (A8-M):


Michi8 Contributor
Michi8
Posted
I am really freaked out. I have the worst doctor in the world and am just beside myself with worry. I have a rash on my buttcheck. I have been wondering the last month or so about celiac. Terrible gas, bloating and alternating constipation/diarrhea. I have been trying to limit the wheat the last few weeks and the gas seems somewhat better. Then I develop this rash about a week ago on my buttcheek.

Went to the Dr today and told him all of this. Showed him my rash. He seems to think it is HSV II (herpes simplex II/otherwise known as genital herpes). My husband of 10 years does not have any rashes or has never had one. He swears he hasn't strayed. I did notice the rash about 3 days after going to the tanning bed. I have looked online at pictures of DH and HSVII on the buttock and they are quite similar.

In a nutshell, I really just want your opinions on your rashes. Are yours widespread or localized? Mine is 1 round spot the size of a quarter.

I insisted on a blood test from my MD for HSVII after my appointment and I had time to digest everyting mentally. I HAD TO TELL HIM THERE WAS A BLOOD TITER TO FIND OUT IF IT IS IN YOUR BLOOD! I work at a hospital and knew this why didn't he???

I am getting a new dr by the way. Any help you have would be appreciated.

Have you seen any pics of DH to compare? Check out this site about DH (has photo library): Open Original Shared Link DH can look like herpes, but is unrelated to it. Hope you're able to quickly sort out the source of your rash.

Michelle

AudraB Newbie
AudraB
Posted
  • Author
Have you seen any pics of DH to compare? Check out this site about DH (has photo library): Open Original Shared Link DH can look like herpes, but is unrelated to it. Hope you're able to quickly sort out the source of your rash.

Michelle

I have looked at both pictures pf DH and HSV II. They do look very similar which is why I am so perplexed. Hopefully my lab I had drawn today for the HSV II titer might give me something to go on until I get referred to a GI doc in 2 weeks. My MD wants me to go gluten free and take Zantac until my next appt with him...whatever. Thanks for your help!

sharikay Rookie
sharikay
Posted
I have looked at both pictures pf DH and HSV II. They do look very similar which is why I am so perplexed. Hopefully my lab I had drawn today for the HSV II titer might give me something to go on until I get referred to a GI doc in 2 weeks. My MD wants me to go gluten free and take Zantac until my next appt with him...whatever. Thanks for your help!

If you suspect DH, it's probably best to see a dermatologist. He can diagnose for sure. Better to know than not know. I had it on my elbows and forearms first, then it appeared on my knees, buttocks and pelvis. Is it very itchy, especially at night time? If so, it's very probable. Good luck.

brizzo Contributor
brizzo
Posted

Audra....take a deep breath...just a few points...

HSVII can lay dormant for many years before an outbreak.... so you or your husband could have had it prior to meeting each other....it also goes undiagnosed in most people ... 1 out of every 4 people in the US have it. And yes, you can catch it from a tanning bed that wasn't cleaned. Most people will have an initial HSVII outbreak and not have another for years....some never have a second...it's not the end of the world.....(take a deep breath and have a drink.) HSVII is as common of a virus as the day is long.

As far as your labs go. Make sure that you ACTUALLY PHYSICALLY GET A COPY OF THE LAB AND READ IT FOR YOURSELF. Here's why... Alot of times Labs might send something back that says....this person shows viral strains that CLOSELY RESEMBLE HSVII. Then your doctor comes into the exam room and says....sorry ma'am , you have herpies... Then he puts you on a scrip for valtrex....... This does NOT mean that you have Herpies! Make sure that you read the lab report yourself, and don't take meds that you don't need to. And don't go accusing your husband of cheating. HSV!! is VERY comman and can be caught ANYWHERE, and can lie dormant for years....it's not worth ruining your marriage..

As far as the DH goes.... You usually need to be on a gluten free diet for at least 3 months to see results. But some people are instant. One of the board administrators was symptom free almost instantly. But that is not the norm... Good luck, B.

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. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    5. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748
    KABoston
    Newest Member
    KABoston
    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

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.