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

Benefit Of Going To Dr. Over Just Self Diagnosing?

lanhamae

By lanhamae
in Dermatitis Herpetiformis

Recommended Posts

lanhamae Newbie
lanhamae
Posted

Hey guys,

I am a new member but I've been reading this forum as a guest for a few months now. I think I might have DH based on the different symptoms others have talked about on here. I have an angry red rash all over my lower legs/ankles. It shows up on both sides of my body and currently looks like big open sores because I can't stop scratching it. It's been hanging around for 5 years now, some spots will heal and leave purple looking scars and new areas will open up. I also have a patch on my head and on my neck. I went to the dr and asked him to do bloodwork, he told me it came back negative for celiac and that it didn't sound like that's what I had anyway. My symptoms include horrible migraines (that usually start about 30 mins after drinking beer, eating pasta dishes, etc.) joint pain, gastro issues, infertility, etc. The doctor told me that since I wasn't throwing up all the time and losing lots of weight it probably wasn't Celiac and that my leg was probably eczema (i know I'm new here but I know there are lots of different symptoms of gluten issues so I don't think he knew what he was talking about). I don't think it's eczema though because i've had tons of different steroid creams prescribed by allergy doctors over the years and nothing helps it.

 

I was thinking about going to a dermatologist to get the rash looked at to see definitively what it is, but I stopped eating gluten about 4 weeks ago and already I'm seeing improvements in the rash and the itchy level. However, I was eating at a restaurant and think I may have been cc'd because about 30 mins after lunch my legs started itching like crazy, as well as my hands and fingers. I was wondering if it's worth it to go to the doctor if I already know that cutting out gluten is helping?
Do they give you something like a prescription to help with flare-ups? I would do almost anything right now to stop the itching. It seems like it's worse now than it's ever been (maybe because my body had a chance to heal a little and is now more affected by smaller amounts of gluten?).

 

I don't want to have to go back on a gluten diet after getting a small taste of freedom (4 weeks migraine free is longer than ever in my whole life) but I don't know if there's a reason you should go get a formal diagnosis. Any help would be appreciated!

 

P.S. I saw somewhere in a thread that someone mentioned photo boards? How do I get to those? My rash looks like the DH pictures I see online but this seems to be a more reputable source than just googling it.

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

Celiac.com Sponsor (A8-M):


bluewhitesky Rookie
bluewhitesky
Posted

Welcome! I'm new here too and might not be the best person to answer your questions, but I can direct you to the photo bank thread:

 

https://www.celiac.com/forums/topic/94056-dh-photo-bank/

 

There are also lots of photos in individual threads but you have to spend some time looking around.

squirmingitch Veteran
squirmingitch
Posted

Welcome lanhamae! You pretty much spelled it all out in your post. You have been reading & paying attention & it shows! Good for you! 

 

You answered your own questions. And you know what happens when you eat gluten. Okay, yes, there are MANY symptoms of celiac disease as well as Non celiac gluten intolerance. Repeatedly we hear migraines, joint pains. gastro & infertility! Over & over & over again! Those would be among the most commonly reported from what I've read on here.

 

There would be one reason that I could think of to get an official dx & that would be if you have kids in future & 1 or more shows symptoms of celiac then if you were dx'd, it would make it easier for you to get a dx for the child or children. Otherwise, you might have problems getting the docs to take you seriously & consider any child you have could possibly have celiac. 

 

You know how hard it is to get a dx & how hard is to get a dx when you have dh. 

 

As to any drug to help. Dapsone. But I would advise you to research it throughly before you leap. There are some real repercussions & considerations & you need to be carefully monitored while taking it. Also, if you're allergic to sulfa drugs then you probably won't be able to take Dapsone as it's in the sulfa class. Many here have tried it & had awful  side effects & had to give it up. Some have used it quite successfully. 

 

You can try limiting iodine. See thyca.org for a low iodine diet (minus the gluten foods of course). Check vitamins for iodine content also.

 

Oh, btw, you wouldn't believe how many who had infertility problems & once they were gluten free for a while & the body has a chance to heal, they were able to successfully conceive & have healthy children. So don't think you're out of the game on that score.  :)

lanhamae Newbie
lanhamae
Posted
  • Author

Welcome lanhamae! You pretty much spelled it all out in your post. You have been reading & paying attention & it shows! Good for you! 

 

You answered your own questions. And you know what happens when you eat gluten. Okay, yes, there are MANY symptoms of celiac disease as well as Non celiac gluten intolerance. Repeatedly we hear migraines, joint pains. gastro & infertility! Over & over & over again! Those would be among the most commonly reported from what I've read on here.

 

There would be one reason that I could think of to get an official dx & that would be if you have kids in future & 1 or more shows symptoms of celiac then if you were dx'd, it would make it easier for you to get a dx for the child or children. Otherwise, you might have problems getting the docs to take you seriously & consider any child you have could possibly have celiac. 

 

You know how hard it is to get a dx & how hard is to get a dx when you have dh. 

 

As to any drug to help. Dapsone. But I would advise you to research it throughly before you leap. There are some real repercussions & considerations & you need to be carefully monitored while taking it. Also, if you're allergic to sulfa drugs then you probably won't be able to take Dapsone as it's in the sulfa class. Many here have tried it & had awful  side effects & had to give it up. Some have used it quite successfully. 

 

You can try limiting iodine. See thyca.org for a low iodine diet (minus the gluten foods of course). Check vitamins for iodine content also.

 

Oh, btw, you wouldn't believe how many who had infertility problems & once they were gluten free for a while & the body has a chance to heal, they were able to successfully conceive & have healthy children. So don't think you're out of the game on that score.  :)

Thank you squirmingitch! That is so encouraging to hear. I have seen people with mixed reviews about the Dapsone. I think I would probably want a dx before trying something like that just in case I had a reaction to it. I do have allergies to some other medications so that's also good to know. Also I checked out the photo board and I realized I've got DH all over my hands but I didn't know what it was because those blisters come up in tiny clusters instead of large open sores like on my legs. Now that I know what it is I'll stop touching it!! Thank you guys for all of your help. This forum is a life saver. It's nice to know I'm not alone and other people understand :)

squirmingitch Veteran
squirmingitch
Posted

You're so welcome!

 

Just be extra careful not to get cc'd. It can take ages for the antibodies to get out of the skin & every time you get cc'd it puts more of them under your skin. You want to heal, not take steps backward.

lanhamae Newbie
lanhamae
Posted
  • Author

I am trying very hard to not get cc'd! I've realized once the hard way that it's NOT worth it! haha. Does anyone have any advice for what to do to help with the itching in the short term if I do get glutened or cc'd? I put an ice pack on the area last time and it helped a little bit with the urge to scratch. I just didn't know if that was bad/harmful for already broken out skin or if anyone else had a better idea.

BlessedMommy Rising Star
BlessedMommy
Posted

If you can tolerate Benedryl, that can be helpful. One time when I got a flaming itchy face I took Benedryl for it. The Benedryl knocked the itching and burning out. I also got the rare side effects from the Benedryl, though, which was no fun.

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

Celiac.com Sponsor (A8-M):


BlessedMommy Rising Star
BlessedMommy
Posted

Oh and I understand the frustration of doctors writing off your condition as eczema. My primary gluten symptom was a severe skin rash and my dermatologist just DX'ed it as eczema and sent me home with a prescription for steroid cream. It took me experimenting on my own to figure out that it was food triggered.

squirmingitch Veteran
squirmingitch
Posted

Ice packs won't hurt the rash at all & if it gives you relief then great! Soaking in a hot epsom salts bath helped me too. Here's a link too:

https://www.celiac.com/forums/topic/96552-help-for-the-itching-stinging-burning-pain-of-dh/

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. sc'Que?
      - sc'Que? commented on Celiac.com Sponsor: Review's article in Product Reviews
      1

      Bold Taste, No Alcohol & Crafted to Remove Gluten: Daura Non-Alc Beer Takes Alcohol-Free Beer to the Next Level

      @Daura Damm: Can we get a gluten-free Imperial Oatmeal Stout, please? Please?!?
    2. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet official, the Health Director of...
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac...
    4. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...
    5. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      @Jmartes71, I went to Doterra's site and had a look around. The Doterra TerraZyme supplement really jumped out at me. Since we, as Celiacs, often have digestive problems, I looked at the ingredients. The majority of the enzymes in this supplement are made using black mold, Aspergillus! Other enzymes are made by yeast Saccharomyces! Considering...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,547
    • Most Online (within 30 mins)
      7,748
    GSward
    Newest Member
    GSward
    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

    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • 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.