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

New Member And So Worried About Being Diagnosed As Celiac, Please Help?
0

7 posts in this topic

Hi everybody. I am a new member and I went searching for an active Celiacs forum because I am sure I will be here often.

 

Ok so backstory:

 

Since abou 5 years or so ago I have had these hard red bumps on both of my elbows. Occassionally I would get a slight rash of tiny little red pimple like things around the original hard red bumps on my elbows. The rash was never bad and never spread anywhere other than around my elbows. The hard red bumps never go away and they never itch but if I bump them on something they hurt really bad. I never had them on my knees either.

 

Fast forward to 5 days ago, I broke out in a horribly bad rash all over my arms, legs, and the lower part of my back right above my butt. The rash above my butt is very very bad. The whole rash itches like crazy. I didn't know what it was and I was thinking maybe it was an allergy to coconut oil that I started using as a sexual lubricant. I have used coconut oil many times before but last week I was using it every day so I thought maybe the increased exposure caused me to break out. I also developed a single hard red bump on my left knee.

 

I started googling about hard red bumps on my elbows and the first thing that popped up was dermatitis herpetiformis. I read more and the symptoms of the gluten rash matched me exactly, except I don't seem to have any stomach issues. I have frequent constipation (most of my life) but I think that is from a lack of drinking water (I hardly ever drink water). I also don't eat good at all, very unhealthy I admit. I eat tons of gluten filled foods daily.

 

So I went to a dermatologist today and he said that my rash suspiciously looked like the gluten rash so he took a biospy of a lesion on my back and one from my arm and sent them off for testing. I won't know the results for another 10 or so days. I asked him if I am positive for dermatitis herpetiformis if that meant that I was also a Celiac with a gluten intolerance. He said no, that does not neccesarily mean that I am gluten intolerance and he said that Dapsone was the only thing that would control this and I don't need to worry about going on a gluten free diet because "being gluten free is just too hard to do". His words exactly. I thought it was odd so I came home and researched some more and I read that the only known cause of dermatitis herpetiformis is being gluten intolerant so I think his advice was pretty bad. How could a medical doctor tell me that I don't have to be gluten free and just take medication if I have a gluten allergy? Sounds like a bad dermatologist but he is the only one in a 60 mile radius.

 

So I guess my question is, can you have dermatitis herpetiformis and NOT have a gluten allergy? Is it possible at all or should I just assume, if the biospy comes back positive, that I am gluten intolerant? I don't have medical insurance so I can't afford a bunch of tests. I could barely afford paying for the office visit and the lab fees for the biospy. And what if the biospy does not come back positive? I read online that the doctor is suppose to biospy a piece of clear skin next to a lesion because if he takes a lesion itself that the test will always come back negative.... is this true? I hope he did the biospy right because I really can't afford anymore testing. He said if the results are not positive then he will need to take a bigger piece of skin and have that tested. My rash is healing though and it's almost gone. It was really flared up on Friday and I couldn't get in to see him that day, today they are healing over so I'm not sure if he got a good biospy of it or not since they are already healing and dissapearing.

 

I have never had a rash this bad before so can the gluten rash just suddenly appear, horribly bad, just out of the blue like that? I've been eating gluten forever and I never had a break out like this.

 

Thanks so much for any advice :)

 

 

 
0

Share this post


Link to post
Share on other sites


Ads by Google:

If you have DH, you have Celiac disease:

http://www.cureceliacdisease.org/archives/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed

http://www.cureceliacdisease.org/archives/faq/what-is-dermatitis-herpetiformis-dh

FYI: Celiac disease is not an allergy, it is an autoimmune disease.

 

So according the first link he was suppose to take a sample of non-affected skin next to the outbreak... he took an actual lesion so I suppose my test is going to come back flawed. Lovely. I wish I could tell him that he did it wrong and to do it again for free but I bet that won't happen. He seems like a worthless doctor.

0

Share this post


Link to post
Share on other sites

You could print those out and take them to him.  Make sure they show they are from the U of C website.  He won't care what we say but if it comes from a doctor, maybe....

0

Share this post


Link to post
Share on other sites

so many doctors are so misinformed about celiac disease.  one time i went to my gp and told the nurse practitioner i have it and if she was going to give me any meds i wanted them to be gluten-free.  then i went on to tell her i had to switch lipgloss because it contained wheat oil.  you might have thought i had 2 heads the way she looked at me and then she asked me if i ate my lipgloss.  what a maroon....

 

see what your doc just did there?  he recommended a *drug* that will relieve a *symptom*....   if you have dh, you have celiac.  you should quit eating gluten even if it is 'too hard' - for your doctor lolz ;)  the damage of untreated celiac is not just a skin rash.  

0

Share this post


Link to post
Share on other sites




How long does it take after not ingesting gluten will my rash symptoms dissapear, if I am Celiac? I ask because yesterday I was eating gluten and today I haven't had any at all. It's been about 14 hours since I last had it and my rash is disappearing. I haven't gotten any new lesions and I am not itching. But isn't that too soon to see any improvements? Surely I still have gluten floating around in my system right? I am just worried but I'm almost positive my biopsy is going to come back negative but I am almost positive that I am a Celiac. Just from the rash alone, the places that it is.... on the elbows, knees, and lower back. The only thing that pops up in google is Celiac disease so if I don't have it then what could I possibly have? I am going to go gluten free regardless of the test results because like I said, I am pretty sure I have it. It just seems odd that my symptoms would already be disappearing with 14 hours of no gluten.... or is it suppose to happen that fast?

0

Share this post


Link to post
Share on other sites

?  i don't know - mine pretty much went away (along with allll my other skin issues) when i went gluten-free.  i don't remember how long it took but it did linger and show up without reason.   i had a few flare-ups, but by the time i got to the dermatologist the legions were gone.  and i wasn't knowingly digesting any gluten.  maybe ask on the dh forum?   

0

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
      103,896
    • Total Posts
      919,537
  • Topics

  • Posts

    • Marshmallow Fruity Pebbles
      I have been gluten free now since February and I recently purchased a box of Marshmallows Fruity Pebbles and looked at the ingredients (which none indicated gluten content), but am just wondering if anyone has had a problem with them. 
    • Test Results
      Update: I am about at my wit's end. I won't be able to see my new doctor until July 17 to get a referral to a GI doctor, so I continue to eat gluten and the effects continue to worsen. Today my boss, whom I have been working with for 12 years, and I had a meeting where he said he's noticed a change in many things, such as speech, not articulating well, forgetfulness, and other things that are affecting my work product. I finally told him I know there is something wrong with me medically and I've been trying to get to the doctor to no avail. I recall those four weeks early in the year when I tried out gluten free and was beginning to feel much better- more present, more sharp, and then went back on gluten in preparation for the blood test.  I just don't think I can do this gluten thing any longer and am thinking of going cold-turkey gluten free.  I'm 54 years old, am beginning not to care about a diagnosis because I just want to feel better and be able to do what I need to do. Because of how I felt going off of gluten earlier in the year, and eating gluten free when I was on the McDougall plan years ago, and how I feel while doing this gluten challenge, I am pretty convinced that my issue is gluten.  Any words of encouragement would be welcome.  If you've done gluten free and never looked back, tell me about it. 
    • Gardasil
      "I got this vaccination in 2009 when I was 20 and it completely altered my life. Made my celiac disease so much worse, sleep 15-18 hours a day, SIBO, it has completely altered my life since getting this vaccination. My doctor has two twin girls about my age and they both have digestion problems after receiving gardasil Thank you I have a young daughter and have wondered this exact question posed by the poster and your response has given me great pause about this issue which may come up in years to come. I am sorry to hear this wreak havoc on your life, but simultaneously thank you for sharing this detail to help those of us that have likely been decades misdiagnosed celiacs now raising children. Thank you.
    • Gluten does WHAT to the brain?
      "Wondering what kind of life my brother could have had - if  he had celiac - constantly haunts me" My sympathies that is just tragic, as this story is.  I hope you are at peace knowing you are aware of your celiac and help so many lost, scared, and confused celiacs here. It can never bring back your brother but I hope it can give soften some of what you feel that was/is beyond your control. His suffering and your loss has made you a better advocate to yourself and in your work helping us. I don't like my body or my  brain on gluten either. I do fear that people overlook the toll inflammation takes on the brain. It likely may explain decades of mental illness that was brain based inflammation unknown until changes in technology advancement catch up. However consuming gluten to study how one enters psychosis may not be the best method. Do no harm.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,943
    • Most Online
      1,763

    Newest Member
    purplerain
    Joined