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
      104,351
    • Total Posts
      920,500
  • Topics

  • Posts

    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Would you review this on Find Me Gluten free?  You can  use the app or just go to it on line. If the restaurant isn't listed, there is a way to suggest it.  I have done that and it works.  Many of us look at that site/ app
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,416
    • Most Online
      1,763

    Newest Member
    djs2117
    Joined