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
      104,697
    • Total Posts
      921,783
  • Topics

  • Posts

    • The anxiety thing is there I take teas, and supplements along with CBD oil to help with it, and long walks and exercise when I get antsy. As for the human interaction it is a mix of other mental issues, and the way I feel about people who can eat gluten. If they are not eating I have no issue talking with people. I mentioned I have issues accepting them as the same species when I see them eating. My reaction to gluten is so ingrained in me that it is not a food but a poison, that watching others eat it causes a subconscious reaction where I find myself avoiding them and looking down on them like something from another planet. I end up disgusted with them and walking away, I will go out of my way to avoid people and places where foods like this are present. This is my TRAUMA part of the gluten exposure, and one of the big things I am trying to address in my life right now. I know it is irrational to do so but I end up doing it, I have never cared about others race, religion, or looks, but if I see them eating a gluten/poison, it somehow changes how I perceive them and interact with them and I hate this part about me. It is taking a lot of mental effort to try to smile and treat them as a human, and not something to be looked down upon in disgust. I just recall that mental state that gluten puts me in with my mind and body turning against me and not doing what I will it and the fear comes back. This diet is pretty much like mine, I take Doctors best Magnesium powder in a tea that is actually brewed with st johns wort (never thought much of it) , I use Liquid Health Stress & Energy along with the Neurologic Support they have, twice-three times a day for B vitamins(along with a bunch of other supplements) . I can not digest meats or carbs well, meats it is a issue with breaking them down same with egg yolks, I literally just burp up the undigested meats hours later. I have found the only way to eat them is to boil/slow cook them til they melt then blend them into a broth and have it with digestive enzymes so only do it with turkey bacon, longhorn, and salmon in small amounts in soups or for flavoring stock for stir frys.  As for Carbs like rice and potatoes I end up getting really gassy and bloated, same with sugars in any amount greater then like the size of my thumb give or take. Oats I only have gluten-free Harvest in about a tbsp amount when tasting recipes of stuff I sell at farmers markets. So I eat mostly fats and protein from egg whites, nuts, seeds, veggies, and vegan protein powders blends balanced for complete proteins. I have at least 1-2 dried fig, dates, handful of banana chips, or a 1/4 of a small fruit with meals for fruits.  My meals are mostly egg white and veggie omelettes, stir frys, and soups, Always with lots of fats and proteins in each meal. I have found having nutritional yeast to help with my mood and energy levels also and find someway of having it in meals often. I keep my foods on rotation and keep getting updated feed back on ratios with my dietician. I also have a rather odd list of foods I can not eat due to allergies/intolerance.
    • It only takes a minute to make a difference. Celiac disease has been overshadowed by the gluten-free diet fad. Getting diagnosed and staying healthy is no piece of cake – those of us who have celiac disease struggle to stay healthy. We need better. We need to be understood. We need a cure. View the full article
    • If you are one of the approximately 2-3 million Americans with celiac disease, ZyGluten™ may be taken before you eat out at a restaurant or a friend\'s house, as it may help break down any gluten cross-contamination that you might encounter. View the full article
    • Advil (ibuprofen) is gluten-free, but can be a stomach irritant, especially if taken on an empty stomach. That said, I will also place my bet on the garlic and onions. As Raven said, eating more than once a day may also help. An empty stomach is likely to be an irritable stomach.
    • DaVinci's Pizza has several gluten-free items great gluten-free pizza (well done suggested) and they don't have anything with gluten that goes in the fryer, so wing and fries are great all salad dressing made in house and gluten-free.  Owners mom has Celiac so they're very empathetic. Cheers. And enjoy. I eat there all the time and have NEVER had an issue. And if someone just touches bread then prepares my food its all over for me 6-8 hrs of reaction for me. Also Jimmy Johns @ 17th and Peachtree Street also great just tellm'to change glove and ask for the paper to be placed on the sandwich board before they make it. Also never had an issue but I have only had the Italian style lettuce wrap. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,702
    • Most Online
      3,093

    Newest Member
    Gigi Fagon
    Joined