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

kk020812

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kk020812 Newbie
kk020812
Posted

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 :)

 

 

 
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kareng Grand Master
kareng
Posted

If you have DH, you have Celiac disease:

Open Original Shared Link

Open Original Shared Link

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

kk020812 Newbie
kk020812
Posted
  • Author

If you have DH, you have Celiac disease:

Open Original Shared Link

Open Original Shared Link

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.

kareng Grand Master
kareng
Posted

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....

notme Experienced
notme
Posted

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.  

kk020812 Newbie
kk020812
Posted
  • Author

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?

notme Experienced
notme
Posted

?  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?   

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