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JaneWhoLovesRain

Member Since 09 Mar 2012
Offline Last Active Oct 07 2014 03:52 PM
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Posts I've Made

In Topic: Help...so Confused

02 October 2014 - 05:03 PM

Hi Loverbug - yes, I've been down the scabies road and so have many others here.  The dermotologist I saw insisted it was scabies because it itched so bad, he said dh does not itch (he was very stupid). My PCP's PA also said it was scabies.  I saw another dermo and had a biopsy for dh but it was negative, too late I found out she biopsied a lesion, not a clear area. This doctor said it probaly was not scabies.   I live alone, I had virtually no physical contact in the weeks before my rash. Unless you can get scabies from a grocery store cart it would be almost impossible for me to have had it but they insisted that is what it was.  No one ever did a scraping.  If I had it to do over I would not have done the scabies treatment because now I will never know with 100% cetainty that it was dh I had.  It was a GI doctor who told me I had dh/celiac but by the time I saw him the rash was 99% gone.  I also suffer from vertigo attacks and because they may be gluten related it is not safe for me to take the gluten challenge so I was told to assume I have celiac and never eat gluten again.  My biopsy came back as possible allergic reaction, which sounds similar to your possible medication or bug bite. 

 

At the timeof my rash I had been gluten-free for a year or two but I believe I had cross contamination.

 

There are a lot of similarities between the two but also some differences.  Both itch like the dickens, but dh itches more..  You wrote "so extremely itcy I serously wanted to die."  I so well remember thinking that if I had to live like this for the rest of my life I would rather be dead.  A classic symptom of scabies is that the rash is between the fingers; it dh it presents mostly on the knees, elbows and buttocks.  That's where mine started but slowly spread elsewhere.  Mine was exremely bilateral.  Almost a mirror image from side to another.  Another dh sign is burning a few hours to a day or two before a new area of breakout.

 

Did you husband or daughter ever break out?  If not, it would be quite unlikely that you have scabies, it is really catchy!!  The dapsone could definitely be the reason things are getting better.

 

Can you post pictures? 


In Topic: Dh Sometimes Look Like Poison Ivy?

29 September 2014 - 02:50 PM

RIta - I had poison ivy quite regularly as a child and can easily tell the difference.  They both itch terribly but there are differences.  DH will be symetrical and the blistering isn't as obvious.  For me the majority of the poison ivy would be gone in a week but DH seemed to last forever. Also my skin was much more sensitive and inflammed with DH.  They felt different, but I don't know how to explain a sensation. :unsure: Have you tried taking an antihistamine? 


In Topic: DH Photo Bank

29 September 2014 - 02:39 PM

Hi - I just happened to log in today!  When I told the GI doctor I saw (which wasn't unitl a couple of years after going gluten-free) all of my symptoms, he said he was 85% sure I had celiac based on my symptoms alone.  He said the only one that didn't fit was the rash BEHIND the knees, he said it should be in the front of the knees.  I personally don't think it makes much difference if it is front or back, my rash was very symmetrical and the itching was horrendous and all my other itchy spots fit celiac to a t.

 

Dapsone is supposed to help right away from what I understand, within a couple of days there should be definite improvement.  I've never taken it though, so I can't speak from experience, just from what I've heard others say.

 

Jane


In Topic: Gluten Free Since 2010 And Still Suffering.

29 September 2014 - 02:13 PM

Hi - I'm wondering if you are eating anything that has the ingredients sorbitol  or manitol or inulin.  These give me terrible stomach and intestinal cramping and diarreah and nausea.  They are right at the top of my do not eat list along with gluten.

 

Edited to add - xanthan gum can do it also and unfortunately it's in a lot of gluten-free food as well as non gluten-free food.


In Topic: Letter From Dentist To Dental Patient With Ai Suspicions What Should It Say?

01 June 2014 - 04:03 AM

Personally I think if my dentist has sent me a similar letter 15-20 years ago I would have 1) not believed him for a second that I might have celiac and 2) freaked out cause it would be scary to get a letter like this.

 

However, I will say that if he examed my mouth/teeth and then verbally told me his findings it would have gone over much better.  He could have answered questions I had, reassured me I'm not going to die within the week, given me a print out, offered to write a letter to my doctor, and also told me that chances are I do not have celiac but I should perhaps be tested because there is a slight possibility of it, and it would be good to know this sooner rather than later so I can start treatment.  I think if any medical doctor/dentist sees something that is not in his field of expertise but is concerning he has an obligation to inform the patiet (for instance if the eye doctor notices a bad looking mole on the tip of a patient's nose he needs to tell the patient to get it checked out and follow up to make sure this happens, unfortunately most doctors don't have time to make sure the patient follows up.)

 

I remember going to a new dentist 15 years ago and the hygenist commented on something about my teeth, I don't remember exactly what it was other than some sort of abberation such as ridges or pitting or something that I now know can be indicitive of celiac but back then I hadn't a clue.  This along with a lifetime of multiple cavities, root canals an crowns should have clued a dentist in somewhere along the line that something might be going on but other than this one hygienist there has never been any mention of anything at all by any other dentist or hygenist.  Probably most dentists are as clueless about celiac as other doctors.  SInce my siblings have similar dental issues but do NOT have celiat it may just be a genetic thing.

 

(As an aside I just did a search of images of "teeth celiac" and I've got to say my teeth don't look like any of those. IMH, I think the vast majority of teeth problems are not celiac related)