Help...so Confused

[Loverbug]

HI, Thank you for this forum it's great to know I'm not alone. I was diagnosed celiac 6 year ago and have been strictly gluten free since. I only had the stomach intestinal issues. In April of this year i started getting random itchy tiny bumps on my hands. In May I went to a dermatologist who said I had scabies. My husband who I sleep with everynight nor daughter had anything. He treated me with stromectol and peretherin cream once a week for 2 weeks. I washed everything followed all instructions. It seemed better for a week maybe but it didnt go away infact over the next months it continued to get worse. The spots were random...some blistery, some lumps like a bite and some areas look like hives and so extremly itchy I seriously wanted to die. Saw another dermatologist who was willing to entertain the DH thought. She did 3 skin biopsies and they came back as a possible medication reaction. So i had to go off all medication I was on which too another several weeks. All the while I am becoming more and more miserable. I went back after stopping all meds did not help. The spots had popped up on my hands arms, around my neck hairline, behind my ears, on my butt cheeks and randomly on my legs and feet.Nothing on the trunk of my body. She saw that it was getting worse. She did 3 more biopsies...came back possible medication reaction or possible bug bite. She said she would start me on Dapsone 100 per day. But she also wanted to treat me and my husband & daughter for scabies again since they cant say for sure what it is. (Husband and daughter still have no spots or itching and ive been carrying on like this for months). So i started dapsone first. Took it for a week and seemed to notice a difference but still getting some spots and itching. A week after starting dapsone i continued taking and the family did the scabies treatment once a week for two weeks followed all directions, laundered everthing,etc. Friday will be 2 weeks since last scabies treatment. Still having random bumps and itching however the itching is not as severe as it was before starting dapsone and doing the scabies treatment. The spots are so random and if I dont itch them they will go down and be almost non existent by the next day. Needless to say Im totally losing my mind. Is it Dh or scabies...it's hard to even function thinking I might have scabies, the fear of giving it to my family...i scared to even touch anything and my house is so sterile you could eat off anything. It really starts to take over your every thought. My question, is it even possible to get a positive DH biopsy being gluten free (food and topical)for 6 years? Anyone else go through the 'scabies' thing? Is it possible that the dapsone is working since the spots and itching have lessened? Maybe if they increased the dosage it would go away? I'm desperate and would appreciate any advice or thoughts. Thanks so much!

[squirmingitch]

Do you have a gluten free household or is it shared, meaning your family eats gluten but you do not?

 

ABSOLUTELY, you can have a negative biopsy result if you are gluten free!!!!!! For a biopsy to be correct, you MUST be eating a gluten diet for around 2 months, a couple slices of gluten bread per day. And I will add about the biopsy, that it is not like any other biopsy --- it MUST be taken on clear skin adjacent to an active lesion. If the derm is taking it ON a lesion then that's the wrong way to do a dh biopsy. 

 

Yes, it's quite possible that you need a stronger dose of Dapsone.

 

What country are you in?

 

It's easy to find out for sure if it's scabies. I can't believe the derm didn't do this. They take a scraping of the skin & the scabies can be seen under a microscope so this whole scabies business can be resolved very easily & take that worry off your mind. It's ridiculous that this has not been done by the derm!

 

Do you eat out at all? 

 

Is your rash bilateral? That is appearing on both sides. Both legs, both arms, both butt cheeks.... like that.

 

I'm inclined to say you're getting cross contamination from somewhere. 

 

Please answer the questions I asked. It will be easier to try to figure out what's going on if we have more information.

 

Can you give me a really good example of the foods you eat? I mean, are you eating whole foods only or do you buy processed foods?

Are you kissing your hubs if he eats gluten? Does he brush his teeth really, really well after eating gluten but before kissing you? Do you have pets? Are they fed gluten free?

 

Do you STILL even after 6 years read every label every time?

[mitchgam]

I can only give you my similar experience and what worked

It seems that once let go unchecked DH creates a Histamine reaction, long after the offending agent (gluten) has left my system.

So, while I take Dapsone at the first sign of a gluten reaction, once that reaction has taken hold (my eyes and trachea swell), I switch to a regimen of Cortisone or go to the doctor for a shot of it, if severe. The Cortisone (pregnosone) stops the histamine reaction and my skin clears within a few days, not to return until the next incident.

[JaneWhoLovesRain]

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?