Hi Dh sufferers i want to try and help a many Dh people as i can. I have dh it's one of the worst things you can get. My arms were covered and legs, head I'd have to get shower 4 times a night it would drive me crazy I'd itch all day. I was on dapsone for a short time until my wife told me about coconut oil.i started with on heat spoonful for the first week, the second week two spoonful keep on tha until the blisters have gone. You still need to eat gluten free also my wife uses it for cooing to I have no blisters unless cross contamination. The coconut oil has to be Virgin unrefined the blisters will start disappearing in a few months it works for me and I hope it works for you all.
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Help Dh People
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Super Itchy Rash Going On 4 Years Now
I had a biopsy about 2 years ago it was inconclusive for DH. The dermatologist did biopsy because as soon as he saw my rash he said it looked like dh. It has gotten worse over the years. I have it on my arms, waist, breast, eyes, hands, wrists always on both sides of my body. The skin usually starts to itch before rash even apears. I take about 50mg of benadryl a night just so I can sleep. Every evening the itch is so bad I feel like ripping my skin off. It always wakes me even with the benadryl.
Going to new Dermatologist hopefully soon hoping to have another biopsy done how can I ensure it is done correctly
Going to new Dermatologist hopefully soon hoping to have another biopsy done how can I ensure it is done correctly
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Trazodone And/or Essential Oils
Has anyone who has a DH-like rash been taking Trazodone and/or using essential oils. I had been taking Trazodone for years for sleep (loved it), then I started using essential oils and started getting a DH-like rash. I stopped using essential oils, but the rash continued.
The rash started going away after 5 or so months when I stopped Trazodone. The rash has stopped.
Maybe it all was a drug eruption (as lesion biopsy suggested). But with a family history of Celiac, and the pics of DH matching what I had, I'm wondering if anyone else had a similar rash from Trazodone.
Also wondering if anyone ended up on this site after using essential oils thinking they might have DH, but didn't.
Anyone?
Thanks!
The rash started going away after 5 or so months when I stopped Trazodone. The rash has stopped.
Maybe it all was a drug eruption (as lesion biopsy suggested). But with a family history of Celiac, and the pics of DH matching what I had, I'm wondering if anyone else had a similar rash from Trazodone.
Also wondering if anyone ended up on this site after using essential oils thinking they might have DH, but didn't.
Anyone?
Thanks!
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Possible Dh Rash (Pics)
Hi I was wondering if this looks like a DH rash to anyone? I know it has so many variations . I am so frustrated.... I had a neg blood test and honestly when this started popping up I thought my dog gave me poison oak. My doc gave me prendisone for a 5 day span, it took care of the spot around my eye (on set it burned more than itched) but, I have this on my bottom as well ( i will spare you any photos lol ) however , that particular area does not seem to itch half as bad as my arms , neck , face or legs does that mean its not DH? . I go see my derm on tue morning (i will let him know that the meds will give a false neg) . thanks for any info.
http://s39.photobucket.com/user/syrenabean/library/Facebook/Rash
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I Have Celiac.. Does He?
I really could use some info. I live in the middle of "what's a gluten" land where it takes an eternity to get in to a pediatric dermatologist. I am diagnosed celiac, not DH. My son has had skin issues for a couple of years now. He was initially diagnosed with MCV (contagious water wart type things) but I noticed that they cleared up when he was gluten-free with me. He just spent 5 days at his dad's (eating gluten daily) and he's got a completely different looking rash on his elbows, knees, and ankles.
If anyone is willing to help, lmk. I have pic links I can post.
I just don't know what else it could be.
If anyone is willing to help, lmk. I have pic links I can post.
I just don't know what else it could be.
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Severe Dh? - First Time Poster (With Pictures)
Hi - this is my first post on the site!
I have not been confirmed to have celiac disease yet, however I'm currently waiting for a blood test to come back (along with testing for wheat allergy etc.) to let me know what's wrong.
For the past 2 and half months I've had one of the worst rash's imaginable - it started out with some tiny little spots on my neck, which lasted for about 2 weeks which eventually broke out into severe painful blistering - I visited hospital and was diagnosed with impetigo (I have attached photographs). The antibiotics didn't touch me at all and I was sent for skin cultures, covering fungal, bacterial etc. - it was all negative. The rash just got itchy and felt like a burn as if someone had thrown boiling hot water all over my neck, it was oozing and flaking, and the tiny spots were spreading down my back as well. I was on three weeks of antibiotics, for impetigo, fungal infection and some other bacteria infection which apparently it was.
I'll stop waffling as the pictures explain themselves. I eventually got sick of living with this - it was affecting my life. My doctor told me I had an allergy, but kept blaming the fact I dye my hair (it's not that, I've had skin tests and this appeared a month after last dying it) - so I took it into my own hands and concluded I could have a food allergy (I was diagnosed with IBS 5 years ago, also have issues with my kidneys which are unresolved). I've been gluten-free for 2 weeks and I have FINALLY seen a difference in my rash, after it getting worse and worse for 2 months straight.
However, I am concerned as my rash doesn't look anything like I saw online in it's later stages. I will post below.... WARNING, these pictures are a pretty severe rash. Do I have DH? Or is this a rash associated with just wheat allergy perhaps? (I'm seriously clueless and would be grateful if someone could clue me in as I get nothing from my GP).
First starting out like this, spreading round the back with small pimples too:
Pimples start turning into blisters after about 2 weeks:
This photo was taken at it's worst stage, about 3 weeks ago, persisted at this severity until going gluten-free:
Photo taken a couple of days ago after 2 weeks on gluten-free diet:
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Scalp Blisters
Hi there.
Irish here. I finally got a real dapsone prescription and have been on it for about a week.
My question is, is it normal for them to be squishing out as much as ever? Seems like they are softer now, not as hard, but continuing....I have been on 100 mg. for about a week. Maybe too soon?
seems the face ones are better, and the back ones are medium right now...
I just don't know if thats normal or not. Should it be working by now?
It seems like my whole scalp has them....first left side then right side, then down the middle of my head then left then right, then lower area (where they accumulate alot, which i attribute to having your head up all day and they just accumulate there?)
the scalp ones are my worst thing right now, followed by back.....
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Iga Deificient With Celiac & Dh
Hi - I'm pretty new here and am wondering if anyone has had a similar experience. I'm 42, female. Got a rash ("dots" as I call them) in June 2014. Spread on my legs, bum, back, arms - SUPER CRAZY itchy and extremely symmetrical. First dermatologist did a skin biopsy which indicated drug reaction. As I wasn't on any new meds recently, he decided it was insect bites and told me to buy RAID! (wrote RAID on a prescription pad!!). Next derm took two more skin biopsies; came back as insect bites. He had considered DH but decided not based on biopsies. I went back to my rheumatologist (also have psoriatic arthritis for many years) who did blood work. GP noticed some odd results, ordered more blood tests. Referred to an allergist/immunologist - no allergies other than seasonal - but he was the first to verbalize DH to me - he was certain. GP ordered more tests and it turns out I'm IgA deficient. She sends me to a 3rd derm who orders celiac profile at hospital which includes IgG Transglutaminase test which is over the roof (>250 with ref range >15 abnormal). My IgA Transglutaminase test is normal of course. This gets me sent to 4th derm in a hospital who does a 4th (!!) skin biopsy: drug rxn or insect bites!! At this point, GP refers me to GI doctor (btw I have ZERO gastro issues, no problems at all) who does a gastroscopy and diagnoses me with celiac! Shocking to me. As a result, Derm agrees I must have DH. 7 months passed until I finally got a diagnosis - much of it spent on Prednisone - getting fat and feeling awful. So then I go strictly Gluten Free. Now: 3.5 months later, bloodwork redone and my IgG Transglutaminase test comes back at 32. Much lower - but my skin is still erupting and itchy and most dots just never go away. Somewhere along the way GP gave me Dapsone btw and I had a major rash all over from it - so I can't take it. Have since spent 6-8 weeks on many drugs, cycling through them trying to find one to help. The only thing that helps so far is Clobex spray. I am now on Sulfasalazine - giving me headaches but I'm trying to stay on as I read the headaches sometimes go away as you get used to it and I'm desperate for something to work.
So my questions:
1. Being gluten-free with no results for so long is really difficult - I know I have read it can take 1-2 years - did anyone get better faster?
2. Is there anyone out there who is IgA deficient and was NEGATIVE for DH in skin biopsy but can confirm they do have celiac and got better on a gluten-free diet?
3. Is there anyone out there who is IgA deficient and was POSITIVE for DH in skin biopsy? Can this even happen? My derm just isn't sure and I can't find any studies referencing IgA deficiency and skin biopsies for DH....(but I'm not medical so I don't have access to a lot...if anyone else does?)
Thank you for reading this long post
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Could This Be Dh In Child? Not Really Itchy...
Hi all. My 8 year old son has had this rash on his elbows for well over a year now. He says it doesn't really itch though I see him scratching/picking at it a lot. He has some digestive/immune/mood issues we're trying to figure out and I'm wondering if I'm totally barking up the wrong tree thinking it's gluten. He had attg iga test and it was negative. His allergist/immunologist said the rash is probably psoriasis but it doesn't look like it to me... thanks for your thoughts 
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Glutened And Dh Came Raging Back
Well it's been about 8 months since my DH improved to a level where I could live a normal life. It never really went completely away but it was way better than it was last year around this time. I've been gluten free since OCT of 2013 and the DH didn't really kick in until 3 months AFTER I went gluten free. I posted some of my story in the past so I won't go into it again.
I'm here today because I got glutened and my DH has exploded over the last couple days. I know it'll go away again and better days are coming but I wanted to check in with those who have had a "glutening" experience.
Please... Share... How did your reoccurance unfold and eventually end? I will also share mine as time goes on.
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Linear Iga Dermatosis And Dapsone
Hi All,
I came across this forum after trying to research my diagnosed condition of Linear IgA Bullose Dermatosis. I began having a burning sensation associated with blisters that began to occur after taking amoxicillian back in April 2014. The blisters occur mostly on the palms of my hands and bottoms of feet. I did suffer through an entire body rash which became extremely itchy before beginning to take Dapsone to treat the condition. Now my flare ups are only on my hands and feet when I don't stay on top of the meds.
This is where I started to hear more about becoming Gluten Free. I was tested for Celiacs Disease and the tests came back negative. then I tried to be gluten free for month just to see if it would help my flare-ups. It did not seem to make a difference.
But now I am stuck taking Dapsone as the only medication which has worked to "band-aid" my disease.
I found it interesting that many people with DH take DApsone and I would like to connect with these people.
I feel stuck and as if I have no hope of dealing directly with healing my disease to try and better it permanently. I want to take action and I believe that trying a gluten free diet may be part of that.
For those of you taking Dapsone, do know of any major long term side affects? It seems there is nothing to be too worried about as long as you are not becoming anemic.
Do you know of anyone whom has taken it while pregnant? It is classified as a category C...which means they have not enough or no evidence on wether it is safe. We are planning on having one more child but are waiting until I see if this condition subsides within the next year. but its making me completely insane. My dermatologist says that hopefully it will "burn itself out". But we just don't know.
If you are taking Dapsone, should you be on a gluten free diet? Or is that the case because of the DH and the effects it has on your intestinal track?
I feel so terrible for those of you whom have no way to relieve the blisters and itching that is associated with DH. I have a very similar situation and I can relate...though my blisters burn and even feel hot to the touch. I cannot put my hands in warm water when the blisters are inflamed because of the pain it causes. It is almost as if I burned myself on the stove.
Thank you so much for any and all information gained on this post!
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Possible Dh
Hi everyone this will probably be a ramble but I'm honestly fed up.
A bit of background -
At 13/14 diagnosed with raynauds
At 15/16 horrible itch rash developed in both palms.
I am now 30 and struggling with numerous niggly complaints that alone I probably wouldn't even think about but put together they are adding up.
The only symptoms present now that have been there through out are the raynauds and the rash.
The rash is incredibly itchy , starts as red bumps, them little blisters which are quickly scraped off. At its worst I had to bandage my hands through the day and wear gloves to bed as I had scraped them so raw. Steroid creams had limited success with controlling this and symptoms would come and go. I seen a dermatologist in my teens but recieved no diagnosis or further treatment.
In mid 20s I decided to loose weight and list 5 stone. Throughout this period the rash improved but never disappeared. This remains the case now. In the past 2 weeks I have had 2 flares although they are nowhere near as severe as they used to be.
However for the past 18 months I have just been feeling really awful. The main issue is major fatigue i will sleep 9 hrs of an evening and still fall asleep through the day if the opportunity presents. Along with this I also have the following issues
Hair falling out
Bloating, bubbling and wind
Minor constipation
Extremely dry eyes (to the point I can no longer wear lenses)
Night Vision problems
Aches and pains (muscular and joints)
Irritation/moodswings
Raynauds
General sensitivity to cold
Now twice in the past 6 weeks I've had bloods done and had a no to coeliac. Also had a coeliac test done maybe 5 years ago which said the same.
My dad suffers from vitiligo and scleroderma and my dad's aunt from coeliac.
I spoke to my Dr after last bloods and she's baffled and is currently going back through records to the raynauds diagnosis to see if it sheds light and I'm back to see what she thinks on Tuesday.
My gut instinct is to diagnose the hand issues, shall I push for biopsies ?
Sorry for the ramble
Ali
A bit of background -
At 13/14 diagnosed with raynauds
At 15/16 horrible itch rash developed in both palms.
I am now 30 and struggling with numerous niggly complaints that alone I probably wouldn't even think about but put together they are adding up.
The only symptoms present now that have been there through out are the raynauds and the rash.
The rash is incredibly itchy , starts as red bumps, them little blisters which are quickly scraped off. At its worst I had to bandage my hands through the day and wear gloves to bed as I had scraped them so raw. Steroid creams had limited success with controlling this and symptoms would come and go. I seen a dermatologist in my teens but recieved no diagnosis or further treatment.
In mid 20s I decided to loose weight and list 5 stone. Throughout this period the rash improved but never disappeared. This remains the case now. In the past 2 weeks I have had 2 flares although they are nowhere near as severe as they used to be.
However for the past 18 months I have just been feeling really awful. The main issue is major fatigue i will sleep 9 hrs of an evening and still fall asleep through the day if the opportunity presents. Along with this I also have the following issues
Hair falling out
Bloating, bubbling and wind
Minor constipation
Extremely dry eyes (to the point I can no longer wear lenses)
Night Vision problems
Aches and pains (muscular and joints)
Irritation/moodswings
Raynauds
General sensitivity to cold
Now twice in the past 6 weeks I've had bloods done and had a no to coeliac. Also had a coeliac test done maybe 5 years ago which said the same.
My dad suffers from vitiligo and scleroderma and my dad's aunt from coeliac.
I spoke to my Dr after last bloods and she's baffled and is currently going back through records to the raynauds diagnosis to see if it sheds light and I'm back to see what she thinks on Tuesday.
My gut instinct is to diagnose the hand issues, shall I push for biopsies ?
Sorry for the ramble
Ali
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Ibs, Dermatitis Herpetiformis, Misdiagnosed?!
Hey y'all! This is my first post on any forum, but I have came to my last straw, so I decided I may be able to find some answers from some of you who are diagnosed with Celiac or who were once misdiagnosed. Sorry in advance, this might be lengthy.
I was diagnosed with IBS in middle school, I am now 21 years old. I do not remember IBS ever affecting me to the extent it is now. I was a soccer player for 17 years, very active, raised on whole grains and healthy food, etc. In college I began to run marathons - almost qualifying for Boston after my first marathon. However, 2013, that is when my "IBS" started to go downhill pretty bad.
Thanksgiving 2013: I got so incredibly sick immediately after eating my meal. My stomach was so distended I looked nearly 6 months pregnant if not more... I could not lay down on my stomach, I could not touch it, I was bawling my eyes out and my mom was contemplating if I should goto the ER or not. I did not goto the ER because everyone knows that's expensive as heck and half the time you get stuck with a doctor who is arrogant, or maybe that's just my luck. However, about a week and 1/2 later, I was driving to the gym and had the most intense pains in my stomach just like Thanksgiving. I could not continue driving and had to put my emergency lights on to speed home. I was then taken to the ER and put on IV's, etc. The doctor was VERY arrogant and I remember my mom was going off on her because she was saying I just had a "belly ache." Bull. We did a CT scan and come to find out my small intestines were inflamed along with my pancreas. My grandmother then was able to get me in with her GI doctor stat instead of me having to wait an entire month, thank God.
A few days after this ER visit... I got a rash all over the my thighs that looked like bug bites. Let me add that I NEVER get rashes and it was not chicken pox or shingles. I took pictures of it and made sure to show the gastroenterologist at my appt. When I explained my symptoms and the ER visit, etc. I also showed him the pictures of the rash. I asked him if it could be Dermatitis Herpetiformis. He literally didn't even EXAMINE the picture, maybe looked at it for 2 seconds and disagreed with my opinion. We did a blood test to see if I had Celiac and I tested negative. So, we thought about Crohn's being a possibility.
Symptoms:
- Consistent and explosive diarrhea every morning, sometimes having to RUN to the bathroom. Will go 3-6 times in an hour and a half.
- Or I have constipation. Never a normal bowel movement, basically.
- Some stool will be floating in the toilet, some food not digested will show also.
- FATIGUE OUT OF THIS WORLD causing me to put running on hold and is affecting my every day life.
- Joint pain (more recent) mostly in my knees and ankles.
- Irritability and depression (when feeling bad).
- Stomach cramping, trapped gas or excessive gas which is very stinky, major bloating every day.
- Headaches
- Dry skin, brittle nails, brittle hair
- Circles under my eyes
July 2014: After months of stomach issues worsening, I finally got a colonoscopy and endoscopy by that ridiculous GI doctor. Did more blood work, celiac was negative, but my lipase levels (pancreas) were still slightly elevated - meaning I wasn't breaking down carbs and fat correctly.. Despite my cries of pain with my stomach and the inflammation of my small intestines, SOMEHOW both scopes showed A PERFECTLY FINE STOMACH. There is NO way.... I don't think he took more than one biopsy, so... We left very disappointed and had no answers. He told me to "eat more fiber." I eat a very healthy diet full of fiber... He said my intestines then were not inflamed. But then, I was not eating a diet high in gluten.
February 2015: the same dang rash popped up on my legs but even WORSE and it lasted for about 1-2 hours and was itching like CRAZY. Would come back every night for about 3-4 nights. I had many more pictures of this rash that showed the severity of it, but sadly only could find these two pictures. --- YES I KNOW THIS PICTURE IS QUITE REVEALING BUT IT'S THE BEST SHOT I HAVE OF IT WHEN IT HAPPENED. (SORRY). The rash was also on my forearms, but mostly covering my thighs and bottom.
Currently: I have woken up twice in the middle of the night (back to back nights) with the most NAUSEOUS feeling and in such pain I have to curl up in a ball. My pain would be lower belly and extremely painful. My fatigue is CONTINUOUSLY getting worse and worse to the point where I'm literally about to give up... My gas is EXCESSIVE and stinks terribly. I have some poop that floats in the toilet. Still have diarrhea EVERY time I goto the bathroom. If I don't goto the bathroom in the morning, I'm constipated all day long and will barely pass gas if severely constipated. My head is throbbing, my joints are hurting more and more each day and I am constantly bloated... I am so miserable and have had no answers, I am starting to lose hope that I will ever feel basically alive again..
I really need some input on this whole situation... I haven't been tested for Celiac since that winter/last summer, but I have heard of many people getting negative blood tests and a positive stool sample or positive biopsies... I have also heard of people being misdiagnosed for years who have had IBS but in reality it was Celiac or it eventually turned into Celiac.
Thanks in advance to anyone who is able to help me out for the time being... Sorry again for the picture, but I'm desperate.
Mary
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New Here - Questioning A Gluten Challange - Here Is My Story...
Hi All
I am so glad to have found this forum, I just wish I would have found it sooner. I wanted to tell my story and see if anyone can help with
a few things. I have a billion questions and I do not have an official dx.
I am loosing my mind over this and I am seriously depressed and have a ton of anxiety about how to live with this.
First I am a 35 year old female and married with 2 little girls ages 4 & 6.
My first outbreak happened last year in May of 2014 at age 34.
It litterally started all in one night and changed my life. On that night I was sitting on the couch watching TV and I felt one little itchy bump under my right arm. I itched for a second and asked my sister if it looked like I got bit? She said ya it kind of looks like a bug bite, but a little rashy..as the night went on, more of them started to appear and they spread down my arm (all underneath) and down my forarm down to my wrist. By the next day it was now on my left arm and started in the same exact spot as my right arm (mirror image) and spread the same...This was on a Saturday and Sunday and I saw my Dr Monday.
Prior to this I had gone into my Dr the Monday before this to see about some kind of shot or something I could get in my lower back because I had a really annoying ache in my lower left "SI Joint" - I had been seeing my Chiropractor for the last year before this and he couldn't seem to get it back in place and it just always ached so I thought maybe my Dr could help. SO...he gave me 3 little shots of Cortisone in my back and sent me home with a 5 day dose of Celebrax for the inflamation and I was to see him a week later that next Monday.
So my rash started about 6 days after the shot. I only took about 3 doses of Celbrex bc by that Friday I started to feel kind of weird. Like a bit dizzy and tummy ache and headache. So I thought "I'm going to stop taking this bc I don't feel good and I'll tell him Moday", but by that next day the rash had started. So I originally thought I was just having a bad reaction to either the shots or the celebrex. When My Dr saw me that Monday he said Ok, just stop taking the meds (which I already had) and here is some potent Steriod cream - it was Clobetesol (not sure this is how you spell it?) I asked how long this should last and he said it's hard to say with rashes...come back if it gets worse.
I went home and within the next day or so the bumps started on my right thigh and went down the front of my leg and wrapped around my butt then they appeared in the same pattern on my left leg...I was applying the Clobetesol every day (small amounts, but twice a day) the itch was really uncomfortable at night when they would appear.
I let this go on a few weeks bc he had said rashes were hard to tell - a few weeks in I went back and he even had another Dr come in and they looked and asked if I got poison ivy or changed my soaps pillows etc...No No No nothing. But I was out in some bushes that night I said...I was looking for rocks to paint with the kids and maybe I got bit or brushed against something? they thought it looked like contact dermatitis....he then said if it gets worse or doesn't go away go to the derm. so I waited and kept doing the cream.
By now it was end of July so I went to the derm...he said it was Eczema/Dermatits. I mentioned DH bc at this point I had been googling every night and I noticed DH followed a pattern and mirror imaged and could look like bug bites etc....now back before this big break out I had, had 3 little itchy bumps on my right elbow that I thought were odd, but didn't bother me much just itched slightly once in a while and I thought maybe it was from dry skin? The derm told me that if it were DH I would have itched it sooooo bad that he wouldn't be able to see my bumps bc they would be bloody or pussed/scabed over etc... ( but I kept thinking but what if mine isnt that bad? its just more mild bc of this steriod cream?) but he said well the test if really expensive and I honestly don't think you have it so I wouldn't waste your money...so I went home and used my cream. Now, the rash wasnt insane when people would see it they just looked like some tiny bumps maybe some bites.... So I checked our beds and had our exterminator come in and check for bed bugs. NOPE. then had the derm scrape me for scabies. NOPE. asked again about DH...NOPE. SO I waited and saw another derm...by this point it was August. I told her some new things were starting to happen...I was having a lot of joint pain or atleast what I think is joint pain? Its in my elbows when the bumps appear my elbow get realllllly achy and when I would be sleeping I would have to extend my arms out bc they would ached so bad while bent. My knees would ache too when the bumps were on them. I would get weak in my arms. I would have super bad panic attacks in the middle of the night so I was loosing a ton of sleep. I would be in a dead sleep and wake up with a rush of adrenaline feeling and a racing heart beat like I was super nervous and scared or something? Its the weirdest feeling. This would happen every night by this point. I also started to feel like my back was sunburned and I would get some creepy crawly sensations in my legs knees and elbows.
So I asked the new derm to do a blood test for Auto Immune disorder...She asked why and I said bc I've had this rash for 3 months and now I have joint pain and I read that could mean something auto immune. So she did what I asked. She called me a week later and said it came back slightly positive for auto immune anitbodies (ANA was 1:40)
Next I took those results to my Regular Dr. (I've had this Dr. since I was 6 years old so I trusted him with my life) he said ok so now I am going to run a Lupus panel on you bc anytime we get a positive ANA we run a lupus panel and I'm going to add some thyroid stuff on there bc your Mom has Thyroiditis (Hoshimotos) I said well since your doing that will you run a celiac panel on me? He asked why and I told him I read about this rash called DH and it comes on in your 30s and 40s and I think maybe this is it...He said - you don't have celiac!
I said, but can you just add it on the panel he said you don't have diarrhea or stomach problems....I said I know,b ut these people don't usually have the stomach problems. He just looked down and kept typing out his blood work stuff and that was that. He had his nurse come in and take my blood and I thought maybe he added in the celiac panel...NOPE! A week later he called me in and told me my thyroid looked fine and my lupus panel came back saying I was "borderline" for a "double stranded DNA - DSDNA at a 7" and >10 is positive. So he said now you have to go to the Rheumatologist bc you are borderline so he will run some extra tests, but I don't hink you have Lupus! So off I went....in the meantime still having all my random night waking elbow aches etc...now right before I went to the Rheum. bc he had a few week wait list...I broke out one early morning in some watery blisters all around my elbow. I woke up to a burning pain in my right elbow and I mean a deep burning pain that felt like it was in my bones. Within an hour I had some little blisters appearing all around my elbow almost in a cirlce. and now I was getting some dry itchy flaky skin on my eyelid. These blisters did not itch at all like the little bumps usually did. These just hurt. They never popped or pussed not did I feel the need to touch them! I didn't use the steriod cream either. While I was waitng for the Rheum appt I decided to try an Allergist. He took one look and said thoses don't look like a food allergy, that looks herpetic! So he said you should ask your Rheum if its herpes? and off I went.
The next day was my Rheum appt. He happens to be a close family friend. He looked at them, but was just as confused as everyone else?? He gave me some Valtrex and said see what happens??? He did another blood text work up on me with extra tests and neither would he run a celiac panel bc that wasn't his specialty? He felt my joints and nothing was swollen or red and he didn't think it looked like a lupus rash or psoratic arthritis or psorisis, but he called me a week later and said well your ANA is a bit higher with my test - it's now showing at 1:320 and that is considered elevated for antibodies, but your DSDNA is still low and borderline so??? He said I'm not going to say you have Lupus and your Sed rate and inflamation is at a 2 which is nothing...so its not Rheum arthirisits etc...he said call me if you feel worse or things change, but as of right now the picture isn't clear on anything specific...
So now we are in September and I see my Chiro and he says...why don't you try this diet....it's called WHOLE 30
You remove Dairy Gluten and Sugar as they are all inflamatories and see if it helps your joint pain and maybe clears up your rash - I felt like what do I have to loose? So I did it and it was realllly hard, but I was feeling better. Still breaking out, but way better.
Day 30 I was done and they say you can have a bowl of ice creal to celebrate at the end and then reintroduce those 3 things slowly over the next few weeks. Well we were on vacation for my 34th Birthday in Maui ( how many times will I get to do that again? it was such a wasted trip for me I'm just glad my kids had fun). So I decided to have the ice cream and some garlic bread and ranch etc...and by day 3 here came the itchy little bumps. I cried. I cried the rest of the two week trip and sat in my room on my 35th Birthday wondering how the heck I was going to live like this the rest of my life. My kids barley got to play with me bc I was so depressed. So while I was on the internet i decided to look up a naturopath in my my area. I found one that happened to have celiac herself. The day we got back I was in her office and I told her my story and showed her my pictures. She said no matter what the illness they alway do a food sensitivy panel bc diet can change everything. So we did one and two weeks later it came back she called me in and said "this is very indicitive of a Leaky gut" so I removed everything that showed up - I could no longer have anything I love![:(]()
at ALL. Not even eggs or bacon. So the only things that I could have were veggis fruit (except Bananas Pineapple and Cranberries) and chicken and turkey and fish ( I don't like fish) and beans and brown rice. So to this day thats all I eat. I still broke out from October (when i started) to February this year. Then FINALLY in Feb. I stopped. and that lasted throught April. Then one day I nroke out on my tummy in a few itchy bumps. and its continued since then. I get a few little dots and they itch for a second to let me know they are there and then they stop. I got some on my elbow last week one on each elbow. They itched and stung for seriously a second then stopped and they hung around for a week and now they are gone. So is that DH after youve been gluten-free for a while?
I got my Rhuem to finally give me celiac panel when I got back too and I told him I had been gluten-free for 40 days with a little mess up in Maui and he said well it should still show up. It came back negative! I also went to the derm and asked her to biopsy for lupus and DH finally and it came back negative. UGH I have wasted a ton of money in the last year with no real answer. I saw a gastro this year a little late in the game. But I showed him my pictures and told him my story. He said he would do the endo if I choose to challange it. So I am sitting her debating? Not only for my own satisfaction of a diagnoses, but for me kids...I feel like I want the to be able to know what their mom had.The gastro gave me a slip to have the kids genetically tested and they both showed negative to both DQ2 and DQ8 but my oldest showed one Aleeil (spelling?) to DQ2 - she still showed negative to both genes but has the one aleeil and the gastro says hes confident that neither of them will get celiac. I have DQ8![:(]()
so we can't rule it out for me. I just feel hopeless and helpless....I could really use some advice and a friend to help me through this emotionally and navagate how to get through the rest of my life like this?
I feel like my life was just ripped away from me and everything Is just so much harder to get through a day without completely focusing on food it drives me bonkers. I cry all the time like almost everyday. I still get the weird aches in my elbows especially when the bumps come. Anyone else have panic attacks, achiness in the places the rash comes if there is a joint? My scalp gets one or two rasied bumps like the size of a tiny pimple and itches for a second and then leaves me alone? could this just be food sensitiviteis?
I will work on uploading my photos tomorrow bc its 1am. I tried to post this before and it cut off all my typing![:(]()
I had to re type it out again :/ I could so use a friend that could even exchange numbers bc being a Mom of two little ones makes typing out all my questions realllllly hard. I'm lucky I could do this long post tonight without someone waking up before I was done. ![:)]()
Here are a few questions I can think of right now:
I know there is a gluten-free drug list, but I took Xanex to try and deal with this anxiety I'm having and it said the brand I was taking was okay, yet I broke out in itchy bumps and hives on my hip area when I take it.
Antibiotics? Any that are not okay?
What do you take for the commone cold?
Does Sunscreen break you out? What kind can I wear?
Shampoos and Soaps?
Toothpaste?
Laundry Soaps?
Swimming? Ocean or Chlorine bother anyones skin?
If I do try to challange this...should I just know the answer within a day or two will it be obvious?
What do your breakouts look/feel like after being gluten-free for a long time? If you breakout is it super mild like mine?
Thanks for listening and reading this I know its so long. but I've been waiting till I could tell my whole story and get as much help as I could...again I'll get my pics uploaded tomorrow so you can see what I'm dealing with.
Hugs to all. I look forward to your opinions and advice.
-Missy
I am so glad to have found this forum, I just wish I would have found it sooner. I wanted to tell my story and see if anyone can help with
a few things. I have a billion questions and I do not have an official dx.
I am loosing my mind over this and I am seriously depressed and have a ton of anxiety about how to live with this.
First I am a 35 year old female and married with 2 little girls ages 4 & 6.
My first outbreak happened last year in May of 2014 at age 34.
It litterally started all in one night and changed my life. On that night I was sitting on the couch watching TV and I felt one little itchy bump under my right arm. I itched for a second and asked my sister if it looked like I got bit? She said ya it kind of looks like a bug bite, but a little rashy..as the night went on, more of them started to appear and they spread down my arm (all underneath) and down my forarm down to my wrist. By the next day it was now on my left arm and started in the same exact spot as my right arm (mirror image) and spread the same...This was on a Saturday and Sunday and I saw my Dr Monday.
Prior to this I had gone into my Dr the Monday before this to see about some kind of shot or something I could get in my lower back because I had a really annoying ache in my lower left "SI Joint" - I had been seeing my Chiropractor for the last year before this and he couldn't seem to get it back in place and it just always ached so I thought maybe my Dr could help. SO...he gave me 3 little shots of Cortisone in my back and sent me home with a 5 day dose of Celebrax for the inflamation and I was to see him a week later that next Monday.
So my rash started about 6 days after the shot. I only took about 3 doses of Celbrex bc by that Friday I started to feel kind of weird. Like a bit dizzy and tummy ache and headache. So I thought "I'm going to stop taking this bc I don't feel good and I'll tell him Moday", but by that next day the rash had started. So I originally thought I was just having a bad reaction to either the shots or the celebrex. When My Dr saw me that Monday he said Ok, just stop taking the meds (which I already had) and here is some potent Steriod cream - it was Clobetesol (not sure this is how you spell it?) I asked how long this should last and he said it's hard to say with rashes...come back if it gets worse.
I went home and within the next day or so the bumps started on my right thigh and went down the front of my leg and wrapped around my butt then they appeared in the same pattern on my left leg...I was applying the Clobetesol every day (small amounts, but twice a day) the itch was really uncomfortable at night when they would appear.
I let this go on a few weeks bc he had said rashes were hard to tell - a few weeks in I went back and he even had another Dr come in and they looked and asked if I got poison ivy or changed my soaps pillows etc...No No No nothing. But I was out in some bushes that night I said...I was looking for rocks to paint with the kids and maybe I got bit or brushed against something? they thought it looked like contact dermatitis....he then said if it gets worse or doesn't go away go to the derm. so I waited and kept doing the cream.
By now it was end of July so I went to the derm...he said it was Eczema/Dermatits. I mentioned DH bc at this point I had been googling every night and I noticed DH followed a pattern and mirror imaged and could look like bug bites etc....now back before this big break out I had, had 3 little itchy bumps on my right elbow that I thought were odd, but didn't bother me much just itched slightly once in a while and I thought maybe it was from dry skin? The derm told me that if it were DH I would have itched it sooooo bad that he wouldn't be able to see my bumps bc they would be bloody or pussed/scabed over etc... ( but I kept thinking but what if mine isnt that bad? its just more mild bc of this steriod cream?) but he said well the test if really expensive and I honestly don't think you have it so I wouldn't waste your money...so I went home and used my cream. Now, the rash wasnt insane when people would see it they just looked like some tiny bumps maybe some bites.... So I checked our beds and had our exterminator come in and check for bed bugs. NOPE. then had the derm scrape me for scabies. NOPE. asked again about DH...NOPE. SO I waited and saw another derm...by this point it was August. I told her some new things were starting to happen...I was having a lot of joint pain or atleast what I think is joint pain? Its in my elbows when the bumps appear my elbow get realllllly achy and when I would be sleeping I would have to extend my arms out bc they would ached so bad while bent. My knees would ache too when the bumps were on them. I would get weak in my arms. I would have super bad panic attacks in the middle of the night so I was loosing a ton of sleep. I would be in a dead sleep and wake up with a rush of adrenaline feeling and a racing heart beat like I was super nervous and scared or something? Its the weirdest feeling. This would happen every night by this point. I also started to feel like my back was sunburned and I would get some creepy crawly sensations in my legs knees and elbows.
So I asked the new derm to do a blood test for Auto Immune disorder...She asked why and I said bc I've had this rash for 3 months and now I have joint pain and I read that could mean something auto immune. So she did what I asked. She called me a week later and said it came back slightly positive for auto immune anitbodies (ANA was 1:40)
Next I took those results to my Regular Dr. (I've had this Dr. since I was 6 years old so I trusted him with my life) he said ok so now I am going to run a Lupus panel on you bc anytime we get a positive ANA we run a lupus panel and I'm going to add some thyroid stuff on there bc your Mom has Thyroiditis (Hoshimotos) I said well since your doing that will you run a celiac panel on me? He asked why and I told him I read about this rash called DH and it comes on in your 30s and 40s and I think maybe this is it...He said - you don't have celiac!
I said, but can you just add it on the panel he said you don't have diarrhea or stomach problems....I said I know,b ut these people don't usually have the stomach problems. He just looked down and kept typing out his blood work stuff and that was that. He had his nurse come in and take my blood and I thought maybe he added in the celiac panel...NOPE! A week later he called me in and told me my thyroid looked fine and my lupus panel came back saying I was "borderline" for a "double stranded DNA - DSDNA at a 7" and >10 is positive. So he said now you have to go to the Rheumatologist bc you are borderline so he will run some extra tests, but I don't hink you have Lupus! So off I went....in the meantime still having all my random night waking elbow aches etc...now right before I went to the Rheum. bc he had a few week wait list...I broke out one early morning in some watery blisters all around my elbow. I woke up to a burning pain in my right elbow and I mean a deep burning pain that felt like it was in my bones. Within an hour I had some little blisters appearing all around my elbow almost in a cirlce. and now I was getting some dry itchy flaky skin on my eyelid. These blisters did not itch at all like the little bumps usually did. These just hurt. They never popped or pussed not did I feel the need to touch them! I didn't use the steriod cream either. While I was waitng for the Rheum appt I decided to try an Allergist. He took one look and said thoses don't look like a food allergy, that looks herpetic! So he said you should ask your Rheum if its herpes? and off I went.
The next day was my Rheum appt. He happens to be a close family friend. He looked at them, but was just as confused as everyone else?? He gave me some Valtrex and said see what happens??? He did another blood text work up on me with extra tests and neither would he run a celiac panel bc that wasn't his specialty? He felt my joints and nothing was swollen or red and he didn't think it looked like a lupus rash or psoratic arthritis or psorisis, but he called me a week later and said well your ANA is a bit higher with my test - it's now showing at 1:320 and that is considered elevated for antibodies, but your DSDNA is still low and borderline so??? He said I'm not going to say you have Lupus and your Sed rate and inflamation is at a 2 which is nothing...so its not Rheum arthirisits etc...he said call me if you feel worse or things change, but as of right now the picture isn't clear on anything specific...
So now we are in September and I see my Chiro and he says...why don't you try this diet....it's called WHOLE 30
You remove Dairy Gluten and Sugar as they are all inflamatories and see if it helps your joint pain and maybe clears up your rash - I felt like what do I have to loose? So I did it and it was realllly hard, but I was feeling better. Still breaking out, but way better.
Day 30 I was done and they say you can have a bowl of ice creal to celebrate at the end and then reintroduce those 3 things slowly over the next few weeks. Well we were on vacation for my 34th Birthday in Maui ( how many times will I get to do that again? it was such a wasted trip for me I'm just glad my kids had fun). So I decided to have the ice cream and some garlic bread and ranch etc...and by day 3 here came the itchy little bumps. I cried. I cried the rest of the two week trip and sat in my room on my 35th Birthday wondering how the heck I was going to live like this the rest of my life. My kids barley got to play with me bc I was so depressed. So while I was on the internet i decided to look up a naturopath in my my area. I found one that happened to have celiac herself. The day we got back I was in her office and I told her my story and showed her my pictures. She said no matter what the illness they alway do a food sensitivy panel bc diet can change everything. So we did one and two weeks later it came back she called me in and said "this is very indicitive of a Leaky gut" so I removed everything that showed up - I could no longer have anything I love
at ALL. Not even eggs or bacon. So the only things that I could have were veggis fruit (except Bananas Pineapple and Cranberries) and chicken and turkey and fish ( I don't like fish) and beans and brown rice. So to this day thats all I eat. I still broke out from October (when i started) to February this year. Then FINALLY in Feb. I stopped. and that lasted throught April. Then one day I nroke out on my tummy in a few itchy bumps. and its continued since then. I get a few little dots and they itch for a second to let me know they are there and then they stop. I got some on my elbow last week one on each elbow. They itched and stung for seriously a second then stopped and they hung around for a week and now they are gone. So is that DH after youve been gluten-free for a while?I got my Rhuem to finally give me celiac panel when I got back too and I told him I had been gluten-free for 40 days with a little mess up in Maui and he said well it should still show up. It came back negative! I also went to the derm and asked her to biopsy for lupus and DH finally and it came back negative. UGH I have wasted a ton of money in the last year with no real answer. I saw a gastro this year a little late in the game. But I showed him my pictures and told him my story. He said he would do the endo if I choose to challange it. So I am sitting her debating? Not only for my own satisfaction of a diagnoses, but for me kids...I feel like I want the to be able to know what their mom had.The gastro gave me a slip to have the kids genetically tested and they both showed negative to both DQ2 and DQ8 but my oldest showed one Aleeil (spelling?) to DQ2 - she still showed negative to both genes but has the one aleeil and the gastro says hes confident that neither of them will get celiac. I have DQ8
so we can't rule it out for me. I just feel hopeless and helpless....I could really use some advice and a friend to help me through this emotionally and navagate how to get through the rest of my life like this? I feel like my life was just ripped away from me and everything Is just so much harder to get through a day without completely focusing on food it drives me bonkers. I cry all the time like almost everyday. I still get the weird aches in my elbows especially when the bumps come. Anyone else have panic attacks, achiness in the places the rash comes if there is a joint? My scalp gets one or two rasied bumps like the size of a tiny pimple and itches for a second and then leaves me alone? could this just be food sensitiviteis?
I will work on uploading my photos tomorrow bc its 1am. I tried to post this before and it cut off all my typing
I had to re type it out again :/ I could so use a friend that could even exchange numbers bc being a Mom of two little ones makes typing out all my questions realllllly hard. I'm lucky I could do this long post tonight without someone waking up before I was done. Here are a few questions I can think of right now:
I know there is a gluten-free drug list, but I took Xanex to try and deal with this anxiety I'm having and it said the brand I was taking was okay, yet I broke out in itchy bumps and hives on my hip area when I take it.
Antibiotics? Any that are not okay?
What do you take for the commone cold?
Does Sunscreen break you out? What kind can I wear?
Shampoos and Soaps?
Toothpaste?
Laundry Soaps?
Swimming? Ocean or Chlorine bother anyones skin?
If I do try to challange this...should I just know the answer within a day or two will it be obvious?
What do your breakouts look/feel like after being gluten-free for a long time? If you breakout is it super mild like mine?
Thanks for listening and reading this I know its so long. but I've been waiting till I could tell my whole story and get as much help as I could...again I'll get my pics uploaded tomorrow so you can see what I'm dealing with.
Hugs to all. I look forward to your opinions and advice.
-Missy
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Joint Pain With Your Breakouts?
Hi All
Just wondering how many of you suffer joint pain when you breakout? I still haven't had a dx of what is going on with me and if any have read my story - I went gluten-free on my own suspisions and now would have to challange to find out for sure/ I just saw an allergist today and he thinks maybe Lupus bc based on my joint pain and areas he thinks Lupus may be it. I was just wondering how common Joint pain is on the topic/DH? Is pain in the joints/tissues commone when you get outbreaks? When I get itchy bumps I also get joint/tissue pain with them on my elbows knees
I got one on my collar bone a few days ago and then my chest plate area and the area in between my breast (sternum maybe?) was so tender and sore I could barley pick up my children - it was like I pulled a mescle feeling but I didn't. That lasted for 3 days and now its gone. Now when I breakout they raise itch for seriously one second and then don't bother me again but just hand around for a few days and look like a little pimple....is this consistent with DH on a gluten-free diet to come up itch and then leave you alone??
Thanks so much
btw - @squirmingitch....how are you these days? Did you ever use Dapsone? I saw your old posts about your rash getting way worse after going gluten-free that is so scary What is your current status? Sending HUGS!!
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20 Years Misdiagnosed, Does This Look Like Dh?
Hello,
I am a 27 year old female born with eczema. Somewhere around middle school I started getting lesions on my skin and doctors just assumed the eczema was getting worse. A couple of years ago, one doctor said it might be Psoriasis. It wasn't until recently I was informed that it didn't look like psoriasis but could be DH. I have had this skin problem for about 20 years and it's been a nightmare to live with, I'm feeling hopeful that it can finally be diagnosed correctly. I live in France and getting an appointment with a specialist isn't as easy as just calling and scheduling an appointment. Until then, I just wanted to get the opinion of the forum on whether it looks like I have DH or not. Thank you in advance!!
https://drive.google.com/open?id=0B2jS6MDGcD1mflN3M0I5ZmhYWXF6eVRuNGZBdXRVWF9XQ2U0U2Q3ajB5WXlCQjgtblhRdm8
I am a 27 year old female born with eczema. Somewhere around middle school I started getting lesions on my skin and doctors just assumed the eczema was getting worse. A couple of years ago, one doctor said it might be Psoriasis. It wasn't until recently I was informed that it didn't look like psoriasis but could be DH. I have had this skin problem for about 20 years and it's been a nightmare to live with, I'm feeling hopeful that it can finally be diagnosed correctly. I live in France and getting an appointment with a specialist isn't as easy as just calling and scheduling an appointment. Until then, I just wanted to get the opinion of the forum on whether it looks like I have DH or not. Thank you in advance!!
https://drive.google.com/open?id=0B2jS6MDGcD1mflN3M0I5ZmhYWXF6eVRuNGZBdXRVWF9XQ2U0U2Q3ajB5WXlCQjgtblhRdm8
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Could It Possibly Be Dh?
Hello,
I've been struggling with a reoccurring rash the past several months now and can't seem to find the answer to what's causing it. I've seen multiple doctors, including a GI specialist, a dermatologist, and an allergist and no one has been able to help me.
I had the celiac blood panel done by the GI doctor but he said it came back negative. He also did a SIBO breath test which didn't give me any results either.
The dermatologist initially thought it was my eczema flaring up badly but when the rash started to look more like hives she did a regular biopsy which I did not realize can't tell you if you have DH or not. I was sent to an allergist from there and nothing came up on the environmental/food allergy panel so he ordered a TON of blood work because he's convinced I'm having an allergic reaction to something.
The lesions I had on my arm and back (which originally sent me to all these doctors) are pretty much healed now but I woke up this weekend with a super itchy/blistery lesion on my ankle and I'm pretty upset the rash is back. The itching is non stop and it's constantly throbbing, swollen, and if I do itch it, it burns slightly. Although it was hard to make out any blisters on the rash that came up on my arm/back a month or so ago, I can clearly see blisters on this lesion on my ankle and I just don't know what to think anymore.
Does this sound like DH? I feel like all the spots my rash has come up are not characteristic of DH and all the doctors I've seen have been pretty skeptical/don't care whenever I ask if it could be gluten causing the issues. The GI specialist was the meanest by far.
I've attached a few photos but idk if it will help or not. Just thought I'd make a post and get some of your helpful feedback. Thank you.
https://drive.google.com/file/d/0Bws1XIX0hKNYNmYzd1I2UFJPbDZQLWpKSS1RdVFGMHpQb25N/view?usp=sharing
https://drive.google.com/file/d/0Bws1XIX0hKNYZkpCdW5JY1otQjN2WGhwWnVIRThkY3FkLXRN/view?usp=sharing
https://drive.google.com/file/d/0Bws1XIX0hKNYQ3dDWDg4Q204Uk1EaWhPRHktTUhYbjhRZEFR/view?usp=sharing
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Dh And Iodine Contrast
Has anyone who experiences the DH rash had a CT scan with contrast? My doctor ordered one for me, and when I realized that the contrast is iodine based, I headed straight here to ask around. I was not properly diagnosed with DH rash after my celiac diagnosis, but my doctor strongly suspected that's the kind of rash I had, since it occurred around the time of my celiac disease diagnosis and cleared since adopting the gluten-free diet. I had a small bit of rash breakout after eating some seaweed snacks. I read that those with DH rash often need to avoid iodine, so I have since then.
Has anyone with DH had this type of procedure done? An imaging tech at the center where I'm having my scan said that there's a pre-medicating protocol for those with allergies to iodine. I don't understand the DH rash/iodine connection, so does anyone know if premedicating would be effective? Anyone with experience with this out there?
Thanks!
ThisGalsGlutenFree
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Too Fat For Dh?
For about 4 years, I've had a rash that appears occasionally. The first occurrence was very short lived, and was only on my shins. Now it's appearing every few months. The current breakout started on my shins, and it's worst there, but I also have a few blisters on both elbows/forearms and both knees. My back and scalp also itch like crazy. It finally bothered me enough this time to visit the dermatologist, and he told me it's eczema, and prescribed a steroid cream. I asked him if he thought there was a chance it might be DH. He said no, because if I had DH I would also be having gastric issues, and he pointed out that it doesn't look like I'm having any malabsorption issues. 
He also said DH is a blistering disease. I told him that my sores start out as small blisters, but that I inevitably scratch them open. He clarified that the blisters would be larger with DH, and that I would also have them on my buttocks and hairline.
I'm not going to spend time arguing with a doctor about whether fatties can have DH, because I know they can. This dermatologist is actually VERY well respected in my area, and in the past he quickly diagnosed and treated dishydrotic eczema that was making me miserable. I'm wondering if I should ask him to do a biopsy, or find someone else who hasn't already made up their mind that it's not DH. Anyone have a rec for a dermatologist in the Houston area? I'm not positive that it is DH, but I'm not ready to rule it out without a test. I have a hunch that is is autoimmune related. I have Hashimoto's thyroiditis, and I understand that may cause rashes on its own, and that there is also a high rate people with DH who also have Hashi's.
I just read last night that topical steroids can cause a false positive with the punch biopsy, and unfortunately I've already been treating with a fairly potent steroid cream. I suppose the biopsy could be taken from any new areas that crop up if I avoid using the steroid cream there?
Here are some photos from this morning. The inflammation has gone down a bit over the past few days.
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Childhood Dh Remission-Could I Still Have It?
Hi All,
I'm new to the forum, but have a pressing question. When I was 3 years old I was diagnosed with DH (my paternal grandmother and paternal aunt have celiac). From the age of 3-19 I took dapsone orally and topically. I had lesions on my buttox and back mainly-still have the scar on my back where my mom said my first rash happened. When I was 19 the lesions just stopped. I never had a gluten free diet (parents didn't understand what DH was or that my diet needed to change).
I'm now 37 and have a slew of issues that I need to determine if I have celiac or returning DH. First, I'm heavy, let's face it, I'm obese (so is my grandma with celiac and she's been gluten free for 40 years). First, my doctors don't think I have celiac cuz I'm heavy. They claim skinny people have it. However, in doing my own reading I see that obesity and trouble losing weight can be symptoms. Also, I have depression and anxiety (for which I'm medicated and have a doctor). I have tingling in my fingers and muscle weakness in my legs and sometimes my arms. Granted I'm heavy, but I've always been strong, like freakishly strong, but sometimes now I feel like my legs are tired before I even start my day. I crave sugar, all the time. I have unexplained infertility. Even after having my endometriosis removed, we weren't able to conceive. Also, I saw pictures of lesions of DH and the ones I experience now are different than in my youth. They are no longer big patches on my back and butt, but are on my middle finger, small pimply bumps (thought it was psoriasis, but it itches like crazy), and along my hairline and sometimes I get them in my hair. Also I get pimple like spots on my face that I call my stress spots because they aren't pimples, they are oozy crusties that take forever to heal (they don't really itch though).
In addition, I have terrible allergies, and break out in the hives all of the time (especially if I rub on my skin or gently scratch a spot).
So this leads to the question...If I was diagnosed with DH at three but went into remission at 19, do I still have DH/celiac disease???
Please help!!!
Thanks
Dani
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