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#1 drgoogle

 
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Posted 17 December 2010 - 09:53 PM

Hi everyone. I'm new here, thought I'd share my story.

I finally got a biopsy today (from my family doc) after seeing many docs, including an allergist and dermatologist.
So, hoping I'll have an answer soon, although I'm pretty sure my doc biopsied a lesion, instead of beside a lesion.

Long story short:
- had 2 mosquito bites one on each leg that wouldn't heal in the summer
- after stressful incident in SEPT., got some reddish spots on my legs, which I logically related to the mosquito bites
- spots were burny and itchy
- docs thought it was infection, perhaps staph, fuciden cream, didn't work
- cephalexin, didn't work
- now docs thought it was poison ivy, topical steroid and prednisone, antihistamines
- prednisone helped but then I went off it and BAM things continued to worsen - spreading now, onto arms and back
- lesions on legs had turned from reddish spots (like pimples or folliculitis) into drier clusters - looking like nummular dermatitis, or ringworm
- lesions on arms were smaller - just little tiny dots that came of little tiny bubbles, though some would spread/cluster into almost herpes-looking lesions too
- lesions on back just little pink dots (but very itchy like the rest of them)
- finally got in to see a dermatologist in OCT., who took one look and said it was eczema, prescribed cephalexin again to clear up any potential infection, more potent steroid creams, skincare regimen and UVB light therapy 3x/week
- got some tiny bubbly blisters on my hands and larger ones on my feet, thought it was latex allergy? Also irriated ears
- after a couple weeks the dermatologist's approach was helping heal existing lesions but not prevent new ones
- healed lesions leave nasty scars, and can become inflamed again
- my own research began to make me think about avoiding gluten and dairy, so I did
- noticeable improvement within a few days - finally able to sleep! This improvement has been the most noticeable and long-lasting of anything tried to date.
- saw an allergist, who said it's not food, nothing to do with food, just a placebo effect
- skin prick testing showed allergies to dog dander and dust (I have 2 dogs), but he said my skin problems were just an acute dermatitis, didn't do patch testing because so hypersensitive right now
- went on a little binge of dairy and gluten due to allergist's confidence, regretfully (seemed to make me worse again)
- developed a new theory that perhaps I was allergic to a glue (cyanoacrylate) in an eyelash extention procedure I'd had done in Sept., so went off the gluten theory for a while but quickly back to the DH theory because:
- seem to also be aggravated by salty foods (potato chips, corn chips) which I'd been allowing because I figured hey, they're not gluten, and hadn't made the iodine link yet
- might also be aggravated by shellfish, possibly wine, possibly stress
- likely not completely gluten-free because while I haven't knowingly eaten any, haven't been super strict at restaurants or with "may contain wheat" products
- after major healing (basically only legs remaining a problem) a few weeks ago, everything started to pop back up in the last week - started to think about my birth control pill, which I've also read can exacerbate DH if progesterone based which mine was. Family doc switched me but still on it for about 10 days before I switch.
- also note that I have had sushi this week thinking non-shellfish and non-gluten sushi was okay, not realizing the iodine content of seaweed
- also a particularly stressful week, so if it's eczema and not DH that could contribute...
- got my biopsy today from my family doc, anxiously awaiting results but as I said, wondering if she got anything other than a lesion

Any feedback would be so appreciated. I feel disgusting (having gone from normal skin to widespread nasty lesions),frustrated, discouraged...
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#2 ravenwoodglass

 
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Posted 18 December 2010 - 05:32 AM

I hope you derm did the biopsy correctly but even if he didn't you have seen a strong corelation between eating gluten and the rash. I would go to strictly gluten free no matter what the test results.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 CrazyforCandles

 
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Posted 19 December 2010 - 08:02 AM

My HD started 4 months ago and my GP treated it as an allergy to hairdye, then soap, then cleaning chemicals, etc. Treated with Antihistimines, Antihistimine creams, and Prednizone 6x- one week at a time then 2 week break in between due to the effects steroids can have on immune system. In the beginning it was only on my arms and with each breakout it spread to new area and existing areas got worse. Between the itch, anxiety from the frustration, lack of sleep- I had HAD IT. I did my own research online looking at rashes that resembled mine and came across Celiac/ HD. I demanded the next day for my GP to do a blood panel and hook me up with a Dermatologist. He took one look at me and did 2 biopsy's, gave me Topicort for the rash and told me to start the Gluten Free Diet immediatly. He said just from look of my rash and the 4 months of 'eruptions' he is 95% sure I am a Celiac.

*I was Lactose Intolerant as a child, had problems with going to the bathroom my entire adult life, been anemic for 2 decades, took 8 years to conceive, bouts of depression, etc. Now reading and learning for the last 3 days about Celiac and HD I have so many of the warning signs and am relieved to know there is an answer to solve ALL the medical problems I've suffered for years from just by adjusting my diet....but it is quite an adjustment, and an expensive one.

Still waiting for my biopsy results, but hoping that by sticking to this diet this disgusting rash will disappear quickly. I too am covered in scars and lesions that are at best 'unsightly'. :( You are not alone as I found out from the lovely ppl on this forum and will check in with you to see if you are healing as well.

Good Luck from one Rashy to another :D
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#4 Hopeful1950

 
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Posted 20 December 2010 - 12:14 PM

Wow!!!

You could be telling the story of the last 7 years of my life. I wanted to respond when I read your post yesterday, but had to calm down first. Why do docs play the "psychosomatic card" or tell you that it is "all in your head", just stop scratching. I have been patted on the head, told to "just stop scratching" and sent home with one cream or another so many times. I've got news for them: THERE IS NO "PLACEBO EFFECT" THAT WOULD MAKE THIS ITCHING STOP!!! I also ended up at an allergist who helped me figure out this rash. Don't let the docs get away with being lazy about it. FYI...all blood work for me came back negative, skin biopsy negative (done wrong). I finally got so frustrated that I initiated testing from a lab that I heard about on this forum. I had to self pay, but it was worth it. Here is the link in case you would like to pursue a different kind of testing.http://www.enterolab.com

Definitely sounds like DH from what you have described. It will take awhile for it to clear up because the cells that cause the blistering can remain in your skin for 24 months. Being diligent about the gluten free diet is imperative along with avoiding iodine in your diet. Be careful with medications. They can be a problem both for gluten and iodine. My DH got kicked up into high gear when I took Actonel (for osteoporosis) several years ago. It was loaded with iodine and I went from having itchy spots on my ankles and elbows to having them all over my arms, legs, neck, upper back and behind.

Best of luck to you. I'm glad you found the forum, the people here could give workshops to the doctors!
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#5 drgoogle

 
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Posted 20 December 2010 - 07:52 PM

Thanks everyone! I so appreciate your comments and feeling like you "get it." I know my close friends and family are sick of hearing me talk about it, so it's nice to have a place here where people understand and also have stories to share. There were days when my itch and pain were so bad, the appearance of my body was so unsettling, the feeling of a complete lack of control and lack of knowledge around the situation, would have me just break down and cry, while trying to search for answers.

My boyfriend's mother works in pathology and thinks that if my family doc did biopsy the lesion only instead of "normal" skin, the pathologists will know that this is inadequate and will say so, so hopefully it won't just result in a false negative or misdiagnosis.

I spoke with my dermatologist tonight because I am still going for light therapy and see him regularly, and finally mustered up the courage to ask him if it could be DH (he's been so confident in his diagnosis of eczema that I had been afraid to bring up my own theories and ask for a biopsy). He said that he doesn't think it's ONLY DH, but he thinks it could possibly be eczema + DH, or eczema with a gluten sensitivity as a trigger, and that "at some point" we could do a biopsy for my peace of mind.

Since becoming more strict with my gluten (and casein and non-sea salt) avoidance, and at this point in my birth control pill cycle which was the same point when things started to clear last month, I am feeling like I'm on the mend again (I've been on the mend many times before though) so I'll see if being off that b.c.pill after this pack (switching to a non-oral contraceptive to avoid systemic effects) and continuing strict adherence to my diet can fend off a resurgence this time around.

I once competed in a physique competition and was obviously then eating very minimal gluten and dairy for different reasons, and I remember feeling like my skin and stomach in general felt so much better (clear skin on face which is sometimes a problem, usually struggling with little tiny skin-coloured bumps on my forehead - acne?) during that time. I haven't really had any GI symptoms lately. Of course, I've always found that the less healthy I eat, the worse my stomach and body feel in general and certainly I'd label me as someone who has always had a "sensitive stomach," even since childhood. I have had some problems with dairy in the recent past, thinking I was lactose intolerant for a couple years, but was able to reintroduce it. In the past few years I've felt like my brain and memory have been on a decline, and I'm only 29, but I just attributed it to being uber-busy with a lot of cognitive overload going on. I've also had some neurologic symptoms that I also attributed to stress - eye, thumb and toe fasciculations. These haven't been plaguing me lately. Looking back, I have had inconsistent GI problems when eating what I labeled "greasy food" like pizza or fast food (I say inconsistent because I didn't have a problem EVERY time I ate such a food). When eating poorly, I definitely craved a good cheesey carby combo. Although I'm a competitive athlete, full time student, and a practicing clinician, and have always strived (though not always succeeded) to maintain a healthy lifestyle including diet (I only say all that because you'd think that would all describe an energetic person), I would say that I have so often felt/wondered over the past few years why I feel like I seriously lack energy - I was questioning a lot in the past year why I'm so exhausted all the time, but again attributed it to occasional sleep deprivation and an overly busy and stressful life (which I'm sure contribute). Also, the way my lesions start out, they look perfectly harmless - just a tiny little skin coloured bump (before they go crazy and become nasty). Looking back over the past few years, I've had a fair number of such very harmless little bumps appear on my body, they'd stick around and go away and I would wonder what they were, but they never festered into the nastiness that I'm now dealing with...perhaps they were an early sign though.

After doing some reading on this forum and other places online, I wonder if all of the above have been signs of gluten sensitivity or intolerance. I really hope that the biopsy was done properly! After four months trying in vain to solve my rashy problem, I'll admit that there's probably a part of me actually hoping it shows I have DH, because it's something I can explain and control as opposed to continue on this guessing game. It also would allow me to feel comfortable requiring accommodations when eating with others, as opposed to now when I feel like I'm being "difficult" if I have to avoid certain foods when socializing. That said, I also realize DH isn't something anyone should WANT to have, and certainly I wouldn't try reintroducing gluten unless I completely clear, and even then I'd only do it very carefully and slowly if at all...it's not like it's necessary or good for you anyway!

Thanks again for all your feedback and stories shared.

Also thought this was neat: http://www.glutenfreejan.com/
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#6 MacieMay

 
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Posted 22 December 2010 - 07:13 PM

Oh Man!! Will you please share the results of your skin biopsy. I would ask for a copy of it.

I've been trying to figure out this rash my 21 month old had that I SWEAR was a systemic reaction to gluten. She had it biopsied and it came back something different then DH and they ruled it out. But the thing is we went gluten-free the day she had the biopsy and I never saw another rash like it. I really want to prove that gluten was causing this reaction in her. ALL her tests were negative (allergy, endoscopy, Celiac panel and gene) but this little girls body rejects gluten. I don't know why?? She had ALL the GI symptoms, including the lactose intolerance. It was so hard to get Dr's to take notice that something was wrong because of the negative results. More research needs to be done to improve the testing for this.
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#7 drgoogle

 
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Posted 25 January 2011 - 11:23 AM

Thought I should post because I've received results of both biopsies.
Neither suggested DH.

Although both docs biopsied lesions instead of skin adjacent to lesions, the derm did biopsy a fairly large area so I know he did get some adjacent skin at least. Also, my mother in law personally knows (she works in pathology) the dermatopathologist who looked at my second biopsy and she chatted with him, and overall, everyone is quite confident that there are certain things you'd see that would at least suggest DH, even if I'm gluten free and even if it's a lesion as opposed to normal skin.

I know I've read, and many here have said that it must be normal skin, not a lesion, and that being gluten free can lead to false negative, but if I was still getting lesions at the time then clearly whatever the cause was was still around, and if there was some surrounding skin in the biopsy, and the dermatopathologist specifically is looking for anything indicative of DH - I have to be able to be somewhat confident in the results? Right?

About 2 weeks ago, I finally turned a corner and started to heal and stopped getting new lesions. Persistent lesions continue to flare but in a very minor way, relative to what it's been like. The scars are all over my legs still, so still not a pretty sight, but the itch is almost completely gone. I don't know what did it - I visited a doc of traditional chinese med who was confident he could help, and I have been taking the stuff he gave me and it was literally 2 days after I saw him that everything un-inflamed and flattened out, but it's also my first month on a non-oral contraceptive, and it's also my third full month gluten free. So who knows!

I'm still gluten and dairy and shellfish and salt free, but am feeling like I might test soon.
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#8 ravenwoodglass

 
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Posted 25 January 2011 - 03:20 PM

Your doctors didn't know what they were doing. Here is what the NIH has to say about how to biopsy properly. Not only do they need to biopsy the skin next to the lesion they have to use a special procedure to find what they need to find.

http://www.celiac.ni...Dermatitis.aspx

"A skin biopsy is the key tool in confirming a diagnosis of DH. Doctors take a skin sample from the area next to a lesion and, using a fluorescent dye that highlights antibodies, look for the presence of IgA deposits. Skin biopsies of people with DH are almost always positive for IgA"

If you plan on getting tested for celiac make sure you get back on gluten for 2 to 3 months first. Even then you could have a false negative.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#9 drgoogle

 
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Posted 26 January 2011 - 07:51 PM

Your doctors didn't know what they were doing. Here is what the NIH has to say about how to biopsy properly. Not only do they need to biopsy the skin next to the lesion they have to use a special procedure to find what they need to find.

http://www.celiac.ni...Dermatitis.aspx

"A skin biopsy is the key tool in confirming a diagnosis of DH. Doctors take a skin sample from the area next to a lesion and, using a fluorescent dye that highlights antibodies, look for the presence of IgA deposits. Skin biopsies of people with DH are almost always positive for IgA"

If you plan on getting tested for celiac make sure you get back on gluten for 2 to 3 months first. Even then you could have a false negative.


Thanks for your reply. I should get a copy of the results. I would hope that the dermatopathologist would have done the immunoflourescence to look for IgA. My mother-in-law used to manage pathology in town and was aware that that was necessary. She specifically spoke with the pathologist about it, and my dermatologist specifically indicated on the pathology request that the purpose of the biopsy was to rule out DH. So, the dermatopathologist at least should know what he's looking for, and if he didn't have an appropriate sample should have said so.

But, I know that's a lot of "shoulds" - I will check.

How far next to the lesion does the biopsy need to be? The punch biopsy taken was so much bigger than the lesion, that normal adjacent skin was taken with it, but nothing I've read indicates how normal, or how far away from the lesion. What does "next to" really mean? 1mm? 1cm?

My mother-in-law also spoke with another dermatopathologist she works with who was confident that this particular dermatologist I am seeing would know DH well, and that DH, even the lesions, will have unique characteristics, and even if not definitive when taken of just a lesion, should be distinct from other things - but I know from reading some articles that the location of biopsy is very important and that biopsying just a lesion can be misinformative. My derm told me he had a couple of people recently test positive for DH with biopsies...which gave me hope that he knows how to do a proper biopsy for it.

Sigh...

I know that I could go back on gluten and get tested for celiac, but the risk of making my skin worse as it just begins to improve is just not worth it right now. Also, I know I could have tried to get on dapsone, but the gluten avoidance and TCM is working now, so I don't want to mess with it right now. For the first time in 5 months I can say I am improving.

I think I might wait until I am completely better, which is still looking like at least another couple months, and then maybe try some gluten. If that does it perhaps I'll either ask for an endoscopy or a normal skin biopsy. Or perhaps I could go to the immunologist again and ask him to do the biopsy. Perhaps he'd have a better idea.

The other thing I'm unsure of is - as long as I am getting lesions, you'd think it means I have IgA deposits in my skin (if it is DH), so even if I'm a few months gluten free, the biopsy shouldn't be a false negative if there are still active lesions, one would think?

I just wish there was an absolute expert on all this stuff, in the city!
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#10 drgoogle

 
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Posted 26 January 2011 - 08:18 PM

Here are a couple of the abstracts of the articles I can find, and none specify the distance from a lesion that's necessary.
http://onlinelibrary...3052.x/abstract
http://archderm.ama-...tract/132/8/912

I think mine was perilesional and wasn't very inflamed. The blister was actually intact. The second article says "Noninflamed perilesional skin showed more intense IgA deposition in 18 of 19 specimens compared with that in never-involved skin "

Also, I remember both docs put the biopsy in formalin and I was told by people who work in pathology that for immunoflourescence, you don't put the sample in formalin. But I also read an abstract of a new way to test for IgA deposits without immunoflourescence. I mean, the above articles aren't new, so presumably it's not new information to physicians. So maybe they're all just using the new procedure that doesn't require immunoflorescence and thus can get away with the formalin.

I guess I have trouble trusting my docs, but also have trouble doubting them! Oh the dilemma.
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