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dani nero

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Oh my goodness! I had the 'flesh eating' lesions on my lower belly. I really think it was several lesions side by side that just grew into each other. They have healed and now are the dark purple color.

I know you have been so strict on being gluten-free, I want to cry for you! Do you think your doctor will order light therapy for you?

Wish you could take Dapsone or maybe the topical? I think I'll have my niece take photos of my healed skin after being on Dapsone since 10/20/12. So sorry for you. . . . :(

Thanks dear. I doubt a GI has any clue about light therapy. And yes, sometimes you get the flesh eaters where you get 2 or 3 next to each other & then they all grow together to make one huge lesion.

Maybe the topical Dapsone..... I don't know. Just have to talk to him & see.

My other worry is that if I go the Tetracycline route that I am deathly allergic to Penicillin & what if I develop an intolerance to tetracycline? If I get really sick & need it then I won't have any options left to me.

There are time that .38 is looking better & better.

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There are time that .38 is looking better & better.

Hope we're talking about a bigger bra here :D

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There are time that .38 is looking better & better.

Oh Squirmingitch ... put those thoughts way out of your mind! The topical Dapsone is ACZONE® and you may want to research to see if your doctor will prescribe it for you.

When I asked for Dapsone, I mentioned the topical to my PCP and she didn't seem to recognize the name. Since she agreed to order Dapsone, I didn't press her further about the topical med.

Your GI may not be familiar with light therapy but I know the Derms do. Hang in there! Prayers and ((hugs)) to you.

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Continuing the progression of the lesions. These photos were taken today. They were much angrier looking a few days ago --- lobster red, but I could not bear to take photos of them at that point. They have been terribly painful & remain so. I have found the best thing at this point is Vaseline. And ice packs. But one can not spend all day laying on ones back with ice packs on. Life goes on & food needs to be prepared, groceries need to be gotten etc.....

I would add that these photos disprove those texts which say the lesions last a couple/few days. WRONG. Sometimes they do --- maybe in the beginning or very mild flares but an individual lesion can last for a full month or more. Also those texts that state that dh has to be blisters. WRONG. Some of what you see began as blisters, some did not --- those were the "bite" kind --- but undoubtedly ALL dh.

This first one is what the flesh eater has turned into.

8434301996_77bc217692.jpg

This is what my front looks like now.

8433219679_38c3911b4f.jpg

This is the underside of my breast.

8434308572_53555972e5.jpg

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Oh man!! I look at these pictures and can't begin to imagine what that feels like :unsure: I will never complain about my psoriasis again, I promise.

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Squirmy . . . I can tell they are healing. Pray it continues to heal and quickly! I understand about the allergy to penicillin and needing a fall back drug, for an emergency. My Gpa, Dad, siblings and now my nephew is allergic to penicillin. My Gpa was given it, in error while admitted to hospital for pneumonia and died in 1963. :(

Hang in there!

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Wow, finally I find someone who has it as bad as I do/did. I am/was covered from head to toe. So bad I kept myself covered unless I was at home and even then my daughter couldn't stand to see it and avoided me a lot of the time. It is now going away. I had a dermatologist who was very helpful with the itching part by putting me on Gabbapentin which lowered the nerves reaction to wanting to itch. It worked for me at least.

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I have a patch of my finger that looks pretty much exactly like yours dani, except even smaller. It came acouple weeks ago, got super itchy, then went away and is coming back again. I am not diagnosed with dh, but I haven't had it checked out either. It's not bothering me much.

My sister, whose bloodwork is negative for celiac disease, has had eczema as long as I can remember, and I think my finger looks very much like her rashes. Of course this isn't definitive, I still think my sister's a celiac.

I also get noticeable blisters (hardly noticeable on my fingers but they're definitely there) on my forearms. That's been around for a couple of years, and they itch pretty bad, but I've never had them clump.

Now I do have dandruff that itches pretty badly and it has gotten worse after getting a bit better. I've had that for decades though, never really went to someone to talk about it or look into it. And I did get a rash on the back of my neck after eating nuts that I'm guessing had cc. (I also had an immediate burning reaction in my mouth and then nerve pain in my teeth/gums for prolly a week after.) But the rash on my neck honestly wasn't that itchy even though it was by far the largest patch of affected skin I've had. It did make its way to the back of my ears and they itched, and moved up a bit into my scalp which also itched for a couple weeks, but when that happened the skin just looked dry, no blisters anymore.

"Skin was very prickly and burned, did not like having anything touch it"

This is familiar to me. I randomly get patches of skin that will get very sensitive when anything touches it, and the skin's response to being touched just didn't feel normal aside from the burny, uncomfortableness. Of course I've never had my entire body feel like that, and no rash has ever happened afterwards. But since my finger has decided to break out again, when I touch the skin it feels like there's a coating on it, something that makes the sensation of touch on it muffled. But I never had the sensitivity that I've gotten before. I figured since I have peripheral neuropathy that my patches of skin were a nerve issue of celiac disease or just something else entirely, not a skin issue. Perhaps there is some overlap here that doctors are missing, skin has neuronal receptors.

I would not be very happy with a diagnosis of the eczema of unknown cause. Like getting diagnosed with IBS. It's only useful if they figure out what causes it or gets rid of it.

I feel so bad for all of you who have such bad rashes!

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I thought that a thread containing a collection of the different shapes and forms of DH could be helpful to people looking for something to compare their own rashes with. So go ahead and post your rashes here to help others find a point of reference. Please add associated symptoms and a short history.

I am however doubtful of this idea being a good one because some people might add photos that are not related and confuse people who are new to all this. I hope it will be ok and if it's not then it's ok to delete this thread and I apologize in advance ;-)

Since I haven't seen a rash that is milder than mine I think that it's actually a proper coincidence that mine is the first one :-)

These images were taken when the rash was in it's mildest form. It has sadly developed since these photos were taking, and gets pink swollen bumpy areas under the blisters. It is also starting to spread to the next finger and on the webbing between my fingers.

The rash used wake me up at night with a blistery, throbbing, itching, and burning finger when I used to consume gluten. Now it mostly burns whenever it shows up with very mild itching. The water in the blisters is clear.

http://rainytown.se/images/external/20120524_065253.jpg

http://rainytown.se/images/external/20120524_065311.jpg

http://rainytown.se/images/external/20120524_065505.jpg

Important: Please note that I'm self-diagnosed, meaning this rash is based on my own speculations based on my symptoms all put together.

That is NOT DH.

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That is NOT DH.

And that is NOT HELPFUL. Would you be so kind as to explain your reasoning.

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That is NOT DH.

 

It looks quite mild, but it certainly could be DH.  I get blisters and red spots on my fingers all the time.  The blisters are sometimes very small, just pore sized.  Stingy, burny, itchy and blisters sounds a whole lot like DH to me.

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My finger looks almost identical to the OP Carybear. The rash on my finger has since improved and gotten worse a few times, and the blisters have gotten bigger, and the blisters look like this when a tad larger.

http://dermatlas.med.jhmi.edu/image/Dermatitis_Herpetiformis_4_030330

 

The dry, peeling skin is what comes afterwards, and yes, that's what's most prominent in the photos daninero posted, and I agree, that doesn't look like DH to me either.

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Hi

I have what I call 'classic DH' with lesions like Sqitch (sorry about that abbreviation :D) on scalp and just occasional on shoulder blades and buttocks. (Used to have it very badly on all three of those places) and have scarring to this day on back and buttocks. Astonishingly symmetrical! Lesions on scalp vary in severity but never gone and worse for iodine and thyroid meds. 

Anyway - dani nero's finger pics got me wondering because I get that and have had it on underside of forearms. Extremely itchy and I have always assumed it was Contact Eczema that arrived out of the blue at intervals. Now I'm wondering if it's a variation of DH!!

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I'm a newbie, I love this site! I can relate to everyone, most post are from last year. Are y'all still post here?

I use Clobetasol Propionate cream it really helps.

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That is NOT DH.

 

Oh my . . . Carybear, you do not have DH?  I would like to know how you diagnosed by the picture too.  Just curious.   :rolleyes:

 

I have been diagnosed with DH with 2 doctors in agreement and the rash on my hands looked exactly like 'Dani' presentation.  The blisters on my hands were extremely small, fluid came out after scratching and they eventually had the peeling dry skin.  The sting, itch and burning was intense!  I don't have a photo of my hands but wish I did so I could post.  BTW, I don't think any of us can diagnose anyone. . . just able to offer ideas and such.

 

To anyone interested. . . my skin was almost healed after being on Dapsone and I was so happy.  I decided to try to stop the Dapsone to see if I could just depend on the gluten-free diet.  After 2 weeks . . . I found out just how much the medication helps.  I am now  back on it but suffering with a renewed breakout on my stomach, lower back and buttocks.  Actually the breakout is in the same places that had been healing.   :(

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Hi

The only time mine vanished (to my surprise) was when I had a course of strong antibiotics and steroids to treat a bad chest infection. It came straight back afterwards (this was over 20 years ago). 

It was somewhat helped by a long course of oxytetracycline antibiotics (sp?) prescribed for it by doc who said it was infected skin (?????????). Came straight back after and a second course had negligible effect. (Again, this is years ago)!

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that's what mine looks like. I had one on my bottom and that's what was biopsied last week. results aren't back yet but I've been gluten free since July so it could be negative. My derm said visually it does look like DH. I also had a cluster on my thigh and now I'm left with the marks, taking forever to heal.

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Ok, I'll add mine:

This first one is February 2013, right after my first biopsy:

P1130004_zpsc2d1f767.jpg

This is late March 2013:

Photoon3-28-13at1102AM_zpsa1ba4d32.jpg

And this is what it turned into by Summer 2013:

Photoon8-20-13at122PM_zps88304470.jpg

It's alarmingly symmetrical, with the right side being somewhat more impacted:

Photoon8-20-13at121PM_zps7511c9f2.jpg

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oh gosh abby that looks painful. mine is only a few spots here and there.

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oh gosh abby that looks painful. mine is only a few spots here and there.

It's pure misery. :(

For three years, my rash was just a few spots (like in the first picture). Then it just exploded this year and is taking it's sweet time calming down.

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It's pure misery. :(

For three years, my rash was just a few spots (like in the first picture). Then it just exploded this year and is taking it's sweet time calming down.

Oooo ItchyAbby it really does look very red and angry, no wonder you say its pure misery it must drive you absolutely nuts,

at the moment mine are on the back of my legs and over my derrière too so I can't really photo those, but they are at that sore stage now,

The Gastro Doctor wanted to have a look at my rash,

but when I told him It was covering the back of my legs by my buttocks he chuckled and swiftly changed his mind

I guess some Doctors are still embarrassed about stuff like that , I would have shown it to a medical audience if they would have done the biopsy for me :P

but It just seems so difficult to get biopsied in the UK

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that's what mine looks like. I had one on my bottom and that's what was biopsied last week. results aren't back yet but I've been gluten free since July so it could be negative. My derm said visually it does look like DH. I also had a cluster on my thigh and now I'm left with the marks, taking forever to heal.

What a great dermatologist you have, no one has even suggested a biopsy for me at all ,

I think I may have to pay a private dermatologist to get a biopsy, but I wouldn't know where to start ,

Good luck with your biopsy, hope you get some answers,

Please let us know how you get on

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Abbster,

 

Just know that we are all here to help you get thru this !!!  I hope you are able to see some improvement as quickly as possible.  I see more baths and foot rubs in your future :D

 

All my best,

 

Colleen

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Hey Abbs,

 

I was researching DH this morning and I came across a guy named Jean-Paul Marat.  He lived in the late 1790's.  Anyway, It was the opinion, after his death, that he was suffering with a horrid case of DH.  He was a Doctor himself. Of course little was known about Celiac/DH so diet change was never a concern.  I was reading that he spent most of his life in bathtub with soothing herbs and a wrap around his head.  I tried for the life of me to find the herb mixture he used but no luck there but he used a cloth soaked in vinegar around his head to control itching there.  So I was thinking that maybe you might want to trial using a cloth and laying it on one of your areas of DH for itch control.  I don't know how practical that would be for you but I wanted to mention it anyway.

 

Colleen

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    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
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    Dr. Ron Hoggan, Ed.D.
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    Whatever the reason that stuttering has not been reported in the medical literature in association with gluten ingestion, a number of personal disclosures and comments suggesting a connection between gluten and stuttering can be found on the Internet. Abid Hussain, in an article about food allergy and stuttering said: “The most common food allergy prevalent in stutterers is that of gluten which has been found to aggravate the stutter” (10). Similarly, Craig Forsythe posted an article that includes five cases of self-reporting individuals who believe that their stuttering is or was connected to gluten, one of whom also experiences stuttering from foods containing yeast (11). The same site contains one report of a stutterer who has had no relief despite following a gluten free diet for 20 years (11). Another stutterer, Jay88, reports the complete disappearance of her/his stammer on a gluten free diet (12). Doubtless there are many more such anecdotes to be found on the Internet* but we have to question them, exercising more skepticism than we might when reading similar claims in a peer reviewed scientific or medical journal.
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    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023