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Look At My Pics Please
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20 posts in this topic

So let me start by tellig my story. About a year Ago I started getting very itchy skin. It began to flare up worse and worse.I went to the dermatologist who said I had eczema. I have gone back again during a flareup and they still say the same thing. It's not eczema I actually have hives. I have done my own research and I am convinced I have DH and will be asking for a biopsy. I am 29 year old female. What do you think of these pics? I live off of Benadryl or atarx and have been on steroid creams and protopic that just hurt my skin. Also all my rashes are bilateral . Lately it's my back an ld buttocks

E8E177CF-F58B-4B67-8B07-0698231876AB-5004-0000032A2C13A844.jpg

B4149B5F-777B-4FC4-B1C1-35F10AF54722-5004-0000032A28700018.jpg

6A82C7D8-205C-4B7C-9EFE-E8186E9EA5F3-5004-0000032A2448E2F6.jpg

99DE7239-EEDD-420A-B773-CC0FC6E0FB8E-5004-0000032A2560C763.jpg

5310D3F0-ED17-4215-8FEE-5F1C7386A57C-5004-0000032A23AFCD7E.jpg

I believe this is a true dh lesion

C9669C2E-25D5-43ED-B2D7-58A38C76D797-5004-0000032A228A1988.jpg

95118876-0F97-4A35-AEFB-FA75A90DC7B7-5004-0000032A234C75E1.jpg

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Yep, sure looks like DH to me. You said you have been on steroid creams, hopefully not recently if you want to see a derm for a biopsy? Apparently recent steroid use will reduce the likelihood of it being diagnosed. In the meantime, have you found the thread about itch relief on here? As well as info. on the right way for a dermatologist to biopsy? (Next to the lesion, not on it...). You don't want to start eating a gluten-free diet until after any tests, unfortunately.

Hopefully others will agree, but I figured I'd throw in my comments.

And, welcome to the forums, keep us posted on a possible visit to a derm or going gluten-free!

Edited by ciamarie
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Thank you. I have an apt for the 16th and I am going to request the biopsy next to a lesion. Might have to. Be on my butt.... Ouch!

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It may be a combination of DH and hives. I had both. I know you are in agony right now so I would suggest in addition to seeing the derm that you ask either him or your GP for a celiac panel. After all testing for celiac is done then do give the diet a good strict try. Also check your topicals, shampoos, lotions etc for gluten ingredients. I hope you get some relief soon.

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Yours looks a lot like mine. The arm pits and waist and tail bone are the worst, aren't they?

I use Vanicream and ice packs on mine. Vanicream doesn't irritate and ice packs stop the itching.

Good luck with your biopsy. Stay off the steroids of you can til after biopsy. Be prepared, if you're on them and go off it will flare.

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I'm off everything but Benadryl since I am 12 weeks pregnant. I will make and apt for my GP or ask the derm for a celiac panel

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I was just diagnosed with DH and mine looked almost identical to yours. I had what looked like hives all over the place. I didn't have any blisters whatsoever. I went to 2 dermatologists and my GP several times before I finally got the diagnosis, but I started on dapsone two weeks ago and my rash is almost completely gone. The dapsone has given me relief where nothing else did and now I am almost completely gluten free for a week. Hope you have better luck getting diagnosed than I did :(! Good luck! Hope you feel better soon!

Jenn

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Jenn did they do a biopsy??? I har read it has to be done a certain way...

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I had four biopsies done by a doctor that didn't really know where to do the biopsies. I ended up being diagnosed with scabies, atopic dermatitis, and medication allergies. I finally started researching myself and figured out it was DH. I went to a new dermatologist and told him that I thought it was DH, so he started me on a trial of dapsone. In the two weeks I have been on the dapsone the itch and rash are almost completely gone......the itch was almost non-existent in two days or so. I actually went back today and he told me he isn't even going to do a biopsy. He said he feels like the dramatic response to dapsone was diagnostic itself and I had DH. You might look at the thread I started called "Does this look like DH to you?" Squirmingitch posted some links to websites that I printed and took with me to the doctor's office. The links tell exactly where the biopsy should be done as well as gives other information about DH which I found very interesting and informative.

Hope that helps!

Jenn

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This looks exactly like something I had two years ago. I felt it was just a really bad case of hives and it lasted about 10 days. It wasn't until this year that I figured out it was DH in one of its more recognizable, meaning classic, presentations! For the past 5 months I 've been on the low iodine and low salicylate diet and for the past two weeks the rash is calmer than it's been in years.

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Yuppers, looks like you have dh. sad.gif I'm sorry.

Welcome to the board. I hope you don't have as big a problem getting dx'd as most of us but be prepared. You have it bad & IMHO blisters & lots of lesions are just around the corner for you. I hope not but I'm afraid that is likely to happen. You've been given good advice by the others.

You might want to check & see if there is a celiac support group anywhere near you. If there is, you can check with them to possibly find a derm in your area who has experience with recognizing & taking a biopsy of dh.

Don't stop eating gluten until testing is finished. And try your best not to scratch. Scratching easily destroys the markers they will be looking for.

Keep us posted.

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Thank you all. This has been such a battle. I never thought I would wake up one day with allr these skin issues and not have a reason. After my testing I will be going gluten free regardless of the results. I tried going dairy free already and it didn't help. I've had some food allergy testing all that came out neg. I may make an apt at another derm just to have it lined up for a second opinion. The itch consumes my day. I don't go outside because of how my skin looks. My last hive outbreak 2 days ago I soaked in a bath with a cup of apple cider vinegar and it was very soothing but the damage was done from all the itching. I wake up with blood from itching in my sleep. Honestly this has gotten me quite depressed. I really hope by result of the biopsy comes back pos. I just want answers.

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That looks like what I had before I gave up gluten. I never had it as wide spread as you and honestly, I'd forgotten how red it was. Like many people here, I've never had a positive result for gluten testing, but it absolutely is DH. Be prepared that you may never get an absolute answer.

It wasn't until I went gluten-free that I ever got actual blisters. I still get tons of hives. It's like they live just under the surface of my skin and wait for the slightest scratch to come blaring alive.

It's pretty normal to go through some depression about this. Seriously, it's completely crazy-making stuff! I've cried about it many times. It's taken 1.5 years of gluten-free living (strict, too), to get to a point where I see a wee bit of light at the end of the tunnel. Compared to what it was, my skin looks good, though it still itches like a mother.

I feel for you, I really do. Unless you can get into see a derm quickly, I wouldn't wait to go gluten-free.

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kmag's last line is another reason so many with dh don't have official dx's. The moment I figured out what it was --- that was it! --- I went gluten-free with the next thing I put in my mouth. No way I was waiting around for an appt. When you realize it can take up to 2 years & sometimes even longer for the antibodies to get out of your skin; you don't want to waste one single day of getting started.

Cmigi, since you're pregnant I know you're going to be on pregnancy vitamins. You need to talk to your doc about this. You may need to find a suitable vitamin that DOES NOT contain iodine. Iodine is medically known to an effect on dh. It can really make it flare! That is what most of us have experienced also. A few have not had iodine make any difference but that seems to be the minority.

I have a vitamin which is gluten-free as well as iodine free. it is Solgar brand "Vitamins Only" but I don't think they qualify as a pregnancy vitamin. Pricklypear has a iodine free vitamin also. You could ask your doc to prescribe (even if they have to compound it) some LIQUID pregnancy vitamins which are gluten-free & iodine free.

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Well since my derm apt is in 2 weeks I'm gonna keep on going. I can handle 2 more weeks, I've done a year worth of this!

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Well since my derm apt is in 2 weeks I'm gonna keep on going. I can handle 2 more weeks, I've done a year worth of this!

This is good. Since your child can end up with celiac it would best if you can get a dx.

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Really it's hereditary?? My 7 year old has a lot of stomach pain, we took her to a pediatric gi and since she has no diareah it anything they said its in her head. I wonder if it could be the start of something for her down the road? Just pain to begin and in 10 years things will be worse

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There is a genetic factor, but only a minority of those with the genes actually develop celiac disease. It is recommended that all first degree relatives of someone diagnosed with celiac disease be tested.

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I'm a little late to reply, so I don't know if this is useful information or not..........

My son used to get this rash, head to toe, and start bleeding.

We were given a prescription for a very expensive cortisone cream, but what

we found effective (before going gluten-free and df) was a homeopathic ointment called

Arnica ointment. As a baby, he would literally sigh when it was applied, and it

would take the itch/pain away, and take away the inflammation.

Very difficult days and sleepless nights for the whole family,until we got it all

sorted out. I feel for you, and hope your discomfort gets under control.

When he has a flare up, I pull up his pant leg for the tell-tale sign that he has

been glutened. There is one spot on his leg (he was born with it) that welts

and discolours first - our secondary indicator.

Good luck

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Aw your rash looks super uncomfortable :( I hope it heals soon

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    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
    • Thanks cyclinglady & manasota! I appreciate it. I came to give an update...... I'm still 99% itch free. I get a "place" like a bug bite once in a while that itches and I just use the prescription steroid cream on it & that takes care of the itch. My rash is healing up rapidly everywhere. Almost clear skin now! Yaaaaayyyyyyyyyy! Now for a rundown of the "treatment". For 20 days I took a 100mg doxycycline twice a day. Then we upped it to two 100mg doxy twice per day. I took those for 5 days & made rapid progress and the itching stopped. The doxy was getting my tummy though. It was getting really rough despite my eating yogurt. So on day 6 and day 7, I took two 100mg doxy in the am but in the pm I just took 1 of them. On day 7, I was nauseous for hours on end. So since I was still doing well without itching and the rash was healing everywhere, I decided to cut back some more. On days 8, 9, & 10 I have only taken two 100mg doxy in the am and none at night. I'm doing good and my tummy is much, much happier! No more nausea!  I'll update as things go along.
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