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Another Does This Look Like Dh Post

JaneWhoLovesRain

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JaneWhoLovesRain Enthusiast
JaneWhoLovesRain
Posted

I hope I'm posting this in the right way so that the links will work. I've had a heck of a time trying to figure out how to do this! If you can, please take a look at the links and let me what you think - do they look like dh?

http://i1172.photobucket.com/albums/r571/janerane/IMG_2435.webp

http://i1172.photobucket.com/albums/r571/janerane/IMG_2344.webp

http://i1172.photobucket.com/albums/r571/janerane/IMG_2444.webp

http://i1172.photobucket.com/albums/r571/janerane/IMG_2449.webp

http://i1172.photobucket.com/albums/r571/janerane/IMG_2601.webp

Jane

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rosetapper23 Explorer
rosetapper23
Posted

Personally, I think it looks like DH. Does it itch like crazy? Does it leave thickened reddish-purple scars? From what I've read, DH can look several different ways, so, hopefully, others will pop in here with their opinions. How long have you had these particular rashes?

squirmingitch Veteran
squirmingitch
Posted

Ohhhhhhhhhhhhh Jane! Great big ((((HUGS))))!!!!!! Been there, done that.

We told you before that you have dh & therefore celiac. Yes, it does look like dh Jane.

JaneWhoLovesRain Enthusiast
JaneWhoLovesRain
Posted
  • Author

Yes, it did "itch like crazy." The pics are a couple months old, I finally figured out how to post them last night. The rash is now 95% gone, I have a lingering area on each hip, it's not very itchy anymore. It's been 6 months now since I first started itching.

Today I saw the dermotologist. I didn't see him before, just his nurse practitioner who is the one who did the biopsy. The visit started out nice but ended up horrible. He confirmed I don't have DH, probably not scabies either, most likely an allergy. All follow up blood work for an auto-immune skin disease was negative.

I asked if it is possible I could have DH even though the biopsy was negative and he said definitely not. He said she took it from lesional skin just as she should have and the staining showed nothing. Lesional skin???? I questioned. Yes, he said, she took it directly from the lesion. But isn't it supposed to be from next to the lesion I asked. Then he go angry at me, told me I am not listening, he is the doctor, he has been doing this for 30 years, the NP knows what she is doing, she did it right, don't get your info from books or the web, even if she was a milimeter or centimeter off it still would have shown on the biopsy had I DH. I felt like crying, he was not nice. Forty five minutes in the waiting room for a lousy five minute/ $50.00 visit.

He told me there is nothing he can do for me except give me a stronger steroid. I'm not interested in a stronger steroid, the rash is almost gone and barely itches, I am interested in knowing what the rash was/is. He said he can't do that and I will probably never know.

With biopsies, doctor visits, prescriptions, time off from work, I've spent close to $1,000 and still don't know what is wrong with me.

I am not convinced that it isn't DH, it acts so much like it. I just wonder if it is possible to eat enough gluten to cause the rash but not enough to have the kind of antibodies that would make the test positive. I guess my next step is to get tested for the celiac gene. If that proves to be negative, then I can at least stop questioning if I have DH or not.

razzle51 Apprentice
razzle51
Posted

yes that be it , I went to the skin dr yesterday and he said its mainly on your knees and elbows but can be different places . since I just started on the diet , he said to let it run its course and just gave me a cream to put on.....

squirmingitch Veteran
squirmingitch
Posted

Jane, besides the NP doing the biopsy wrong, according to earlier posts you had been gluten-free for what? 1 or 2 years? Even if they did the biopsy correctly then there was a snowballs chance in hell that it would turn up positive; add to that a 37% false negative & you were sunk before you even began. Unless you are willing to eat the equivalent of 4 slices of bread for 3 months & find a derm who really knows what they are doing (& remember the 37% false negative rate) then you are never going to get a positive biopsy.

Get the genetic testing. Maybe then you will feel comfortable in something.

And there is plenty of medical documentation that dh can present anywhere on the body. It is not confined to elbows, knees, buttocks, lower back & scalp. Just FYI Razzle.

Raven815 Rookie
Raven815
Posted

Poor Jane. I know how you felt and I DID cry. I think that if you went off gluten and the rash subsided, isn't that proof positive? Or, eat some gluten and see what happens (I would not do that myself). I have always said that doctors don't know everything and now I'm really seeing that.

Laura <3

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JaneWhoLovesRain Enthusiast
JaneWhoLovesRain
Posted
  • Author

Squirming - 37% false negative, wow! not very good odds. I couldn't believe it when he told me she biopsied the lesion. I even had to remind her beforehand she had to take a special biopsy for dh. She was just going to do a routine punch one and told me that dh would show on that if I had it. She even said she was going to biopsy next to the lesion. She drew 3 little circles for the 3 little biopsies but before actually doing them she changed her mind and said she would be doing the DH one from circle A, not B. So maybe she really did do it on the actual lesion instead of what she initially told me.

Raven, going off gluten 100% seemed to make the rash go away 98%. Then I started eating an oreo a week, just to see what would happen and to try to keep it from going away 100% because I wanted to have something for the doctor to see at my visit today. Now that he has seen it I will be going 100% gluten free. In a couple of months I'll have another oreo (yummy, can't wait for that) and I'll see what happens.

If it wasn't for my vertigo issues I would be more than willing to gluten up myself with pb&J, lasagna, apple pie, brownies, fresh baked bread etc. I can handle the stomach problems and skin issues but not hours long vertigo attacks. No way! One oreo is the most I am willing to gamble.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

Your rash looks just like what I had. Mine came after the severe digestive symptoms. I didn't have it biopsied.

Right after getting some blood work done post endoscope, I removed the tape they had put on my inner elbow. My dog licked it. He had just eaten a dog biscuit. It made the skin in that area, the exact shape of the tape raise up with a blistered itchy rash. It was severe. It took ages for that and the areas on my back, and knees which loked like your photos to heal.

Skip forward to 11 months gluten-free. We were traveling and stayed at a Motel with free complimentary breakfast a week ago. I didn't bother going. I had my gluten-free cereal in the room. My hubby brought back a bowl of cut up fresh fruit. Without thinking anything of it I ate it. That night I broke out in sweats, got a migraine, insomnia, and the balance issues came back full force, and an area the same shape, size, and location of the blisted rash came back on my inner elbow. A new accidental gluten symptom for me! I'm still suffering the effects. I have no idea why, but the itching seems to be the worst at night/evening.

My blood tests negative, my biopsy showed severe damage, which gave me the DX. I later got the gene test and I'm a DQ2.2. I'm told it's rare to have Celiac with that blood type, but I've read that those of us with it seem to get more severe symptoms. I can attest to that. I've gotten digestive, neurological, and skin symptoms.

I keep reading that having genes other than DQ2 and DQ8 in Celiac is rare, but in my experience it isn't as rare as they think? They dismiss the people without those exact genes as not Celiac. It skews the evidence.

squirmingitch Veteran
squirmingitch
Posted

Your rash looks just like what I had. Mine came after the severe digestive symptoms. I didn't have it biopsied.

Right after getting some blood work done post endoscope, I removed the tape they had put on my inner elbow. My dog licked it. He had just eaten a dog biscuit. It made the skin in that area, the exact shape of the tape raise up with a blistered itchy rash. It was severe. It took ages for that and the areas on my back, and knees which loked like your photos to heal.

Skip forward to 11 months gluten-free. We were traveling and stayed at a Motel with free complimentary breakfast a week ago. I didn't bother going. I had my gluten-free cereal in the room. My hubby brought back a bowl of cut up fresh fruit. Without thinking anything of it I ate it. That night I broke out in sweats, got a migraine, insomnia, and the balance issues came back full force, and an area the same shape, size, and location of the blisted rash came back on my inner elbow. A new accidental gluten symptom for me! I'm still suffering the effects. I have no idea why, but the itching seems to be the worst at night/evening.

My blood tests negative, my biopsy showed severe damage, which gave me the DX. I later got the gene test and I'm a DQ2.2. I'm told it's rare to have Celiac with that blood type, but I've read that those of us with it seem to get more severe symptoms. I can attest to that. I've gotten digestive, neurological, and skin symptoms.

I keep reading that having genes other than DQ2 and DQ8 in Celiac is rare, but in my experience it isn't as rare as they think? They dismiss the people without those exact genes as not Celiac. It skews the evidence.

You are exactly right about those gene comments. I was reading medical reports just yesterday which stated some DQ4's & 5's & I don't remember what all. I will post it later if I get the chance.

Oh! And here's something I thought about the other day ---- we've read gluten in glue such as for envelopes etc..... My hubs got bad places sometimes from Band Aids --- not necessarily Band Aid brand --- we thought he needed latex free --- still got it ---- Band Aid brand did not do it to him. I Googled Band Aid brand & they are gluten free. Never thought about gluten being in the glue for Band Aids. ????????

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I think the reaction I got from removing the paper tape came from the top layer of skin being removed along with it? Then the dog with fresh gluten in his mouth licked it and it went right into my system? Very curious!

The gene stuff is so odd to me. I don't understand why they keep discounting the reports of people with gluten reactions just because they don't fit into the DQ2 or DQ8 list?

They're doing a study of more of the genes at Mayo Clinic. I agreed to participate in the study and had to give a couple of extra vials of blood for their tests. These studies take a lot of time to do, and even more time to catalog and interpret the results. I'm glad they're looking into it more though.

squirmingitch Veteran
squirmingitch
Posted

Oh, I didn't mean to imply your reaction was from the glue on the tape. I understood the gluten dog mouth perfectly. Sorry --- my bad --- I was just adding the curiosity of the possible glue aspect that we happened to wonder about.

And then the other day Prickly was helping an Asian gal --- seems there's something about them having different tests???? To do with their heritage????? Gets deep.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

When I got my gene test results the Dr. questioned my heritage. Doesn't seem like it should matter where my ancestors were from..if they insist Celiac is DQ2 and/or DQ8? :blink:

They need to make up their minds. Either it's straight up DQ2 DQ8 or "other" genes are Celiac too? I don't understand why they keep trying tp put us in "boxes"? Are they trying to skew the results so they can claim their tests work? If the tests don't really give a true answer will insurance companies stop covering the gene tests..and that's why they insist on the "correct" genes? It's baffling!

Di2011 Enthusiast
Di2011
Posted

My DH does/has looked just like these pictures. I am self-diagnosed and recovering gluten free. STRICTLY gluten free and with a constant watch out for salicylate overload. One crumb ("super sensitive" - lots of "natural" gluten free and many production lines are off my eating list) and my DH tells me I've had gluten. The brainfog hits me next and lasts for days. Everyone thinks I'm "sad" or "depressed" so I make a strong point of explaining the brainfog ("zoning out") episodes and how they differ from depression etc.

My DH flares all over with a glutening and only careful diet (low iodine and very low sals) gets it under control in the short/medium term.

If no gluten but too much sals I get something I'd describe as a half-glutening episode with the DH. All over starts to tingle, break out in areas that have been healing etc. But, once I get the sals intake minimised, the healing itself is much much quicker than when I've been glutened.

Gluten plus too much sals is something I hope to avoid for life - so can't describe that one - fortunately.

Ice packs, avoid as much processed food as you possibly can (it has worked a treat for me).

The benzocaine products worked to sooth the worst of my DH when I finally had to go public and back to work. ((mine was head to toe bad)). Read the "warnings/side effects".

cougie23 Explorer
cougie23
Posted
:( Ok...So I'm looking at your pictures...thinking...hmmm...that looks familar! where have I seen that? maybe Hubby? He has mysterious rash problems...no...not hubby.THen I look over at my itchy arm...at the old scars and where I've been scratching again...and Damn!looks just like yours! !! So what you guys are saying is that THIS is what DH looks like!? I GUESS I HAVE IT TOO!!Great...I thought I was just itchy...from gluten...yeah...but not DH!wow...mark down yet Another symptom of celiac!
squirmingitch Veteran
squirmingitch
Posted

Well cougie, dh presents in many ways, many manifestations during different stages. Just read the "sticky" or "pinned" at the top of the dh forum. I think you will be amazed.

Mom23boys Contributor
Mom23boys
Posted

If I had any doubt in my mind, I sure don't now. That looks exactly like what hubby and youngest kid has. In fact, the kid asked why I put a pic of him online and when did I take it. :(

JaneWhoLovesRain Enthusiast
JaneWhoLovesRain
Posted
  • Author

If I had any doubt in my mind, I sure don't now. That looks exactly like what hubby and youngest kid has. In fact, the kid asked why I put a pic of him online and when did I take it. :(

mom23boys - that makes me laugh. I don't know why all the doctors I see won't even consider me as having dh. Maybe I really don't have it or maybe they are just closed minded. One said it's definitley not dh because dh doesn't itch. (or maybe they are just stupid.)

JaneWhoLovesRain Enthusiast
JaneWhoLovesRain
Posted
  • Author

:( Ok...So I'm looking at your pictures...thinking...hmmm...that looks familar! where have I seen that? maybe Hubby? He has mysterious rash problems...no...not hubby.THen I look over at my itchy arm...at the old scars and where I've been scratching again...and Damn!looks just like yours! !! So what you guys are saying is that THIS is what DH looks like!? I GUESS I HAVE IT TOO!!Great...I thought I was just itchy...from gluten...yeah...but not DH!wow...mark down yet Another symptom of celiac!

Oh Cougie, I'm not sure if that would call for a congratulations or not :huh: but it definitely calls for a "you poor girl."

JNBunnie1 Community Regular
JNBunnie1
Posted

mom23boys - that makes me laugh. I don't know why all the doctors I see won't even consider me as having dh. Maybe I really don't have it or maybe they are just closed minded. One said it's definitley not dh because dh doesn't itch. (or maybe they are just stupid.)

Really? My understanding was that the most significant factor in the description of dh was the unrelenting, untouchable itch. That's why so many people wind up with scars and scabs, not from the rash itself, from the scratching! I had to wear head to toe spandex under my clothes to keep myself from scratching my skin off.

JaneWhoLovesRain Enthusiast
JaneWhoLovesRain
Posted
  • Author

Really? My understanding was that the most significant factor in the description of dh was the unrelenting, untouchable itch. That's why so many people wind up with scars and scabs, not from the rash itself, from the scratching! I had to wear head to toe spandex under my clothes to keep myself from scratching my skin off.

JNB - that's why I added the "or maybe they are stupid" at the end of my post. I was referring to the doctor who told me that who obviously doesn't know a thing about dh. Yes, it is a horrible unrelenting itching rash. The worst I have ever had. He told me I had scabies, because that itchs something awful, also. But I have nothing in the normal scabies spots and have had NO contact in any way that would give me scabies. To that he replied that I have an atypical case and one can get it shaking hands. :angry:

It itches, never heard of it not itching except from this one doctor.

squirmingitch Veteran
squirmingitch
Posted

Dr. Jackanapes.

cougie23 Explorer
cougie23
Posted

Oh Cougie, I'm not sure if that would call for a congratulations or not :huh: but it definitely calls for a "you poor girl."

Thankyou...you too!

Note pics 1/4/5...that looks like what I have...especially after I've been scratching! Note the FRECKLES as well...and the small almost blood blister red cirles...I've been describing this for awhile! I get random little red pin pricks( like the red dots , only smaller. then they fade into freckles! usreally I have barely noticable little clear(skin colored) bumps...almost like acne only never any "head/pus" or nothing at all ...just insane itching...then I scratch myself to death...and my arms/shoulders/ back... look like the pictures! :unsure::rolleyes: ...espeacialy if I eat gluten or soy....then my entire body itches insanely...eyeballs...ears...fingertips...all the way to my toes...its nuts! I even get hives inside my stomache and intestinal track...feels like bee stingers!Doc says its Hives! :blink:<_<:huh: ...ouch! :P

Lots of scars...freckles...and semi healed round sores like acne thats been picked at to much!LOL...or like the pics! :D

It never "looked" like a rash....so I never "THOUGHT" of it as one....just REALLY itchy skin! :blink::lol:

Costantly cutting myself open and bleeding everywhere!Skin moltled looking...between freckle and old purplish scars!EEEEWWWWW! :rolleyes::blink::lol: Is this what you guys are going through?I never really thought of it as a rash...at least not what I have....and it doesn't look like the pics I've seen under DH.But then...one thing I've learned about CELIACS is everyone is different! They should call it the rainbow deisese...because we seem to get every symptom under the rainbow!!! LOL! :rolleyes::lol::P

cougie23 Explorer
cougie23
Posted

Dr. Jackanapes.

LOL! :lol::lol: :lol:

theresa56 Newbie
theresa56
Posted

I hope I'm posting this in the right way so that the links will work. I've had a heck of a time trying to figure out how to do this! If you can, please take a look at the links and let me what you think - do they look like dh?

http://i1172.photobucket.com/albums/r571/janerane/IMG_2435.webp

http://i1172.photobucket.com/albums/r571/janerane/IMG_2344.webp

http://i1172.photobucket.com/albums/r571/janerane/IMG_2444.webp

http://i1172.photobucket.com/albums/r571/janerane/IMG_2449.webp

http://i1172.photobucket.com/albums/r571/janerane/IMG_2601.webp

Jane

Hi Jane,

This looks like what I had. I had it biopsied and it came back as contact dermatitis; but they took the biopsy in the wrong place.

A few weeks later, I went to my gastroenterologist; I have crohn's disease too. I was having a problem with feeling like food was getting stuck.

So they did an endoscopy and took a biopsy...came back as celiac disease, so that answered the question of the rash that I had for 5

months. There is a medication that will clear the dh; I was so desperate, I just wanted to be able to sleep at night without itching to death!

I take Dapsone for flares. Initially, I was put on a 10 day regiment of prednisone to clear the rash. I also read that iodine affects it, but I can't be without synthroid. I've talked with a few people with celiac and found that another common thing is hyatial hernia; which I also have. I didn't have any symptoms except the rash; but I take meds for crohn's; maybe this helped with the intestinal problems.

Hope this helps.

dx 2009 crohn's, dx 2011 celiac.

helped with that.

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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
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