Pictures: Take A Look

[Guest Maggi315]

Here are some photos of my 8yo's rash. She has had this rash for years. Someone told us it could be milk, but I am wondering if it could be DH? They look like little pimples and the rash is almost constant. thanks

Open Original Shared Link

Thanks! I hope that link works, can someone tell me how to share photos?

Maggi

[Katydid]

Here are some photos of my 8yo's rash. She has had this rash for years. Someone told us it could be milk, but I am wondering if it could be DH? They look like little pimples and the rash is almost constant. thanks

Open Original Shared Link

Thanks! I hope that link works, can someone tell me how to share photos?

Maggi

Hi Maggi-

I was able to access the photos just fine. While the rash does look like DH there could also be a number of other reasons. Where on her body does the rash occur? While my husband's was on his knees, elbows, knuckles and buttocks, I am sure it could probably appear elsewhere. Does she have any other symptoms? Where is she on the growth chart. Many children are discovered because of failure to thrive.

It does bear checking it out though. A friend of ours had this kind of skin condition her entire life while growing up. It was only as an adult when they were doing and endoscopy for another reason that they determined that it was DH. (she didn't get a potent antibiotic completely swallowed and it stuck in her through and burned her esophagus ) Anyway, once on the gluten free diet, the rash totally disappeared.

[Franceen]

Maggi,

Yes it does look a lot like DH. My DH was all over my body, except head/scalp/face/neck and bottom of feet.

DH is know for being "bilateral" - it shows up in the same place on both sides of the body at the same time. It doesn't normally show up on the left forearm and not the right, etc. This was a dead giveaway for my Dr. in diagnosing.

Also the rash is quite "thin-skinned" (close to the surface of the skin) and breaks open very easily with minor scratching. It only has clear liquid/water inside. It also scabs very easily and the scabs continue to itch. It is also normally the itchiest thing ever felt - almost impossible to not scratch.

Iodine (ingested as well as on the skin in products) makes it worse - meaning that I used non-iodized salt until I had it under control (not safe to do this forever, since the human needs iodine in diet). The iodine sensitivity tends to go away after it is under control by a completely gluten free diet.

Above is the "textbook" case of DH (which is what I had). I'm sure there are variations among many people, especially children, that exist.

Trying a gluten-free diet is probably a pretty easy way to tell if it is DH!!

Good luck and hope you find out what it is.

Franceen

[Guest Maggi315]

The rash is only on her buttocks, it is very, very itchy, it affects her sleep. She has had it for as long as I can remember. She is on the antibiotics right now, not seeing a difference yet.

What other conditions do you think it could be? We (7 of us in the family)all have some form of dermatitis or psoriasis and lots of allergies in general.

I will try to take another photo today since it is much worse and post it. I have to alter the photos so it is modest!!!

[barbara123]

Here are some photos of my 8yo's rash. She has had this rash for years. Someone told us it could be milk, but I am wondering if it could be DH? They look like little pimples and the rash is almost constant. thanks

Open Original Shared Link

Thanks! I hope that link works, can someone tell me how to share photos?

Maggi

My gosh,

The rash looks so much like the one I have constantly on my right buttock.. My doctor doesnt think that it is DH because it doesnt itch like they say it should.

Its seems funny that it breaks out when I feel real bad, fever, upset stomach,pain in joints, constipation..... and I could go on and on.

I still think that it is DH but getting the doctors to agree is another thing

[Franceen]

Maggi,

Here are the things that Dermatologists and Allergists thought my rash was before the diagnosis (3 years of incorrect diagnoses):

Atopic Dermatitis or Eczema

Allergies (tested "borderline" for a couple of chemicals and chicken)

Bugs (flea bites from my cats, gnats, bed bugs! dust mites!)

Bugs - misplaced head lice, mites, etc

Scabies (also a bug)

Lupus

Reaction to clothing, soap, detergent, fabric softener, lotions, cats, dogs, dye, ink, dust, contaminated air, plastic dishes, the water.

AND OF COURSE, Psychosomatic illness (neuroses!) - STRESS.

I stopped going when they tried to give me anti-depressants and I was not depressed.

But never psoraisis because that is fairly easy to identify visually and it doesn't look like DH or dermatitis or exzema.

Once I read about DH in medical literature, it was easy to go gluten-free and see if it worked. And it took only 3 weeks to make a difference. Gluten-lite did not work. There is a lot of hidden gluten in foods you would never suspect (like salad dressing and sauces)

Going Gluten Free is really a quite simple way to determine if it's DH!

Eventually a new allergist that I went to was willing to listen to my own diagnosis and confrimed that it is DH. And then the Gastroenterologist and primary care physician were able to listen to her and finally I've been DH free for about a 1.5 years.

REALLY, it is easy to try a Gluten Free diet for a short time. If it starts to clear up (after all those years), you've got your answer. It's ONLY FOOD!! (not a drug, not a needle, not an operation).

I hope you try it- your daughter deserves it! And good luck.

[sickchick]

Oh your heart must be breaking for your little girl...

good luck getting a diagnosis. I have it too but mine is on my chest/ upper stomach and when it's active I get them in my mouth too

bleh

My ND isn't convinced it's DH but I know better. She thinks there are varying Autoimmune issues that can trigger DH and everything I have read online (and believe me, I have been reading so much my head spins) says it is DIRECTLY a result of gluten intolerance.

lovelove

[Franceen]

I know how THAT goes! I was told LUPUS (an autoimmune thing), and many other autoimmune diseases - including Rheumatoid Arthritis and things that just didn't make any sense, except they were autoimmune.

My doctors (plural) all thought the same thing. I think they drew about a gallon of blood over the 3 years hoping to find something OTHER than Celiac.

Hmmmm. We ruled out everything else.

But don't be surprised if bloodwork and biopsies are all negative! You have to be eating quite a bit of gluten for at least 3 weeks to have them come out positive. (Even the stool test needs SOME gluten in your system).

I won't do that! I'm happy just going along my gluten-free way!

[Guest j_mommy]

I get DH on my left buttock only....it's in the same place every time and I have a scar there. I do not get it anywhere else but that one spot.

Mine look pimply like that until they break.

Another option....I had a case where a women was breaking out in pimple like lesions(her's were mostly on her legs) ongoing for months.....no Dr could figure out what was going on. She has no digestive problems and does not have celiac. In the end they swabed the fluid and it was a staf infection. She had no other symptoms but those bumps!

[sickchick]

I have been doing everything short of rolling in gluten for about 5 weeks now Franceen! HAHA In anticipation of the infamous "blood test" that I will get next week

j_mommy when I first broke out I thought they were adult acne! I got the rash on my chest (and the bumps are mirrored in my mouth at the same time) when it's active. Then they get blister and oozy. It reminds me of coldsores (which I also get) they break out (itch and hurt for a few days) then they dry up again until next time. The DH doesn't clear up completely though mine still itches and I still have the little bitty bumps

[sickchick]

Forgive me for being new (as I am scratching my knee) I just noticed myself scratching my right knee and sure enough I have them there too! geez

[Guest Maggi315]

We're going to try to set up an appointment with a dermatologist and get a biopsy. Her antibiotics aren't helping, so I don't think it's staph, although I wouldn't be surprised, my whole family gets staph and strep infections all the time.

Everyone keeps saying how easy it would be to find out if it is DH by going gluten free for 3=4 weeks (not gluten lite, like we have been doing). But it's not easy at all, it's almost impossible. At home, i can manage her food, but at friends, parties, and especially school I cannot. And she has no desire to even try to go gluten free, so she sneaks stuff everywhere. And from what i am understanding, even a tiny bit messes it all up. So I'm at the point of why bother? If I do all the work at home, send in the notes to school, talk to her friends parents, and she still sneaks something in a few times a week, what good is being done? I even went to far as to bribe her with an american girl doll, but still found out she "cheated" at the football game last week and again at church groups (they had snacks sitting out at a party, she went over and had some pretzels).

very frustrating, my whole family really should go gluten free, but i get no backup, support, or desire from anyone but myself. Example: My 12yo offered to bake cookies for me using rice flour yesterday. Great! I tasted the batter, and ate 3 cookies, couldn't believe how good they were! Uh, maybe that's because she didn't use the rice flour after all, she grabbed the wrong kind, oops! So now, I think, great, I'm back to day one! And really thinking what's the use?

sorry, having a pity party I guess! thanks for letting me vent!

[GFhopeful]

i'm just throwing another idea out there but i would think that doctor's would have recognized this - my daughter had a skin rash called mollescum contageum (don't know the spelling anymore) and it looked a bit like that. it was one her butt for almost a year and the doctor said it was just a virus and we couldn't do anything but leave it alone. they would spread and be horrible looking sometimes (like 20-30 of them) and then there would be a couple left and then it would start again with lots of bumps. she would itch at them at times but they weren't incredibly itchy (but she was only 2 years old so who knows what she got used to).

we finally got sick of it and looked up some ideas on the internet. we tried this cream and it kiind of made the bumps break open and then heal up and after starting the cream, it was gone in around 3 weeks. she hasn't had any recurrence in over a year. just letting you know of another possible thing it could be so you could look it up more for yourself. my daughter is perfectly healthy - usually people with surpressed immune systems get this but the doctor said that children can often get them due to their under-developed immune systems.

[Franceen]

I can certainly sympathize with you. I gather your daughter is a teenager!

They can certainly be rebellious.

When I first needed to go gluten-free to determine if it was DH or not, I too, used this very same board to have a pity party! I remember saying in a post that I was still eating Rice Crispies which had "malt flavoring" and also eating some snack bars that had a very minor ingredient called "wheat flakes" and that I thought those would be ok (small amount of gluten). I also whined heavily about my necessary travel for work - and all about how I couldn't eat in restaurants and was being forced to go and eat stuff. And there was a Dr. who was saying that he too was celiac but believed he "had a high tolerance level" and ate cereal in the AM. And there were some VERY nice folks here that told me I really SHOULD go Gluten FREE (not lite) because I was damaging myself permanently......And then I realized i had to do it, come hades or high water!

So I learned and got frustrated and learned some more. And now I even eat out!!!

And I travel. I still have some problems with airplane travel, but I manage somehow.

As far as your daughter goes, maybe telling her about some of the potential physical disabilities that occur, and some of the potential health threats and how "IT IS JUST FOOD", might help her. My daughter needed to be Gluten Free and she absolutely would not do it. She was 23 and got killed in a car accident 7 months ago, so I don't know what I would have done to make her see the light. But I was going to use severe means - send her to Dr. (mine) to get the "medical side of it"......etc.

You really need to keep trying. I know you will eventually get thru to her! But don't give up, it IS serious stuff. And is IS JUST FOOD!! (not chemo therapy, not surgery, not a drug treatment, not amputation - JUST FOOD).

Keep writing on the board. We'll all help you thru it!

Franceen

[kevieb]

maggie, i think the biopsy route is the best way to go---especially if you have a child that is not eager to be compliant without a "real" diagnosis. i was under the impression that true DH can take a while to heal up even after going gluten free----so i don't think a 3 or 4 week trial would give you a clear answer. that being said, i THINK that one of my twins has DH. she had rashes in the classic places---elbows, knees and buttocks. this is what clued us in to test for celiac in the first place. we never did a biopsy on the rashes----her blood work was positive. her rashes cleared up after we got her gluten free and they came back while she was in the hospital and they were not keeping her gluten free. i kind of thought it might not be DH because it cleared up faster than i would have expected-----but she has been left with a lot of scars from it. i have heard that DH can leave scars. i have atopic dermatitis and my skin can get looking awful at times----but it does not leave scars.

[gfgypsyqueen]

My two yr olds allergic reaction is a skin rash that lasts for days if not a week. The itchies are so intense she wakes up all night long crying about the itchies. The only place she got the rash is her feet/ankles & diaper rash area. No medication ever helped and we tried a lot! Her rash is tiny pin head like red spots that are insanely itchy. Her scratching actually wakes me up when I sleep in her room! Someone else on this site mentioned being diagnosed only by the same type of rash on her feet. So, after trying Dairy free the child is now gluten-free/CF. The only time that rash and itchies come back is when she gets into something with gluten or dairy. She is a silly in my eyes, the Drs still don't agree. We have to wait for the documented growth spurt!

As for your child, how old is she? Buy CherryBrook kitchen Chocolate cake mix. My super picky non-celiac loves these cupcakes! Buy her some of the unbelieveably good gluten-free foods. Maybe ask the teens on this site for suggestions. Make the to die for cakes and foods. This diet sucks when the food tastes like cardboard! Parties are hard, but maybe the other parent would let you make the cake? Or bring another cake to share? (Flourless chocolate cake is my favorite!)

Try to find out if your daughter would prefer to keep this challenge a secret from her friends to see how she feels before you have to decide if she really has Celiacs. Make a start and end date and track the rash-like a science project. Maybe extra credit from her teacher for a science project? Once she is healing and the rash goes away, if she has Celiacs, she will feel better, but after that when she makes one mistake she will never have the urge to cheat again. Sad but true. I would LOVE for a real NY pizza, but I know I would be hospitalized from a few bites

Best of luck

[Franceen]

Yes, DH leaves chicken pox-like scars. Red, turning to white circles, raised or depressed. I have them all over my body and many people ask if I had a bad case of chicken pox. The difference, however, is that DH usually does not apear on the face like chicken pox. I had the most dense DH's on my arms and legs (shins). But also many other places, but not the buttocks! However, it IS ALWAYS bilateral (at least for me and in the textbook).

My dermatologist said once they turn white that is the most that they will do - they will never go away completely - just like pox, surgery, burns, bad cuts.

He also said that the fade creams will do nothing (and he proved correct).

Hopefully people will catch DH before they get that bad. They took months to go away when I first went Gluten Free, but I saw big improvement (no new ones) after just a week or so. After that, they still take about a month or more to completely disappear when I've been accidentally glutened - depending on how bad the glutening was.

I've never had a "true" diagnosis via bloodwork or biopsy. Although the Dr. was willing to make the "official" diagnosis when I remained DH-free and gluten-free for about a year. She said I would have to be eating a major amount of Gluten for a major amount of time to get bloodwork or skin biopsy to become positive- and the bloodwork tests are still realtively unreliable with a high false-negative rate. The biopsy is only as good as the Dr. doing it. - since it has to be NEAR skin with a VERY RECENT DH blister that has not been scratched or broken open (and NOT the blister itself). (Hard to get one of those exactly on the day you have appt). So, beware of the false negatives!

And admittedly a rigorous gluten-free period of some length (longer the better) is a much better diagnostic.

[NoGluGirl]

Dear sickchick,

I am beginning to think that I do not have adult acne, but DH. I have pimple-like things all over my back, neck, sometimes my shoulders, and my face. They are symmetrical, too. Both cheeks, my chin, and forehead have them. That would explain why the zit cream is not helping much.

I actually scratch until they bleed sometimes, because they bother me so much, particularly the ones on the side of my face. It also burns. I also have really small blister-like ones between my top lip and nose. They really hurt! I have been gluten-free for over a year, but due to sharing a kitchen with careless people, I do occasionally get glutened no matter how careful I am.

Sincerely,

NoGluGirl

[lovegrov]

Doesn't look anything like the DH I had. And mine was without question DH.

richard

[silly celiac]

I do not have confirmed DH, although my skin is what led me to wonder if I had celiac. For years, I have had what I referred to as blister-zits on my hands and elbows, and sometimes spanning the forearms between. Occasionally I get small outbreaks on my toes and knees, and I now wonder if the back acne I couldn't get rid of might have been DH. I noticed a significant improvement after going gluten-free, and a HUGE improvement after switching shampoos. For me, though undiagnosed as I am, I can really tell the difference between these and like a regular zit or rash by how the skin breaks open. Usually they're close to the surface and though they look like a zit, they pop like a blister and itch like mad. Sometimes the ones on my palms or fingertips will be deep. I can't wait to get some sort of confirmation on this, and I hope you do, too, although I don't need a test to tell me to stay off the gluten!

[NoGluGirl]

Dear silly celiac,

I have those on my face, scalp, back, and neck, and some on my chest! I began thinking recently that maybe it is not acne. They itch and burn. Even after they have scabbed over, the itch and burn and make me break them open again. I cannot afford a biopsy to confirm DH, though. I have been gluten-free for over a year, but due to having to share a kitchen, occasionally still get glutened. My parents are quite careless at times, so no matter how careful I try to be, no matter how paranoid I get, I still have gotten ill from time to time. If I were well, I could get a job and move out.

Sincerely,

NoGluGirl

[Queener]

Giving up pasta and beer were extremely difficult for me, but after reading about all incredibly increased risk of many types of CANCER, I gave it up without a thought. Do some research - print it out and let your daughter and family read it -- what's worse - giving up pizza or having cancer???

[missy'smom]

If I remember correctly the CSA (Celiac Sprue Association) website has photos of DH.

[NoGluGirl]

Dear missy'smom,

I think I looked at the photos on that Web site. My blemishes sure look an awful lot like some of their pictures. Maybe I can ask my doctor for some Dapazone at my next appointment. It is so uncomfortable! Washing my face and using pimple cream seems to make it worse.

Sincerely,

NoGluGirl

[missy'smom]

Glad it was helpful. Their website was helpful to me when I first started checking into celiac disease.