Is This Dh? My 4 Year Old Has Had This Rash For 3 Years!

[norahsmommy]

My 4 year old has had this spotty and itchy rash most Of her life. It is never completely gone but ranges from barely there to horrible. It's always in the same place too. I'm finally getting a dermatologist to look at it. Her docs kept saying it's a yeast rash or exema but none of the creams help. Hydracortisone cream makes it a little tiny bit better but only for a day or so and then it's back to looking horrible. Help? What kind of skin tests should they do?

Can someone explain how to post a picture? I'm not seeing how.

[norahsmommy]

<iframe width="480" height="360" src="Open Original Shared Link

I think I figured this out. These are pics of my daughters rash.

If you click the link nothing seems to come up but if you click the view albums button in the upper right corner you can see the pics.

[glutenfreegrump]

We went thru the exact same thing with my boyfriend. 4 years of rashes off & on & NUMEROUS Dr's & no one knew what it was!!! Finally, after a years waiting list to get into a dermatologist, they did a biopsy of the rash & more blood work & came to find out he was celiac & it was Dh. His rash was mainly of his arms (around the elbows), his knees & all over his bum! It was so frustrating not knowing what it was but since he's been diagnosed & we've been following a strict gluten free diet, it has cleared up considerably. good luck at the dermatologist. Make sure you get them to do a biopsy!!

[bartfull]

Make sure they do the biopsy on CLEAR skin right next to an ACTIVE lesion. If they biopsy the lesion itself it will turn out false negative. And if the lesion is not active it won't do any good either. Read as much as you can on the DH section for more info.

[norahsmommy]

We went thru the exact same thing with my boyfriend. 4 years of rashes off & on & NUMEROUS Dr's & no one knew what it was!!! Finally, after a years waiting list to get into a dermatologist, they did a biopsy of the rash & more blood work & came to find out he was celiac & it was Dh. His rash was mainly of his arms (around the elbows), his knees & all over his bum! It was so frustrating not knowing what it was but since he's been diagnosed & we've been following a strict gluten free diet, it has cleared up considerably. good luck at the dermatologist. Make sure you get them to do a biopsy!!

Thanks for the Reply. Does it look like dh? I think this is what it is and the nurse practitioner we saw today that gave us the referral to the derm thought that's wha it looks like too. I felt practically giddy that someone listened.

The np said the dermatologist would do a skin scraping, is that the same as a biopsy? I always thought a biopsy was a small section of several layers of skin.

I want this all done right so we know exactly what this rash is. I feel I may not get another doc to listen to me for a long time if we mess this chance up.

It would make so much sense if it was dh. When we first introduced gluten foods ( biter biscuits, cereal, baby food with barley flakes). She got so constipated she'd scream in agony. Her belly got huge and puffy and 2 cap fulls of mirilax plus 2 daily doses of prescription laxative wouldn't make her go ( at 8 months old). When she finally would go, it was so big part of her colon would come out. It was horrific.

I did elimination diets to figure it out and it came down to wheat and barley. We took her off any gluten and after a while she got better. She would be in pain with a distended belly and painful poop if we messed up.

We kept her gluten free until age 2 when her doc convinced us to get her tested for celiac. We started feeding it to her again but she didn't seem to have an issue with it. That doc left the practice and the new doc saw no reason to test her. About that time the rash appeared and we've been dealing with it ever since.

[norahsmommy]

Make sure they do the biopsy on CLEAR skin right next to an ACTIVE lesion. If they biopsy the lesion itself it will turn out false negative. And if the lesion is not active it won't do any good either. Read as much as you can on the DH section for more info.

Does it have to be a biopsy or can it be a skin scraping? How do I convince the derm to do a biopsy? I'm sure they will just want to do a scraping.

[squirmingitch]

It has to be a biopsy. Google for how it is correctly done & print it out & take it with you.

Open Original Shared Link

 

Diagrams & everything:

Open Original Shared Link

 

And here's another reference:

Open Original Shared Link

 

Lots of reading involved but it's all relevant:

https://www.celiac.com/forums/topic/95643-interesting-reading-on-dh/

[norahsmommy]

It has to be a biopsy. Google for how it is correctly done & print it out & take it with you.

Open Original Shared Link

Diagrams & everything:

Open Original Shared Link

And here's another reference:

Open Original Shared Link

Lots of reading involved but it's all relevant:

https://www.celiac.com/forums/topic/95643-interesting-reading-on-dh/

Thank you! I think I already read most of this stuff. I want to be well versed in this skin issue. I just can imagine what else it could be. It has been there under her arm and down her side for years!

It's not just her I'm worried about. We have 5 kids and my oldest fell off her weight and height curve completely. She went from the 25th percentile in weight to the 4th in 2 years. She went from the 18th percentile in height to the 8th. That's not normal.

My 2 year old constantly says his tummy hurts and he has a pot belly but you can see his ribs. He's tiny for his age too.

So I'm kind of thinking we have a problem. I really think we just have a family full of celiacs.

[squirmingitch]

Well, it is genetic sooooo......

 

It's really too bad this daughter didn't get the celiac blood panel & the endoscopy before she developed the rash. It would have been so much easier to get a dx then. I understand what happened with the doc leaving etc....  The thing is, she has now (I call it this) "crossed over" from the gut issue presentation to the skin presentation & that's why she doesn't have the GI issues anymore. 

 

If you can get one child dx'd then it will pave the way for the others at least getting tested without having to bang your head against a doctors brick wall ----- hopefully.

 

You have to be strong when you go in there & make sure they do things right & don't let them brush you off with platitudes. SHOW them the print outs of how to correctly do a dh biopsy. If they start doing it wrong, call them on the carpet for it. Go to another derm if you have to. You have to be your own advocate. I know it's hard but if you want results you have to take a hard line.

 

I wish you the very best & please let us know what happens.

[greenbeanie]

My daughter had a rash like that on her bottom for pretty much her whole life, and was diagnosed with celiac (via blood tests and endoscopy) at age 4. Doctors also kept telling us it was nothing, or just extreme irritation from diapers, etc. We must've tried every brand of diapers and wipes there is - and then the rash remained after she was potty trained! She had GI and neurological symptoms since very early infancy too. I know how frustrating it can be trying to get someone to take it seriously...but it will be worth it if you end up with a clear diagnosis. My daughter's rashes pretty much went away within two months of going gluten free.

Hang in there, and do make a big fuss if the doctor won't listen, or if they're not doing the biopsy right. As embarrassing and awkward as it is, sometimes that's the only way to get results. I also read a great suggestion somewhere else on this forum (I forget where): if they won't run the tests you think are needed, ask the doctor to put it in writing why they think the test is unnecessary. That's essentially asking them to go on record as refusing to investigate what could be a significant medical problem, which they certainly won't want to do. If nothing else, fears of malpractice accusations may make them run the tests after all, just to cover their bases in case they turn out to be wrong.

On a separate note, I also had the same kind of incredibly itchy, blistering rash since I was 5 years old. I have a scar from scratching my elbow when I was a kid, and my parents had to wrap bandages around it to keep me from scratching the oozing mess more. By the time I was a teenager, the rash covered most of my legs, arms, and around my waist. I never saw a dermatologist, and allergists kept telling me it was a contact allergy to an unknown irritant. The rash got much, much better when I starting living on my own for the first time in my early 20s. I'd always felt sick from bread and pasta, so once I was cooking for myself I started using rice as my staple grain instead. I knew nothing about celiac and did not connect the rash to food at the time, but it retrospect it's crystal clear. My own celiac tests were negative, after 15 years of a gluten-light diet. I suspect that the tests were false negatives - but maybe they were true negatives and I have NCGS rather than celiac. Anyhow, my own rash is almost totally gone (except for a small patch on my scalp) after 13 months strictly gluten free. So even if your daughter's DH biopsy comes back negative, that isn't necessarily conclusive proof that gluten isn't causing the rash.

Good luck, and I hope you get answers soon!

[glutenfreegrump]

Make sure they do the biopsy on CLEAR skin right next to an ACTIVE lesion. If they biopsy the lesion itself it will turn out false negative. And if the lesion is not active it won't do any good either. Read as much as you can on the DH section for more info.

When we went & saw the dermatologist I was sure that they did a biopsy of the lesion? I could be wrong but he had so many water blister like 'bubbles' on his arm & I am sure that's what she cut out.

[glutenfreegrump]

Does it have to be a biopsy or can it be a skin scraping? How do I convince the derm to do a biopsy? I'm sure they will just want to do a scraping

It's your daughter & I would not take no for an answer when requesting a biopsy. I know when we were going thru dr after dr we started thinking that it was best to start cutting out gluten free foods but didn't even think that that would affect the test results! lol It was such a new world to us. The tests they did were very quick but it took almost a month to get the results back. Good luck with finding out what this is. I know it can be frustrating and I can't even imagine what it's like for a child! All the best

[norahsmommy]

I was looking at pics online and the red Shiny crease under her arm could be inverse psoriasis. But all the red dots that are raised don't look right for that skin condition. Maybe it's 2 different things going on?

It's not under her other arm either and dh is supposed to affect both sides usually? Psoriasis needs a biopsy to diagnose too doesn't it? So she should get one if it could be either of those things.

[norahsmommy]

I found some up close pics of when the rash was starting to go from barely there to worse.

It's the only time I've gotten pics of fluid in the bumps.

http://i1283.photobucket.com/albums/a554/brightersideoflife1/Mobile%20Uploads/image_zps77e5a16e.webp

[norahsmommy]

So our dermatologist appointment isn't until December . Her rash is in full swing again. It was looking pretty tame for a couple of weeks. The have been eating my moms cooking a lot and she uses gluten everything. She even throws it in where it isn't necessary at all.

She's been under a lot of stress lately and has been complaining of a rash that just won't go away. She said ' it itches like mad all the time'

She has fluid filled blistery bumps that then pop and leave this slightly pitted red sores that are very very itchy. It's all around her ankles and she has it on both forearms. Id bet my last dollar that she has dh. So now we know my dd's rash is likely that as well and I guess at least she and my mom have celiacs.

[squirmingitch]

Can you get the derm appt. moved up to be Oct. or Nov.? Anytime that's 2 months from the last steroid.  What does your mom say bout her rash. Does she eschew celiac disease or do you think you can get her to get a biopsy?

[norahsmommy]

She first thought they were mosquito bites, then hives from stress due to caring for her mom after she had a stroke. She's been slathering her rash with hydracortisone cream 3 times a day and refuses to talk to her doc about it. I brought up dh and celiacs and at first she was in utter denial but then told me she wen gluten free and the rash didn't itch quite so much after a few days. However she went to mcdonalds and got a birder and fries and took the bread off the burger so it was 'safe'. She's itching like mad again.

[squirmingitch]

You can only tell them. The rash itself will do the rest. The sad thing is, by the time they have to admit it, the rash is so ensconced they have a long fight ahead of them to wait out the antibodies which makes them sooner or later doubt it's dh b/c "they are eating gluten-free so why is this rash still hitting me?" It's like beating your head against a brick wall.