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I Have Celiac.. Does He?


KB.tpw

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KB.tpw Rookie

I really could use some info. I live in the middle of "what's a gluten" land where it takes an eternity to get in to a pediatric dermatologist. I am diagnosed celiac, not DH. My son has had skin issues for a couple of years now. He was initially diagnosed with MCV (contagious water wart type things) but I noticed that they cleared up when he was gluten-free with me. He just spent 5 days at his dad's (eating gluten daily) and he's got a completely different looking rash on his elbows, knees, and ankles.

If anyone is willing to help, lmk. I have pic links I can post.

I just don't know what else it could be.

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squirmingitch Veteran

It's entirely possible he is celiac! You don't have to have dh for him to have dh. DH IS celiac - it just presents on the skin more than the GI stuff. Also if he has dh --- 60% of the time those of us with dh test false negative on the celiac blood panel and the endoscopy comes back negative much more often that normal celiacs. If you want an official dx for him then you should go for a dh biopsy -- the biopsy is taken from CLEAR skin ADJACENT to an ACTIVE lesion. Few derms get that right. AND he has to be eating gluten just as if he were doing a gluten challenge for the blood panel.

 

Now, the big questions ---

Tell us how this rash reacts. Describe it to us please. Is it bilateral? Does it itch? How badly? When? Details, details.

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KB.tpw Rookie

Open Original Shared Link

 

This should take you to a slideshow.

 

So I know how DH is still celiac and I understand the testing process. I just don't know if this is even anything like DH. I read about different types.. I just feel like he would itch more often. Sometimes during the day he will dig in his skin and at night he often scratches (in his sleep as well).

Forever ago he started getting bumps in his armpit and the dermatologist said it was molluscum contagiosum. They said it would eventually clear up. It's been at least a couple of years since those started. I documented them clearing while gluten-free.

A couple of weeks ago he started digging at his ankle. He came in the kitchen where I was and he sat on the floor begging me to make it stop. I sprayed bactine on it and it didn't help. He continued to scratch at it for a while and I was convinced there were  bugs in his bed. I inspected it thoroughly the next morning and found nothing.

I have 3 other kids and no one has this type of rash. My daughter has some sort of soap allergy that we have yet to figure out, but she just got red around her mouth and wrists. She has cleared up completely since we switched to castile soap.

Okay, so.. the rash. It starts with him scratching. He scratches and rubs his skin for a while, then white bumps slowly come up.. like.. a ton of them. The skin looks irritated and the bumps get bigger.. then they look scabby. I don't see clear fluid filled blisters. He wakes up often with new tiny scabby places on his body. I assume from where he has scratched in his sleep. He doesn't seem to have the burning pain associated with herpes sores and if he gets the fluid filled blisters, I never see them. I get cold sores a couple of times a year and his skin is nothing like that.

20150328_150215_zpsuc363is5.webp

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KB.tpw Rookie

I tried to include pics in the slideshow of both elbows and wrists.. I'm pretty sure they're in there.

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squirmingitch Veteran

Okay, I could view the slideshow. First, dh doesn't always present as blisters -- it takes other forms. Read this:

https://www.celiac.com/forums/topic/84513-descriptions-of-dh-types/

 

Second, it's really hard to say from photos but what I'm seeing could be dh & then again it might not be. Not knowing the individual dates on each photo I can't tell if it's presenting bilaterally or not. Cartainly I saw both elbows but were they at the same time or within a few days of each other? I saw the lower legs "matching" so those are obviously at the same time. I saw the wrists too. DH presents bilaterally *most* of the time although there are the exceptions. DH is insanely itchy and even more so at night. One feature of dh is that you will itch & there is absolutely nothing there ...... until later - like 12 hours later. I had crazy itching up to 24 hours before anything appeared. And then sometimes you don't itch until there is already something there. BTW, we've had numerous people have dh in the armpits - myself included. DH can present anywhere on the body. it is not confined to certain specific areas which a ton of derms have yet to learn. Grrrrrrrrrr! 

The fact that he didn't have this while gluten-free but it did start after being at Dad's & eating gluten indicates it's some kind of rash associated with gluten. There are other rashes associated with gluten intake BUT being as (at a minimum) the wrists & lower legs/feet present echoing each other is a strong indicator it's dh -- combine that with the fact that you are dx'd celiac & that kinda speaks pretty darn loudly. You should not have a hard time getting a derm to do a dh biopsy --- but you might b/c they are so uninformed on the subject. I'm not sure you have to see a ped derm. I don't have kids so am out of my element where ped docs are concerned but it would seem to me a dh biopsy is a dh biopsy & any qualified derm should be able to perform the biopsy. BUT you will be better off if you walk in armed with info. just in case. It would be preferred to get a derm who is experienced in doing dh biopsies. You need to make them aware that you are dx'd celiac & therefore your children are more likely to also have celiac than the average child. You are aware aren't you that all your kids should be tested for celiac every few years?

Now for the really hard part in this case. I take it you have a gluten-free household? For the dh biopsy your son needs to be eating gluten just as if he were doing a gluten challenge for a blood panel or else you're going to get a false negative. Here are the guidelines for a gluten challenge:

Open Original Shared Link

So for 12 weeks he needs to eat gluten. You could achieve this w/o compromising your home by giving him some prepackaged gluten cookies or crackers for a snack every day & let him eat them outside. 

 

It might help if you got a note from the doc who dx'd you stating that your children should be tested every few years and that includes a dh biopsy if there is a rash. You're going to need a good derm and at the very least one who is willing to LISTEN and perform the biopsy correctly. You are in charge so insist. 

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KB.tpw Rookie

My oldest 3 were tested last summer. My son, around his 6th birthday in June, had a scope, biopsy, and blood work. The GI said he had gastritis and no signs of celiac. She couldn't explain why he had gastritis and put him on meds that seemed to help a lot. He's suffered from reflux his entire life- no idea why. He was one of those babies who screamed nearly his entire first year of life.

The 2 girls had blood tests and both were negative.

Even my own GI told me I had IBS and it was incredibly unlikely I had celiac. I had a rough 12 years trying to get a diagnosis. I went to physical therapy twice and even a psychiatrist.. but that's another story lol.

The pics I posted previously are all from the last couple of days.

This is from early LAST year when we finally took him to the dermatologist and they said it was MCV.

---photo%207_zpsqksblvk8.webp

 

The bumps in the pic above usually weren't on both sides of his body.

He also has what I think is Raynaud's phenomenon? One finger will often swell and feel really uncomfortable when he gets really cold. http://i1381.photobucket.com/albums/ah217/Krashley4/Mobile%20Uploads/old%20pics/photo1_zpswmlg7icj.webp

And this lovely pic is his geographic tongue- http://i1381.photobucket.com/albums/ah217/Krashley4/Mobile%20Uploads/old%20pics/photo12_zpsyr3j4aka.webp

Also his front 8 baby teeth have cavities despite brushing every day and going to the dentist every 6 months since he was 2. I also have awful teeth. I've had so many root canals. Ugh.

 

He goes to his dad's house every Wednesday and every other weekend and eats gluten there. He also eats gluten with his school lunches. I just happened to notice last summer when he was spending every other full week at his dad's, he always seemed to feel and look worse when he first got back. His dad is the kind who literally said, "Oh.. well he eats white bread anyway so it's ok." It's kinda hard to talk to him. It's really important that I get a diagnosis not just for school, but to give the ex husband so he will put out more effort and be held accountable if he doesn't.

 

I am taking my daughter to the pediatric dermatologist Tuesday to talk about identifying what ingredient in soap she is allergic to. I've never met him, but I have high hopes for finally meeting someone worth talking to. I'm pulling my son out of school and taking him with us so I can just show the dr and ask him when I can set up an appointment for biopsy. He is one of only 3 peds dermatologists in our state. Surely he has done the biopsy before. I hope that he will look at his skin and agree that we should get that done soon!!!

 

All I know is that his skin has never been as bad as it is right now. He came from bed about an hour ago (930pm) saying new places are itching. He's not in tears scraping his skin away, though.. but who knows if that won't happen tomorrow or next week or next month. He's uncomfortable and I want it figured out. Hopefully I'll get my answers soon!!!

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squirmingitch Veteran

I'm going to try not to forget to comment on all the things you've said.

So then he's presenting bilaterally now. That narrows down the list of rashes & is in line with dh.

I would like to relate my personal experiences..... When I first began to present with the little blisters they itched but not like the very devil. They would itch for a while & stop, maybe start back up & stop --- it wasn't a 24 hours a day thing. This was before I knew it was dh of course. Before the blisters I used to get places that were something like bug or insect bites (many report the same thing) & they would itch & stop & itch & stop. Also at that time there were not big groupings of them, just 1 to 3 or 4 & the same for when I began to get the blisters AND they weren't bilateral early on. I am however sure (in hindsight) that these were all early presentations of dh. As time went on all these presentations did become bilateral and when they did that it might be 3 days later that it showed up say on the other leg or other side of my neck -- you get the gist. From there things progressed to almost always bilateral concurrently and the intensity as well as the duration of the itching escalated. There were times I had none & times I had gobs. DH can & does wax & wane whether one is eating gluten or not until one day when you break out in the mother of all outbreaks & you just have no choice than to sit up & take notice & that will itch 24/7 like you wouldn't believe. It's called the suicidal itch & I know why! It didn't start out like that in the beginning though. There has been precious little research done on dh so I can't cite any bonafide studies or texts that back up what I am about to state. For this, I can only go on my suppositions based on my & my husbands experience as well as what other dh'ers have related on this forum. I believe dh is an escalating thing with tiny telltale signs that most of us never truly pay attention to b/c they seem so piddling such as when I would get 2 or 3 tiny blisters on my calf and I just knew if I told a doc about them & even showed him he would laugh me right out of his office. I believe the warning signs or early signs are there long before we get to the point of KNOWING or having a huge outbreak. Eventually the rash progresses to become more extreme with each outbreak. It would seem your son is following this line. 

I am very glad you have documented the MCV & how it cleared up gluten free as well as these photos. Make sure to take all those things with you to the Ped Derm along with your notes. I too am hoping this Ped Derm is on top of his/her game b/c your son certainly needs to get a dh biopsy if for no other reason than to rule it out. Use that to press your point if you are sensing hesitation on the derm's part. I believe (again no med studies to back me up) it's possible he could turn up negative on the biopsy but just like doing the blood panels for the other kids, a dh biopsy should be done for this one every few years if he continues to present with rashes. It may take time for things to "show up" enough to make a positive on a dh biopsy. 

I know you know your stuff so I'm not preaching at you but rather reminding you -- the old 2 heads are better than one --- so we don't leave anything out or forget anything.

Make sure your son does not have any oral steroids or steroid shots for 2 months prior to the dh biopsy also cut out any topical steroids (if any) 3 to 4 weeks prior. This will prevent false negatives.

My rash did not burn at first -- it just itched. it was later that it not only itched but burned and stung too.

The GERD as well as the dx of gastritis are telling. I wish I had a dime for every time a derm dx'd dh as molluscum contagiosum or scabies or common dermatitis or psoriasis.

 

You are being a great mom! I certainly agree it needs to be figured out. I'm so glad to hear you are watching all your kids & taking them for testing as they should be. 

 

When it comes time for the biopsy you might want to put several layers of gauze over the most likely lesions so he can't scratch them. The IGA pattern the lab is looking for is easily destroyed by scratching & such. Maybe put socks over his hands while he sleeps too.

 

I hope the derm is all you hope he/she is and you are on your way to some concrete answers. Please let us know how it goes.

 

OH, I have had tons of cavities and crowns, root canals too. I have excellent dental hygiene - I brush after breakfast every day & floss, brush & water pic every night before bed. When I go in for cleanings there is so little that they are done in about 10 minutes -- still the cavities. UGH! 

 

I can well imagine your 12 yr. journey to a diagnosis. It boggles the mind doesn't it? The stories I have read on here about the hell people went through trying to get diagnosed. How many times have docs told people it's all in their heads? 

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KB.tpw Rookie

Thank you SO MUCH for taking your time to talk to me and share your info. I have read just about everything there is to know about celiac. I obsessively read medical info and have an MS in health sciences, so I find it fun and fascinating to read journal articles lol. I have read all I can find, but I know that personal experience goes far beyond anything you can read in a journal. I know that some of my main symptoms when diagnosed were hair loss, itchy dry skin, and psychological issues like depression, anxiety, and adhd. That's certainly not your picture perfect textbook idea of celiac. DH has even less info available as far as variety of presentation. I can read until my eyes bleed, but none of it will be as valuable as the experiences of those who have actually dealt with the disease. So I seriously appreciate your time and effort helping me get a better understanding.

I will take him with me Tuesday and post that night with what the doctor says.

It sucks.. I was thrilled when I found out I had celiac because I finally had answers. I could finally work towards fixing it and I am thankful every day that it's such an "easy" fix. But it saddens me to think that at least one of my four children likely have the disease too. It makes it even worse that DH has a visible presentation.. and he's so young. After his shower tonight, I told him if anyone asks about the sores on his arms that he should tell them it's just an allergy and he's still trying to figure it out. I know how little kids can be. Blah. I want to hope that it's not DH, but it sure would be nice to have an answer and know the treatment.

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squirmingitch Veteran

You are most welcome!

Actually I was surprised when to read that:

"An increasing number of patients are being diagnosed without typical GI manifestations at older ages. A reasonable assumption is that approximately 70% of patients with newly diagnosed celiac disease do not present with the typical major GI symptoms. Once again, a relationship between the age of onset and the type of presentation is noted; in infants and toddlers, GI symptoms and failure to thrive predominate, whereas, during childhood, minor GI symptoms, inadequate rate of weight and height gain, and delayed puberty tend to be more common. In teenagers and young adults, anemia is the most common form of presentation. In adults and in the elderly, GI symptoms are more prevalent, although they are often minor."

From:

Open Original Shared Link

 

I am right with you on your feelings of celiac sucks but being thrilled to have an answer and no meds needed - easily controlled with the gluten-free diet. Also I can certainly echo your thoughts on at least one of your children having it too but again, if that is the case even with more than one of your children eventually at least it's an "easy" fix as you said. Things could be a lot worse. AND you are keeping on top of the situation so as to catch it early if any of your kids presents with celiac. That is monumental! They will not have to go through all the years of symptoms & wear & tear on every cell in their bodies that those of us who found out much later in life experience. They will most likely suffer no permanent effects of years of undiagnosed celiac. 

If your son does have dh then you are catching it so early and it shouldn't leave permanent scars. He won't have decades of antibodies built up under his skin so his dh should resolve fairly quickly and not linger for years torturing him. 

 

There is more I would like to impart/discuss but last night I woke around 3am & didn't get much more than a few minutes sleep after that so I'm going to call it an early night this evening.

 

I wish you the very best tomorrow and look forward to hearing how things went.

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KB.tpw Rookie

In the parking lot now about to head home. Daughter has irritant contact dermatitis. He looked at my son and seemed interested until I mentioned DH. He seemed to kinda push away after that. He said that it could be eczema from molluscum and that I would have to make an appointment with him at the children's hospital to set up a biopsy. He HAS done biopsies for dh before and said it could be that, but he said hes never seen it in a child before puberty. He said the condition his skin is in right now is not "worth" a biopsy and to put cortisone cream on it every day for 3 weeks.

Obviously I couldn't do all the talking I wanted to do because it wasn't actually my son's appointment. Ah well.

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KB.tpw Rookie

Would I be way off in thinking a high gluten and iodine diet while using cortisone should tell us if it's dh or molluscum induced eczema? I see where iodine and cortisone can help eczema, but iodine hurts DH and cortisone doesn't help.

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squirmingitch Veteran

No, you would not be off in thinking that. Just remember that dh does not always just "pop up" when eating gluten -- it isn't an automatic next day thing or next 4 days or even next month thing. DH can & does wax & wane while eating gluten or NOT eating gluten. SO, you have to consider that in your evaluation.

I looked up some links that you (probably have already found yourself) will be interested in reading. The most revealing is this first one &  it's the last line under "Conclusion".

Open Original Shared Link

 

I found it through this article:

Open Original Shared Link

 

More links dealing with dh in children:

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link this one is specifically dealing with children with dh.

 

You would have to subscribe to these two but I see Dr. John Zone is the section editor in the 1st one. He is one of the major players in dh research -- he's in Utah.

Open Original Shared Link

 

Open Original Shared Link

 

Reading all of those ought to have your retinas bleeding for this evening.

 

And if all that doesn't make you google eyed here's more:

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link  --- interesting article about the dental enamel defects in kids with dh

 

And this one is just plain interesting to read about someone else's experience & the progressive stages/presentations it went through with this child. I would bet my bottom dollar that child is celiac.

Open Original Shared Link

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KB.tpw Rookie

So its been a week since we started using the hydrocortisone. His skin was definitely less red by friday, but he still had plenty of what look like scabbed over mosquito bites. Two of he "bite" marks have been there for 3 weeks. He skipped a couple of days of the hydrocortisone while at his dad's and everything was definitely looking more inflamed. He's also got a few new spots- just barely between his butt cheeks and on both arms and ankles.

The pediatric dermatologist's nurse called last week and said she would talk to him about making my son an appointment, but she never called back.

I guess I just don't understand how this is supposed to work. If he has a serious flare one day, how I supposed to get it biopsied when they might make us wait until December to get an appointment? How are you supposed to schedule an appointment to biopsy something that comes and goes randomly?

I'm not above taking him to the children's hospital ER. I wonder if they could get the dermatologist over there for it.

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KB.tpw Rookie

I just don't think it could be eczema. The backs of his hands and outside of both elbows? And there are no scaly patches. Just sores.

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squirmingitch Veteran

The mirror presentation is pretty telling. Well, with derms who know what they're doing & understand dh they usually say to call when there is a flare & they let you come in that day & they go ahead & biopsy it. The children's hospital ER might be your best bet. They may know what they're doing & then again they may not. It's frustrating to say the least! Adults can go gluten-free & never look back but with kids it's really important to get that official dx so it's like pulling you hair out to get it done. 

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KB.tpw Rookie

http://i1381.photobucket.com/albums/ah217/Krashley4/Mobile%20Uploads/2015-04-07_17.01.35_zpsqxmp8fhr.webp

This is how he looks now. Much better than before.. they called yesterday and he has am appointment May 7th!

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squirmingitch Veteran

It sure does look much, much better.

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KB.tpw Rookie

For a week straight he didnt go to his dad's and has used only aquafor, organic coconut oil soap, and cortizone 10 hydrocortisone moisturizing cream (I put the cortizone cream on after bath to any spots that are red or he says itch). All of the laundry has been washed in All free and clear detergent with no fabric softener. Most of his skin was looking better, then this popped up. He's still eating gluten every day at lunch and sometimes I let him eat saltine crackers outside after school.

http://i1381.photobucket.com/albums/ah217/Krashley4/Mobile%20Uploads/2015-04-14_20.53.40_zpstp3djfbf.webp

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squirmingitch Veteran

So for 2 weeks he's been getting the topical cortisone the derm said to use for 3 weeks. Huh. Doesn't look like that's going to keep the rash at bay eh?

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KB.tpw Rookie

It's like.. The cream helps calm the areas where I put it, but then new bumps come up. He has a couple on his stomach, a couple on his thighs.. like I'm trying to put out a fire but the fire keeps jumping houses lol.

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squirmingitch Veteran

I totally understand. That's what dh does. Not to say other things don't do that but I don't know why derms are SO resistant to ruling out dh by doing a biopsy for it. Doctors are so obsessed with doing all kinds of tests to rule things out but when it comes to celiac or dh they suddenly know it couldn't be that & shut down on the notion that it won't hurt to at least rule it out then. Grrrrrrrrrrrrrrrrrrrrrrrrrrr! Stamping feet & pulling out hair.

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