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SPJ&E

Possible Rash From Gluten? (Pic Heavy)

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I was directed here by another member, so hopefully you guys can help me out. My son is 7 months old and has had this rash off and on since he was 2 months old. Out of the last 5 months, I would say he has had clear skin for maybe 3 weeks total (all broken up). It is red, bumpy, and really itchy. He is totally miserable sometimes.

He was breastfed until 3.5 months (though I had to cut out 100% of dairy). I don't know if gluten goes through that or not?? But he has been on formula since then (Neocate). He has been getting solids since 5 months. He started out with oatmeal. We figured out the detergent allergy finally (all his skin can handle is Ecos F&C), but then the rash came back. It seemed to be about the same time he started getting more oatmeal (mainly to thicken the thinner baby foods) and Cheerios.

This rash has come and gone at what seems like random. His skin will clear up and look great for a week and then spots start appearing again. If it's a contact rash and we bathe him as soon as we notice, it goes away quickly (as with the detergent). This does not go away no matter how much we bathe him. We use hypoallergenic/unscented Dove on him and hypoallergenic/unscented Eucerin. His skin is not dry, just covered in itchy red bumps. It is usually the worst on his legs (thighs), though it varies. Sometimes it is from head-to-toe, sometimes just his arms and legs, sometimes legs and back and belly, etc. It is just completely random and we are at a loss.

His doctor is stumped by it and the dermatologist we seen was absolutely useless. I've never mentioned celiac to his doctor, but my mom was diagnosed with it about a year ago. For now, we have stopped giving him oatmeal and Cheerios and are just doing fruits & veggies, along with his formula just to see if it makes any difference.

Please ask any questions you might have. I tried to be thorough, but probably missed something important. Any advice is greatly appreciated...even if you could just point me in the right direction or tell me it looks nothing like a rash from gluten/celiac.

Here are some pictures from January and February. This is what his skin looks like at least 95% of the time.

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O-M-G! OMG, OMG, OMG, OMG!!!!!!!!! Looking at those pictures (which are fabulous BTW; b/c they show it in such detail) are giving me flashbacks. The photos plus the fact that your mom was diagnosed with celiac ...... that poor baby has dh! And therefore celiac.

He must be miserable. I KNOW. He is miserable.

Okay, you need to get him tested right away. The sooner the better so you can get it done & get him started being gluten free. He can't go gluten-free until the testing is done but you will want the diagnosis for his benefit for the rest of his life you see. You need to see if you can find a GOOD derm who is EXPERIENCED in dh biopsy. And you need a pediatric gastro who is experienced in celiac diagnosis. I don't care where you have to drive to but you need to do it NOW. Talk to your mom's doc who diagnosed her & see if he/she can recommend the proper docs. OR take your son to your mom's doc & see what that doc says.

Meanwhile, use the coolest water he can stand to bathe in as hot water makes the dh even redder & itchier. Use witch hazel & soak cloths with it & swab him down --- it will help to cool the dh & help some with the itching. For that matter; after a bath you can just pour it on him. Since he seems to have allergies you will want to test the witch hazel first to make sure he's not allergic. I have a friend allergic to witch hazel so it does happen.

Get gluten-free everything you use on him --- shampoos, soaps, lotions --- everything.

I'm positive others will be on here to answer soon as well.

I'm crying for your poor baby. And that doesn't mean I think you're a bad parent. please understand I'm not knocking you in any way, shape or form. I just know the misery he's going through.

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Oh, and take those photos with you to any doc you go to.

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Thanks for your reply! I don't take anything you said as knocking me. I just want help! It's hard to see him digging at his arms and legs and knowing that I don't know what to do for him.

To respond to you though, we already drive about 1.5 hours to get to his ped because she is just wonderful, so it's not a big deal for us to drive to see other doctors for him. We actually prefer it, as quite honestly our local doctors suck. The dermatologist we seen was local and that was a waste of time. We have no problem going to another one, but it will definitely be one in a bigger city (we live in a very small town). His doctor wants to see him to discuss allergies, since it keeps coming back. So we will get that set up and go from there. She has always been great about listening to us and working with us on things.

The only problem with testing him is he has been on Prednisone off and on for about a month. He has been getting 1/4 tsp when it flares up really bad for days, he is miserable, and nothing is helping. He just had a dose this afternoon (and he looks muuuuch better). I know steroids can cause negative results on celiac tests. I think I read you are supposed to be steroid free for 1 month before testing? I'm sure she would have no problem testing him, but I don't want to put him through that if the steroid is going to interfere with the results anyway.

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Poor thing! I totally feel for you! My 2 year old has rashes that start out looking like this but then he scratches so much they go a deep red color. His also comes and goes, but never seems to go totally away. I am no expert on this, as I just posted the same question a few days ago about my son, with pictures. However, I will say that your sons rash looks more severe and covers more of his body than my sons. I hope you get some answers soon!

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I, too, think that your son has DH--it sure looks like it! If you can't find a dermatologist who is experienced with biopsying DH (and even if they say they ARE), make sure that whoever you find to do the biopsy takes the biopsy from clear skin ADJACENT to a lesion. If a biopsy is taken from a lesion itself, it will result in a negative pathology. This is VERY important, and very few dermatologists know this. If the biopsy is positive for DH, your son has celiac....and there's no reason for further labwork or an endoscopy. Many gastroenterologists are unaware of this and may insist on bloodwork and an endoscopy. There really is NO need to do so, since a diagnosis of DH is a diagnosis of celiac disease.

Have you checked to see if the formula is free of both gluten and iodine? It could be that it's fortified with iodine. If so, that's not good for your son. If he has DH and you eliminate only gluten at first, the iodine in his diet will keep the lesions active. You'll only need to eliminate the iodine for a month or two, and then you can add it back in slowly, since it's an important nutrient.

Please let us know what happens--I feel so sad looking at the photos you've taken.

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If you're looking for a good gluten-free cream try Vanicream.

No Aveeno!

If he will allow you, put some ice packs on the rash.

Yes, get the rash biopsied. It's your best bet, at his age, for a Celiac dx if indeed it is DH. Babies test neg most times on blood work and endoscope.

Poor little guy.

If you can't get a doc to biopsy it (and id get rather militant about it) you may try a gluten-free trial and see if it works.

Find a derm who is familiar with DH biopsies. It is worth it to find one who is experienced with it.

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And tell the doctors that your mom was diagnosed with celiac.And for that matter you might ought to get tested yourself just so you know. It's harder to go back to gluten after you've gone gluten-free. Usually you have much stronger reactions going back on gluten for testing after having been gluten-free for a while.

And yes, the prednisone will invalidate any tests including the dh biopsy..

And the lab the doc sends the dh biopsy to can make all the difference in the world. They have to know they are supposed to look for dh. And I agree that the dh biopsy is the fastest & easiest way to get the diagnosis. And if a derm is unwilling to give the celiac dx upon a positive biopsy then see if your pediatrician will do so. But any derm worth their salt with dh is going to know a dh dx is a celiac dx.

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I think you're sons case would warrant a request for an immediate appointment. Insist on it.

It looks very much like my case (though I'm 39:) in its early days. I thought I was getting mosquito bites in the middle of a freezing winter. Now almost 12 months later my all over "bites" are finally beginning to heal. Hopefully given your sons age he may respond sooner than my 39 years of gluten-intake skin.

You may want to speak to your good doctor about antihistimine. It doesn't treat or cure or prevent but a good dose seems to take a little bit of the edge off especially during the horrible night time.

The only thing that has (literally) saved my sanity and allowed me patches of sleep are coldpacks (put in fridge as ice/freezer mightn't be so popular with a 2y/o). Buy the soft/material ones as these are much better. Have at least three so you can rotate them. Keep them clean (every use!!!) to prevent infection.

Some other things/advice:

* face clothes (wet and cooling on the skin) - perhaps use a soft cloth as most commercial face cloths tend to be a little abrasive

* soft cloth gloves (I still scratch like crazy but while I'm at home they are helpful. Perhaps you know someone who can sew?)

* keep his finger nails as short as you can and ALWAYS clean

* other people might disagree but you shouldn't have to use any soap everyday - consider giving him a totally chemical free day every other day or two

* don't use clothes washing powder. Buy a gluten free liquid.

* later down the track (post testing etc) you might have to consider making your entire household gluten free - it was only recently that I have done this and I am finally healing (with no change to my own diet or routines) and it has made an enormous difference.

I'll be thinking of you and bub the next few weeks. Keep us all update along the journey. And as suggested by others you MUST get tested. Celiac can come in a "silent" (but still potentially deadly) form also.

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Yes, I am concerned about the prednisone interfering with his testing since it's goal is to reduce the inflammation you are tryhing to measure. I have read where you should be off it as long as you were on it (this was a five-month example) to get it out of your system. Now I know it is what gives him relief, but if you could eliminate the glluten and oatmeal, use the cold compresses, give him an antihistamine prescribed by his docor and have him wear the gloves, you might be able to keep him comfortable enough for a long enough time to get a valid biopsy. It is so tough to watch them suffer, but prednisone should not be a long-term treatment for a wee guy either.

I wish you well in your efforts to get him diagnosed and echo others who say it is really important to find a dermatologist who is familiar with celiac disease and its testing procedures.

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According to these two sources; even for a dh biopsy you have to be eating gluten so he needs to be off the prednisone yet still eating gluten which is going to be hell b/c there is a rebound effect when going off the steroids. But better done now rather than later in life.

http://en.wikipedia.org/wiki/Dermatitis_herpetiformis

http://www.coeliac.org.uk/healthcare-professionals/associated-conditions-and-complications/dermatitis-herpetiformis

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My first thought on seeing the pictures was agreement with the others. Given all of the other great responses, it may be that testing asap would be your only option; knowing the results may be negative due to the steroids. OR, the best option might be to see if the ped dr. will diagnose based on family history, and those pictures after a gluten-free trial? If the gluten-free trial helps (which it undoubtedly would), you'd have before & after pics as well as family history and perhaps a genetic test? Obviously you'd want to check with the Dr. first, before taking that option. Then you could get him off gluten sooner, and have a dx.

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ciamarie brings up a good option. If you can get the ped to agree then it would be the fastest means to an end.

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Oh my Lord,

Your little guy's photos are heartbreaking. You did a great job by the way on the pics. I agree with all the posters here and know you want an answer. If it were my baby and I knew about DH I would go gluten free right away and see if a couple of months gives him any relief. He's only 7 months so feeding him is easy to control. I would not use any commercial baby foods. A little of your own soft cooked fruit and veggies for a while would be fine I think. Lots of babies are on just milk for 9-12 months and do fine. I feel so bad for you. I know that, miserable as he is, you are even more so.

Either way, staying on gluten, cutting the steroids and then testing... Or just doing a trial gluten free is at least something you can do. I know you feel helpless. You're not. Be firm with Drs if you are getting no answers.

I will keep your family in my prayers. Please keep us posted and know that you have many, many people here who know a lot and are genuinely caring.

Best wishes.

Linda

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Thank you all for your responses! I can't tell you how much I appreciate any little bit of help/advice!! I am a bit overwhelmed, but definitely taking it all in. I sent an e-mail to his doctor and I'm sure she'll get back to me on Monday and we'll go from there. For now, we are just going gluten free, mainly because I can't make myself give it to him, thinking that might be causing that rash. He is out of the steroid, so we won't do anymore of that. The dermatologist just gave him enough for a few doses anyway. He does have a steroid cream, but again, we just won't use it.

I am thinking about having my 7 year old tested in the meantime. I've thought for a while, that he might have it, though I'm not sure. He has random bouts of diarrhea and tummy aches and has for years. He will eat and then all of the sudden have to run to the bathroom. Sometimes it's not diarrhea, but he has to go right that minute. I've started paying more attention to it lately and pasta does it everytime and sandwiches usually do as well. Before we thought it was the tomato sauce with the pasta (he also gets a rash around his mouth at times), but now I'm thinking it's the pasta. The other day we had bowtie pasta and sauce and afterward, he had diarrhea 3 times (it might have been 4). He hasn't been on a steroid and is still on gluten, so I thought testing him would be a good start.

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SPJ&E,

Sounds like a good plan. It does sound as if your 7 yr. old has some real issues which could well be celiac. Why don't you try just feeding him some plain pasta with no sauce --- just maybe butter on it & see what happens. That way you eliminate any sauces as sources of his digestive issues. But considering the history involved I don't have any doubt that your 7 yr. old has celiac or at the very least gluten sensitivity.

All of this can be terribly overwhelming. And doubly so when it's your children whom it's happening to. But reading your posts it's easy to tell you're doing your research. Knowledge is power. Good for you!

Please don't hesitate to ask questions any time at all. There are so many knowledgeable "veterans" on here.

Let us know what transpires. We DO care.

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Yep.. definitely time for you all to get tested. You should also consider talking to any of your own siblings, if you have any. I'd wait until the kids are diagnosed (it seems so likely to be celiac!) and then give them the whole story of what your kids have been through - pictures and all.

You'd be amazed how many unusual (but what I thought for 38years was just normal for me) things have cleared up with me. Even down to my nails always being brittle. Now, nearly a year gluten and the past month or two they have become quite hard to cut. Spins me out.

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I have another quick question. He had the steroid on 4/20, so 3 days ago. You can still feel the bumps everywhere but they are smaller and you can't see them. Does that still go along with DH or does that sound more like a contact allergy?

I ask because we do have a cat in the house. I don't see it being that as like I said, he will clear up for an entire week at times. I can't say for 100% certain it's not that though.

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Yes, steroids are an immune suppressant and are used to treat refractory Celiac Disease. Some DH responds, some doesn't.

Mine did.

However, be warned, it will probably come roaring back worse than before within a few days. Load up on ice packs and Vanicream.

It is also normal for DH to flare and recede; however, never healing completely or disappearing and reappearing within hours.

It seems to run in 2-3 week cycles. Swelling, filling, popping then drying and healing. The skin is delicate while healing, and trauma to the area can cause a resurgence for some.

Some foods can aggrivate it - like iodine and salicylates rich foods. That maybe why it is worse sometimes than better.

Unless he's truly allergic to the cat, or there's gluten in the cat food or gluten in the litter the cat shouldn't be an issue.

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His bumps have never popped. But the rash has also never gone away at all without a steroid. The only time they scab over is if he digs at them too much. Is that normal for DH too? I guess it's possible that it's never had the chance to run it's full cycle, since he was still on gluten until a few days ago.

I ask about the cat because some others (on another board) think the cat might be what he is allergic to, rather than him having celiac. I am doubtful, like I said, but I guess I can't say for certain it's not that.

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His bumps have never popped. But the rash has also never gone away at all without a steroid. The only time they scab over is if he digs at them too much. Is that normal for DH too? I guess it's possible that it's never had the chance to run it's full cycle, since he was still on gluten until a few days ago.

I ask about the cat because some others (on another board) think the cat might be what he is allergic to, rather than him having celiac. I am doubtful, like I said, but I guess I can't say for certain it's not that.

I suggest you stop wondering if it's DH and get it biopsied or try the gluten-free diet, or both. It's really the only way to know.

If the rash responds to gluten withdrawal he has a gluten rash; therefore, he has a problem with gluten.

DH or gluten rashes are known to look and act differently from week to week, person to person.

It may be the cat. It may be gluten. It may be both or neither. The only way you'll know is to go through testing and elimination.

Btw my husband, nephew, and friend are allergic to cats and they get itchy eyes, sneezing - allergy symptoms. That's what I've noticed in most people allergic to cats.

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My dad and I are also very allergic to cats – we get itchy, heavy, stinging, watery eyes, headaches and stuffed noses. No rashes or hives. :)

I am wondering if these people on the other board are knowledgable about Celiac and DH?

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We can't test him anytime soon because of the steroid he had 3 days ago. We had already decided to try him on a gluten free diet and see if it makes any difference though. Of course, he's only been gluten free for 4 days, but it's a start.

I'm mainly just asking what's "normal" for a dh rash because I really have no idea. He is still itchy at times and we can feel the rash, even though the bumps are tiny and not easily seen (they are the same color as his skin, rather than being swollen and red). I didn't know if that was typical (or if it's just typical to be completely random) or if it sounded more like an allergy to the cat. He doesn't have the sneezy or itchy/watery eyes...I didn't even think of that. It's just this stupid rash.

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My dad and I are also very allergic to cats

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We can't test him anytime soon because of the steroid he had 3 days ago. We had already decided to try him on a gluten free diet and see if it makes any difference though. Of course, he's only been gluten free for 4 days, but it's a start.

I'm mainly just asking what's "normal" for a dh rash because I really have no idea. He is still itchy at times and we can feel the rash, even though the bumps are tiny and not easily seen (they are the same color as his skin, rather than being swollen and red). I didn't know if that was typical (or if it's just typical to be completely random) or if it sounded more like an allergy to the cat. He doesn't have the sneezy or itchy/watery eyes...I didn't even think of that. It's just this stupid rash.

Unfortunately there is no "normal". There's typical, which unfortunately has been taken as "only" by many doctors.

Also, unfortunately, once you go gluten-free (and if it is the source of the problem) you will not be able to reliably test him without reintroducing gluten.

I know this is incredibly difficult; however, you are going to make yourself nuts wondering. Been there, done that.

I suggest you do reading in the DH forum here on this site. You'll soon understand there are usually ancillary aggravating factors like salicylates or iodine with DH. Sals can also be a cause for a rash, on it's own, in people without a gluten problem.

It is important while you trial him to get gluten completely out of his world. Not on his skin - DH people are particularly sensitive to gluten in lotions, etc. wash everything he touches or puts in his mouth. If his bottles or cups are scarred replace them (I believe you've given him oats/cereal before?).

He may also have an issue with cows milk - it may be an issue if he has gi damage and can trigger DH. Anything that is an irritant to him can trigger DH until the antibody levels fall.

Sometimes antihistimines will help DH. They are also immune suppressants. If that rash comes raging back after the steroid wears off you may ask the ped about a low level dose until you can get it to calm down. I had a bit of luck with my rash and antihistimes, but it didnt clear the rash. It did help with general ai symptoms. The only reason i mention it is because of the risk of the rash coming back in a rage from the steroid.

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    • Dear Cyclinglady,   thank you for your help. Yes, I am trying to find out what my underlying condition is. But the doctors don’t help at all (insurance can’t be an issu since I have ful insurance). But they closed my case with the diagnosis: nonfunctional LES with constant taking of ppis for a lifetime. But ppis are making my problems even bigger so I trying to fing out what is happening. I’ve been convincing them to test me for celiac disease and because the result was negative (only IGA testing) they ruled it out. All I have is low vitamin d, low iron, same problems as before taking ppis, nausea with ppis, still bloating with gases and burping. Ppi works only 12 hours - the biggest dose. After 12 hours burping brings more acid to my esophagus. All that doctors say is that ppis should work and don’t believe me that in my case ppis are working just half of the time. I tried to take half dose in the morning and half in the evening but half dose helps only for 6 hours. So their suggestion is: take more ppis and another medicine for motility. and case closed for them letting me desperate and completely lost. Any help appreciated, Aya  
    • Posterboy, thank you sooooo much. I can’t tell you how greatful I am for your long and detailed answer. I have many additional questions (I asked you few more additional questions in my other post about celiac and reflux) I am just trying to find my underlying condition. I am afraid I’ll have to stay with ppi for two additional months, since I have esophagitis grade b, confirmed with biopsy a week ago. It was first time that I have inflamed esophagus. Last endoscopies showed only nonfunctional LES. I think this inflamarion is because od a panic attack after drinking coffee with a lot of sugar and nausea after that. Some coffees make me sick and some don’t. I would just like to find out what relaxes my LES and what is my underlying condition.  Ppis obviously don’t help, since my problema with bloating and gases and reflux are continuing. Stomach hurts when is empty. And I have huge amount of gases 1 hour after eating and during the night 4-6 hours after last meal. Please if you have any additional idea what could it be, tell me!!! Best, aya
    • Oh, wow, thanks, I was told by my doctor that I had the "full" panel but I guess not. Unfortunately I have the type of insurance that means I have to see her again before I can do anything else and she is out on vacation until July 10 so there is almost no point in trying to make another appointment before the specialist one. I doubt urgent care would do it?
    • Thank you all for your help!!! It’s a bit clearer now.  I had problems with gases and bloating and reflux a year ago and doc prescribed Lansoprazol. He said my lower esophageal sphiincter doesn’ t work properly.  I was taking lansoprazol 30mg for half a year with huge problems with nausea and even more bloating. Than I lowered the dose to 15 for next half a year and felt better and than stopped taking them. I’ve been off for a months when I started noticing numb tongue and reflux again. So I started taking ppi again. And it’s worse again. I know I have to stop using ppi, but I think I have underlying condition that is making my bloating and reflux and I have to solve it first so that reflux, which is my biggest concern, will go away. I have been anemic long years before taking ppi, now I have low vitamin d, and quite high result IGA 16 (celiac is >20). Can be reason for low vitamin d in ppi too or is more likely because of celiac? Doctors don’t want to make any additional test because they say celiac disease can’t be the reason since this test is negative. And so I am still searching what could be my primary problem. They just want to operate my LES and that’s it for them. But I know this won’t solve my problem since the reason has to be somewhere else. The problem is that the highest dose of lansoprazole is helping me for 12 hours and not 24 like it should. It’s just making my nausea worse and doesn’t help like it should I get bloated with reflux gases, burping 1 hour after eating. My last meal of the day is at 8 p.m. And the worst reflux attac is usually around midnight and 1 a.m. Aya
    • The full celiac panel includes: TTG IGA
      TTG IGG
      DGP IGA
      DGP IGG
      EMA
      IGA A positive on any one blood test should lead to a gastroenterologist doing an endoscopy /biopsies to see if you have celiac. It looks like you are missing the DGP tests. Perhaps you can get them done while you are waiting for your gastro appointment. You could possibly have a more definitive result from them.  
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