2 Year Old With Dermatitis Herpetiformis

[kris2231]

Hello, This is my first time on this site and am hoping for some great information. My 2 year old has Dermatitis Herpetiformis. I had taken him a while back to the pediatrician for her to look at the rash. She suggested going gluten free. We went gluten free and the rash got better and all of a sudden it has come back with a vengeance. I have no idea what it could have been unless he accidentally ingested something in the church nursery Wednesday. My problem is this... when I asked the doctor to test for Celiac she refused ( i think this is absurd) saying she didn't see the need. All of the research I have done says "Celiac" My father died at 50 of intestinal cancer and it makes me wonder if it was in our family and no one knew it until now. So, I have been doing the gluten free diet and it's been going great until now. I am so frustrated seeing him itching so badly. I don't want to bring him back to the pediatrician about this. Should I take him to an allergist or a gastrologist (he doesn't have stomach issues). I am so confused at the posts that say "if you have DH then you have Celiac" Shouldn't the doctor think this is important enough for a test?? I just want to go to the right Doctor and not get a run a round.

Thanks for any information you can give

[kareng]

Did the doctor biopsy the skin next to an active DH outbreak? That is how Dh is "officially" diagnosed. If it is officially diagnosed, then you don't need any other tests.

I doubt a Ped did a biopsy, so I would let him eat gluten and take him to a dermatologist to get it diagnosed. An official diagnosis could be helpful when he goes to school, camp, college dorms, etc. Also, you want to make sure it isn't something else that you aren't treating because someone looked at it and said "DH".

[kris2231]

Did the doctor biopsy the skin next to an active DH outbreak? That is how Dh is "officially" diagnosed. If it is officially diagnosed, then you don't need any other tests.

I doubt a Ped did a biopsy, so I would let him eat gluten and take him to a dermatologist to get it diagnosed. An official diagnosis could be helpful when he goes to school, camp, college dorms, etc. Also, you want to make sure it isn't something else that you aren't treating because someone looked at it and said "DH".

Of course she did NOT do the test. I am shocked that the doctors are so laid back about this. When he was younger, and the rash started the doctor just would say oh its just an allergy. Give him some Citirizine and it will help. I am so tired of the "cover-ups".

I failed to describe his out break. It is clusters of small bumps with clear fluid located behind his knees, elbows and back. Also his earlobe cracks and itches ( the flare up is really bad when his earlobe starts itching and cracking) While I was waiting on some feed back, I went ahead and made an appt with an allergist, but it isn't until Monday at 1:30. I think the rash should be starting to clear up by then. Im wondering if he will still be able to tell if it is DH. So, if it is DH is that a sure diagnosis of Celiac?

[rosetapper23]

If you do wish to have an official diagnosis, I agree with Karen that your toddler will need to be fed gluten for a while so that a dermatologist can do a biopsy. However, if you choose this route, you should do a little research to make sure that the dermatologist you take him to has past experience with DH biopsies. Most do NOT have experience and will biopsy a lesion directly. This results in a false negative. The doctor MUST biopsy CLEAR skin adjacent to a lesion and NOT the lesion itself.

Second, as for why your son's DH has returned, there could be several possibilities. Celiacs with DH tend to be highly sensitive to gluten exposure, and it could be that the shampoo you're using contains wheat (many do). There are several shampoo brands that don't contain gluten--I personally use Dessert Essence Organics shampoos and EO shampoos. Both can be found at stores like Whole Foods. Your son can also get gluten contamination from a relative or friend kissing him on the lips or from touching a contaminated toy. Play Dough and certain glues contain gluten, and he should avoid touching them.

Lastly, celiacs with DH are oftentimes affected by exposure to iodine. For many of us, the gluten causes the eruption to occur, but it is iodine that keeps the DH rash active. You should switch to non-iodized salt and avoid feeding him seafood, asparagus, salty snacks (chips, pretzels, popcorn, crackers, etc.), and perhaps eliminate dairy for a while. In some areas, the dairy is contaminated with high levels of iodine. I switched to organic dairy in my area, because the regular brands all contained iodine. You may have to experiment with different brands.

I hope these suggestions help!

[eatmeat4good]

Yes, if your child has DH, then your child definitely has Celiac. You have some evidence in that direction since he healed by going gluten free. However, if you want the biopsy he will have to eat gluten again in order to test positive. Some people do not ever test positive on blood or biopsy and yet they have DH. Your Dr. may know the inaccuracy of testing and since your child has lesions in the classic and typical places and of the classic and typical presentation of DH, she may be fairly confident that it is indeed DH, particularly if the doc knows that it responded well to the gluten free diet.

An endoscopy is not needed to diagnose DH. It is often negative in DH patients, and yet they are indeed Celiac. The skin biopsy can be negative and it often is. Yet, the rash clears up on going gluten free.That is the telling part.

As to how a 2 year old would get glutened accidentally. I agree with the above poster who said that DH is VERY sensitive to traces of gluten. Therefore if your child were crawling on a floor where other children had eaten cookies or crackers, he would easily get contaminated hands, or pick up a crumb and put it in his mouth, or play with children who had just eaten cookies or cracker and get glutened by transfer from hands or toys. Kids put their hands in their mouth a lot. Unless the tables are cleaned right after cookies and crackers are served then the table too, could be a source of gluten. These are possibilities if it happened at the nursery.

I have DH. I got a reaction from handing out cookies to kids and then eating my gluten free food. This was before I knew how very sensitive DH is to cross contamination. That was more than enough to cause a DH outbreak for me. I learned to be meticulously careful from that incident. It isn't from touching gluten. It is from gluten being on your hands and ending up getting ingested as you touch your mouth or food. It would be quite easy for this to happen to a toddler.

If you want a definite proven diagnosis with testing, you need the dermatologist. I don't think an allergist will help with diagnosing DH/Celiac, except to tell you to eliminate gluten and see if it makes a difference or maybe to test your child for wheat or other food allergies. DH is an autoimmune disease not an allergic reaction so the most an allergist can do for you if you suspect DH is tell you to make an appt with a GI or a Dermatologist.

I think you should at least consider contacting the pediatrician for a topical that might help relieve your child of the pain and itching at least temporarily. Nothing but being gluten free will help the rash if it is truly DH. But knowing how maddeningly itchy and painful it is, I cringe that your child has to suffer with it. We adults can medicate ourselves with OTC benzocaine products like solarcaine, or pain relieving ointment with benzocaine in it (Walgreen's brand). However, you want to ask the Dr. before you put these on your child. I'm not sure if benzocaine can be toxic to children or if there would be another type of itch/pain relief your DR. could order.

One last thing I will mention is that DH is often sensitive to NSAIDS so if you give your child Tylenol or Ibuprofen it can cause a flare or make it worse if it is indeed DH. This doesn't happen to everyone with DH, but it happens often enough that NSAIDS are cautioned against in the medical literature regarding DH. I happened to react to NSAIDS terribly. I hope this isn't the case for your child, but wanted you to know just in case.

I hope you can get some answers and a proper diagnosis, but even if your child tests negative, wanted you to know it still could be DH. The location and the description of the presentation of it are consistent with DH.

Hope I haven't muddied the water for you too much. I hope your child feels better very soon. You're a good mom to keep asking questions and doing what you can to help your child.

[kris2231]

Yes, if your child has DH, then your child definitely has Celiac. You have some evidence in that direction since he healed by going gluten free. However, if you want the biopsy he will have to eat gluten again in order to test positive. Some people do not ever test positive on blood or biopsy and yet they have DH. Your Dr. may know the inaccuracy of testing and since your child has lesions in the classic and typical places and of the classic and typical presentation of DH, she may be fairly confident that it is indeed DH, particularly if the doc knows that it responded well to the gluten free diet.

An endoscopy is not needed to diagnose DH. It is often negative in DH patients, and yet they are indeed Celiac. The skin biopsy can be negative and it often is. Yet, the rash clears up on going gluten free.That is the telling part.

As to how a 2 year old would get glutened accidentally. I agree with the above poster who said that DH is VERY sensitive to traces of gluten. Therefore if your child were crawling on a floor where other children had eaten cookies or crackers, he would easily get contaminated hands, or pick up a crumb and put it in his mouth, or play with children who had just eaten cookies or cracker and get glutened by transfer from hands or toys. Kids put their hands in their mouth a lot. Unless the tables are cleaned right after cookies and crackers are served then the table too, could be a source of gluten. These are possibilities if it happened at the nursery.

I have DH. I got a reaction from handing out cookies to kids and then eating my gluten free food. This was before I knew how very sensitive DH is to cross contamination. That was more than enough to cause a DH outbreak for me. I learned to be meticulously careful from that incident. It isn't from touching gluten. It is from gluten being on your hands and ending up getting ingested as you touch your mouth or food. It would be quite easy for this to happen to a toddler.

If you want a definite proven diagnosis with testing, you need the dermatologist. I don't think an allergist will help with diagnosing DH/Celiac, except to tell you to eliminate gluten and see if it makes a difference or maybe to test your child for wheat or other food allergies. DH is an autoimmune disease not an allergic reaction so the most an allergist can do for you if you suspect DH is tell you to make an appt with a GI or a Dermatologist.

I think you should at least consider contacting the pediatrician for a topical that might help relieve your child of the pain and itching at least temporarily. Nothing but being gluten free will help the rash if it is truly DH. But knowing how maddeningly itchy and painful it is, I cringe that your child has to suffer with it. We adults can medicate ourselves with OTC benzocaine products like solarcaine, or pain relieving ointment with benzocaine in it (Walgreen's brand). However, you want to ask the Dr. before you put these on your child. I'm not sure if benzocaine can be toxic to children or if there would be another type of itch/pain relief your DR. could order.

One last thing I will mention is that DH is often sensitive to NSAIDS so if you give your child Tylenol or Ibuprofen it can cause a flare or make it worse if it is indeed DH. This doesn't happen to everyone with DH, but it happens often enough that NSAIDS are cautioned against in the medical literature regarding DH. I happened to react to NSAIDS terribly. I hope this isn't the case for your child, but wanted you to know just in case.

I hope you can get some answers and a proper diagnosis, but even if your child tests negative, wanted you to know it still could be DH. The location and the description of the presentation of it are consistent with DH.

Hope I haven't muddied the water for you too much. I hope your child feels better very soon. You're a good mom to keep asking questions and doing what you can to help your child.

Oh my goodness, I didn't realize there was so much involved. It is overwhelming. I thank each of you for all of the information and advice.

About the NSAIDS... He was taking Tylenol previous to the outbreak. I would guess about 3 days prior due to a fever.

Also, that makes alot of sense about the Allergist. I will have to check around about a dermatologist.

[eatmeat4good]

Yes, it can be overwhelming for sure. You might want to do some reading about DH. I didn't go into the fact that some people do not get healing without limiting iodine. But since Iodine is a necessary nutrient and since you are dealing with a child, you would definitely want to talk to the Dr. about the iodine issue with DH. Iodine tends to keep the antibodies active and some of us have to limit iodine in order to heal properly. This isn't always the case, but it is definitely true for some of us. I know you are feeling overwhelmed, but I would be remiss if I didn't mention the iodine connection with DH. The rash can take a long time to clear, but it seems that you were able to get it under control just by eliminating gluten, so you might be alright without limiting iodine. I just wanted you to know because this is a life-long condition and there may be a time when your child's DH reacts to iodine even if it doesn't right now.

I will send you some links about DH.

[squirmingitch]

I would like to add a note that if you DO want to get him biopsied for dh then if he has any steroids either orally OR topically for at least 2 months before the biopsy then it will likely make th ebiopsy negative so I know the docs 1st thing will be to put him on steroids to help the itching but if you want that biopsy then you can't let that happen.

Ice packs help. Vanicream. Vaseline. CVS Caladryl pink (the copycat) but NOT the clear version. Benadryl Extra strength itch stopping gel. I'm no expert but I think these items should be safe for a child that age & they will help with the itching. Also Witch Hazel.

[squirmingitch]

Kris, here is a link for reading on dh. It's a long read but if your child has dh, you will want to know about dh. This will also explain why it's so hard for a celiac with dh to positive blood work or endoscopy.

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

I might add that you consider this after reading that link. With children who DON'T have dh but are celiac --- the blood work is neg. more often than with adults AND they often have neg. endoscopies b/c they haven't lived long enough yet for a lot of damage to have been done to their gut --- at least not what is detectable by sight or the current tests & their sensitivities.

[kris2231]

Yes, it can be overwhelming for sure. You might want to do some reading about DH. I didn't go into the fact that some people do not get healing without limiting iodine. But since Iodine is a necessary nutrient and since you are dealing with a child, you would definitely want to talk to the Dr. about the iodine issue with DH. Iodine tends to keep the antibodies active and some of us have to limit iodine in order to heal properly. This isn't always the case, but it is definitely true for some of us. I know you are feeling overwhelmed, but I would be remiss if I didn't mention the iodine connection with DH. The rash can take a long time to clear, but it seems that you were able to get it under control just by eliminating gluten, so you might be alright without limiting iodine. I just wanted you to know because this is a life-long condition and there may be a time when your child's DH reacts to iodine even if it doesn't right now.

I will send you some links about DH.

Thank you so much. You know, I have noticed an improvement already as of this morning. It seems like the rash is already drying up. The backs of his legs are now a little red and just very rough as are the elbows. I am really wondering about the Tylenol. I seems to be the worst case i have seen on him so far, but thankfully is already healing. I hope the iodine is not going to be an issue. I would be thankful for any links you could provide.

[kris2231]

I would like to add a note that if you DO want to get him biopsied for dh then if he has any steroids either orally OR topically for at least 2 months before the biopsy then it will likely make th ebiopsy negative so I know the docs 1st thing will be to put him on steroids to help the itching but if you want that biopsy then you can't let that happen.

Ice packs help. Vanicream. Vaseline. CVS Caladryl pink (the copycat) but NOT the clear version. Benadryl Extra strength itch stopping gel. I'm no expert but I think these items should be safe for a child that age & they will help with the itching. Also Witch Hazel.

I have been giving him Hydroxyzine. I'm going to have to look that up to see if it is a steroid. We have also been applying regular old Calamine lotion. That seems to help a bit. I am just so glad he is feeling a bit better.

Thanks for the link to the read on DH. I will get right on that. The more information the better. I have already learned so much just from these posts. Makes it a bit easier knowing others have the same issues and are able to keep them under control. And also that strangers are willing to share their knowledge and experiences to help others.

Thanks again everyone!

[eatmeat4good]

Thank you so much. You know, I have noticed an improvement already as of this morning. It seems like the rash is already drying up. The backs of his legs are now a little red and just very rough as are the elbows. I am really wondering about the Tylenol. I seems to be the worst case i have seen on him so far, but thankfully is already healing. I hope the iodine is not going to be an issue. I would be thankful for any links you could provide.

So glad to hear your baby is feeling better and seems to be healing. Yesterday I sent you a PM with the link to Squirming's thread titled Interesting Reading on DH. She posted it here for you today. She kinda gathered all the relevant DH information in one place and it is very helpful to all of us! It takes some reading, but it is worth it!