[carrielynn]

Hi Everyone,

I guess I need some reassurance here. Our 5 year old son was diagnosed with celiac about 6 weeks ago and we removed gluten and dairy and eggs from his diet. We've noticed a change in his mood... he seems to be more energetic and less moody. He's happier. But his skin still looks awful.

I should say that his skin did improve in the sense that the little sores have gone away. So that's good. But he still scratches constantly and that tears up his skin, so he's bleeding all the time. His skin is DRY-DRY-DRY and red and inflamed all over his arms and legs.

We have been as vigilant as we know how to be. We make most of his food from scratch and I read labels diligently on all products. If he's getting accidental exposure then it's got to be miniscule. Our other son has a peanut allergy, so we're used to read labels and providing alternative treats. We have not slacked off.

Does it just take a long time for the skin to heal? I am so tired of people comment on how bad he looks. We have been working so hard to keep gluten out of his diet that it would be nice if we saw more results.

Thanks,

Carrie

[frenchiemama]

I would say that it took at least 8 weeks for me to start seeing improvement. But if I had any gluten it would be several weeks of breaking out.

[nettiebeads]

carrielynn, on Aug 28 2005, 01:26 PM, said:

Hi Everyone,

I guess I need some reassurance here.  Our 5 year old son was diagnosed with celiac about 6 weeks ago and we removed gluten and dairy and eggs from his diet.  We've noticed a change in his mood... he seems to be more energetic and less moody.  He's happier.  But his skin still looks awful.

I should say that his skin did improve in the sense that the little sores have gone away.  So that's good.  But he still scratches constantly and that tears up his skin, so he's bleeding all the time.  His skin is DRY-DRY-DRY and red and inflamed all over his arms and legs.

We have been as vigilant as we know how to be.  We make most of his food from scratch and I read labels diligently on all products.  If he's getting accidental exposure then it's got to be miniscule.  Our other son has a peanut allergy, so we're used to read labels and providing alternative treats.  We have not slacked off.

Does it just take a long time for the skin to heal?  I am so tired of people comment on how bad he looks.  We have been working so hard to keep gluten out of his diet that it would be nice if we saw more results.

Thanks,

Carrie

<{POST_SNAPBACK}>

How long was he sick before going gluten-free? Even miniscule amounts can trigger full bore reactions. And it takes time. poor little guy. Have you asked your pediatrician if a low dose antihistime might help? Something to take the edge off while he's healing, since the skin can be itchy while it's healing even though the dh itself has cleared up, or maybe the dh masked another allergy.

[JoeB]

Before I was diagnosed with celiac disease, I itched from head to toe every day and got outbreaks on my shoulders, elbows, etc. I found that using plain aloe gave me about 10 hours relief. Considering the age of your son, that may work a little better than giving him antishistamines.

[carrielynn]

We have tried lots of things to deal with the itching. You all should see our medicine cabinet. It's maddening and heartbreaking to watch him scratch.

We just got back from a pool party and he scratched the entire time. There were a lot of well-meaning (and very clueless about celiac) people there offering advice, but I frankly didn't want to talk about his situation with everyone the entire time. He scratches all the time anyway, so it's not like he just started at this pool party. I'm tired of not being able to take my child to a party and then have to spend a lot of time explaining why everyone's suggestions won't magically fix everything. ("Well, have you tried this?" "Why don't you give him that?") I know they mean well, but the way many people act, it's like my husband and I are abusing our child and they are going to help us out. We are doing everything we can. We have taken him to many doctors. We have tried every single product out there. I am tired of telling people this. I am tired of telling them we have spent thousands of dollars of our own money to figure out what is going on.

To make things worse, my other child picked up a cat and had a full-blown reaction in front of everyone. Of course he had to scream about it at the top of his lungs. Poor guy. But we can't get a break at all... I watch all these other people take their kids to parties and the kids run off and the parents barely know what they are doing... all the while I'm explaining and defending about my kids' scratching and reacting. (And my husband is running to the car for benedryl and we end up spending the entire time dealing with our kids.)

Sorry about the venting. I'm just exhausted from it all and I wish my kids could get some relief.

--Carrie

[lovegrov]

If your son actually has DH, it can possibly take months for that to completely clear and longer if he gets gluten. Everybody is different, though. My DH cleared almost immediately.

richard

[carrielynn]

nettiebeads, on Aug 28 2005, 05:22 PM, said:

How long was he sick before going gluten-free?  Even miniscule amounts can trigger full bore reactions.  And it takes time.  poor little guy.  Have you asked your pediatrician if a low dose antihistime might help?  Something to take the edge off while he's healing, since the skin can be itchy while it's healing even though the dh itself has cleared up, or maybe the dh masked another allergy.

<{POST_SNAPBACK}>

We've currently got him on benedry. We've tried Zyrtec, Claritan and Allegra and it seems like they don't help as much as benedryl does.

We also spent a ton of money (not covered by insurance) on extensive IGG and IGE allergy testing and discovered he's allergic to all dairy, eggs, beef, lamb pineapple, blueberry and grapes. We have removed all of this, and gluten from his diet. We eat at home most of the time now and he eats really simple things.

It seems like his skin has gotten worse since the elm and ragweed pollens have been showing up in our area. We've been thinking that he's hypersensitive to the pollens because of his skin problems... perhaps when his skin heals more he won't be so sensitive to the pollens? (Anyone have thoughts about this?)

It's just exhausting and overwhelming. And he's just started school and I'm having to impress upon the teacher the importance of him not eating gluten ("What's that?"). Even the school nurse wasn't quite sure what this was all about, which is very frustrating. We feel very alone in this struggle.

--Carrie

[frenchiemama]

Antihistamines never worked for my DH. Now I'm taking 500mg of Tetracycline and 500mg of B3 twice a day and it's keeping my DH in check, even when I have gluten. Also be aware that sunlight and iodine can worsen the rash.

[carrielynn]

frenchiemama, on Aug 28 2005, 09:13 PM, said:

Antihistamines never worked for my DH. Now I'm taking 500mg of Tetracycline and 500mg of B3 twice a day and it's keeping my DH in check, even when I have gluten. Also be aware that sunlight and iodine can worsen the rash.

<{POST_SNAPBACK}>

Is the tetracycline something you take constantly? I'm not sure I want to put him on that. Will his itching subside eventually the longer he's off of gluten? Or are we going to have to deal with this even after being gluten free for a long time?

Regarding the sunlight, I don't know what to do about that. He's in school and they have recess and I don't want to pull him out of that on top of everything else. The doctor never mentioned sunlight being something we had to worry about, so I have to confess ignorance about this.

--Carrie

[frenchiemama]

Yes, it's something that I take all the time. Eventually I'm hoping that I won't need it anymore, but in the mean time I break out for several weeks with even the slightest gluten accident and this is the only thing that has been really working for me.

Make sure you put a high spf sunscreen on him every time he goes outside.

[frenchiemama]

Other people's experiences with heat/sunlight:

http://www.glutenfre...?showtopic=1055

[carrielynn]

frenchiemama, on Aug 29 2005, 09:57 AM, said:

Other people's experiences with heat/sunlight:

http://www.glutenfre...?showtopic=1055

<{POST_SNAPBACK}>

Thanks!

--Carrie

[polishprincess]

I remained gluten free for several years, and still suffered bad itching. My rash has been aggressive on my hands for most of the disease. At diagnosis my hands were affected, as well as bilateral spots on my back and one on the very top of my forehead in the scalp. Upon gluten free the back and forehead cleared up within 6 weeks. My hands have remained afflicted for 3+ years. recently, I read an article in my newspaper weekender magazine (Cleveland Plain Dealer). The article was about a little boy with horrible eczema. He went to a Colorado hospital for treatment. Once the eczema cleared they treated the rest of the skin for bacterial and fungal infections. I recently saw my GP and asked if I had a fungal infection on my hands. The itching is mainly on the sides of the fingers. Well guess what, I have a fungal infection on my hands...basically athlete's foot on the hand. I have been using over the counter cream for a week, and should be clear in another week. The relief was instantaneous and over night! My hands have never looked as good. If I forget a dose, the itch is right back with the bleeding pussing and peeling. I hope this helps.

As for being treated for infected skin, I was at my doctor to get antibiotics for a sinus infection so it would do double duty. Good Luck. Congratulations on going gluten free with your son. You are doing him a great favor for life!

[oakpoint9]

Can you tell us what the OTC cream is that you use for you hands?
Both of my middle fingersand ears have been giving me trouble for several months.
I am putting Aquaphor on the spots 6-10 times a day, relives the pain and itch but it is not healing.
My skin is so dry after an outbreak. The itching is almost as intense as an outbreak itch. Cetaphil cream is the only one that helps.
My neice, in pharmancy school, made me a gel from hydocortisone cream and benadryl cream. It really works for a break out itch, it take the needle pain away and speeds up the rash healing.
thanks

polishprincess, on Sep 7 2005, 08:33 AM, said:

I remained gluten free for several years, and still suffered bad itching.  My rash has been aggressive on my hands for most of the disease.  At diagnosis my hands were affected, as well as bilateral spots on my back and one on the very top of my forehead in the scalp.  Upon gluten free the back and forehead cleared up within 6 weeks.  My hands have remained afflicted for 3+ years.  recently,  I read an article in my newspaper weekender magazine (Cleveland Plain Dealer).  The article was about a little boy with horrible eczema.  He went to a Colorado hospital for treatment.  Once the eczema cleared they treated the rest of the skin for bacterial and fungal infections.  I recently saw my GP and asked if I had a fungal infection on my hands.  The itching is mainly on the sides of the fingers.  Well guess what, I have a fungal infection on my hands...basically athlete's foot on the hand.  I have been using over the counter cream for a week, and should be clear in another week.  The relief was instantaneous and over night!  My hands have never looked as good.  If I forget a dose, the itch is right back with the bleeding pussing and peeling.  I hope this helps. 

As for being treated for infected skin, I was at my doctor to get antibiotics for a sinus infection so it would do double duty.  Good Luck.  Congratulations on going gluten free with your son.  You are doing him a great favor for life!

<{POST_SNAPBACK}>

[polishprincess]

The doctor diagnosed it as a fungal infection. I am treating the rash with antifungal cream. I bought the store brand (tocopheral may have been the active ingredient", then got a coupon for Lamisil brand name and bought that. Basically you just buy the athlete's foot medicine. I used the powder first and switched to the cream this time. The lamasil should work in two weeks per directions, where the store brand took four weeks per directions. Doctor can also prescribe oral antifungal...the creepy comercial with the little cartoon dermadaphyte under the toenail...if the fungus needs to be treated aggresively.

The reason I read is that because our skin is weak, it is prone susceptible to the fungal infection. We can get it anywhere we have the open sores or poor skin quality. Mine happens to be the worst on my hands. My mother has an aggressive spot on her ankle. My sister has one on her leg and arm. My other sister has it on the top of her foot.