Help -- Dh In My 8 Year Old Is Flaring Up Again

[Polly]

My 8 year old has been on a gluten-free diet since January. After 2 months of gluten-free diet, we had to put her back on gluten for a month to perform the endoscopy. During those first two months, her DH almost fully cleared, then did fully clear two weeks into the gluten month. After endoscopy, went back on gluten-free diet immediately, and of course, DH returned from the month of glutening (I forget the lag time from starting back on the gluten and return of the rash, maybe 3 weeks?)

Anyway, the rash started to clear, but never 100% like it had before. She had 1 or 2 small lesions left, then we went to Sea World on vacation in August, and were very careful with her diet, but when we got back her rash now had 5 or 6 angry lesions. Admittedly, we did eat out and could have been cc'd, even as careful as we were. Also, we were eating out of the van while we were at the park, so gluten could have made its way onto her lunch while people were handling her food next to the gluten-y bread.

We used coppertone sunscreen, which I've read is gluten-free.

Her rash has even gotten worse this week (10 - 15 angry looking lesions), when we all had upper respiratory infections and zithromycin (sp?). I did see in the archives that ibuprofin is a problem, which I probably gave her when she was sick. So, that's one reason she could be worse.

What else do I need to look out for? (This detective work for gluten seems to never end -- we've been at it a while now and everytime I think I have it figured out, there's something else I was missing. I'm getting a little discouraged -- esp. when me missing something means more pain for her.)

Any tips for hidden gluten and links to articles that haven't been mentioned in the archives would be great. Thanks!

[pricklypear1971]

It may be iodine.

Somehow iodine acts like water on a grease fire with DH.

I had to do low iodine for two weeks and let my DH heal, then started adding back iodine rich foods. It took about 3 months to add them all back without flare. Too much at Thanksgiving gave me a small flare, for example. Iodine is documented as a DH antagonist - I'm not an isolated incidence.

To learn more about a low iodine diet go here: Open Original Shared Link

Iodine is an essential nutrient but a short low iodine diet has not been shown to do harm, that ive found. There's a lot of iodine in the food chain so it isn't a "no iodine" diet.

I use Vanicream lotion on my DH. It is gluten-free and gentle. You need to baby DH. I used Tylenol as a pain reliever when I had DH and didn't notice a flare. Some people use Walgreen benzocaine ointment to help relieve skin pain from DH. I always used ice packs to stop itching and pain, worked well for me especially at night.

[rosetapper23]

Listen to pricklypear--it is most probably the iodine that is causing the flare-up and lack of healing. Your daughter probably ate quite a bit of iodine while on the trip, but if you are careful to eliminate iodine for a few weeks, she should be fine soon. Also, any time the immune system is impaired, DH can worsen. I'm currently going through chemo, and for the first week after my treatments, the blisters appear all over my face. Unfortunately, by the time they heal three weeks later, it's time for another chemo treatment. **sigh** So, hopefully, she'll start recovering soon, once she feels better and begins to avoid iodine.

[squirmingitch]

I found it interesting too that canned foods contain iodine from the cans themselves. I find that when I get iodined & the dh flares then the dh is going to go through it's cycle no matter what I do. The sores take time to heal & it doesn't seem that much can make that time any shorter.

Also, while you were on vacation & even being very careful that even if she didn't get cc'd at restaurants, many restaurants use iodized salt so she likely got a big OD of iodine.

Try the low iodine for a short time & then if things don't begin to improve come back & tell us. She may need to go low salicylate for a time but we'll cross that bridge when we come to it.

My husband has found relief too from using the CVS copycat of the pink Caladryl --- stops the itch for him. We also will use Benadryl Extra Strength itch stopping gel. Sort of rotate those things with a couple days of Vanicream to moisturize it back up & then back to the others; back & forth, back & forth.

Gentle hugs to your daughter & for you too.

[Polly]

Thank you everyone for the tips and points of view! I will try low iodine, although it sounds a bit complicated. I'll start by just switching out the salt -- that I can do. And I'll keep an eye out for the canned foods.

I will stick to tylenol now that I know ibuprofen is off the list.

Caladryl I have, I will try her with that. Thankfully, her rash is only in one area right now.

I did wonder if her sickness might have been an issue, with her immunity down.

Your encouragement and quick replies are amazing to me. Thank you so much for being such great sources of wisdom and information in what is such a daunting thing for those of us just starting out.

I'll update you later when things are better (hopefully soon!).

[pricklypear1971]

It's great to see a parent on here working on DH with their child.

Please read the thyca diet instructions. Iodized salt and canned food are the tip of the iceberg.

If this is her issue she needs more reduction than just those two things, probably.

DH can get bad. Very bad. Quickly. I wouldn't wish it on my worst enemy. It affects every second of your day and how you feel about yourself through others eyes, and your mental state. The pain can be horrible and trying to get through the day is awful. The pain and management of the rash symptoms can affect her school work and her social interaction.

Low iodine isn't THAT complicated, at least for a few weeks. And the relief is worth it if it works.

Even if the rash flared because of the virus, she may still need to go LI to get the rash to lay down. If the rash has crossed that line where gluten-free isn't enough, you have to deal with it in an effective way. Getting rid of gluten is unfortunately just PART of DH sometimes, especially in the first year.

I don't want to come off like a screaming shrew to a fellow parent - but I can not express how hideous and FAST DH can move. I don't want anyone to suffer through one of those big breakouts. It's horrible.

[squirmingitch]

I echo what Prickly said in this latest post Polly. Every single word.

Also, I didn't mention before something that I do which REALLY makes a difference in the lesions itching but I'm rarely able to do it b/c of the way dh so often presents in the grouping pattern. If/when I'm lucky enough to only have 1 or 2 lesions in a particular place then this works amazingly well. I put some pain relieving ointment on it or some neosporin or I believe you could even use Vaseline --- anything that's a goopy oil --- on the place & then cover it tight with a band aid. And I just leave it there for days & days --- through showers & everything. It will itch a few times for the first day or two & then STOP. As long as you keep that on there it doesn't itch. And in those 1st 2 days; the few times it does itch & you start to unconsciously scratch you encounter the band aid & it serves as a reminder & if it's in your sleep then if you scratch then the padding of the band aid protects it.

Now, I do not know why this works. But it does. I have my own theory that by cutting off the air & light it somehow stops it from itching. As I said, I can rarely do this b/c usually there are too many in an area than I'm able to cover that way without running into other ones & they don't make a band aid big enough for some of the areas I get.

[Polly]

Pricklypear,

You don't come off as someone screaming, I appreciate your candor. I didn't mean to come off as sounding casual about my approach. I feel like I am living and breathing this now that I have 3 of my 6 kiddos diagnosed with celiac/gluten issues. Only my 8 year old has the skin issues.

Thank you for being an advocate for her who knows what she is going through.

I will look into the iodine diet deeper.

[Polly]

Thank you for the extra tips, squirming itch. I'll look at the lesions tonight and see if we can try the band aid method on any of them.

[pricklypear1971]

Thank you for the extra tips, squirming itch. I'll look at the lesions tonight and see if we can try the band aid method on any of them.

I agree that compression does seem to work. I piled rolled towels under my arms and pressed down. My rash was too big too cover with a bandage. For me ice packs were a better bet because of location and size.

[pricklypear1971]

Pricklypear,

You don't come off as someone screaming, I appreciate your candor. I didn't mean to come off as sounding casual about my approach. I feel like I am living and breathing this now that I have 3 of my 6 kiddos diagnosed with celiac/gluten issues. Only my 8 year old has the skin issues.

Thank you for being an advocate for her who knows what she is going through.

I will look into the iodine diet deeper.

My hat is off to you, mama. Kids are tough and Celiac is a big one. I'll be jumping in the same boat with my son, soon, I fear.

Stopping DH is preferable to treating it. Trust me when I tell you YOUR life will be easier if you can stop DH now. I know the diet may be boring for a while (and I still gag at the thought of egg white omelets) but it is worth it.

[squirmingitch]

Here is a low iodine, low salicylate "white-ish" bread bun in a bowl recipe. This is my breakfast every morning. like Prickly I can't hack the egg white omelets. Shudder.

2 large egg whites

2 Tblsp. white rice flour (I use sweet wht. rice flour)

1 Tblsp. cashew flour

1 1/3 Tblsp. golden flax meal (you can use the dark flax meal it just makes it darker in color)

1/2 tsp. baking powder

1 tsp. sugar

shake of salt (just a titch)

Spray a custard dish with non stick spray --- mine is about 5" in dia. -- or oil it & wipe it pretty clean, only the tiniest film is needed. Crack the egg whites into dish & beat with fork, add all the other ingredients & stir till well mixed. Nuke it for 1 min. 30 sec. You may need to loosesn around edges with butter knife but usually not. I tump mine upside down on a butter knife sitting across a paper plate rim so it can all cool off for a minute or so. Cut it so you have two round slices. I toast them in the toaster oven. That's my breakfast every morning with cashew butter on one side & Lyle's Golden Syrup on the other side.

[Polly]

Thanks, you two, for the encouragement and recipes!

[pricklypear1971]

Btw, I don't know what you do for milk at your house but all but ONE milk replacement I found contained carageenan. There was one hemp milk that didn't.

So milk is the biggest hurdle, IMO. It was what I first added back, in little bits. You can cook with egg whites instead of whole eggs.

If she eats cereal she can try it dry...that's my advice short term; or make homemade rice or almond milk.

[ciamarie]

You've already gotten some great advice, but I thought I'd jump in and add my 5cents (inflation!). I believe doing the low iodine did help me, but I also discovered my DH was sensitive to MSG and sulfites. At the moment, that's just something to keep in mind, in case the other ideas don't help.

Another thought was to make sure that things like bath soap and shampoo are also gluten-free. That includes oat-y ingredients, since oats are generally cc'd with wheat.