Suspected Dh, Is It Worth Going To Doc Or Just Wait It Out

[Christine0125]

I was diagnosed with celiac disease via bloodtest in Feb and biopsy in April. I've been 100% gluten free since April. I never had any skin reactions but a few weeks ago when I was on vacation I got bumps on my legs that looked like bug bites (red inflamed but crater like center). A few would appear each day and it capped out at about 15 or so bumps isolated to my legs. Since we were leaving on a cruise in a few days I went to a walk-in clinic and the doc said it looked like bug bites since they had a hard center even though I told her it was presenting itself as a rash since it started small and then grew larger. She said it wasn't shingles since it was on both legs and shingles apparantly would only affect 1 side. Looking at some of the pics I think it's likely to be DH. We were eating out frequently and at family members houses so there is big possibility I accidentally ingested gluten in this time. The doc prescribed triamcinolone cream and an antibiotic (since a couple of them were rather inflamed) and sent me on my way. The cream helps some with the itching but doesn't seem to aid in the healing at all. Fast forward to today... on Saturday night we went to a birthday dinner for a friend. I had no idea it was going to be a set meal pre-ordered. I asked some questions to the waiter and ate what looked to be safe on the plate knowing that I was risking it a bit. Anyway... the bumps started coming back yesterday. Gluten? Is it worth going to my doc now that I'm home and getting something that might really work or is it better to just let it run it's course. No more eating out for me until this clears! Has anyone had anything similar and if so how long does it take to go away?

[squirmingitch]

Blimey! I would bet cash money dh is it! Okay, no point in going to the doc since you're already dx'd celiac. It's dh. There is no treatment for dh except the same treatment as for celiac ----- gluten free STRICT! There is a drug that will stop the itch, burn, sting & stop the rash from presenting but it does not "cure" dh; it just makes it so it doesn't pester you --- sort of like making it invisible. Problem with it is --- it can make you anemic among other things. I consider it (my opinion but shared by many here with dh) far too dangerous a drug. But that's up to you. It's called Dapsone. Google it & read & learn about it before you jump on the Dapsone wagon please. The other problem with taking Dapsone is b/c it masks dh then you won't have a gauge of your gluten exposure so you may be happily tripping along through life getting glutened many times & not knowing it & that's dangerous b/c if you don't know it then you won't be able to fix it & eliminate the exposure. You see?

Now, since dh is presenting for you I'm going to warn you that you need to be extra, extra careful b/c once dh rears it's ugly head it only gets worse each time it happens & believe me --- you don't EVEN want to go there!

DON'T scratch it! Rub around it, scratch around it but do your darndest not to scratch it! Antibiotics will not help it. Steroids (oral) will help but be advised that when you go off them it will rebound on you like rip! So IMHO that's not the way to go. DH is a b%$@# - period.

Okay, things that help with the burning, itching, stinging --- witch hazel, Vanicream, pink Caladryl, Walgreen's pain relieving ointment or cream (20% benzocaine) & if you can't find that then get some Orajel (same 20% benzocaine), ice packs, benadryl itch stopping gel. Read threads on this dh forum for other tips.

How long will it last? Boy, if I could answer that I could get rich really quick. Every person is an individual & every dh is an individual so to speak. It depends on you, the stage & severity YOUR dh is at at any given point in time. It can last anywhere from a day to weeks to months to ?????

Try limiting your iodine intake. To quote rosetapper, "Gluten lights the fire of dh, iodine keeps the fire burning". She put it so succinctly! Here's a link:

Open Original Shared Link

I will venture that 90% of us get results/relief from going low iodine for a while. It is medically known that there is a correlation with dh & iodine making it flare -- iodine is sort of like the catalyst.

Ask if you need more help or have questions. Read on the dh forum here; it will explain a lot.

And most of all I wish you a speedy healing!

[eatmeat4good]

Mine took a year and a half to clear up.

Gluten free and iodine limiting...but it worked.

Most of my rashes looked exactly like mosquito bites.

Could never figure out why I got mosquito bites in the winter and no one else did.

Dr. said spider bites, acne, fungus, virus, bacteria, and then neurotic excoriation.

If this is DH and you avoid gluten it should heal. Some need to limit iodine.

DH is very, very, sensitive to traces of gluten.

You will have to be very very careful.

But your description of the sores is just like mine...little bites, intense itching...until 8 years later they were open weeping sores that would not heal ever.

Then I realized it was gluten.

Year and a half later....I'm free of lesions entirely.

I wouldn't bother with a dr.

If you get strict with avoiding gluten it should clear up.

It's maddening though while it is active.

[LindsayS]

That is exactly how my DH presents. Both legs, itchy bumps. Before I figured out it was gluten, both legs were covered with what I would refered to as hives. Now that I am gluten-free, I still have small red bumps that will appear on my thighs but they don't bother me like the previous outbreaks that extended the length on my legs. Maybe since going gluten-free, you are extra sensitive to small amounts and it is presenting as DH?

Also, every time I read a description of DH, it never really mentions legs. So I am not sure if this is perhaps an uncommon place for DH?

[squirmingitch]

If you go to the dh photo bank & view my photos you will see the scars all over the back of my legs. DH can & does present anywhere on the body. I've had it in my scalp, in the curves of my ears, inside my belly button, armpits, on my nipples, arms, neck, entire torso including butt, legs, feet, hands. The only place I have not had it is on the bottom of my feet but someone here says they get it as well as their son on the bottom of one foot.

[Christine0125]

Thank you both! I am able to keep the itching somewhat under control with cortisone cream. I think this was my lesson not to take any risks with unknown food items... now that I'm home it's much easier to be strict with my diet.

[squirmingitch]

Thank you both! I am able to keep the itching somewhat under control with cortisone cream. I think this was my lesson not to take any risks with unknown food items... now that I'm home it's much easier to be strict with my diet.

Yes, that's the thing Christine; any cc is hurting you, the dh is a problem but the "hidden" damage inside in your gut is the one that has such dire consequences. The dh is a sure fire method to make us be extremely strict & cautious with our diet. One doesn't soon forget a dh lesson.

Also, I'm just speculating here on this but it would seem to me that since you have dh presenting then from now on you may not get the GI symptoms from a glutening like you used to or they may be much reduced in severity & length but instead you will get dh. ????

I base this reasoning on the fact that most celiacs who have dh in the first place tend to not have nearly as much GI symptoms or have no GI symptoms at all. I did not have many GI symptoms (well, that is other than when I was a kid to teen yrs.).

[Christine0125]

Also, I'm just speculating here on this but it would seem to me that since you have dh presenting then from now on you may not get the GI symptoms from a glutening like you used to or they may be much reduced in severity & length but instead you will get dh. ????

I base this reasoning on the fact that most celiacs who have dh in the first place tend to not have nearly as much GI symptoms or have no GI symptoms at all. I did not have many GI symptoms (well, that is other than when I was a kid to teen yrs.).

No noticable GI symptoms lately. Your theory seems to fit my situation!