How Tiny Can Dh Be?

[lizk]

I have just the tiniest bumps and they are not clusters but they itch like crazy! I have been gluten-free for about 3 months because I was having stomach issues (itching too, but at the time I didn't connect it to gluten). They are tiny, like pinpoint tiny but right now I have one on each shin, two or three on each thigh, and one on each side of my stomach! Oh, and one random one on my arm.

Can they be that tiny? And can there just be one? The other night my legs were itching so bad I seriously couldn't sleep - two rounds of lotion and no relief so I finally took two benadryl which seemed to work. Not sure if it stopped the itching or just knocked me out If it's not DH I have no idea what it is. I know they are not bug bites.

I am so frustrated because I know I can't get a diagnosis now because I'm gluten-free and I didn't think I cared about a formal diagnosis but now I think I do! Only because I would like to be sure it isn't something else and also to know how careful I have to be.

[pricklypear1971]

They can be tiny. They do itch like a sob.

If benadryl helps - to the point they disappear, you may be dealing with an allergy. On the other hand, the benadryl may suppress your immune system just enough to toss it into remission.

You can try to get them biopsied. Get to a derm that knows how to do it ASAP. The longer you go gluten-free, the less antibodies in your skin but there may be enough there.

Ice packs help stop the itching, and i like Vanicream lotion.

I hope it improves soon.

[lizk]

They can be tiny. They do itch like a sob.

If benadryl helps - to the point they disappear, you may be dealing with an allergy. On the other hand, the benadryl may suppress your immune system just enough to toss it into remission.

You can try to get them biopsied. Get to a derm that knows how to do it ASAP. The longer you go gluten-free, the less antibodies in your skin but there may be enough there.

Ice packs help stop the itching, and i like Vanicream lotion.

I hope it improves soon.

Thanks for your reply! The benadryl didn't make the bumps disappear at all, just seemed to temporarily stop the itching. They still itched the next day and I got another bumps on my arm the next day and one more this morning I knew about the iodine connection but have just read on here about salicylates! I eat a lot of foods with those and will check that out. Thanks for the recommendation about ice and Vanicream - I've never heard of it so I will check to see if our local drugstore has it.

[itchy]

I can't offer much.

If you've been reading old messages you will know that your rash isn't typical, but is within the range of skin issues that seem to be related to coeliac disease. And you are up against the conundrum that most face at one time or another, whether to endure a bout of gluten consumption to get tests done that may or may not be definitive.

My hunch would be that it is DH, given your gastrointestinal issues and intense itching. Are the bumps also associated with bright red or purplish areas of inflammation around each one? Have you checked them against photos online?

When my DH was worst the intense burning/pain was mostly confined to early evening and early morning, which is also something many report. But as the DH abated it began to itch all day.

Perhaps think of it this way. If your GI issues are coeliac disease you will have to be gluten free for life anyway, so knowing whether your skin issue are DH may not be that important.

[lizk]

Thanks for your reply!

They are usually red around them but maybe that is from scratching. And the old ones are purplish (pink/purple/brown??) sort of scar looking spots - all over my legs

It is definitely worse at night. Sometimes itchy during the day, but not ever as bad as the nighttime.

Good point about gluten-free for life. I think I just wish I had gotten tested before going gluten-free because I could be overlooking some other condition thinking it is celiac. I know for sure though that almost all of my gastro symptoms resolved after going gluten-free.

[squirmingitch]

It sure sounds like early dh & celiac to me. Do you ever take naps? I find mine also itches almost as bad during naps as it does at night. In fact, if I get prone --- naps, bedtime, OR laying prone on sofa with just head propped on pillow for say 2 hrs. watching TV then I tend to get new bumps & blisters. I think there's some connection to being in the prone position. I've even wondered if it's possible to sleep standing up! It would be an experiment for sure!

Try getting rid of soy also & see if your gastro symptoms don't totally resolve. And remember that it takes time for your gut to heal so everything may not happen like magic overnight. But dh is going to take time ---- sorry --- sigh ---- I'm still itching --- but not as bad as I was that's for sure!

[lizk]

It sure sounds like early dh & celiac to me. Do you ever take naps? I find mine also itches almost as bad during naps as it does at night. In fact, if I get prone --- naps, bedtime, OR laying prone on sofa with just head propped on pillow for say 2 hrs. watching TV then I tend to get new bumps & blisters. I think there's some connection to being in the prone position. I've even wondered if it's possible to sleep standing up! It would be an experiment for sure!

Try getting rid of soy also & see if your gastro symptoms don't totally resolve. And remember that it takes time for your gut to heal so everything may not happen like magic overnight. But dh is going to take time ---- sorry --- sigh ---- I'm still itching --- but not as bad as I was that's for sure!

Thanks for your response! Sorry you are still itching but glad to hear it has improved and hope the progress continues. That is so interesting about lying down...can't say that I have noticed it but now that I think about it I really only lie down at bedtime. I usually watch tv either sitting in a chair or on the floor and don't really take naps except occasionally on weekends.

I am so frustrated right now about my symptoms...even more so because I went to a GI yesterday and she basically told me nothing. I showed her a couple of the bumps I had and she said "doesn't look like DH." Really the only gastro symptoms I have left (and I haven't looked at soy so I will do that but I don't think there is much in my diet) are just what I think are not "normal" stools. They are just soft, not really loose (sorry for the TMI) but also sometimes undigested food. I used to have bad bloating but that has all gone away since going gluten-free. I just wanted to see a doctor because I thought something is still not right. I told her all this and she said "hmm, maybe try some Metamucil." She had no answers for the bumps. Take some benadryl, she said. Fine, but what ARE they? As a doctor, doesn't she care?? Something should not be so itchy it keeps you up at night, that is just not normal. Ugh, I am just frustrated.

Thank you all for your replies

[pricklypear1971]

Thanks for your response! Sorry you are still itching but glad to hear it has improved and hope the progress continues. That is so interesting about lying down...can't say that I have noticed it but now that I think about it I really only lie down at bedtime. I usually watch tv either sitting in a chair or on the floor and don't really take naps except occasionally on weekends.

I am so frustrated right now about my symptoms...even more so because I went to a GI yesterday and she basically told me nothing. I showed her a couple of the bumps I had and she said "doesn't look like DH." Really the only gastro symptoms I have left (and I haven't looked at soy so I will do that but I don't think there is much in my diet) are just what I think are not "normal" stools. They are just soft, not really loose (sorry for the TMI) but also sometimes undigested food. I used to have bad bloating but that has all gone away since going gluten-free. I just wanted to see a doctor because I thought something is still not right. I told her all this and she said "hmm, maybe try some Metamucil." She had no answers for the bumps. Take some benadryl, she said. Fine, but what ARE they? As a doctor, doesn't she care?? Something should not be so itchy it keeps you up at night, that is just not normal. Ugh, I am just frustrated.

Thank you all for your replies

You won't get skin relief from a gastro. Sorry.

You MIGHT get it from a derm, if you get one who has dealt with dh before. Mine has, but it didn't look like it to him...if he would have seen it after it came back without steroids slathered on it he wouldn't have doubted it. It's just one of those things. He definitely wanted to biopsy it after I talked with him (yes, he calls patients!) and told him what happened going gluten-free and low iodine. He also told me not to gluten myself to try to biopsy it because he knew how out of control it could get, and he couldn't do a thing to stop it without sending me into some f'ed-up adrenal hell (steroids), and goodness knows what dapsone would have done (I would have grown a second head?).

It can take a while, after gluten-free, for both the gastro and skin to settle down. Don't assume there's more to it than that (although there's probably something). Another issue will probably show itself clearly when you cut all gluten for a good while - for some reason the 5-6 month mark seems to be significant. Some days I think going gluten-free is like slicing open what appears to be a small bleeding gash, only to discover a nicked artery underneath.

[lovegrov]

Doesn't sound anything at all like the DH I had, except the itching. But then this is the problem with trying to diagnose over the Internet.

richard