Pre-outbreak Signs

[ElvisLives]

I was diagnosed with DH on September 1st, and I have been almost 100% gluten free since then. Still though, I continue to have small outbreaks (elbows, knees). A couple of questions:

1) Sometimes, just before an outbreak, I have a tingling, shooting sensation in my arms and/or legs. Is this typical?

2) This week, it dawned me that I might have ingested gluten via creamed corn and/or a chopped steak (both purchased at a local cafeteria). I now have a small outbreak. Would you relate this outbreak to my ingestion of gluten or the fact that I have been gluten free for only 6 weeks?

Thanks for any help!

[momxyz]

I'll answer number two.....

my experience is probably, both factors are at play. Yes, a fresh crop will occur for me if I ingest gluten. But also, I have had minor outbreaks when I have been reallly careful. These have tended to be much less severe, quicker to heal, and much less frequent the longer I stay gluten free.

[ang1e0251]

I don't have breakouts unless I'm glutened. When I was healing, I don't remember having new lesions unless glutened. I don't recall any foreshadowing of a breakout like you described.

[ElvisLives]

Thanks for your responses! It is difficult to ferret out causation and other factors as concerns DH.

[Laurelf]

Yes, a fresh crop will occur for me if I ingest gluten. But also, I have had minor outbreaks when I have been reallly careful. These have tended to be much less severe, quicker to heal, and much less frequent the longer I stay gluten free.

[ChemistMama]

How soon after you eat gluten do the outbreaks occur? I accidentally had gluten Thursday for lunch and I got the outbreak Friday afternoon. Is it typical to take a day before it happens? thanks

I had to try to do a gluten challenge (YUK!) and I had a reaction to the gluten almost 36 hours after I had ingested the gluten, so your timing isn't unreasonable.

[trishydee]

I think I get a "warning sign" like you. My mouth and nose (well, just at my nostrils) BURN like crazy! That's how I know I've been accidentally glutened. And I do get a burning sensation around the place where the blisters pop up, but about a day or so before they arrive. Fun, huh?

[Lisa16]

Yes, I used to get the same tingling/shooting sensation you describe. The good news is that my DH is gone-- I have not had it in well over a year (will be gluten-free 2 years in December.) I would get the lesions within a couple of hourse of being glutened.

Now I think I would have to eat something with major gluten (like a slice of bread) to get an outbreak.

Good luck.

[ElvisLives]

Thanks to everybody that responded!! I continue to "aspire" to be gluten free but have accidentally missed the mark a couple of times.

I am similar to those of you that get a warning (tingling, etc.) if I have consumed gluten.

I also have noticed that, along with the blisters (typically on my knees and elbows), I get red rashes that itch and burn on my arms and legs but not at the elbows or knees. These rashes are more widespread and do not have blisters.

Thanks again!