Questions About Lag Time

[itchy]

Hi folks,

I'm looking for some advice from people with experience with DH.

I self diagnosed DH a year ago from symptoms, and had a dematologist confirm my suspicions without any testing.

I was already about 98% wheat free, and when I went the extra mile and went 100% gluten free my intestinal symptoms disappeared immediately, and the very bad DH rash on my arms and legs started to get better.

It was on a plane of improvement for most of the year, but in the past couple of months it's gotten worse again, with extreme redness, stinging and pain (though still much better that a year ago).

So, if any of you have opinions on the following questions, I would be grateful.

1. What's the typical lag time between consuming gluten and getting DH symptoms? Is there any way to tie a relapse to a particular time or event where one might have consumed gluten accidentally?

2. Does anyone actually become symptom free from DH? (They probably wont' be hanging around here, though).

Thanks

2.

[Hopeful1950]

With a strict gluten-free diet the rash should eventually get much better. It can take up to two years to really see lasting remission, but some people see relief in less time. The antibodies remain in your skin for up to 10 years, so flares can happen unexpectedly for a long time, but they should get less and less intense. It all depends on the person. Be sure to avoid iodine (in salt, sea salt, vitamins, shellfish) as it can activate the antibodies in your skin.

[Hopeful1950]

Oh, so sorry...regarding lag time: For me it is somewhere between 32 and 48 hours so sometimes it is hard for me to figure out where I got exposed to gluten. When I have eaten something with iodized salt (or iodine) the reaction is much sooner.

[rosetapper23]

Ditto on the iodine--remove it entirely until your DH is under control. It's in high quantities in some dairy (depends on the brand and location, so organic is best) and asparagus.

As for lag time, for me it's usually within an hour of having been glutened. Sometimes it happens in only 30 minutes, but it has never taken longer than a few hours. I think this is an individual thing, and everyone's reaction time may differ.

[eatmeat4good]

Iodine in dairy products?

How would one know? Does it have to be listed? I'm so confused.

Also, some people say you can eat sea salt or salt that is not iodized- Is that not the case Rosetapper23?

That would mean all products with salt in the label would have to be avoided.

I really want my rash gone, I hope you will clarify this.

If the antibodies stay in the skin for 10 years, does that mean you really have to avoid salt just as seriously as gluten for 10 years. Every salt ingestion could make one react? I'm only 3 months into this, so I can't help the OP, but please help with iodine and salt issue.

No salt whatsoever? I was using uniodized.

[ravenwoodglass]

If the antibodies stay in the skin for 10 years, does that mean you really have to avoid salt just as seriously as gluten for 10 years. Every salt ingestion could make one react? I'm only 3 months into this, so I can't help the OP, but please help with iodine and salt issue.

No salt whatsoever? I was using uniodized.

I have never heard about iodine in dairy products or that the antibodies stay for 10 years. I have always heard it is 2 years.

I had severe DH and used sea salt and uniodized for the first couple years gluten-free and also avoided it in supplements. I also didn't avoid salted products like the salt in canned veggies etc. I then added back iodized salt and have had no issues.

As far as the time it takes to flare. When I was first diagnosed I would kow within a couple of hours if I had gotten gluten as a new lesion would appear. However after a year or so there was a lag time between getting glutened and the appearance of a DH lesion. While it used to be one of the first signs it is now the last. Now that the antibodies have left my skin it takes about a week for them to build up and for a lesion to appear. Even then the lesion is now usually just one tiny little blister that heals pretty quickly.

[itchy]

Thanks much for the replies. After the initial blistering stopped many months ago I rarely get any blistering. But the sores have worsened recently and come and go with intense stinging, and are bright red, and refuse to heal over with healthy skin. Aspirin is quite effective against the stinging, but has no apparent effect on the sores.

I can't detect any corelation with specific events where I might have inadvertently consumed gluten, so is it possible that this all relates to things happening in my body rather than being related to gluten consumption?

I will definitely cut out iodine.

But what is the risk of health problems from iodine deficiency?

[momxyz]

As far as the time it takes to flare. When I was first diagnosed I would kow within a couple of hours if I had gotten gluten as a new lesion would appear. However after a year or so there was a lag time between getting glutened and the appearance of a DH lesion. While it used to be one of the first signs it is now the last. Now that the antibodies have left my skin it takes about a week for them to build up and for a lesion to appear. Even then the lesion is now usually just one tiny little blister that heals pretty quickly.

thanks for this post. Explains a lot of what I experienced lately, as I queried in another post. After previous "glutenings" exacerbation of the rash - my primary presenting symptom - was what I noticed first. 16 months out, this is no longer the case - to hear that new skin lesions are now one of your last signs corroborates both my recent experience, and affirms the rightness of my decision to adopt the gluten-free lifestyle (in the absence of a formal diagnosis.)

[rosetapper23]

I should clarify--DH only occurs when BOTH iodine and gluten are ingested. Since cross-contamination is very common when a person first begins eating gluten free, I usually recommend that iodine also be avoided. However, if you find that too difficult, you can just concentrate on just removing gluten from your diet. That said, since you mentioned salt in processed foods, this is an opportunity to address contamination directly. When you first go gluten free, I know it's difficult to give up processed foods, but it's safer to stick with natural foods at first. Then you don't have to worry what a food contains.

As for iodine in dairy, I should clarify that it only seems to be in dairy foods to the West of the Rockies and in Canada. About 20 years ago, Canada declared that their milk was too contaminated with iodine for children to safely drink. How this happened is that the U.S. government conducted nuclear tests in Utah during the 50s. Although the irradiated iodine they used lost its radiation, the iodine became permanently embedded in the soil in the Western United States. The cows that eat the weeds and grasses in that area ingest iodine regularly; also dairy farmers oftentimes use iodine to wash cows' udders--this is how iodine can get into dairy products. I experienced my first DH outbreak after moving to a new region in California and read four years later (after suffering terribly all during that time) that iodine in dairy is oftentimes overlooked. By giving up dairy foods, my DH resolved without even going gluten free. I didn't learn that I had celiac until 20 years later; however, avoiding iodine resolved my DH. Now, I have Hashimoto's thyroiditis and must take meds daily that contain iodine, but I'm now gluten free, so I no longer react to the iodine. For me, it is the combination of both iodine and gluten that causes the DH.

[eatmeat4good]

Wow, that is very interesting. Thank you for the information.