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pearl_lake

First vs Later Outbreaks

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I was lucky enough (if that’s the right word, not sure I think of myself as super “lucky” at the moment) to get a positive DH diagnosis during my first outbreak. Considering so many of you looked for answers for years, I do count myself thankful in this regard. I only broke out on my knees and elbows, and it was completely cleared with topical Clobetasol after 3 days (RXed before the biopsy results were back). I’m allergic to sulfa, so Dapsone is out anyway. 

 

Anyway, my question is this. After going gluten free, if you get accidentally glutened or cc’d, does your rash typically come back in the same place, or do you find it shows up in different places? Was your first outbreak less severe than subsequent ones? I’m thinking of food allergies, first reactions tend to be less severe, but they can escalate with later exposures. Would love to know how your first exposure compared to later ones. Trying to prepare myself for the inevitability of getting cc’d at a restaurant or something. Thanks!

Edited by pearl_lake

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Even too much of a processed, gluten-free food, such as cookies, made the itch come back. But not the rash. I only had very small amounts of cc the first year or two going gluten-free, so the itch was the extent of it. You certainly may have a different experience. Good luck! And make sure to read the newbie info we have to set up your kitchen, what to eat at first, etc.

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Hi Pearl_Lake :)

11 hours ago, pearl_lake said:

Anyway, my question is this. After going gluten free, if you get accidentally glutened or cc’d, does your rash typically come back in the same place, or do you find it shows up in different places?

I'm not diagnosed celiac. Gluten did affect my skin but not in a DH way. However about a year to 18 months after going gluten free I made an error in a food choice and I got symettrical and ultra itchy rash on my elbows which does fit the description. Point being, I never got that when I was eating gluten all day long, but my reactions had clearly changed in the time on the diet. This change over time appears to be common amongst celiacs and NCGS alike. 

This btw:

4 hours ago, Victoria1234 said:

Even too much of a processed, gluten-free food, such as cookies, made the itch come back.

was something which it took me awhile to recognise. I still don't know why it's the case, is it a cumulative effect from the very small amounts of gluten in gluten free processed foods? Or maybe there's something in the way they're formed that triggers the antibodies regardless of the gluten content? Whichever, I came to realise that there were limits to how much gluten-free processed foods I could have.  I still get the itchy scalp, but then I do like cookies... :(

 

 

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9 minutes ago, Jmg said:

is it a cumulative effect from the very small amounts of gluten in gluten free processed foods?

This is my theory. I very rarely eat foods like this anymore!

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5 minutes ago, Victoria1234 said:

This is my theory. I very rarely eat foods like this anymore!

:(

Do you think it's micro amounts of gluten or do our bodies simply associate cookies/bread/baked stuff etc. with the gluten whether it's there or not?

 

This is what Jane Anderson says:

https://www.verywell.com/symptoms-continue-eating-gluten-free-562740

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48 minutes ago, Jmg said:

Do you think it's micro amounts of gluten

Oh, I totally think it's the micro amounts that add up. I am TERRIBLE when it comes to sweets. So if I had a package of cookies, I probably ate a whole row of them- like 5 or 6 cookies- at a time. So a little bit adds up to be a lot. But if my husband made me a birthday cake and I had a (big) slice, nothing would happen. The baked goods he makes me occasionally do not effect me poorly. But pre packaged, processed gluten-free foods sure do.

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2 hours ago, Jmg said:

:(

Do you think it's micro amounts of gluten or do our bodies simply associate cookies/bread/baked stuff etc. with the gluten whether it's there or not?

 

This is what Jane Anderson says:

https://www.verywell.com/symptoms-continue-eating-gluten-free-562740

Celiac experts came up with a standard for food manufacturers to follow and to keep most celiacs safe.  So, they determined that 20 ppm is a safe threshold for a majority of celiacs.  Notice it is a majority — not all celiacs (Read the supporting studies and the FDA guidelines.   When a celiac is not responding to the gluten free diet, experts have developed a very strict diet that greatly reduces the chance for any hidden sources of gluten.  We all refer it as the Fasano diet, but many can take credit.   It basically eliminates gluten-free grains (except rice) along with many processed foods.  Now some patients might not be very careful, but many are very careful, so it seems like trace amounts of gluten may impact a celiacs health.  

The reality is that there is a lot more research needed, but unfortunately celiac disease lacks funding.  In the meantime, start with the standard gluten-free diet, try to identify other intolerances and if you are still not better, try the Fasano diet for a few months.   Everyone needs to determine the best diet for their individual needs.  If this sounds daunting, consider working with a celiac-savvy dietician.  (I am writing this for some of our Newbies.)

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My first rash was not that bad. Don't get me wrong, at the time I thought I was going to be a deformed monster (I get it bad on my face as well).... It was not typical looking so I was misdiagnosed as polymorphic light eruption. The dermatologist did the biopsy of a spot with active rash (obviously she didn't understand DH). I was given malaria medication called PLAQUENIL which was supposed to stop my skin from being photosensitive. Naturally, the medicine did nothing accept mess up my eyesight. I saw a nutritionist and she suggested maybe I have a gluten intolerance. After 6 months the rash went away. It came back three times over the next two-three years and then disappeared completely for about 5 years. After a while I figured I out grew it (still not understanding it was DH and Celiac). Subsequent outbreaks were worse and more "sterotypical DH" looking.

It came back with a vengeance four days ago. This is the worst it has ever been. So long story short, it can get worse if you don't eat correctly after long periods of eating well.

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