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dermatitis herpetiformis

gluten-free-33

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gluten-free-33 Newbie
gluten-free-33
Posted

I was originally diagnosed with celiac disease by my neurologist who ran more intensive blood work than anyone had previously. After seeing a GI and having an endoscopy completed I was told that I've had celiac for a long time based on the results. I started the gluten free diet in March. Recently I have begun to see rashes that, based on research, seem to be dermatitis herpetiformis. My dermatologist diagnosed the first appearance as eczema after a biopsy. Over the last few days I've been seeing more of these areas appearing, mainly on my neck and back. I never had any skin condition like this before starting the gluten-free diet, only migraines and daily headaches. Has anyone else experienced things like this AFTER going gluten-free?

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Diana061 Newbie
Diana061
Posted

Is it possible you have shingles ? 

gluten-free-33 Newbie
gluten-free-33
Posted
  • Author

I suppose it's possible? But I'm not sure it's shingles since it went away (mostly) and has now reappeared in different places? I don't know much about shingles either... I'm sort of at a stop point on which doctor to actually see and trust. It seems most I've seen aren't well-versed in Celiac Disease and I've been doing a lot of my own research. Feeling fairly at a loss about it all with no clear direction where to go next. 

squirmingitch Veteran
squirmingitch
Posted

Do you have a shared household? Do you eat out? Are you eating oats? Are you sure you're not getting cross contaminated?

Have you read our Newbie 101 pinned to the top of the Coping section?

How was the biopsy done? ON a lesion (or rash)? That is not a biopsy for dh. A biopsy for dh is taken adjacent to a fresh lesion & there is an immunofluorescent staining process & it's looked at by pathology for a particular patterning.

If it is eczema, eczema & other skin rashes/problems are common to celiacs. 

gluten-free-33 Newbie
gluten-free-33
Posted
  • Author

We were on a trip out of town for a family wedding (eating out a couple times when necessary) when this second round started so that's what is leading me to think it is DH or something resulting from cross contamination. My initial biopsy was taken from the rash area. Although my dermatologist knew I had been diagnosed Im not sure he thought it was related. I'm confused because I never had these things show until after eliminating gluten. 

Jmg Mentor
Jmg
Posted
9 hours ago, gluten-free@33 said:

 Has anyone else experienced things like this AFTER going gluten-free?

I had what I think was DH about 18 months into being gluten-free. It was an intensely itchy rash on each elbow. I reviewed my diet and stopped eating a breakfast cereal which I'd previously thought was safe, but had barley malt in it. The rash resolved. Note I didn't go to the doctors, so I can't tell you that it was DH, but it's my best guess.

It wasn't like shingles which I've definitely had. That follows a nerve pathway around the body, it's very sore to begin with and progresses into ugly raised sores. Painful and unpleasant! To be honest, you will soon know if you have it. 

I also have seborroic dermatitis and folliculitis, it wasn't like those. My theory is that as I progressed on the diet my body became more sensitive and previously tolerated amounts were no longer suitable for me. So my advice to you would be to review your diet as per squirmingitch above to see if there's any rogue food, sauce etc which may be letting even the smallest bit of gluten into your system. 

Sue7171 Rookie
Sue7171
Posted
On 8/8/2016 at 1:47 PM, gluten-free@33 said:

I was originally diagnosed with celiac disease by my neurologist who ran more intensive blood work than anyone had previously. After seeing a GI and having an endoscopy completed I was told that I've had celiac for a long time based on the results. I started the gluten free diet in March. Recently I have begun to see rashes that, based on research, seem to be dermatitis herpetiformis. My dermatologist diagnosed the first appearance as eczema after a biopsy. Over the last few days I've been seeing more of these areas appearing, mainly on my neck and back. I never had any skin condition like this before starting the gluten-free diet, only migraines and daily headaches. Has anyone else experienced things like this AFTER going gluten-free?

Only if I accidentally ate gluten OR put anything with gluten on my skin. Is it possible that some shampoo/soap/lotion you have and are applying to yourself has gluten in it?

BTW the treatment besides avoidance for DH is Dapsone in a gel form applied to the affected area.

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gluten-free-33 Newbie
gluten-free-33
Posted
  • Author

Thank you all for your thoughts and assistance. I'm more hopeful knowing there are supportive people out here!

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    • Aretaeus Cappadocia
      Gluten free nuts

      By Aretaeus Cappadocia · Posted

      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

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    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

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    • Wheatwacked
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

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