DH rash

[kathy K]

My celiac diagnosis was manifested by DH in 2004.  I have been strictly gluten-free since 2005 and my rash began to heal within 7 days and was mostly gone in a month or so.  When I have been inadvertently glutened, I have gotten sick.  On rare occasion I might get an itchy spot that is reminiscent of the horrible burn, but usually goes away quickly.  Last week, it seems like it returned, with a vengeance!  No GI issues at all.  I am not sure what triggered it, except using lotion for terribly dry skin and I've used that lotion in the past (probably smaller quantities) so I immediately stopped.  No gluten ingestion that I'm aware of. The rash has not improved and I'm wondering how long you find before it improves?  Has anyone else had issues like this?  (of course, I am aware that some people get a rash with covid, although this rash is bringing back very bad memories, so I suspect DH).  Thanks for your input!

[Scott Adams]

The normal procedure is to recheck your diet and make sure it is 100% gluten-free, as even tiny amounts of gluten can trigger the DH rash. Do you eat outside your home? In restaurants? If so this could be the culprit. Other common issues are with oats or other grains that might be contaminated.

[kathy K]

Thanks, Scott.  I haven't eaten restaurant food in at least a month - rarely eat out normally and less since covid.  I have been re-checking all my old and trusted foods for changes in ingredients, but so far, haven't seen anything unusual.  I only eat certfied gluten-free oats, when I have them.  I'm baffled and have never had a reaction like this in 16 years.   😡

[Marianne Carroll]

I'm very interested in this. I am a highly sensitive Celiac and developed an incredibly itchy rash about 2 weeks ago. No reason, and it's not going away. Doctor told me to take Zyrtec and prescribed a lotion, but I never knew a rash was part of celiacs.

[trents]

2 minutes ago, Marianne Carroll said:

I'm very interested in this. I am a highly sensitive Celiac and developed an incredibly itchy rash about 2 weeks ago. No reason, and it's not going away. Doctor told me to take Zyrtec and prescribed a lotion, but I never knew a rash was part of celiacs.

As a matter of fact, it's one of the classic symptoms of celiac disease. Just doesn't get as much press today as it used to. At least that is my impression. Something other than GI distress is actually very commonly experienced by many with celiac disease. It's a disease that has a wide range of manifestations. Some have no villi damage but the disease affects other body systems, such as the skin.

[Kzc]

I’ve been gluten free for 12 years and just  broke out in a horrible rash as well.
 

Doctor was baffled since I eat gluten-free diet. He was concerned it was Covid, but I tested negative with several different tests on multiple occasions.  
 

Started over with the illuminate all and bring back one thing at a time allergy ritual. Turns out it was my greens supplement. They had recently switched suppliers for some of their greens and added barley grass to the mix while keeping the gluten-free label on the front of the packaging. 
 

Amazing how little things make such a huge difference 😊

 

Feeling better day by day and will definitely try the tea bath! And thanks for the reminder about baking soda baths! 
 

Very grateful for this forum 💕

[kathy K]

1 hour ago, Kzc said:

I’ve been gluten free for 12 years and just  broke out in a horrible rash as well.
 

Doctor was baffled since I eat gluten-free diet. He was concerned it was Covid, but I tested negative with several different tests on multiple occasions.  
 

Started over with the illuminate all and bring back one thing at a time allergy ritual. Turns out it was my greens supplement. They had recently switched suppliers for some of their greens and added barley grass to the mix while keeping the gluten-free label on the front of the packaging. 
 

Amazing how little things make such a huge difference 😊

 

Feeling better day by day and will definitely try the tea bath! And thanks for the reminder about baking soda baths! 
 

Very grateful for this forum 💕

Wow, I'm sorry.  Hope you keep feeling better.   How can they keep gluten-free on their label?  Can I ask what greens supplement you use?  My son (who is gluten sensitive) takes a supplement and is complaining of terrible itchiness - no rash. What kind of tea bath do you do?  Sounds lovely.  

[Kzc]

51 minutes ago, kathy K said:

Wow, I'm sorry.  Hope you keep feeling better.   How can they keep gluten-free on their label?  Can I ask what greens supplement you use?  My son (who is gluten sensitive) takes a supplement and is complaining of terrible itchiness - no rash. What kind of tea bath do you do?  Sounds lovely.  

Thank you 💕 Is what it is. 
 

Here’s a link to a good article explaining the barley and wheat grass issue. I’m sure there’s one on this site as well. 

https://www.verywellfit.com/are-wheat-grass-and-barley-grass-gluten-free-562729

This company complies with basic standards, They are a good company, I’m sure they just didn't realize. I have let their service center know I had a reaction.

Hopefully they’ll come out with a different product without the grass for celiacs 😊
 

Macro life naturals - macro greens superfood 

“In theory, wheatgrass or barley grass should be gluten-free, since the gluten protein is present in the seeds and not the grasses. In reality, however, farming practices are not always exact and there is also the risk of cross-contamination involved in the manufacturing process. Finally, the "less than 20 parts per million" rule may not be applicable to someone who is very sensitive to gluten.”

Hope your son feels better soon! The burning itchiness is maddening. 

[Scott Adams]

A long time ago I used to get Jamba Juice with a wheat grass shot, which at the time they claimed was gluten-free. It is gluten-free it if is always 100% grass, however, when I watched them cut the grass in front of me I noticed that some unsprouted kernels/seeds had been pushed up by the growing grass, and were just sitting there mixed into the grass. The person had grabbed one and put it in the juicer and I told them not to add it because of this. The more I think about it the more unlikely it is for anyone to be able to manufacture gluten-free barley or wheat grass on a large scale, or even a small one!

[Jim Rockford]

I’ve had DH before but now have atopic dermatitis. All those posts lamenting eating out and CC don’t seem so paranoid now. 
 

It’s hard to figure out the cause with so many factors and if still exposing yourself to potential CC.

So many posts mention these setbacks make one feel like you’re starting over. It’s easy to assume things are safe because they are supposed to or labeled as such.

For me a gradual and reluctant move towards whole, unprocessed foods seems the only sure way to avoid problems. 
 

That being said, damn do I miss Bob’s Big Boy.

[Scott Adams]

I still miss many things as well, including Bob's, but I've learned ways to replace those items with healthy, gluten-free alternatives. Try Little Northern Bakehouse hamburger buns and make your own Bob's style hamburger! Their buns may not meet the whole foods definition, but you need to have a reward once in a while. I never ate hamburgers that often even before my diagnosis, and still don't.

[CMCM]

My adult son's first manifestation of celiac was actually in the form of DH, which not a single dermatologist ever suggested as a cause, they were all clueless.  I didn't really know much about DH either.  My mother was diagnosed with celiac disease in 1967, and she had the classic symptoms so that is what I was familiar with and figured you had to have.  Both my son and I researched including on this site and quickly realized what he had was DH.  He quit gluten, the DH went away fairly quickly and hasn't come back.  However,  after that he has found that any accidental exposure to gluten affects him quickly and with vomiting and feeling sick for a day or so. He scrupulously avoids all gluten and has done so for 5 or so years, but he does accidentally get gluten here and there, mostly in the context of eating out.  Most recently, Papa Murphy's gluten-free pizza made him very sick, probably cross contamination in the prep process.  As for ME, I've had all sorts of symptoms my whole life, but never DH until last December.  I got a large, red, very itchy rash on my left inner ankle.  It has gone away now that I'm gluten free for over 4 weeks at this point, and I do have to wonder if it was DH.  I found no other possible cause for it, and did nothing to treat it.  However, the appearance of the rash was soon followed by other gluten related mostly digestive symptoms that forced me to rethink all this, but all the pieces of the puzzle are coming together. 

[trents]

CMCM, you probably already know this but if you have a first degree relative with celiac disease there is about a 40% chance you will have it or will develop it.

[CMCM]

1 hour ago, trents said:

CMCM, you probably already know this but if you have a first degree relative with celiac disease there is about a 40% chance you will have it or will develop it.

I've FINALLY abandoned the idea of getting a "definitive" celiac diagnosis for myself to be convinced. I never seem to test positive on a blood test, but I now understand the limits of that test anyway.  I've had symptoms my whole life that I didn't connect with celiac because they weren't like my mother's symptoms (which I thought was the norm and the only thing)  I remember back when my mom was diagnosed in 1967, her doctor said probably one of her 4 kids had a possibility of inheriting it too!  They didn't do gene testing then, so how could you know your chances?  

After reading my brains out about all this, I believe I've had either celiac or at least gluten sensitivity my entire life, along with dairy sensitivity that I clearly had from birth (I couldn't tolerate cow's milk but ended up tolerating goat's milk).  I have the DQ2 gene, as do both my children and my 3 siblings (my mom had two DQ2 genes, a double celiac, so obviously all her children would get one).  My nephew & niece (brother's kids) have the gene and my nephew is strongly reactive to gluten as is my son, and they are both instantly and violently sick like my mother was at any gluten exposure.  They both scrupulously avoid gluten, as they must.

So I realize it's stupid at this point to be in denial about myself, I clearly have one or the other (celiac or GS) and it doesn't much matter which one at this point.  I'm finally committed to accepting and determined to never again knowingly eat gluten, which is what you have to do.  I don't want to risk my health any further.  Before recently, I never understood how damaging gluten sensitivity itself could be.  Without a solid diagnosis for celiac to prod me on, I thought for a lot of years that I could get away with eating gluten occasionally, although in retrospect I think I didn't eat it frequently enough to do damage enough to show on a blood test.  I often went weeks without gluten, and then here and there I'd pig out on it for a period of time, then stop again and stay away from it for long periods of time.  But looking at the celiac symptom list, I could find about 12 things I've had that fit the celiac profile so the picture is fairly clear.  That's a sobering thing to realize and I just hope I haven't incurred intestinal damage.

As of a month ago, things clearly changed for the worse suddenly, and I've been sicker than I've ever been starting the end of December.  I was very sick in a way I haven't been before (including what I think was DH), but I was still eating gluten (toast, bear claws) for the first two 2 weeks before figuring things out and returning to the idea of gluten causing all the current problems, and and now I'm totally convinced.    I'm a bit over 4 weeks gluten free and also dairy free, and finally the last few days I've been starting to feel remarkably better, so it's clear to me that gluten (and probably dairy too) are the culprits in my experiences.

[trents]

Keep a lookout for other food sensitivities/allergies besides dairy since there can be others. Especially since you have been violating your immune system for so long by consuming gluten. The damage done to the small bowel lining creates "leaky gut" syndrome that allows larger than usual food protein fragments to cross into the blood stream. These can be interpreted by the immune system as threats and hence trigger new intolerances/allergies.

[CMCM]

18 hours ago, trents said:

Keep a lookout for other food sensitivities/allergies besides dairy since there can be others. Especially since you have been violating your immune system for so long by consuming gluten. The damage done to the small bowel lining creates "leaky gut" syndrome that allows larger than usual food protein fragments to cross into the blood stream. These can be interpreted by the immune system as threats and hence trigger new intolerances/allergies.

I know I'm sensitive to rather a lot of foods.  Nightshades, cruciferous vegetables, I think I have fructose intolerance because of how more than just a tiny bit of fruit can make me feel sick.  At this moment in time, I've gotten to a point (again) where I feel like almost no food agrees with me, but I know from past experience that after a period of time (maybe a few months) that will change once my system settles down again.  Right now, food doesn't really appeal to me much.  My past experience has shown that I do best with what is pretty much an Atkins induction type diet, with very low carbs.