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Everyday Products On Hands?


Sophie and Martin

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Sophie and Martin Newbie

Hello and good morning.

I usually stay on POFAK, but as I have my own issue with gluten, I came to ask you this question. We know for sure that my kid reacts to gluten. I started to have terrible itchy excema during my first pregnancy, and since aug 2004 I'm on gluten free diet for the sake of my BF baby.

I had a few "slips" in my diet, and in the past months, I have had some killing-me itchy excema on my middle finger. I immediatly changed my rings (platinum) so it could heal, but it just get worse and worse.

It started as tiny tiny no-color bumps, it was SO itchy that I was scartching during my sleep, and the burn of scatching would wake me up.

As few days later, the skin neatly broke like clean cuts

For the past month, it's layers upon layers of thin skin pealing away and bleeding...

I dont know what to do anymore.

:wacko: I mjust read that the cortisone cream I use might actually contain gluten and worsen it???

:wacko: I start to question everything, and I wonder how I can choose what touches the sores... washing the dishes? washing my hair? washing my hands?

Please help... I dont even know where to start....

Sophie


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frenchiemama Collaborator

Have you been tested for celiac disease? You could have DH, what you described sounds similar to what I get. It starts as tiny little flesh-colored bumps that grow into blisters, then I scratch them and they turn into big raw patches that weep profusely. The itch is sometimes so unbearable that it really becomes a threat to my sanity.

I don't do dishes anymore, as it seems to make the patches on my hands much worse. I have also switched to gluten-free everything; lotion, shampoo, you name it.

I've been gluten-free for about 3 weeks now, and haven't really noticed a difference yet. It was really out of control recently (I literally had it head to toe, on my scalp, face, all over my entire body) and I went on prednisone for 6 days. Took care of it right away, but of course the first day off it started coming back.

I also avoid seafood and iodized salt, and have now gone totally organic in hopes that it will help my skin.

KaitiUSA Enthusiast

It sounds like you are coming in contact with gluten and reacting which happens to people with DH.

You need to get all gluten free products...shampoos, makeup, soaps, lotions...just as said in the previous post.

Good luck and if you need any help feel free to contact me :D

Sophie and Martin Newbie

Thanks for those kind replies.

no we have not been tested. We started an emergency gluten free diet when my son was 6weeks old, and any tiny amount of gluten simply kills us (me -> this rash, him terrible diarrhea).

I read and read about testing, and nothing seems apealing to me: either it's not *accurate*, either it requires gluten loaded diet, something I REFUSE to do it on my kid (or the doc would at least pay with his own money for 4weeks of total child care as I cannot stand the screams anymore), and I'm reluctant on myself...

Ped and allergist are both OK with breast milk diagnostic: baby reacts to BM, and we can repeat and predict the test and results. So I do not know if we deal with celiac, with gluten intolerence, with DH, .. but we DO know that gluten-free diet solves 95% of our problems.

I'm pretty much in control of ingested gluten-free food. But for shampoos and like..

How do you find the info? Do you need to phone everywhere? are they lists anywhere?

I found the topic on makeup (not that I wear any, but I'll clean my cabinet anyway), but I dont know for the rest. Should I only avoid gluten? or certain food coloring? certain cleaning products?

Does wearing latex gloves solve the dishes problem? or is this something that I should give to hubby?

Does it make sense that I react to *water* when the sores are bleeding? (ie the water *burns* just like alcool or vinegar on cuts)

thanks again....

(I'll try to read more on this forum, but it takes time....)

KaitiUSA Enthusiast

We have found the info about the gluten free products by calling companies and emailing companies. Alot of people on here have done extensive research and know what brands to get and then we share the info.

There is a huge Delphi list that just came out a few weeks ago and it is a 79 page list of some gluten free products. It doesn't contain all products that are gluten free but I think it would definitely help you out.

celiac3270 posted about it a few weeks ago in the product section that gave these instructions on how to get it...it is free

1) Go to the website, Open Original Shared Link

2) Click on "messages" or "start reading"

3) Select the folder "gluten-free Product List"

4) Click on the topic called "Downloadable files word"

5) Of the four options, choose the one in the upper right.

If you need brands of soaps, shampoos, makeup, etc you can find info on the forum

If that takes to much time just contact me about products you would like that are gluten free and I can help you out with brands.

Sophie and Martin Newbie
celiac3270 posted about it a few weeks ago in the product section

thank you so much....

That's the kind of start I needed.

Yes, it's a lot of reading, but the work pulled together to produce such a file is :huh::huh::huh::huh: and I'd better start there!

many thanks, and if you know celiac3270, please transmit my thanks too... :wub:

Sophie

celiac3270 Collaborator

You're welcome :D;) -- I didn't do the work, though, I just notified people here about it :lol:


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frenchiemama Collaborator

I forgot to add this earlier, but it's a biggie for me: NO scents or colors in your lotion, soap or laundry detergent. I don't think it has anything to do with the DH, but it really irritates my skin (even before I had DH).

cdford Contributor

When we are broken out, even water can trigger a round of miserable itching. We have to be extra careful of anything that comes into contact with the skin. Check even your dishwashing liquids and powders. We use All Free and Clear for clothes. One thing we have found to be a life saver is Shaklee's Basic H household cleaner. Not only do we not break out with it, but we can use 1/2 tsp in a tub of water to bathe and it helps ease the itching and keep down the secondary infections. The sores even look better once we get out of the tub.

Sophie and Martin Newbie

Thanks for all your answers...

I wanted to keep you posted on great improvment:

We have been (me and nursed baby) on gluten-free diet since august.

On the 9th of may, I had some B'Day cake, and I had that immediate rxn and my baby flared. We have been on strict gluten-free diet since.

Today is the 20th, my finger is much much better... nearly healed, and 99% itch free. My baby is still itching (he needs ~14days - by experience - to clear his system)

I'm still studying the great list you gave me, but I guess the only way to go for us is a strict food diet - and I'l keep checking now and then shampoos and likes, but I'm just not up to gluten-hunt ALL my environment - yet...

This little event, and your great answers, are also a turning point for me, as I decided that I'm gluten sensitive too, and after weaning my baby, I MUST keep gluten-free dieting for myself - which might mean gluten-free dieting for the whole family as my gluten-free cooking improves.

Many many thanks,

Sophie and baby Martin.

  • 4 weeks later...
oakpoint9 Newbie

Thanks for the info on the Delphi list. I have been looking for something like that!

The only thing that works for me on my fingures is plan old petro jelly.

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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
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