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What's Up With My Symptoms Getting Worse?

gluten Tag

By gluten Tag
in Dermatitis Herpetiformis

Recommended Posts

gluten Tag Rookie
gluten Tag
Posted

I have been gluten-free for about a month. Mentally Im feeling much better. In addition, no aches and pains and sleeping better. But my DH has become worse and my occasional mouth ulcers are here with a vengence. What the heck? :o

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ravenwoodglass Mentor
ravenwoodglass
Posted

Have you checked all your toiletries? Shampoos, lotions, makeup, lip sticks and balms etc can all provide enough gluten for a reaction.

dilettantesteph Collaborator
dilettantesteph
Posted

It seems to be pretty typical to get more sensitive to smaller amounts of gluten after you go off it. You need to check carefully for sources of gluten to eliminate.

gluten Tag Rookie
gluten Tag
Posted
  • Author

I feel like I've checked everything very closely. It's feeling very discouraging.

dilettantesteph Collaborator
dilettantesteph
Posted

I think we need more details about what you use to be able to help you. For instance there are a lot of "gluten free" foods that have marked on the label that they are processed in facilities that also process wheat. Most of those make me and my celiac son sick. They get contaminated by incompletely cleaned machinery or just by gluten containing dust in the air. There are medications and vitamins that contain gluten. Have you eliminated oats? Some celiacs react to even gluten free oats. What brand of gluten free flour do you use? Some celiacs react to grain alcohol and some wine.

ravenwoodglass Mentor
ravenwoodglass
Posted

In addition to the stuff already mentioned do you use Iodized salt? If you do stop until after you lesions have been gone for a while. The iodine also activates DH lesions and it takes a while for the antibodies to leave the skin.

ang1e0251 Contributor
ang1e0251
Posted

Don't forget toothpaste. Have you been around any remodeling like drywall or wallpapering? Do you work any crafts or art projects? Sometimes things we don't even think about have gluten. I had the worst reaction I've since going gluten-free this summer after having 2 packets of stevia. Stevia is a sweetener that doesn't have gluten but I stupidly didn't check the packet. It was laced with wheat flour!

Could you be getting CC'd? At home it can happen easily. That was another dumb mistake I made. I guess I've been my own worst enemy. Look out for yourself!

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  • 3 weeks later...
Emily888 Rookie
Emily888
Posted

Are you taking any medication? Medications and OTC drugs can have fillers that have gluten.

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  • Posts

    • Rogol72
      Guinness, can you drink it?

      By Rogol72 · Posted

      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
      Guinness, can you drink it?

      By Scott Adams · Posted

      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
      Gluten Issues and Vitamin D

      By MogwaiStripe · Posted

      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
      Guinness, can you drink it?

      By Butch68 · Posted

      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
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      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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