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What To Expect At Appointment?

BrownEyedGirl

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BrownEyedGirl Apprentice
BrownEyedGirl
Posted

I was diagnosed with allergic dermatitis to possibly wheat gluten and casein in the ER, and I'm supposed to follow-up with a dermatologist. The doctor mentioned testing for DH. I'm just wondering what to expect at my first appointment.

I was told to go ahead and start a food diary so I have something to show the derm ... since my symptoms happen right after eating. I started on a gluten-free/CF diet yesterday, and so far I am making progress in terms of my symptoms.

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WheatChef Apprentice
WheatChef
Posted

I believe for DH testing they do a biopsy where they take a small amount of skin from around the DH area and send it in for testing. The food journal would be very helpful for your doctor so be sure to keep up on it. You mention that you tested negative for Celiac, do you know which actual tests were run?

mushroom Proficient
mushroom
Posted

I don't know how soon your derm. appt. is, but be aware that if a biopsy is to be done it needs to be done of the skin immediately adjacent to an active lesion, so that there are antibodies present in the skin. If you stop eating gluten now, you may stop producing the antibodies and test negative when you should test positive. If your lesions are starting to quieten down in response to the diet you may invalidate any testing.

BrownEyedGirl Apprentice
BrownEyedGirl
Posted
  • Author

The negative test was about four years ago. I was diagnosed with rosacea (which is now gone) and was breaking out in hives, in response to milk and wheat. That problem went away, only to reappear about a week ago. I don't know what exact tests were run. I know my doctor was concerned about auto-immune disorders because of my problems with rashes. He said that he tested me for celiac and lupus but that's all I know.

I would say that I still have active lesions. The blisters are still there ... they have just gotten just slightly smaller and less redness and itching. Now, I have been gluten-free for a little less than two days now. My appointment is at 8am tomorrow. I've had pretty immediate reactions to wheat and milk it seems. Should I go ahead and eat something with wheat tonight, or just go ahead and stick with the diet until the morning? I highly doubt that the lesions will go down much overnight ... there is progress, but just enough to notice. I do have three more steroid doses before then though.

mushroom Proficient
mushroom
Posted

The negative test was about four years ago. I was diagnosed with rosacea (which is now gone) and was breaking out in hives, in response to milk and wheat. That problem went away, only to reappear about a week ago. I don't know what exact tests were run. I know my doctor was concerned about auto-immune disorders because of my problems with rashes. He said that he tested me for celiac and lupus but that's all I know.

I would say that I still have active lesions. The blisters are still there ... they have just gotten just slightly smaller and less redness and itching. Now, I have been gluten-free for a little less than two days now. My appointment is at 8am tomorrow. I've had pretty immediate reactions to wheat and milk it seems. Should I go ahead and eat something with wheat tonight, or just go ahead and stick with the diet until the morning? I highly doubt that the lesions will go down much overnight ... there is progress, but just enough to notice. I do have three more steroid doses before then though.

I am glad your appointment is soon. I am worried that you are treating the lesions with steroids and avoiding gluten, both things designed to suppress the immune system response, prior to the testing. I am not a medical professional and have not been able to find an online reference to support this opinion, but it would seem that both these things would lessen the likelihood of a positive antibody response in the tissue :( The fact that there is less redness and itching is indicative that the response is starting to go away. It is for you to decide what to do.

BrownEyedGirl Apprentice
BrownEyedGirl
Posted
  • Author

I am glad your appointment is soon. I am worried that you are treating the lesions with steroids and avoiding gluten, both things designed to suppress the immune system response, prior to the testing. I am not a medical professional and have not been able to find an online reference to support this opinion, but it would seem that both these things would lessen the likelihood of a positive antibody response in the tissue :( The fact that there is less redness and itching is indicative that the response is starting to go away. It is for you to decide what to do.

Yeah, that is true. Though, I think the doctor I saw in the ER was more concerned about treating the rash and lesions and making me more comfortable. I will see how it goes tonight, and if need be, I'll eat something unsafe before my appointment. Like I said, I react pretty quickly.

mushroom Proficient
mushroom
Posted

Yeah, that is true. Though, I think the doctor I saw in the ER was more concerned about treating the rash and lesions and making me more comfortable. I will see how it goes tonight, and if need be, I'll eat something unsafe before my appointment. Like I said, I react pretty quickly.

However, you will not react so quickly with the steroids in your system :( Just something to think about.

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BrownEyedGirl Apprentice
BrownEyedGirl
Posted
  • Author

However, you will not react so quickly with the steroids in your system :( Just something to think about.

Oh, I don't know ...

With just the steroids alone, I was getting worse. I didn't make *any* improvement until I started eating gluten-free/CF.

mushroom Proficient
mushroom
Posted

I do hope your appointment goes well tomorrow, Becky. :)

BrownEyedGirl Apprentice
BrownEyedGirl
Posted
  • Author

I do hope your appointment goes well tomorrow, Becky. :)

Thanks, I will post an update when I get home tonight. It will be late though ... have to go straight to work afterwards.

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      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.
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      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.
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