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How Long On Gfd Until Improvement Seen?

mhalpin12

By mhalpin12
in Dermatitis Herpetiformis

Recommended Posts

mhalpin12 Apprentice
mhalpin12
Posted

I've decided to take the plunge, go gluten-free, and hope that this DH-like rash will disappear. Question is, how long should I give it? A month? 3 months? Longer? Can others please share how long it took to see healing of the rash after going gluten-free? I'm not taking any other meds for it, and I'm even putting off acupuncture treatments so I can see what the diet alone is doing for it. I know acupuncture would help it tremendously, as it has in the past, but I don't want to muddy up the waters when it comes to what is helping it. Thanks for any thoughts!

Michelle in TN

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Lynayah Enthusiast
Lynayah
Posted
I've decided to take the plunge, go gluten-free, and hope that this DH-like rash will disappear. Question is, how long should I give it? A month? 3 months? Longer? Can others please share how long it took to see healing of the rash after going gluten-free? I'm not taking any other meds for it, and I'm even putting off acupuncture treatments so I can see what the diet alone is doing for it. I know acupuncture would help it tremendously, as it has in the past, but I don't want to muddy up the waters when it comes to what is helping it. Thanks for any thoughts!

Michelle in TN

Hi, Michelle!

It is different for everyone. You might want to take at a similar thread that was recently started here:

https://www.celiac.com/gluten-free/index.php?showtopic=64098

Hope this helps!

Lyn

Glamour Explorer
Glamour
Posted

I think I have been gluten-free about 5 weeks but I am sure I got contaminated during the first week or more, especially from hidden gluten (tortilla chips that won't claim to be gluten-free) and CC.

I have noticed more time between itch attacks, and I have even gone several hours at a time without itching. Night is still bad, or if I get overheated working or under covers.

Nerves still seem to trigger itch. Stress triggers.

I did not cut out enough sugar and dairy either.

I have not been diagnosed celiac, just have a feeling. Stomach went down pretty fast and is still slowly going down.

ravenwoodglass Mentor
ravenwoodglass
Posted

I was on a very strict doctor guided elimination diet and consuming only whole unprocessed foods when I went gluten-free. I stopped forming new sores pretty quickly, like within a couple of weeks, but it did take a couple of months for the ones I had to heal. In the beginning it took very, very little gluten to activate new lesions so I remained superstrict even after going back to a normal but gluten-free diet. I also eliminated gluten sources from my toiletries and lotions as soon as I knew I had DH.

mhalpin12 Apprentice
mhalpin12
Posted
  • Author

Thanks so much for the replies. Now I know that I need to commit to this for several months. I finally got all of my personal care items gluten-free today, after two different trips out and tons of online research. Very frustrating and very expensive to switch everything over. Ugh. But if I'm going to do it, I'm doing it all the way. I hope that going gluten-free bears some fruit with regard to this awful rash.

Another question: Wondering how many here on the boards who do a gluten-free diet for DH actually have an official DH diagnosis with a positive biopsy. That's the only thing that's nagging at me, that I don't have any proof that this is DH. Yes, my biopsy was done incorrectly and therefore negative. But I wonder now if I should pursue another biopsy, done correctly. Could I still get a biopsy after being gluten-free (just for a couple of days)? Seems like I could get a valid biopsy, since the IgA deposits seem to remain in the skin for a while after going gluten-free. Sigh. Oh, well. Hubby thinks this is a valid way to go, just going gluten-free and see what happens.

Michelle in TN

  • 1 month later...
dh mom Newbie
dh mom
Posted

Thanks so much for the replies. Now I know that I need to commit to this for several months. I finally got all of my personal care items gluten-free today, after two different trips out and tons of online research. Very frustrating and very expensive to switch everything over. Ugh. But if I'm going to do it, I'm doing it all the way. I hope that going gluten-free bears some fruit with regard to this awful rash.

Another question: Wondering how many here on the boards who do a gluten-free diet for DH actually have an official DH diagnosis with a positive biopsy. That's the only thing that's nagging at me, that I don't have any proof that this is DH. Yes, my biopsy was done incorrectly and therefore negative. But I wonder now if I should pursue another biopsy, done correctly. Could I still get a biopsy after being gluten-free (just for a couple of days)? Seems like I could get a valid biopsy, since the IgA deposits seem to remain in the skin for a while after going gluten-free. Sigh. Oh, well. Hubby thinks this is a valid way to go, just going gluten-free and see what happens.

Michelle in TN

dh mom Newbie
dh mom
Posted

Go back and Get diagnosed!!! gluten-free is too hard to do if you don't have to. It is for the REST OF YOUR LIFE!!!

Take the time now to get an accurate test, find another derm if necessary. Otherwise, you will need to reintroduce wheat to get a biopsy of blisters again. Do it while you have them! Good luck

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tarnalberry Community Regular
tarnalberry
Posted

Yes, going gluten free and seeing how it goes is perfectly valid. But only do it if you know you can trust yourself to be honest with yourself. If gluten *does* cause problems (anything, really), then you need to be honest that you can't have ANY, and not just sneak a little here and there because there isn't an official DX. For some people, that works (being honest and sticking to the diet without a formal DX, but their own reaction to the diet). For others, it just prolongs the misery.

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