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Lynr

Member Since 19 Oct 2012
Offline Last Active Nov 18 2012 10:46 AM
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Posts I've Made

In Topic: New Study On Quinoa

21 October 2012 - 08:34 PM

I had a horrible new outbreak of DH today after eating quinoa. I went online to check every food I had eaten and here is what I found about quinoa. I will NEVER eat it again. . . Wow

http://isriceglutenf...noa-gluten-free

I obviously cannot eat this!

In Topic: Celiac Rash - Dh

20 October 2012 - 10:40 PM

Lyn & Really Good Scratcher,

Most of us with dh tend to test neg. on the celiac blood panel. The antibodies are in our skin more than regular celiacs. But some have actually tested positive on the blood panel. We also tend to have neg. on the endoscopy/biopsy b/c our villi damage tends to be patchier; again b/c the damage is more concentrated in our skin.

Then, as you have both experienced, derms who actually know about this stuff & how to biopsy it are few & far between. Like Prickly says --- any steroid treatments, topical or oral will make ANY celiac testing a wash.

I sympathize with both of you. My screen name pretty much says it all. I am 10.5 months squeaky clean gluten-free & am going through one of those spontaneous outbreaks we read can happen. I've been going through it since Sept. 10th at least. Posted ImagePosted ImagePosted ImagePosted ImagePosted Image And I am low iodine but this outbreak is about to break me. Stress is a huge factor & I will admit I've had my share of that lately.

I too am allergic to sulfa drugs. Also allergic to penicillin. That leaves Tetracycline drugs which is about the fourth line of treatment for dh as the top 3 are sulfa. I am not willing to go the Tetracycline route for 2 reasons. 1) We can become allergic to things & I don't want to cut myself off from Tetracycline ---- I hope to live quite a few years & at some point I will undoubtedly need some Tetracycline. 2) Tetracycline destroys the "good guys" along with the bad & even though our guts don't show the damage as bad as regular celiacs ---- the damage is there never the less. We fight to get good bacteria in our gut taking probiotics. I don't wish to make that task harder.

I just amde a pretty little speech there but I will tell you the truth...... There have been times where if Dapsone or steroids or what have you had been sitting on the table in front of me; I surely would have said, "Damn the consequences!" And downed the meds.

Dh is a bitch, pure & simple. But fight her we will & one day we WILL walk out the other side of this hell.


I replied to someone else that my blood test was negative. Have you heard of homeopathic muscle testing? My chiropractor would test me for various drugs, food, etc. Just this evening my niece told me to close my eyes and she begin to test me. She held up a loaf of bread to my chest and I could not even hold my grip. It was like my fingers just popped apart. If you don't know about this maybe you can google. It is not uncommon for chiro's and other natural health ppl to do this. I have never thought about muscle testing gluten foods. Duh I will continue the gluten-free way of life and am seeing that my blood sugar is doing better. That is good! Like I said, I've had blisters/lesions on my scalp and feet and even on my shoulders and lower back but NEVER like what I've experienced in the past 7 months. I look like I have chicken pox. Tried to upload photos but wasn't successful. Believe me, I am totally covered with this. I'll let you all know the outcome of my blood test on Monday. Thanks for your response!

In Topic: Celiac Rash - Dh

20 October 2012 - 10:21 PM

One thing that may help with the rash AFTER you are done with celiac testing and gone gluten free is a short course of prednisone. When the doctors thought my DH was poison ivy about once a year they would give me the 10 day decreasing dose. It would clear the rash short term but of course within a couple weeks it would come back since I wasn't gluten free. You would need to talk to your doctor about it since not all folks can tolerate prednisone but IMHO it is much less dangerous than the dapsone.



I had prednisone during chemotherapy treatment and did not have adverse reactions. I will keep this in mind. :)

In Topic: Celiac Rash - Dh

20 October 2012 - 10:18 PM

Hi Lyn, welcome to the forum :-) I personally stopped using dapsone because of some concerns I had with it, and I did not have access to regular blood monitoring where I am, so I'm afraid I don't have much experience to be able to say what to expect when. I stopped it maybe after a week, and I do remember being disappointed that my itch did not magically disappear. I think I had too much hope after reading of other people's experience.I know some people try it as a diagnostic measure - it's quick results are considered by some to be indicative of DH.
It sounds like you've been well and truly down the biopsy road. It's a shame they've all been directly over a lesion. I would consider going back once more to have an area next to an active lesion biopsied if you wanted to pursue a formal diagnosis. If not, as rosetapper says, if you suspect DH, a gluten-free diet is the best (only) route to clear it up.
Best of luck.



Thank you for the welcome! I have worried that I wouldn't see a quick result. Since I have not scratched any of the lesions to bleed today. . . I feel that is improvement. I sure hope everything works with Dapsone and I can go off it quickly. I have been gluten-free and also leaving out the iodized salt, after reading these posts.

In Topic: Celiac Rash - Dh

20 October 2012 - 10:13 PM

With a family history of celiac have you asked your doctor for celiac testing? If not is would be a good idea before you go gluten free. There can be false negatives with celiac testing so when you are done testing do give the diet a good strict try.
I also agree with the previous poster. Dapsone is a drug that has a lot of negatives to it. Since celiac itself can impact liver function if you can avoid taking to you should do so.
DH can take some time to resolve even on the diet and it is a good idea to limit iodine intake for a while when you go gluten free. And by the way your doctors that biopsied the lesions were clueless. They need to biopsy intact skin near an active lesion and the tests specifically for DH need to be done. If they are not looking for it they won't find it.



My blood test was negative and I am scheduled for a colon/endo the first week of November. I talked to my doctor about eating gluten free and resulting in a false negative. She said the villi *or whatever* would not heal in 2 weeks time. My cousin also tested negative to the blood test. Even if the biopsy comes back negative, I know in my mind that this is DH and I will see the difference in being gluten-free.