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Unresponsive Dh To Gluten Free Diet?
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I've been gluten free for roughly 4-5 years and my GI/endoscopy/blood results have all normalized but my DH rash is still there.

I'm not positive it's DH but my dermatologist strongly believes it is; it's been biopsied but always inconclusive. She says I have to be eating gluten for the DH markers to show up on biopsy, so it's normal for the results to be inconclusive. I know that when I'm glutened, it flares up badly and starts itching. While on the gluten free diet the itching subsides, but the rash has never gone away, so it's only partially responsive.

...after 4-5 years. And I'm very careful with my diet. So what do you guys think? I just got prescribed dapsone 50mg so I'm not sure how long results will take.

Any thoughts?

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I'm not surprised by this because I have seen literature that says the antibodies can stay in your skin for up to 10 years.

So if you think about it...each time you have an accidental glutening and are depositing new antibodies you could theoretically be starting the 10 year clock running again. I have been strictly gluten free for 18 months now and am very discouraged at the thought. My rash has improved, but is definitely not gone.

If I could take Dapsone I definitely would. 50mg may not be enough, you may have to raise the dose. I started at 50mg and got some relief, then raised up to 100mg. At 100 the itching went away and the lesions started healing, but my bloodwork was not good and I was very weak with terrible headaches so I had to discontinue. The side effects can be really bad, but there are some people who can take it no problem. In my opinion they are the lucky ones.

On another note...are you aware of the iodine connection? Iodine in your diet can cause the antibodies to flare up and blister. Iodine is present in eggs, some dairy, asparagus, vitamins, some medications, seaweed, ocean fish and table salt. Until I found out about the iodine connection I was very frustrated because my skin was awful...I was eating a lot of eggs, asparagus and seafood because they are gluten free. After I eliminated gluten and iodine both, my skin improved a lot, but as I said before, I am still suffering with DH after 18 months gluten free...the improvement has been very gradual.

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I have a theory about MSG and related items (glutamates) causing DH to flare up, and I recently saw a thread about riceworks chips that adds a bit to that theory. Check out: http://www.msgtruth.org/ as well as http://www.truthinlabeling.org/ to see what foods or ingredients may be suspect. I'd be interested in your observations about whether any of that might fit for you?

Also, have you tried or do you take any probiotics? As well as taking a good multivitamin perhaps? One or both could be helpful. With that, I'm only a little over 2 months on a gluten-free diet, and some days are better than others as far as the DH. It is overall much better already, though.

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I have DH and have been trying to heal it for a year and 4 months. Getting there. But I have to restrict iodine. For that follow the Thyca.com low iodine diet. Iodine keeps the antibodies active.

Also, I swear my DH reacts to salicylates so I follow a low salicylate diet too.

Salicylate sensitive people react to benzoates which are in a lot of foods especially soda's juices and anything bottled. Watch for a reaction to that.

In addition to benzoates, salicylic sensitives are intolerant of annatto, yellow food coloring, sometimes all food coloring.

Dairy and eggs make me react likely to the iodine.

Carageenan, guar gum and xanthan gum make me react.

Trace gluten will cause a reaction to last for weeks.

It has taken me a long long time to figure all of this out.

Ibuprofen can worsen DH or cause it not to heal.

You will have to do some detective work.

My solution was to go paleo and avoid all preservatives. It has worked very well.

Mark's Daily Apple.com if you are interested.

I had a horrible reaction to Dapsone in spite of the fact that it worked great for 2 weeks. I got a rash all over my body of raised pinpoint sized dots and that ordeal set me back a bit. So watch how you feel. I think anemia is commom too.

If I drink a coke and eat m&m's I will react for weeks. That is food coloring in addition to benzoates.

I don't want to overwhelm you with all of this information...just trying to share because it took freaking forever to figure out. But it worked. I am also not saying these things cause DH. I'm just saying those with DH are sometimes also sensitive to the salicylate family and there is research about salicylates and DH and reactions.

I can't lay my hands on it now but Prickly pear has the information too so hopefully she will chime in here.

DH is maddening. I wish you well and hope you heal fast.

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This discussion is definitely thought provoking and while I was lying awake itching last night I started thinking about the fact that some of the information I have seen about this frustrating condition indicates that it may not be completely due to celiac/gluten sensitivity. So, no surprise that some of us are having a tough time getting rid of it. I went out to the web and gathered some examples that seem to indicate that, although it can (frequently) be associated with celiac, the cause is unknown.

From WebMD

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Completely crazy-making, thinking about all this. I'm really bummed out that after 4-5 years gluten-free, you still have the rash. It's only 10 months gluten-free for me and I'm not seeing much change at all. In fact, it's spreading to new places.

I tried dapsone last spring and only lasted about a week before the side effects made me stop taking it. I had no relief from the rash in that short time. Not everyone has side-effects and it may work for you. I'd totally give it a try at this point.

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This discussion is definitely thought provoking and while I was lying awake itching last night I started thinking about the fact that some of the information I have seen about this frustrating condition indicates that it may not be completely due to celiac/gluten sensitivity. So, no surprise that some of us are having a tough time getting rid of it. I went out to the web and gathered some examples that seem to indicate that, although it can (frequently) be associated with celiac, the cause is unknown.

From WebMD

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EatMeat4Good,

At this point who knows! I am fixing to go on an elimination diet to figure out what is still bugging me. The other day all my lesions were calm and healing and I was all happy, then out of the blue I felt a tingle on my shoulder and there was this humongous blister! The biggest one I have ever had. As big around as an M & M. Now it is all raw and oozy and itchy. It was magnificent...just what a dermatologist would need to see to do a biopsy! I never could grow one like that when I was trying to get them to pay attention. I should have taken a picture.

Do you have a problem with chocolate...I think that is one thing that bothers.

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Uh Oh!!

Don't you dare tell me I can't have Chocolate!

Yes, hell yes I have a problem with Chocolate!

I LOVE IT!!!

I only eat Dove Chocolates.

Both Dark and Milk.

Is that a problem for you?

My last time I got CC'd...I had eaten Palmer's Chocolate covered peanuts. No gluten ingredients-cool. the label said Made in a facility that also processes tree nuts and peanuts...and that was it! So I thought yum. And ate the bag!

Then I got sick...rashes...googled...their website says that ALL of their candy is made in a facility that also processes wheat. I wrote them that this lovely message should be on their bags of candy and they just made one Celiac very sick.

Now I only eat Dove.

What chocolate do you eat?

So sorry about your big beautiful DH biopsy worthy blister/rash. :huh:

I hope it doesn't last long.

I can stay Paleo with Chocolate...but if you take away my Dove...I will go insane. I swear. :unsure:

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Thank you Hopeful! I guess anything is possible and thank you for sharing this. I sort of hate to throw people off suggesting a lot of these suspicions I have had...it certainly complicates the gluten free diet to be avoiding all preservatives, gums, salicylates and iodine. But if that is what it takes to heal this rash for some people then I'm certain that it is worth reporting our own results by experimentation. I was down to 2 sores that were drying up and then I caved after weeks of Paleo and ate Cheetos and Diet coke today. Arrgh...yes ma'am...my sores are blistering up and weeping tonight. Let's see, that verifies either the Benzoates, the food coloring, or the Iodine reaction right? Or was it cross contamination or another grain...corn? Salicylates too :unsure: I don't know still. :huh: But I do know that I should have stuck with my unsalted steak, green peas, and water.

Those Cheetos may actually (note I said *may*) confirm my msg suspicion, I wasn't aware they were gluten-free, and they're on the list of Frito-Lay products that don't contain MSG; but their web page says they are produced on the same line as products that do contain msg, and they are washed between batches. "Although the lines are washed between batches, a slight residue may remain on the line. Individuals who are extremely sensitive may be affected."

After tossing half of a very large bag of ruffles, I will no longer touch anything from them. Oh yeah, and aspartame (in the diet coke) is also an excitotoxin. Double-whammy.

Edit - I looked at their list again, and for cheetos they have 3 flavors that are listed as not containing msg, but the 'regular' ones aren't listed? So perhaps those do contain it....

Edited by ciamarie
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Yes they do!

MSG in the crunchy cheetos!

Darn it!

Oh well, at least they were gluten free.

And I think I just ate my last cheeto...waaaaaaa :ph34r:

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EatMeat4Good:

I can't remember which chocolate I was eating. I tried several. I'll give Dove a try because I do love dark chocolate and it is supposed to be good for you. Physicially AND emotionally! :P

CiaMarie:

I went to the link you provided. Wow! My mind is swimming. It seems to explain why almost any time I eat processed foods or try to eat out in restaurants (no matter how careful they say they are) I get some kind of reaction...either skin, gut or both. It is apparent that, for the most part, you can't trust the processed food manufacturers and that, along with the fact that they likely have no control over their ingredient suppliers, makes it hard to believe that there are many processed foods that are not CC with gluten, MSG, and who knows what. The new gluten-free weight-loss diet fad has also prompted many of them to rush products to market that are not good for true celiac disease sufferers. Seems like any time the food industry removes something (fat, sugar, gluten, MSG) they replace it with something as bad or worse!

It stands to reason that after the gut heals from observing a strict gluten-free diet, the body is now more efficient at absorbing both nutrients AND the bad stuff. No wonder our bodies are freaking out.

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Whole foods. Screw the packaged foods. I MUST get used to eating for THE REST OF MY LIFE --- fresh fruits, veggies, & meats. Maybe some dried fruits & nuts such as Kind bars or Larabars.

It's the only way I can be sure of anything at all. Also makes elimination a whole lot easier since there is less to eliminate.

SIGH.

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With my experience with my son and reading lots of posts, people with DH seem to be sensitive to very low levels of cc. Good luck.

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From TrueStarHealth

"Not all people with DH improve on a GFD and/or medication. Preliminary studies indicate sensitivity to other dietary proteins may be involved. Some practitioners would recommend an elimination diet and/or allergy testing to check for other food sensitivities.

Thank you for posting this! I couldn't understand why my DH seems to flare up with corn (which I am allergic to, but is in a medication I need to take occasionally) and some other gluten-free foods that I'm allergic to.

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When my rash first developed I was given several rounds of prednisone until I could get in to see a dermatologist and then again until I could see an allergy specialist.

Now I have betamethasone for my arms and protopic for my face. :( Both of which will get rid of the rash, but only when used religiously (hooray for skin thinning!)

Unfortunately the problem isn't lack of steroids so drugs aren't going to fix it unless you want to use them forever.

Oddly enough, I realized one day after crying about my "hopeless" situation that the rash on my cheeks had cleared up.... from the salt in my tears. Have you ever heard that old saying "rubbing salt on the wound"? Well apparently it's kind of a good idea! When my rash flares up I will rinse it with salt water, I am not sure how it works but I think the irritation helps your body to realize it needs to flush out the toxins and encourage healing.

I find it also helps ALOT to stop eating sugar.

And this may sound kind of weird but if you wrap your arms in saran wrap before you go to bed the rash will be gone in the morning, this works better if you use a moisturizer too like coconut oil or vaseline. BUT if you don't get rid of toxins first, your skin will still itch like crazy even though the rash is gone. So I usually have a "ginger bath" whenever I eat something gluteny by mistake, it makes you SWEAT and I think ginger also has anti-inflammatory properties.

Hopefully that was somewhat helpful and didn't sound too quacky.

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    • I am sorry that you are sick!   Unfortunately, all celiac testing requires you to be on gluten.  😔.   Testing is usually not over until you get an actual diagnosis, but it appears that you may very well have celiac disease.    Here is more information: http://www.cureceliacdisease.org/screening/ http://theceliacmd.com/2015/06/six-reasons-to-test-for-celiac-disease-before-starting-a-gluten-free-diet-3/ in the meantime, you can eliminate dairy products temporarily.  It may provide some relief.  
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    • The gluten-free diet (GFD) is the only validated treatment for celiac disease (celiac disease), but despite strict adherence, complete mucosal recovery is rarely ... View the full article
    • What's an " iodine test"?  Haven't heard doctors doing that to diagnose DH.
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