60 replies to this topic

[rosetapper23]

Just want to add that while you're trying to get the DH to go away, you should avoid ALL salty gluten-free processed foods because the packages never say whether or not a product's salt contains iodine. That's true here in the U.S., and it may be true there. I'm sure you'll be able to find non-iodized regular salt for your cooking needs, though. Iodine is added to salt and other products here because the government thinks we're not getting enough. This is a joke because a lot of the dairy and vegetables in our country (and Canada) became contaminated with high amounts of iodine after the U.S. experimented with nuclear bombs in the 50s in one of our western states. The radiation dissipated quickly, but the iodine they used was absorbed by the soil in the mid-Western and Western states of the US and in parts of Canada, causing iodine contamination in our foods. For a while, Canada ran a bulletin that the dairy in their country was so high in iodine, it wasn't safe for children to drink the milk. This isn't common knowledge, but the government was required to run a public notice of this occurrence about 15 years ago...and I happened to see it...so, finally, the mystery of how the iodine got into our dairy and vegetables was solved. A geologist friend of mine told me that once iodine is introduced to soil, it's there forever and becomes part of the food chain.

[pricklypear1971]

Some of your rashes look like mine, ESPECIALLY when I was using corticosteroids. Now that I'm off, they are more typically DH.

I have Hasimotos, have responded very well to gluten-free diet, and am supposed to have my rash biopsied in about a week-if there's one there. I've decided not to purposely gluten myself. I enjoy LIVING.

I also think I'm sensitive to salicylates: red dyes and preservatives also seem to set it off - I ate Riceworks chips and all heck broke loose.

Now that I'm gluten-free and off corticosteroids my rash WILL heal, if I don't gluten myself.

[Sam81]

In the US salt is labeled iodized...if it is iodized. There is also salt that is not iodized and it is sold right next to the iodized salt. The salt that is not iodized says this salt does not provide iodide, a necessary nutrient...or something like that. I don't know what you have overseas...but it would pay to find out.

There was another poster from overseas who wrote that the US puts way more iodine in their iodized salt than they do anywhere else. I don't know whether it is true or not...just thought I would mention it...but remember the foods that are high in iodine and limit them. You only need a tiny amount of iodine to stay healthy. Yes, we do not want to cause a deficiency, but we also do not want the antibodies to keep reacting to iodine...because then it will appear that gluten is not the answer....ya know?

It would be really nice if you could say what you said about Bechets to your Dr.'s. DH is thought to be rare too, but what if they could just do a biopsy for you? The fact that it responded to Dapsone is indicative of DH to some Dr.'s. But...I've never found any of them.

If they sell any type of Benzocaine product over the counter where you are, and if you tolerate it, it does provide relief albeit temporary. I stopped scarring myself when I found it.

I wish you the best of luck with the Dr.'s and I hope you post regarding your progress, as I am very interested in what you find to be true for you. Hugs...and congratulations for finding this site...smart girl! I was a bit slower in finding this goldmine than you were!

Thank you, this site IS brilliant and minimises the over whelming feeling I get at the thought of removing Gluten and Iodine from my diet - as well as being vege (by choice). My dr has offered me medication to help the itching but I have opted for steroid creams/ointments as I am still breastfeeding and have recently found out that breastfeeding can minimise the chance of my son developing Celiac DH. So if I do have Celiac DH I would rather give him the best chance of not getting it - even if means waiting longer for the rash to go. I am building up my list of evidence and research and keeping a food diary and plan to go in 2 weeks, armed with a strong case - Poor Dermatologist will probably deem me insane... !

[Fancy Nancy]

Popping in on this conversation. I too am awaiting positive biopsy results. My blistering has been HORRIBLE! The question is I was on Dapsone 100 mg for one month and had NO HELP from it. In a stupid moment I ate a lot of salt last night and I can feel blisters all over my face, waxy under the skin bumps that you can almost drag out of your skin - bloody, clear fluid. What should I suggest to my derm (he's not convinced it's DH and told me to eat whatever I want last week. Not! I'm still gluten free until I know)to try for treatment? Up the dosage of Dapsone even though it didn't do a thing for me, I actually got worse. Or, what alternative treatment??? I've been gluten free for six weeks. Thanks!

[mommida]

I hope you find a doctor who knows how to diagnose you.
Celiac testing starts with the blood panel, then an endoscopy with biopsy. Gluten free diet is started and the patient should start to feel better and this is the confirmation stage of diagnoses.
Dh diagnoses can start at the dermatologist with a skin biopsy in the correct place for the outbreak. You can continue with the Celiac dianoses at this point because the same damage is present in a DH person's gut.
I had a "rosacia" out break about 2 years ago. First doctors put me on lotions and potions, they didn't work. The dermatologist put me on tetracycline killed my stomach and did nothing for the rash around my mouth. It was spreading elswhere too (forehead, toe, no ryhme or reason for that) Then the folks on this site were helping someone else with the same problem ~ probable ZINC defiency. I stopped taking the antibiotic and started a multivitamin ~ rash was gone as soon as the flared up stuff could heal. Now some vitamins don't have any toxicity levels, but a good majority do. Try taking a gluten free daily multivitamin. That brings us back to you may be Celiac or have some other gut issue if you are having such a vitamin mineral deficiency issue. So find a a doctor to work with.

[rosetapper23]

I would say that you are like many of us who suffer from DH--you simply CANNOT tolerate iodine. Now that you've seen the result of iodine ingestion, you'll need to try everything you can to eliminate any and all iodine in your diet. This may be why the blisters have not disappeared after six weeks of being gluten free. Don't eat seafood, iodized salt, salty foods, processed foods, or dairy (unless it's organic). For me, NO healing began without eliminating iodine...and then the healing was fast.

By the way, others on this forum have mentioned that Dapsone did not resolve their DH.

[Sam81]

I am not gluten free yet as I've been told not to until skin biopsy and endoscopy, Im keeping a food diary purely to illustrate foods high in gluten and wheat are setting me off.

Dapsone did seem to supress everything for me - I just thougt it was behcets - not DH. Rash did go though...

Sorry Rosetapper23, - just realised you were replying to Fancy Nancy!!

[rosetapper23]

No, sorry, Sam--I should have made that more obvious. Please let us know how your tests turn out, okay?

[Sam81]

No, sorry, Sam--I should have made that more obvious. Please let us know how your tests turn out, okay?

Will do, dermatologist is 11 days away and counting...

[Sam81]

Ok, had dermatology app yesterday. Didn't see consultant first - saw registrar. She thought it looked like DH but didn't seem to know much so got consultant to look. He said it DIDN'T look like DH - some form of psoriasis or eczema, but basically took a biopsy to shut me up. The took one of clear skin (i think) and one of affected skin. I'm just hoping they test the right one for the right thing!

[eatmeat4good]

Unfortunately that is probably typical of most dermatologists. The Registrar knows more about what DH can look like than the consultants or the Dermatologists do. It is very common to be told it is not DH. But then to have the gluten free diet clear it up. I lived with the damn rash scarring my face and 3 chiefs of Dermatology told me it is neurotic excoriation....caused by me. Yeah, caused by me....ON GLUTEN!!!



I hope they did your biopsy right...and I hope you will let us know the results.

[ravenwoodglass]

It is very common to be told it is not DH. But then to have the gluten free diet clear it up. I lived with the damn rash scarring my face and 3 chiefs of Dermatology told me it is neurotic excoriation....caused by me. Yeah, caused by me....ON GLUTEN!!!

Yea I got a lot of that also followed with 'here's a script for Prozac'!

[pricklypear1971]

Yea I got a lot of that also followed with 'here's a script for Prozac'!

Geez. What's the universal doctors problem with DH???? I googled "rash iodine" and the only stuff I came up with was DH and iodine allergy. I don't think we have an iodine allergy from the positive results of going gluten-free.

What other rash is helped by withdrawing iodine????

[Jnkmp8]

Hi all.
I have recently been diagnosed with DH.. going gluten free takes time to clear it up... But in the mean time I bathe the rash in (I kid you not!) cooled Roobios/red bush tea--it soothe without stinging--& eases the inflammation caused. It helps to drink it too!! Good luck all--I'm still waiting for celiac diagnosis as my DH ETC A isn't text book!!! I have a gestro apt coming up soon so fingers crossed--as my DH affects my hands/mouth/throat& face--due to severity I've had to drop gluten...so my testing is very hit & miss!!
Wish you all itch free!!
Xx

[ravenwoodglass]

Hi all.
I have recently been diagnosed with DH.. going gluten free takes time to clear it up... But in the mean time I bathe the rash in (I kid you not!) cooled Roobios/red bush tea--it soothe without stinging--& eases the inflammation caused. It helps to drink it too!! Good luck all--I'm still waiting for celiac diagnosis as my DH ETC A isn't text book!!! I have a gestro apt coming up soon so fingers crossed--as my DH affects my hands/mouth/throat& face--due to severity I've had to drop gluten...so my testing is very hit & miss!!
Wish you all itch free!!
Xx

If you have been diagnosed with DH then you have celiac and no further testing is needed.