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Member Since 01 Nov 2011
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#872631 Does This Sound Like Dh?

Posted by squirmingitch on 04 June 2013 - 04:56 PM

If you have been gluten-free for 4 years then you would not present with dh UNLESS you have been getting cc'd or glutened. You can test the rash by seeing if going low iodine makes it go away. If it does then you could be pretty darn sure you have been getting gluten from somewhere. BTW, the steroids will make dh better but the down side is that when the steroids are withdrawn; the rash comes back with a vengeance!

A biopsy of dh after being gluten-free for 4 years would come back negative. It certainly wouldn't come back positive. Did the doc take it from a clear place adjacent to an active lesion? If he took it on the lesion then he did it wrong. If it was done correctly then that contradicts that you are getting gluten from something EXCEPT for the fact that the steroids (topical or oral) will make the biopsy negative. So the biopsy that was done is completely useless whether it was taken correctly or not. It would take something like 2 months off the steroid creams before it will not affect the biopsy results.

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#870041 Lost A Parent To Celiac

Posted by squirmingitch on 21 May 2013 - 04:39 PM

Dearest Dani, I'm shocked & very,very sad at this news. I know you love both of your parents with all of your heart. I remember you posting photos of your mom's knees with the rash on them & thinking/wondering if that was dh & the other things you mentioned that made you think that she & your dad both could be celiac. As well as their thoughts on the subject of you being celiac.


The only thing I can say that others have not is that I am sure I've read numerous times that heart disease is also one of those things celiac is associated with. But then it seems like heart disease is associated with everything.


Aw Dani, I surely wish I could be there to hold you & let you cry on my shoulder until there were no more tears left. I'm crying for you now. No matter how old we are when we lose a parent; we are their baby & always will be.


Tight, tight hugs  (((((((((((((((((((((((((((((((((((((((((((((((((((((DANI)))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))

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#869960 Can Cat Food Cause Glutening?

Posted by squirmingitch on 21 May 2013 - 11:36 AM

Yup. Gluteny cat food can end up glutening you. Take the pets grain free. BTW, dogs are allergic to wheat, corn & soy. And when was the last time you saw a cat ins. a field of corn eating the corn? Than why is it in their food? Way too many cats getting diabetes these days.

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#869775 Diagnosed With Chronic Hives...but...

Posted by squirmingitch on 20 May 2013 - 11:46 AM

It doesn't sound like your rash acts like typical dh acts. Do you get it on both sides (bilaterally) at once?

There are many skin issues related to celiac disease & non celiac gluten intolerance --- yours could be any of a # of things. If you don't care about a dx then by all means go gluten free for a good 6 months & see what happens. Being gluten free certainly won't hurt you Beth. And your hives or whatever they are certainly seem to be tied to gluten consumption.

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#869367 Is This Possibly Dermatitis Herpetiformis?

Posted by squirmingitch on 17 May 2013 - 02:29 PM

No, it is not more or less itchy. It just itches like NUTS always. It doesn't matter if you scratch or not. It doesn't matter if you put clay on it. It's just plain HELL. It is called the suicidal itch & that moniker is in medical texts as well as the brains of we who suffer with it. Does that answer your question?

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#868910 Dermatitis Herpetiformis ... My Journey

Posted by squirmingitch on 15 May 2013 - 09:48 AM

tinpins has said she's not interested in Dapsone except maybe the topical form. I'm saying this for others who may come later & read this thread as well as the immediate. tinpins is allergic to sulfa as am I & Dapsone is in the sulfa class & it's iffy if she or I would be able to tolerate it even if she or I were willing to turn to oral Dapsone. I'm not sure what the topical will do as far as allergic reaction for either of us.


Refrigerator charts are good tinpins. :) You go girl!

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#868314 Dermatitis Herpetiformis ... My Journey

Posted by squirmingitch on 12 May 2013 - 04:22 PM

A few more items I would like to cover.

Gluten withdrawal. Use the Google search box near the top on the left hand side & put in gluten withdrawal --- you'll come up with hundreds of threads dealing with the subject. Familiarize yourself with it as you may experience it. Most of us do; some don't. My hubs was 1 of the lucky ones who didn't but probably b/c he was gluten light b/c of me for 5 months before we found out he had dh too.


We have not eaten out once yet. B/C of the risk of cross contamination (cc) is too great & dh is sensitive to the tiniest amount of gluten. Eat out at your own risk.


If your family would agree to go gluten-free with you at least IN the home; it would make things so much easier. They can eat gluten when away from home. But that's something you have to discuss with them & decide as a family. Hubs has to brush his teeth WELL before kissing or you can get glutened.


Here are some things you can eat to help get over the rough spots. Being as my hubs & I are both low iodine I will share some of the things we have found that fit both the gluten-free & the iodine criteria.

Namaste' Spice Cake Mix ---- YUM!!!!! It actually rises! And tastes wonderful! Namaste' products are made in a gluten-free facility & no dairy or soy is used. Yay! Frost with Duncan Hines Creamy Homestyle Classic Vanilla Icing --- no dairy in it.

Enjoy Life cookies are terrific & no dairy, soy, nuts etc.... They also make chocolate chips which have no dairy or casein & are great.

Frito Lay (google their gluten-free list) has gluten-free products but they also have a list of the ones they batch test --- we only eat from that list.

Mediterranean Snack Foods is a gluten-free facility totally. They make some baked chips & other stuff & they test & have the gluten-free certification org. approval. Check the individual products though as some contain milk or casein products. They use plain salt or sea salt but no iodized salt.

Vlasic pickles has 2 plants --- 1 they use plain salt & the other they use iodized salt --- you'd have to call with the code on each & every jar to find out which it was made in so we decided not to eat Vlasic anymore. Mt. Olive pickles use plain salt. Ball Park hot dogs, Jimmy Dean sausages & Hillshire Farms clearly label any gluten containing ingredients & none of them use iodized salt in their products.

Glutino's Genius bread has no milk or casein & uses plain salt.

Kosher products do not use iodized salt.

I tired Chebe mixes but we found them unsatisfactory. Hard on the outside & like sticky rubber inside.

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#868307 Dermatitis Herpetiformis ... My Journey

Posted by squirmingitch on 12 May 2013 - 03:18 PM

A quick & I'm sure not all inclusive (b/c Murphy's Law deems I forget something  :lol: ) run down of iodine & a lot of these things are not listed on the thyca site now but were at one time. Here we go:

raisins & grapes



all dairy

egg yolks --- whites are fine it's the yolk that carries the iodine


lima beans

turnip greens, mustard greens, spinach ---- "greens" as we call them in the south

peanuts b/c the skin carries the iodine

the skin of potatoes so peel them deeply

carrageenan (comes from kelp from the sea) watch out - I found it in sherbet & popsicles - not all brands but some. Carrageenan is a BITCH!

There are a few more names for derivatives of kelp or sea algae --- thyca lists them

white beans, kidney beans & a few more

iodized salt of course so use plain salt or sea salt

coconut, coconut milk, coconut flour

red dye #3


here's a link to the thyca low iodine diet:



OH! And make sure ALL your meds, both OTC & prescription, are gluten free & iodine free --- have the pharmacist check & then you double check the pharmacist. Don't forget to check your vitamins --- often containing iodine -- beware.

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#868239 Dermatitis Herpetiformis ... My Journey

Posted by squirmingitch on 12 May 2013 - 09:55 AM

I echo what Prickly said. And everyone's case is different. I hope you react like Prickly & the low iodine will do the trick for you quickly. Me, I'm 17 mos. & STILL iodine makes my dh go freaking insane. So only time will tell.

I DO have a good story to share with you guys today though. For the first time in 17 mos. I had potato salad! Ahhhhhhhhhhhhhhh, a small slice of heaven indeed! Since I couldn't have egg yolks b/c of the iodine then potato salad was out of the question. i tried 3 times making eggless mayo --- BIG FLOP! There is a product called Vegenaise (I used the original one) but it has to be shipped & kept refrigerated so you can't order it online & get it sent to you. None of my stores carried it; not even the health food store. FINALLY 1 local store began carrying it. HOORAY!!!!!!!!!! Maybe I've just been so long w/o mayo that I don't remember what good mayo tastes like but this stuff tastes like the very best Hellman's mayo. Truly! It  has some soy protein in it but it hasn't seemed to bother me. Maybe my gut has healed enough that I can tolerate a little soy now. And for the potato salad, I hard boiled an egg & removed & rinsed out  the yolk & just cut up the egg white. It was delicious!!!!! So this week I have had potato salad AND an egg white & sausage sandwich with mayo. Life just got a little bit more bearable. :D Small victories.

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#868137 Dermatitis Herpetiformis ... My Journey

Posted by squirmingitch on 11 May 2013 - 03:26 PM

Hi tinpins & welcome to the board.  :)

Hope is a good thing. But if it's dh then you may have a long row to hoe yet. But getting on the road to recovery is the first step & it does get better --- maybe not as fast as one wants but certainly it gets better.

If you have pets you need to make sure they are eating gluten free food --- grain free is the safest bet. Be sure to change them over gradually or they'll get sick from the sudden change.

If you don't want a dx or tests then your plan of action is quite simple --- strict gluten free --- it's no more complicated than that. As to a nutritionist..... you can find all the info. you need right here.

Learning the gluten free diet & getting it down pat carries a steep learning curve. The most innocuous foods can contain gluten so you must learn the rules & read every label EVERY time. 

Here are some links for you:



Interesting Reading on DH:
Descriptions of DH Types:
Help for the Itching, Stinging, Burning, Pain of DH:
DH Photobank:
Newbie 101 for celiacs

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#865938 Dermatitis Herpetiformis Question

Posted by squirmingitch on 30 April 2013 - 07:13 AM

Oh you're most welcome Marcus!

Yes, you're right. And you had been gluten-free for 2 years so that didn't help your blood panel. IMHO you would need a super long gluten challenge to overcome the 2 years PLUS the (if you have dh) dh factor making it negative. And still you could turn up neg. on the blood. The problem is, if you have dh then you're probably going to have to wait & continue with eating gluten until the rash goes bonkers. And the rash can go bonkers all at once. Then you're in BIG trouble. My rash were here & there & here & there for years & then one day it went ever loving NUTS. Now remember that dh deposits the antibodies under the skin. Once they've been deposited you have to suffer for could be 2 years or even longer. You might be able to take Dapsone but that's not guaranteed --- plenty have not been able to tolerate Dapsone so you can't count on Dapsone being your answer.

All this is sort of a long way of saying ----- if gluten is hurting you then do you really need an "official dx"? You don't need anyone's permission to go gluten-free. You know that -- you went gluten-free before for 2 years. So unless there is some other valid reason that you must have that official dx then why not just save yourself some grief & go gluten-free now & never look back?

I can tell you that full blown dh is a BAAAAD MUTHA & I would tell anyone that if they can avoid it getting to that full blown point then do so without hesitation! Take a look in the dh photo bank at my photos & some of the others who have it really bad. You don't EVEN want to go there. If I could save just one person from experiencing the hell I've been through then I would dance with joy! There's a reason dh is called the suicidal itch & I know why. :(  :unsure:  :wacko:

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#865873 Dermatitis Herpetiformis Question

Posted by squirmingitch on 29 April 2013 - 05:05 PM

The biopsy really can only be taken during the rash b/c the biopsy HAS to be taken from CLEAR skin ADJACENT TO an active lesion. Read some of the posts on here in the dh forum. It will give you links to the proper way to take a dh biopsy AND PERHAPS MORE IMPORTANTLY how many derms screw it up even though they act like they know what they're doing! YOU need to be your own advocate & look over their shoulder & make sure they get it right or else you'll be frustrated & wondering perhaps forever. You don't want that! You have to be firm & print out how to take a dh biopsy the proper way & TAKE IT WITH YOU & SHOW IT TO THEM. Once in a while you come across a derm who knows what they're doing but the odds are against you okay? So take care of yourself by making sure it's done correctly the first time around.



DO NOT stop eating gluten until the biopsy results are back. DO NOT eat gluten light until the biopsy results are back. DO NOT think you can go gluten-free & then eat some crackers a couple days before hand --- it will not work. And all of this applies until ALL testing is complete & results are in & you KNOW that everyone did everything right if you are going to have a celiac blood panel &/or endoscopy. And I will repeat what I've told a 1,000 times ---- celiacs with dh test neg. on blood & endoscopy more often than not. The antibodies are in our skin & that's what causes the high rate of false negatives on those tests.


AND topical steroid use or oral steroid use within roughly 2 months prior to dh biopsy will yield a false neg. biopsy. And I don't care WHAT the doctor says contrary to that.


Good luck & we sincerely hope you do not have celiac disease & especially dh!

But if you do --- we're here! Okay?

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#855674 Lab Test Results-Frustrated

Posted by squirmingitch on 24 February 2013 - 01:56 PM

I might add that many of us have problems with soy so you could try eliminating that also.

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#851809 Does Anyone Else Experience This?

Posted by squirmingitch on 02 February 2013 - 07:25 AM

I am 100% off of gluten. I have made sure that I don't have any contact at all if I can help it. I still break out in these rashes. I don't know what could be causing it. The doctor says it's allergies. I am off gluten, chocolate, and anything with dyes or colors. It doesn't seem possible to live without breaking out in a rash. Sometimes I just wished I lived in a bubble. Does anyone else feel like that?

Raising hands & jumping up & down here! Me, me, me, me, me --- where's my bubble? :lol:
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#848297 My Media Pop Up

Posted by squirmingitch on 13 January 2013 - 10:07 AM

I would like to upload some photos. I have gotten a pop up that says "My Media" but my My Media is empty. How do I access My Media for me so I can upload some photos to it?

Or how do I upload photos to a thread? I see where some people have posted photos directly on a thread without having to put a link to photo bucket or some such.

A couple weeks ago I read somewhere on the board that we could upload photos directly from our own photo galley on our computer. ???????? I would love to be able to do that.

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