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Member Since 01 Nov 2011
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#950474 My Turn For Possible Dh

Posted by on 25 August 2015 - 03:36 PM

Yes, it can take years for some for the rash to subside.


Yes, the ENT is right -- it does look herpetic. That's WHY they call it dermatitis HERPETIFORMIS Mr. ENT!!! It presents in a herpetic manner. That does not mean it's herpes!!!!! 


Yes, the rash can present any old where on the body so if it presents on the nose then it presents on the nose.


You already know that in order to test for it you have to do a gluten challenge. I don't blame you for not doing that. i wouldn't either.


I CAN think of a reason it cleared up while you were taking doxycycline. Follow me here ~~~

The medication of choice for dh is Dapsone which is an antibiotic but it can cause big, bad, liver problems & one has to be monitored closely with blood tests while on Dapsone. Dapsone is a sulfa drug. After Dapsone are a number of antibiotics, mostly also sulfa drugs but here are some that are used. Sulfapyridine, sulfamethoxypyridazine, colchicine, cyclosporine, lymecycline, nicotiniamide, and TETRACYCLINE. All of those are considered to be less effective than Dapsone but then we are all individuals aren't we and what works for one may not work so well for another. At any rate you were taking an antibiotic in the terramycin class. 


Now, I believe you when you say you are rabid about not getting cc'd. BUT we want to make sure something hasn't slipped under the radar here so don't get upset okay? We just want to check some things & make sure those aren't exposing you to gluten b/c it is entirely possible that this is coming from a low level gluten exposure & it's keeping the rash firing on you. Here goes:

Kissing any gluten eaters when they have not thoroughly brushed their teeth first?

Exposure from kids gluteny hands or cheeks?

Pets -- pet food that contains gluten -- you can breathe it & gluten dust goes down your throat or kissing your pets with gluteny mouths or after they have licked themselves & gotten gluteny fur.

Vitamins, meds, OTC meds and things like probiotics.... do you make sure none of those contain gluten?


Last but not least. Do you eat oats? Certified gluten free oats? If you answered no to the items I listed above but yes to oats it is possible you are 1 of the 8% of celiacs who actually have a reaction to even certified gluten free oats. I am. That one took me a long time to figure out! 

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#950115 Our Eloise In Uk For Organ Transplant This Pm

Posted by on 16 August 2015 - 10:40 AM

Raven, is this the double lung or the pancreas or all of them - do you know?


And while we're at it folks, let's not forget that some child lost their life and that's why the organs are available so let's remember that child & that child's family in our prayers too.

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#946838 Does The Biopsy Mean I Have Celiac? New To All Of This.

Posted by on 09 June 2015 - 11:07 AM

You need to continue eating gluten until AFTER the blood tests!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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#944084 I Have Celiac.. Does He?

Posted by on 15 April 2015 - 09:35 AM

I totally understand. That's what dh does. Not to say other things don't do that but I don't know why derms are SO resistant to ruling out dh by doing a biopsy for it. Doctors are so obsessed with doing all kinds of tests to rule things out but when it comes to celiac or dh they suddenly know it couldn't be that & shut down on the notion that it won't hurt to at least rule it out then. Grrrrrrrrrrrrrrrrrrrrrrrrrrr! Stamping feet & pulling out hair.

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#942669 Recently Diagnosed, A Couple Of Questions Regarding Cancer

Posted by on 22 March 2015 - 05:52 PM

YVW! Be sure & read the Newbie 101 thread in the Coping section. There is a lot you will need to learn about how to properly eat gluten free and protect yourself from cross contamination.

Ask questions any time. There are no dumb questions. Okay?

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#941546 New And Saying "hi"

Posted by on 05 March 2015 - 03:38 PM

The huge question is...... did the derm take the biopsy from CLEAR skin ADJACENT to an active lesion? If not, then you will surely come up negative. So many derms do not know how to correctly do a biospy for dh and take the biopsy directly ON a lesion.


Let us know what the biopsy says. 

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#939843 Need Dh Help

Posted by on 05 February 2015 - 06:54 PM

Hi Crystal & welcome. It sure sounds like you are probably celiac. This may sound odd but you might be in luck. I have no medical evidence to back this up but I have a theory that the celiacs with dh who DO have strong GI symptoms are more likely to test positive on the celiac blood panel than those of us who have mild or no GI symptoms & from what you said you do have some strong GI symptoms. For this reason I would strongly urge you to go ahead with getting the blood work.


As others have stated - WHATEVER YOU DO, DO NOT STOP EATING GLUTEN, DO NOT GO GLUTEN LIGHT until all testing is done. 


Of course, if you begin having breathing problems then appropriate actions should be taken. It is possible to have an allergy to wheat AND be celiac at the same time.


Does anyone know if one can just walk into U of C without an appt.? Do they have an ER? Could Crystal just go into the ER?


At the very least, call them tomorrow & tell them what is going on & see how quickly they can get you in. Phone # 1-888-824-0200

http://www.uchospita...ialties/celiac/    for an appointment online


IF they can't get you in then try the jerk doc & take some print outs with you to him to help persuade him to run the blood panel for celiac. Make sure he runs the FULL panel & not just part of it. Here it is:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA


Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA
Total Serum IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG


If you need a referral to a derm then get him to do so. If you don't need a referral then find one yourself. Here are some links & I would advise printing them out to take with you to both the jerk as well as any derm you go to.












Dapsone & a dh biopsy --- If you take Dapsone it will make the rash go away & you won't be able to get a dh biopsy. The biopsy is taken on clear skin adjacent to a FRESH lesion & if you have no lesions then you get no biopsy. I'm sorry but that's the bitch of this. If you began Dapsone tomorrow & then the next day got a dh biopsy done b/c you would still have lesions --- I don't know if the Dapsone in your system would negate the biopsy --- I have never read anything about that & have never heard of any medical studies addressing that scenario. 

I would advise you to research Dapsone carefully before you jump on that bandwagon. First if you are allergic to sulfa drugs you may not be able to take Dapsone as it is in the sulfa class. Also, Dapsone is not child's play. You need to have careful blood monitoring while taking Dapsone. Dapsone side effects can be extremely serious & btw, one of those is that IT can cause a rash. Lovely eh?


What you CAN do right now is to go on a low iodine diet:



Iodine intake really aggravates the dh rash & can even make it flare when it has been quiet. NSAID's aggravate the dh rash. If you have to take anything then go with Tylenol as it seems to be the least aggravating. 


One question --- is this rash of yours bilateral? Appearing on both sides of the body such as both knees, both feet, both ankles? The dh rash appears on both sides of the body like that.


The dh rash can & does come & go at will whether you are eating gluten or are gluten free --- just be advised of that. Don't expect that within a few days of going totally gluten free that the rash will disappear never to return again. Going gluten free is not an instant magic bullet as far as the rash is concerned. Some people clear up in a matter of months & some take years -- we are all individuals & heal at differing rates.


Now. I will say this. You don't have to have anyone's permission to go gluten free so you could begin this minute HOWEVER you would not get a dx. Some people really require that official dx b/c the gluten free diet is not an easy one & they need the dx in order to stick to the diet --- dh will pretty much fix that though b/c no one can stand dh for very long. 

If you want a dx then you will need to do what has been stated here. I'm so very, very sorry. 


Ask anything anytime. And {{{{{{{{{{Crystal}}}}}}}}}}}}}

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#939217 Chef That Wants To Borrow Your Shoes...i'm Taking A Walk

Posted by on 27 January 2015 - 06:06 PM

Read every label every time. That's your mantra for the next 30 days. 

There are some tricks to discover if they've taken you seriously or have a good understanding of what it takes to keep you safe. If there are croutons on your salad before you send it back bury a sugar packet in it, then when they bring you a "new" salad, check for the sugar packet -- if it's there you know they just picked the croutons off & brought you the same salad back. 

Ask if they have a dedicated area for prepping gluten free.

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#938721 Very Discouraged!

Posted by on 20 January 2015 - 07:32 AM

Go back through this thread --- the Newbie 101 --- and make sure you didn't miss anything. I agree it would be best to take the household gluten free and also have him tested to see what his antibodies are doing. 



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#938257 Can't Put On Weight

Posted by on 11 January 2015 - 04:49 PM

Hi y'all!  :) As a southerner you might call me the queen of fattening foods. :D  :D Okay, I'll get serious now.

I was 103 lbs since I was around 13 yrs. old -- I'm 58 now. About 5 years before I found out I have celiac disease I began losing weight. I ended up at 93 lbs. when I began eating gluten-free. That was 3 years & 1 month ago. I eat a LOT. I'm 5'1" or a tad more. You want to talk about looking like a skeleton? Twiggy anyone? Did I mention I eat like a horse? No worries about getting enough calories here!!!! I probably eat enough for 2 people. I weighed myself & weighed myself & weighed myself & always the same thing....93 lbs. worse, on occasion I would be down to 91 lbs. :blink:  For 2 and a half years I weighed myself & got depressed every time the scale read the same. I knew I wouldn't gain at first but by the end of the first year I thought surely I could gain at least a pound. When the second year came & went with me stuck at 93 lbs. I couldn't take it anymore; it was too depressing. I quit weighing myself. It was about 4 months later when my jeans felt just a bit tighter than they had been. i stepped on the scale & surprise! I was up 10 lbs. to 103!!!!! I've held that 10 lbs. too.

This is just to let you know it takes time. It took me close to 3 years and I am rabid about not getting glutened. I haven't been glutened once since I went gluten-free and still it took me almost 3 years to gain.

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#938170 Please Help

Posted by on 10 January 2015 - 04:29 PM

Namaste products are free of peanuts, gluten, wheat, soy, corn, potato, tree nuts, dairy & casein. The Spice Cake mix is especially delicious! Here's a link to Namaste so you can see what they make. Lots of choices there!


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#937976 Chef That Wants Your Feedback

Posted by on 06 January 2015 - 05:52 PM

I know Colleen! The list goes on & on!  :D  :D  :D Oh yeh, coffee cake ~~~ I used to make one that had dried apricots & raisins in it ~~ I'm going to throw some in this one. I'm really stoked now & can't wait to try SO many of the recipes. Cinnamon raisin bread, pie crust, cheese bread & more! Wooooooooooo Hoooooooooooo!!!!!!!!!! Let the baking continue! :lol:  :lol:  :lol:  :lol:  :lol:

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#937974 Chef That Wants Your Feedback

Posted by on 06 January 2015 - 04:20 PM

Dear allergiescooked, I tried the America's Test Kitchen biscuit recipe today. OMG! Freakingfantabulous!!!!!!!!!!!!!!!!!!!!!!!!!!!!! They nailed it! For the first time in over 3 years I had a biscuit that was a biscuit! Real, honest to goodness, walking, talking, living, breathing, home made biscuits! They are sheer perfection. If a gluten eater ate one of these biscuits I guarantee they would never know these didn't have any wheat flour in them. I simply can't believe it. I'm still in shock. My husband is still in shock. And they're easy too.


mateo2099, Get America's Test Kitchen "The How Can It Be Gluten Free Cookbook". You'll have to make them yourself but you can have REAL biscuits & gravy! And pancakes, and dinner rolls and bread, & pie crust and on & on. 


The cookbook is worth it's weight in gold!

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#937281 Questions: Skin Biopsy Of Dh

Posted by on 23 December 2014 - 10:14 AM

I understand your frustration IN FULL! And I'm sorry to say that I seriously doubt your HMO derm will do the biopsy correctly. It looks like you've been doing your research & you know the odds of getting a false negative on the blood test as well.


I hear you and I understand your entire rant & you are justified in it. But bottom line is bottom line now that you are aware of all the pitfalls involved. You don't need anyone's permission to go gluten-free. I have not regretted it for one second and am so very glad I did not prolong my suffering by trying to satisfy the reigning establishment. I knew what I had & no one needed to confirm that for me. I knew that the sooner I got started on gluten-free the sooner I would heal. I knew that the longer I ate gluten the longer it would take for me to begin healing. 


There is not a chance in hell that I will ever willingly eat gluten again & most especially not for any medical testing. It's not going to happen. Period. 


I am so sorry this has all gone down for you the way it did. And it must be particularly frustrating when the other derm recognized it for what it is & came so close to doing a dh biopsy. I have no clue why he backed out. Perhaps, just perhaps, if you wrote him a letter appealing to him once again, he might do it for you. 


You know your choices now & it's your decision to make. I wish you the very best. And I think you deserve at least a few hugs.



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#937021 Chef That Wants Your Feedback

Posted by on 17 December 2014 - 04:54 PM

Thank you for the information! It makes a difference that a gluten eater has tasted and can recommend a gluten free item.


I made the dinner rolls today that I had spoken of in an earlier post on this thread. They turned out fantastic! We are both very happy with the results. There are no objectionable flavors and the crumb is perfect. I intend to post about them in the recipe thread & post photos too as soon as I can find time.  

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