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Intense Itching Rash


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#1 jiggles

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Posted 31 August 2013 - 07:57 AM

Still getting intense itchy rash a year after gluten free ,

can anyone tell me please, would it be pointless asking for a biopsy after being gluten free ?

It's so frustrating as I told the Gastro docs about this incredibly itchy rash which I scratch until I bleed but no one suggested a biopsy ,

I really do appreciate any help members give so kindly on here :) thank you all
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#2 ItchyAbby

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Posted 31 August 2013 - 09:35 AM

It is my understanding that after being gluten free for a year, a biopsy will likely be negative for DH. (I am still a bit of a newbie at this, so hopefully more experienced posters will chime in here) I had 5 biopsies - 3 while being gluten "light" and two after being gluten free and all were negative. It's pretty challenging to get a positive biopsy, even while still eating gluten. May I ask why you want a biopsy? Were you tested for Celiac at all? Are you wondering if it's not DH?

 

So, you have been gluten free for a year. Has the rash lessened at all since doing so? Have you also tried going low-iodine to clear things up? For some of us, it can take a while to clear up, even when we do all the "right" things. I just recently learned that stress - even in seemingly small amounts - makes me flare up. (I've been gluten free for 3 months) Other posters have mentioned that certain foods or getting a cold virus will make them flare. It's possible that you might have something else that triggers it as well.


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Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


#3 squirmingitch

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Posted 31 August 2013 - 09:40 AM

Sorry jiggles, it will do you no good to get a biopsy for dh now unless you delight in frustrating yourself.

 

Abby gave you good advice & asked some good questions.

 

I would only add:

Are you POSITIVE you aren't getting cc'd?


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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#4 jiggles

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Posted 31 August 2013 - 12:05 PM

Hi itchyAbby and squirmingitch , I love the names you chose :) speaks volumes , I wasn't going to post a reply because I am sipping a lovely glass of chilled wine , which is a pretty rare occurrence as I never thought it would ever happen ,

I couldn't eat or drink hardly anything at all without having awful symptoms which lasted so many years
and as most of you have been there too, you will know it's been such a long haul ,
I couldn't have done it without the support of my lovely hubby ,

I literally hung on to him like a child wherever he took me, and he took me to all my hospital appointments to try to find out what was up with me, and when I never had any strength left, he cared for me cooked for me and encouraged me to eat, and I am so grateful to him ,

He never gave up hope and I am ashamed to say I think did , I just felt so very poorly :(
so I do hope this will help others who may be feeling the same way , it does get better , yes with set backs but yes much better in time thank goodness , and I am so grateful to feel like I am doing okay :)

and yes I was just thinking about what squirmingitch mentioned ... looking back I definitely had lots of Cross Contamination even though I thought I was eating gluten free , that's why I think I still had horrible vertigo head aches joint aches, and the ongoing itchy rash ,

The doctors in another hospital found out I had malabsorption by doing a sechat test , they suspected Celiac disease as I had all the symptoms of IBS D plus early onset osteoporosis , hair loss , sickness nausea , low iron levels, weight loss, and rash as mentioned earlier

the doctors registrar was rushed that day and supposed to take a celiac blood panel ,

but he accidentally forgot to take it , and in the meantime I went gluten free which helped such a lot

anyhoo the Doc now wants me to do a gluten challenge , but I don't think I would ever want to feel that poorly again, been there done that :o scares me to think about it ,

So now I am mostly grain free as well as gluten free , and eat mainly whole foods and a little white rice now and again ,
I have photos of my rash that I showed to Docs but as I said no one seemed bothered so I didn't think it was relevant at the time ,

it is better than what it was though

hope I covered everything tho :P thanks agin
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#5 squirmingitch

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Posted 31 August 2013 - 01:02 PM

Well, you certainly sound like classic celiac & your response to the diet has proven that. If I were you I would just say you are celiac & that's that. Let me clue you in on the gluten challenge. Unless you REALLY, REALLY, DESPERATELY desire that official dx --- if it were me there's not a snowball's chance in hell I would do it! Many, many or maybe I should say MOST celiacs have such stronger reactions to gluten after they have been gluten-free that they never make it through the challenge. Now, with you, since you have the rash, you would be adding time to the end time of you getting rid of the rash & you are sooooooooooo likely to have such a rash flare that you will want to shoot yourself.

 

It makes me madder than hell that they screwed you up so bad with the testing!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Just another example of the medical community dropping the ball on us. :ph34r:  :ph34r:  :ph34r:

 

I have to tell you that it can be 2 years or even longer before the rash leaves you. You may wax & wane but the rash can flare, even when eating gluten-free, at any time. You see, the antibodies are deposited under the skin & it takes time for them to go away. Also, if you have the rash, the gluten challenge for blood work is likely to net you a false negative. Those of us with dh test neg. on the blood 60% of the time. you could of course, then get a dh biopsy but do you really want to deposit more antibodies under your skin just to satisfy those who let you down in the first place?

 

You have what you need. You know what your problem is now & how to treat it. You have a husband who is the most supportive. You're good to go girl & we'll be here to help & hold your hand & cry & rejoice with you.

 

Soooooooo WELCOME TO THE BOARD!!!!!!!!


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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#6 jiggles

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Posted 31 August 2013 - 03:16 PM

Squirming itch, thank you for your reply and welcoming me to the board :) it made me feel so much better knowing that I am not on my own about the gluten challenge ,
and while I think others who choose to go give it a go must be very brave , just the thought of it makes me shiver

and yes you are right , I notice that I am much more sensitive to gluten now after being gluten free and that was just a wee bit of cross contamination , just think what a full piece of bread could do :o

It makes me disappointed that for a year I was attending the hospital and eating gluten and my own GP repeatedly asked me to ask the gastro doctor to do an endoscopy
Which I did ask three times , but they still didn't do this or the skin biopsy :(

Oh I forgot to say I got a private genetic test which showed I have the positive HLA DQ 2 gene ,
and when I showed the Gastro doc this , he said he would do their own tissue typing test as others may not be reliable , and then also suggested gluten challenge

plus my hubby doesn't want me to do it either,
thanks again your post has really helped me understand a lot more about the D H biopsy , and the gluten challenge ,

Also itchybAbby thanks for your reply too , I didn't realize that Iodine could be a problem for a DH rash
I did eat salt for a month that said it had iodine in it ...
we used it each day on our food whilst we were staying in a relatives house whilst we were looking after their pet dog,
but that was a couple of weeks ago ,
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#7 squirmingitch

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Posted 31 August 2013 - 05:52 PM

YVW jiggles! :)

 

Ah! that's an issue too jiggles.... pet food.... you can get glutened from pet food if the pet is not also eating gluten free. Also, if hubs eats gluten or drinks gluten beer & you kiss...you can get glutened. So he has to brush & brush well before you kiss --- it wouldn't hurt to wait a bit either. 

Do you have a gluten-free household? It's possible to have a mixed home but hard to do & it wears on everyone's nerves trying to make sure no cc happens.

Also, having dh, you need to check all your topical products for gluten .... lotions, deodorant, hair products, makeup....all of it can end up working it's way into your mouth. You touch your leg which has gluten lotion on it & then touch your lips BINGO! you got cc'd.

 

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
 
 
For a low iodine diet (just don't eat the gluten stuff):

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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#8 sisterlynr

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Posted 18 September 2013 - 01:50 PM

Still getting intense itchy rash a year after gluten free ,

can anyone tell me please, would it be pointless asking for a biopsy after being gluten free ?

It's so frustrating as I told the Gastro docs about this incredibly itchy rash which I scratch until I bleed but no one suggested a biopsy ,

I really do appreciate any help members give so kindly on here :) thank you all

 

 

See a Dermatologist and ask them if they will do a biopsy of non affected skin and also a lesion with DIF.  (Direct Immunofluoresence exam)  Mine came back as Lupus although 2 doctors had determined the rash was DH.  Actually they now feel I have Lupus and DH.  Skin Lupus is itchy also and according to my Derms, the photos online (with the crooked little tail) are not the only manifestation of Lupus rash.  There are other auto-immune disorders that cause a rash also . . .trust me, been there and doing that.

 

I would most certainly see a Dermatologist and discuss Celiac DH. . . make sure they understand having the specimen sent for DIF exam.  Good luck!  


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Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~



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