Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Intense Itching Rash
0

8 posts in this topic

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

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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!!!!!!!!

0

Share this post


Link to post
Share on other sites




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 ,

0

Share this post


Link to post
Share on other sites

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):
0

Share this post


Link to post
Share on other sites

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!  

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,636
    • Total Posts
      921,534
  • Topics

  • Posts

    • I have 2 insurance policies, one with my husband's company and one through mine. I also stretch out the more major work into the next year, so I can make the most use of my benefits. So, a dental implant for me takes about a year for me to complete.  I have the post put in at the end of one year and the tooth made about 6 months later. Honestly, the insurance company probably hates me because I max out my benefits every year. You do what ya gotta do!  I still have to pay for some of the work out of pocket but about 75% gets covered. If you pay cash for procedures then they usually charge a lower price. Haggle with the dentist over price. They like getting cash.
    • Did your doctor check for SIBO, H. pylori, ulcers, etc. when he was obtaining biopsies to check for celiac disease?  
    • Oh, and as I mentioned in my own post on pain, xanax. I swear. I tried it just to deal with the occasional panic I had at weird scary symptoms and clueless doctors. I am not a fan of long term use. But I recently found that .25 mg seems to aid with the neuropathic pain. It does not go away, but it helps. 
    • It does sound like a Glutening and you are just a few months into the diet.  It might help if you read our Newbie 101 thread under the "Coping" section.   Here is some information about rice milk: https://www.verywell.com/is-rice-dream-gluten-free-562354 Many, many celiacs are often lactose intolerant temorarily or permanently if you are naturally genetically inclined.  When I am glutened, I lose the ability to digest lactose for a while.   Salad?  Great but it can be rough on a sore gut!  Think soups, stews, easy-to-digest foods that you prepare yourself until you feel better.  Did your folks give you salad after a bout of flu?  Or did you stick with jello and broth?  I am intolerant still after three years to garlic and onions (the lactose resolved, thankfully).  You have a leaky gut (Google zonulin and Dr. Fasano who is a leading celiac researcher to verify that this is true) and that means you can become intolerant to anything (hopefully, just temporarily).   If you are 100% sure that you have had no access to gluten....did you eat out lately?.....then see your doctor.  Remember, celiac disease symptoms can change.  And here is the biggie.....it can take weeks, months or years to heal from celiac disease.  Two months in is nothing, really.  Why?  It takes time to figure out the diet and time for antibodies to come down.  celiac disease is an autoimmune disorder triggerEd by gluten.  once triggered it can go on and on damaging your gut especially with repeated glutenings (accidental or through cross contamination). I hope you feel better soon!  
    • I concur! I literally feel your pain as well. Like, at the moment, lol. Did you have an endo to see inflammation or damage? I am close to begging my GI for carafate or something to coat and protect. How about testing your antibodies to see if they are still rising? I read somewhere here rice milk may not be a good option.  Folks here have also suggested to me to stick with whole foods. Limit processed. Especially stuff that is not certified gluten-free, like chex. I think small amounts of gluten are in processed foids and can add up. I too reacted to lettuce the other day like I was ingesting glass. My sibling  had a food sensitivity panel done and it came back positive for a few things he had been eating a lot of. He can now eat them, but had to cut them out of his diet. Lettuce is probably on mine.  I have been drinking carrot and pomegranate juice,  dandelion root tea with hiney, aloe water, lots of squash, fish. Mild, no garlic, no onions or hot sauce. No coffee. It sucks.  Inflammation can tick off other organs, you mention a "Pain below". Not exactly sure which side, but certainly call your doc Monday. Sooner if the pain increases.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,640
    • Most Online
      3,093

    Newest Member
    Kasia2016
    Joined