• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Am I Doing Something Wrong? Can't Take This Anymore.
0

Rate this topic

17 posts in this topic

Recommended Posts

Ok so the bleeding DH on my back is pretty much scabbed over but now it is ALL over my chest and shoulders and some on my face cheeks and rear cheeks. I am not eating gluten..unless I am being CC somehow. It burns so badly, I can't wear a bra and my shirt actually hurts that it makes me cry.

If I am not eating gluten, why the DH, I don't get it.

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Have you tried iodine elimination? A lot of DH'ers find it makes it a zillion times worse. And DH hangs around for a long time, unfortunately. :( - longer than GI antibodies, that's for sure.

  • Upvote 1

Share this post


Link to post
Share on other sites

I haven't tried low iodine yet....It sounds next to impossible. Isn't there salt in everything? I will if I have to though.

Share this post


Link to post
Share on other sites

I am working on this myself. It is almost impossible but it can be done. Apparently most salt is NO iodine in stuff you buy. But sea salt isn't. I bleed so bad it scares me. I thought I was dying the first time my leg bled it was running into the toilet I was scared to death. The Derm was like....Oh it happens..>WHAT?

Share this post


Link to post
Share on other sites

I feel your pain Gluten-Free. I'm going through one of those myself which began in early Sept. & stillllllll going. I think ....... but won't finish the sentence for fear of jinxing myself. :lol: :lol: I did that once before & actually said it & BAM! the dh went nuts. So shhhhhhhhhhhhh......

Okay. DH can present at any time for up to 2 years ( & some references say :ph34r: 10 years :ph34r: :ph34r: :ph34r: ) after going gluten-free. The antibodies have to get out of the skin. So this can happen & no, you're not doing anything wrong. If my hubs & I didn't have a gluten-free household & we did not prepare ALL our own food, 99% of which is whole foods; then I would be totally freaking (okay, I am totally freaking but not b/c I think I've been cc'd) thinking that I was getting glutened from somewhere. But since I am 110% positive I'm not getting gluten from anywhere then I know this is just what it does.

NOW. What I would really like to know is how the freaking antibodies get out of our skin? I have never found any reference for that. But if I had any clue & could help it along....... Boy & HOWDY ---- I would do whatever it was! WHATEVER!!!!!!!

  • Upvote 1

Share this post


Link to post
Share on other sites
Ads by Google:


NOW. What I would really like to know is how the freaking antibodies get out of our skin? I have never found any reference for that. But if I had any clue & could help it along....... Boy & HOWDY ---- I would do whatever it was! WHATEVER!!!!!!!

Leeches come to mind :rolleyes:

  • Upvote 1

Share this post


Link to post
Share on other sites

Leeches it IS! I'll run right out tomorrow & get a couple thousand. :lol: :lol: :lol:

Share this post


Link to post
Share on other sites


Ads by Google:


Ok so the bleeding DH on my back is pretty much scabbed over but now it is ALL over my chest and shoulders and some on my face cheeks and rear cheeks. I am not eating gluten..unless I am being CC somehow. It burns so badly, I can't wear a bra and my shirt actually hurts that it makes me cry.

If I am not eating gluten, why the DH, I don't get it.

I found I was eating what I thought was corn chips and found out later the restaurant had changed to flour/corn chips. Maybe you can review your food intake? I was a salt freak and stopped using any salt unless it was sea salt w/o iodine. I am on Dapsone and I really feel it has been a life saver for me. I suffered for 7 months the intense itch, sting, burn and yes the blood. It seems these lesions bleed more than anything I've ever experienced. Must have something to do with the properties of DH.

I'm having a bit of a new breakout (in the place of healed lesions) on my lower back. I've been applying Tolnaftate 1% to dry these places. It has petroleum to smooth it on. . . seems to dry but not flake.

Share this post


Link to post
Share on other sites

I think that I am eating totally gluten free. I only eat a few processed things that are gluten free. I guess it just takes tine for the dh to go away.

I appreciate all of the help.

Do any of you not feel well when the DH is really going? I'm just really tired and achy and have no energy.

Share this post


Link to post
Share on other sites

I think that I am eating totally gluten free. I only eat a few processed things that are gluten free. I guess it just takes tine for the dh to go away.

I appreciate all of the help.

Do any of you not feel well when the DH is really going? I'm just really tired and achy and have no energy.

Yes, I find that happens to me too. Also I have noticed that when a dh flare is really getting going I actually have a little bit of a temperature. The temp. goes back to normal in a day or two.

Share this post


Link to post
Share on other sites


Ads by Google:


Same here with the low temp. Blows that we have to deal with this but it really is comforting to know that we are not alone in it all.

Do you ever get DH on your scalp? MIne is now coming down my forehead. I look and feel awful.

Share this post


Link to post
Share on other sites

Oh Gawd! The scalp!!!!!!!!!!!!!!! It's horrid just horrid! There are crusts & where there aren't crusts there is oozing. The hair gets stuck to your head. I will wake at night & the pillowcase is so wet with oozing I can't find a dry place for my face. In the morning the pillowcase is stuck to the pillow. It's disgusting & makes me feel disgusting. I've taken to washing my hair each & every night b/c the more dried ooze & crusts that build up seems to be the more it itches. I get ones just out of the hairline & they look awful. I have also had tiny, quick ones on my face & so far....... I live in fear of the day I get big old honkers on my face.

And my ears....it gets in my ears, on the edges of my ears, on my earlobes, INSIDE my pierce hole of the earlobe.

Share this post


Link to post
Share on other sites

I've actually been doing pretty good, thankfully! Even itching behind the knees is a rare thing for the last couple of weeks. I think I may be absorbing iodine better. For salt, I've been using the Morton canning & pickling salt. It has NO additives, not even for anti-caking. I quit sea salt for a while, went back to it for a bit and think I had some issues with it. Otherwise I do eat salted butter and eggs with yolks just fine. But I did have some issues with 1 brand of butter I tried, so there was something in there that bothered my system.

I did want to add that I'm still avoiding the sulfites, as well as MSG type ingredients. That helped a ton, also.

Share this post


Link to post
Share on other sites

Just one more thing to look at...some laundry soaps may contain gluten. I know Whisk is one of them.

Stress can also bring out DH. Maybe the stress of the holidays brought yours out? I hope it goes away for you. It's miserable!

Share this post


Link to post
Share on other sites

I too have rashes--have for awhile. It definitely got better when I went gluten-free, peanut free, and although I don't do the "low iodine diet"--I do not add *any* salt (or spices) to food...I only use pepper. At first, I thought things tasted bland--now I like it. When I do eat something that hubby fixed with salt--my rash gets more inflammed.

Another thought--this may or may not apply to anyone but--we can have other allergies that give us crusty, itchy, scaley, bleeding and oozy rashes. I found out my cell phone cover (rubber) was affecting my ears/neck/. I changed shampoo, conditioner, hair dye, and laundry soap a long time ago--but still had the rash on my neck, ears, forehead. It appears that contact allergies "spread" and go "further" than just where the contact of it is.

Now, I am working on getting rid of the rubber in my house (easier said than done)--cell phone case is gone--and in almost two days my ears are better since getting rid of it :D Shhhhh ;)

But, I still have a rash on my forehead--Guess where I found rubber elastic??? Last night--on my shower cap that is right where the rash on my forehead and scalp is (I also lost hair there too) :rolleyes: Sooooooooooooo, I am skipping on the leeches :lol: and buying a new hairbrush (new one with no rubber on it) and looking for something to cover my hair at pm for when I wash my face... Today!!! :D

Share this post


Link to post
Share on other sites


Ads by Google:


Well, if iodine is in salted processed foods, and if your only possible source of CC is processed foods, you can kill 2 birds with one stone right there.

Share this post


Link to post
Share on other sites

Are you eating anything with vanilla in it? While I don't get sick like a real glutening, I itch! It is the kind of vanilla that is supposed to be safe for us. Dairy and soy also give me gluten like symptoms, itching, dry skin, hair loss, sleep problems, etc. So, no gluten, including vanilla and white vinegar, no soy and no dairy... skin and hair does great and no itching.

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
      108,109
    • Total Posts
      939,724
  • Member Statistics

    • Total Members
      66,096
    • Most Online
      3,093

    Newest Member
    grgygrrl
    Joined
  • Popular Now

  • Topics

  • Posts

    • Thanks desirun. I have takenhim off gluten and he has improved out of sight. Only times he hasbeen sick since was when he ate something with gluten. His 14 yr old brother has just been diagnosed with type 1 diabetes and now coeliac screen has come back positive for him as well. Ttg was 745. normal is anything under 20.  Waiting on gene test for him before scheduling biopsy. Makes it more likely that my younger son does have coeliac now I think. Will also be getting my daughter tested asap. 
    • I've done a lot of "hotel hobo-ing" pre-gluten-free and post-gluten-free. Previously, I did a lot of traveling for university sports and was concerned with saving money/having reliable food that would be nutritious while competing. Now I am more concerned with not getting poisoned. Bring [dry] rice or corn grits and cook them like oatmeal using either a kettle at the hotel or in the microwave. This does not take up much room in a bag for flying. I personally make my own rice grits using my coffee grinder (do not use brown rice though - it'll take a long time to cook!), but you can probably buy them pre-made.  You might also be able to snag single serving honey, peanut butter, jam, sugar, salt from the hotel itself if you're super thrifty . But I usually just buy a jar of peanut butter, tub of yogurt and some fresh fruit or vegetables from a grocery store. Maybe some jerky if I'm feeling fancy.   If the hotel room doesn't come with a kettle or microwave, you can ask for one. I have never had a problem asking for either a kettle or a microwave when I told the staff I had "severe food allergies" or a "medical reason." . You could also use the coffeemaker to boil water/prepare stuff, but I would not if you are sensitive. Lots of people like old, gluten-eating me use the coffeemaker to cook instant noodles and oatmeal (yes, it does actually work). I would hazard that unlike the mugs/cups they give you in the room, the coffeemaker only gets a superficial rinse between customers. I personally bring a single use drip cone and filters for my coffee or just get the hotel coffee.
    • If it were my child, I'd keep him off of gluten and dairy as recommended by the dietician, especially since he's not well and this is possibly celiac.  It won't hurt him to be off of gluten and he may even improve, but if this is celiac disease or gluten intolerance, he will not improve on the gluten.  Right now your goal is for him to be well as soon as possible. I personally would wait until your son is healthy and recovered to even consider reintroducing gluten for a challenge. There is nothing worse then not having clear answers. I would encourage you to be persistent. Eight weeks is not typical for a "bug." Follow your gut, if you are getting the cold shoulder see another doctor/doctors.  Get and keep copies of all test results as part of your son's history to help new consults avoid retesting and to help determine the next steps in his care. Have you seen an allergist...?  
  • Upcoming Events