Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Rash Pics

Really good scratcher

Recommended Posts

Really good scratcher Newbie
Really good scratcher
Posted

O.K. I am not proud of these. I look pretty awful. This is how I have looked now, going on three years. I hope by continuing this new lifestyle, my skin will clear up. I understand though, it can take quite awhile. Sigh.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

:blink::o:blink:

Pretty rashy, I know! Plus for some reason, in these pictures I am retaining water, so these are not pretty.

Prednisone seems to keep me from retaining water, so my ankles look a little better today.

Now you know why my sign on is Really Good Scratcher!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

The photos are private dear. I can't see them.

Really good scratcher Newbie
Really good scratcher
Posted
  • Author

I'll go clear the privacy setting on Flickr. Just didn't want the entire Flickr world to see them. It's ok if my DH friends see them, LOL!

squirmingitch Veteran
squirmingitch
Posted

DH. No doubt about it.

The steroids are why your tests keep turning up negative. And once you go gluten-free then tests will turn up neg. Is it THAT important for you to have an "official" dx? Especially seeing as how you've seen how badly docs misdiagnose it?

I'm sorry but IMHO, I do not think you will be getting completely clear of the rash without outbreaks for quite some time. You say this is how your skin has looked for 3 years. If that is an indication ; then I believe you have it BAD. Those antibodies aren't likely to get out of your skin anytime soon. I really, really, HOPE I'm dead wrong about that but you need to be prepared for the long haul hon.

Stop fighting it. Embrace it. You CAN live without gluten!

kitgordon Explorer
kitgordon
Posted

Looks very familiar. 3 years?! I am so sorry, and hope it clears up soon. I've had it 3 months and going crazy with it.

JaneWhoLovesRain Enthusiast
JaneWhoLovesRain
Posted

Really good scratcher - oh my gosh, that looks nearly identical to my rash when I was at my worst!! However, I was never "officially diagnosed" with celiac, was told scabies/eczema/allergy. My dh biopsy was negative.

Mine came 2 years after going gluten-free, I think I had cc from my breakfast cereal. After giving the cereal up it went away but took about 3-5 months to get rid of 99% of it. In Sept I started eating 1-2 mini Lorna Doones a week and the rash is now back but nowhere near as severe as before.

Yes, the itching is the worst and you get adept fast at being a "really good scratcher." Felt like I was digging into my bones.

Three years is a long time to suffer with this I take it you haven't been "officially diagnosed" either, what do your doctors say?

Jane

Really good scratcher Newbie
Really good scratcher
Posted
  • Author

I am definitely doing the gluten-free life now. I am new at it. Learning a lot--and there is a lot to learn. It's a little overwhelming and kind of depressing to give up so much right now. I'll get over it and embrace it soon enough, but I know I'll handle it better as I go through the stages of withdrawal from gluten. I have to recognize this is a true, drastic lifestyle change. It is a drastic change from what I was able to eat before. It's going to be hard at first, as I learn about everything. I am so surprised as to the simple things that have wheat, or rye or barley in them. Lots of flavorings have wheat in them. I used to get beef broth and chicken broth for soups and stews in the winter, and most of the regular brands have a wheat base or some kind of wheat flour base in them! Salad dressings have wheat in them! Why? Then I'll have to stop going out to eat and we didn't eat out that often. Restaurant changes-that will be hard. Going out with friends--all things have to be considered. A lot! So it's new, I'm learning, and I'm going through stages of denial and acceptance. It's hard on my family too. I am the only one suffering these symptoms. Strange. Well, one of my sons has some similar symptoms-- so I will be asking him to be observant and then see if he needs tested. He's twenty years old. He says he is lactose intolerant, but it could be a celiac sign. He gets migraines too, fairly often. I had migraines like crazy in my twenties and thirties. I've already told him he may be more susceptible, and to watch his reactions when he eats gluten. I sigh heavily when I can't enjoy some of the foods I used to. Holidays this year will be especially hard. I make the best flour biscuits, but now I guess I won't be able to--at least the way I used to make them. My family will miss that-heck, so will I! I also used to make wonderful home-made yeast bread, but I guess not any longer--at least with the ingredients I used to use. I know I will have to investigate the other types of safe flours available for celiac's, but it will be so hard to adjust right now. It's just too new. Our food budget looks like it will have to increase for the cost of gluten free things. That will be hard right now too.

I thought it would be helpful to have the Celiac's diagnosis from the docs just for official records. I guess that's not needed for anything except for sceptics that can't believe gluten intolerance is a real thing.

I can make my own chicken stock or broth, and I can probably make my own beef broth too.

I am a great cook, and can follow recipe's really well. I am a great experimental cook. Just ask my hubby. He always tells me how good a dish I make, but he'll know he may never get it again because it was recipe #3257 and I won't remember how to do it again! LOL! I can adjust. I can learn to cook gluten free. I am just going through the initial phase of change right now.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


kitgordon Explorer
kitgordon
Posted

There are a lot of gluten-free options for cooking. Progresso's boxed broths are gluten free, and so are most of the HerbOx boullions. The first Christmas was HARD. If you start experimenting now, you may be able to come up with replacement recipes by then. It is great you are a good cook; people who don't like to cook find the adjustment much harder. There's no denying that it is more expensive, though. Not all salad dressings have gluten, either. You just have to read a lot of labels.

You can definitely do it successfully without an official diagnosis, as long as you trust your own knowledge that gluten is poison for you. I am self-diagnosed, and I certainly don't cheat. Of course, half my family has celiac, and accidental glutenings make me ill, so it was easy for me to be sure I had it. I don't particularly trust doctors anyway.

There are restaurants you can trust, too. You'll get the hang of it. It is hard and overwhelming at first, but your health is worth it.

Wishing you healing and an easy transition!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. ShariW
      - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

      In addition to gastrointestinal symptoms like diarrhea, I had gastroesophageal reflux that was becoming intolerable despite treatment with PPIs and antacids. When I went gluten-free, the GERD lessened tremendously (as did the other symptoms).
    2. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      Thank you so very much Scott. Just having someone understand my situation is so very helpful. If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    3. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to ...
    4. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748
    ebrown
    Newest Member
    ebrown
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      I think I am gluten intolerant

      By Scott Adams · Posted

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.