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

Rash Pics
0

8 posts in this topic

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.

Allergic reaction rash 001

Allergic reaction rash 002 - Copy

Allergic reaction rash 013

: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!

0

Share this post


Link to post
Share on other sites


Ads by Google:

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!

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

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
      104,116
    • Total Posts
      919,451
  • Topics

  • Posts

    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,155
    • Most Online
      1,763

    Newest Member
    AndiR
    Joined