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Really good scratcher

Rash Pics

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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!

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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!

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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!

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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.

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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

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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.

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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!

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    • For the brown rice, it could be the fiber (assuming you mean whole grain rice, which still has husk on it). If I have been glutened recently, whole grain brown rice and other fibrous foods are not digested well by my GI tract. Because I get non-GI symptoms, I am quite sure that the cause is not gluten. You might stay away from whole grain rice for a bit, or transition slowly (mix white/whole grain in increasing proportions as tolerated). For pork, it is unlikely that the type of feed would have an influence on the gluten content of the meat. Gluten is not transferred into the muscle (meat) or eggs of animals. It stays in the GI tract. There could be some small chance of contamination from the GI tract during butchering. I don't know much about commercial butchering/abattoirs, but I think that this is heavily guarded against due to the risk of fecal contamination. Sometimes, the thing we think is making is sick is in fact not - sometimes it is something else that we do in association with that food. Perhaps there is a seasoning that you use with pork, or perhaps you use certain kitchen tools for pork that are contaminated. I used to always get sick when I cooked butternut squash. It was because I was using a hacksaw to cut them, which was contaminated with drywall (drywall contains wheat). If you are buying your meat from a small, independent butcher (where they bread/flour meat in-store), you might think about switching to buying big box grocery meat. At big box grocery stores, they just section up the meat that is pre-butchered. You could also be allergic to pork - this is rare, but some people are (especially those who are allergic to cats). Hope this helps.  
    • What pigs eat would note really get to your eating their meat, this might be different with something that you can not clean out well or eat part of the digestive tract like farmed crayfish, shrimp, or poorly cleaned fish/chicken. But pork...unless your eating part of the intestines the meat should not bother you if they ate even pure wheat.

      Brown rice, this could be a issues with CC, starches, fiber etc.  There have been major CC issues with grains and legumes in recent months. I suggest sticking to a safer brand like Lundenburg and or visually sorting your rice, and washing it before cooking it. Again it could also be a fiber issues or starches.

      Other thoughts some people bit by a lone star tick develop allergies to pork and or beef.

      Some people are just intolerant to certain foods, and we can develop many food sensitivities to just about anything with this disease. Often new or certain food intolerance can be linked to something we ate when we ate gluten and our body just has a associative issue that might go away in a few years. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
    • Brown Rice and pork are meant to be gluten free yet they set me off. Pork I reckon is due to them eating cereals.  Brown rice I have no idea although white is fine . Does anyone else get set off by them or is my body just strange?
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