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      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

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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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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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