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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

Rash, Hives, Dh, I Really Have No Idea.
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Hello again everyone! It's been a while since I've posted, but I've run in to another problem lately and just wanted some feedback.

 

I was told that I have a casein intolerance and have since completely gone off of dairy. A few days ago, a friend had me try a dessert from Ecuador that had dairy in it (she's gluten free as well, so I knew it was safe as far as that goes). I had just a spoonful, but I've been having rash outbreaks on my elbows, abdominal area, my feet and ankles, and the majority of my back. I feel ridiculous, but I can't tell if it's hive s, DH, or something else. It could be a series of suspiciously placed mosquito bites, despite me staying indoors for the most part...

 

I've taken two benadryl since the night I tried the dessert, and my outbreak hasn't improved at all. Has anyone else run in to this? What do you take to help? 

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Without knowing exactly what was in the dessert, it is hard to tell.  Is there any way you can get more info?  They may use different fruits and such in their desserts, so you could have eaten something you never had before and are allergic to.  I have problems reacting to all sorts of things, and I will take two benadryl, then two more 4-6 hours later (per dosing on package) and that way I am very medicated through the night and it seems to help more than one dose does.  If they don't go away soon, you may want to get a doctor to look at them before the weekend starts, they may be able to prescribe something stronger, but usually pushing good old benadryl will help.

 

When I have whole body rashes, I like to take a mildly warm bath with epsom salt and baking soda in it.  Seems to soothe the itchy skin a little bit, especially when your whole body is broken out, you can't bathe in hydrocortisone cream! :)

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So I get crazy rashes too. Mine aren't from foods though. I get contact dermatitis and excema. When I get rashes all over like you describe it's usually from my clothes (either detergent or fabric softener). Talk to a dermatologist or allergist. They can help you with diagnosis and treatment. I have a steroid cream that clears mine right up in a couple of days.

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I also get hives - on occasion. But once they start, I can't get them to stop unless I take a lot of meds to treat them - Benadryl, a prescription anti-histamine, and prednisone as well. I had this problem before I was diagnosed with celiac - and was referred to an immunologist. He said there was no way to determine what caused the hives - but he believe that it was an auto-immune reaction - that we were only able to treat the symptoms since we could not figure out the cause. About a year later I was diagnosed with celiac - and started my gluten free diet. I have only had one outbreak in the two years since diagnosis. Everything that I have read says that one auto-immune disorder begets another auto-immune disorder. I am hoping that if I can keep my celiac under control that it will minimize or stop the hives.

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I also get hives - on occasion. But once they start, I can't get them to stop unless I take a lot of meds to treat them - Benadryl, a prescription anti-histamine, and prednisone as well. I had this problem before I was diagnosed with celiac - and was referred to an immunologist. He said there was no way to determine what caused the hives - but he believe that it was an auto-immune reaction - that we were only able to treat the symptoms since we could not figure out the cause. About a year later I was diagnosed with celiac - and started my gluten free diet. I have only had one outbreak in the two years since diagnosis. Everything that I have read says that one auto-immune disorder begets another auto-immune disorder. I am hoping that if I can keep my celiac under control that it will minimize or stop the hives.

It's good to know (for me) that you have to take such hefty meds - I've upped my dose a bit, and that has helped. 

 

I haven't seen a doctor for this because, unfortunately, I've had a lot of doctors treat me like a hypochondriac. I mean literally, years of me complaining about extreme period pain, and no communication was given to me about what it could be. No tests, nothing. I had a bad doctor when I was a teen living with my parents, and that has put me off. Now I have anxiety whenever I go to a new doctor, because sadly, I feel crazy, like they'll assume I'm making this stuff up. I tend to get teary eyed when talking to a new doctor because my anxiety levels get so high, and that's not like me. 

 

I did seek help from a GI doctor recently (a month or so ago) due to a long term bout of stomach pain after every meal, and all she did was take a blood test to see if I had ingested Celiac. According to multiple people on this site, blood tests are almost like trying to take a blood test for arthritis - aka, yes, it has signs, but that is just a really roundabout way of looking for the actual problem. 

 

Basically I'm a little lost. Would it be more beneficial for me to see an allergist or a Celiac specialist? Honestly, I am terrified that if I see a Celiac specialist, they'll have me eat gluten for the biopsy. I just.... I don't know if I can deal with that. I work a lot, and I'm trying to get a promotion, and can't perform well at all when I've been glutened. I haven't even been diagnosed with an intolerance, just IBS. My blood tests (I've had 2 now) always come back negative. Not to mention the fact that I work at a very low income job and can only afford so many different kinds of tests. 

 

How do all of you deal with the doctors? With the various health problems? I'm so tired of self diagnosing, but I feel like I don't have good resources in the are. 

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It's good to know (for me) that you have to take such hefty meds - I've upped my dose a bit, and that has helped.

I haven't seen a doctor for this because, unfortunately, I've had a lot of doctors treat me like a hypochondriac. I mean literally, years of me complaining about extreme period pain, and no communication was given to me about what it could be. No tests, nothing. I had a bad doctor when I was a teen living with my parents, and that has put me off. Now I have anxiety whenever I go to a new doctor, because sadly, I feel crazy, like they'll assume I'm making this stuff up. I tend to get teary eyed when talking to a new doctor because my anxiety levels get so high, and that's not like me.

I did seek help from a GI doctor recently (a month or so ago) due to a long term bout of stomach pain after every meal, and all she did was take a blood test to see if I had ingested Celiac. According to multiple people on this site, blood tests are almost like trying to take a blood test for arthritis - aka, yes, it has signs, but that is just a really roundabout way of looking for the actual problem.

Basically I'm a little lost. Would it be more beneficial for me to see an allergist or a Celiac specialist? Honestly, I am terrified that if I see a Celiac specialist, they'll have me eat gluten for the biopsy. I just.... I don't know if I can deal with that. I work a lot, and I'm trying to get a promotion, and can't perform well at all when I've been glutened. I haven't even been diagnosed with an intolerance, just IBS. My blood tests (I've had 2 now) always come back negative. Not to mention the fact that I work at a very low income job and can only afford so many different kinds of tests.

How do all of you deal with the doctors? With the various health problems? I'm so tired of self diagnosing, but I feel like I don't have good resources in the are.

MissHaberdasher...I've lost faith in doctors at this point. That's a hard place to be. I used to have such respect for them. It wouldn't be a bad idea though to go to an allergist to see if maybe you have other food allergies. Maybe find out the ingredients in that dessert first so you can tell the doctor what you ate.

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