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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 FREE Celiac.com email alerts 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Dying
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19 posts in this topic

Went to the ER today after shooting myself with an epi-pen. Lovely experience.

Tried a millet pancake or two and noticed mouth and throat swelled. Told my sister, who had worked so hard to prepare me something that I"could eat to feel better." that I couldn't eat any more of it. She grabbed a claritin (allergic to benadryl) and when I started choking we diecided it was time to go to HOSPITAL.

Hives came all over 90% of my body (even in my hair). LOVELY...

I am still hurting on the insides. I want pain to stop. I want to die.

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Oh :( I am so sorry you are hurting. :(

Please don't give up on this life! We need you for when we launch the people with food allergies attack! ;)

Please hang on - I truly hope you feel better soon.

*hug*

- Michelle :wub:

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{{{{{{{{{{HUGS}}}}}}}}}}}}}} I hope you feel better soon. You may need to triple check EVERY ingredient that went into the pancakes including syrup or whatever... It sucks to be so allergic that you risk dying every time you eat. I feel for you, I truly do. Please don't give up, we need you around here! :D

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I'm so sorry you have not been feeling well. I hope you feel better soon. Hang in there it will get better and there is light at the end of this tunnel. Just know we are all here for support. Feel free to contact me anytime if you just need to talk.

I will keep you in my prayers

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Oh, I can relate. My epipen stays handy. So far, I have been able to get a Vistaril down quickly enough to avoid having to use it. I feel for you and hope you get to feeling better quickly. Your poor sister may never try to feed you again!

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My sister feels like she tried to kill me... lol. Sore throat today and light rash. Taking claritin.

The only other ingredients in it were eggs, almond milk (I had just drunk some and no issues), and maple syrup (had that a week ago with no issues).

I had an extra epi-pen at my school. Am keeping it close and the phone is close too.

I don't want to do the scratch test again. They take a razor to your back and 300 scratches till they bleed. Then 20 shots on each arm to find out which of those really reacted (because the reaction was so strong that it bled over into the other scratches). They do those rapid fire.

I have heard that there is a pin prick test. I have heard it is less painful. My allergist said that he didn't do the pin prick test.

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I have heard that there is a pin prick test. I have heard it is less painful. My allergist said that he didn't do the pin prick test.

I hated the pin prick test. I had over 140 needles poked in my arms. That was horrible and it turns out none of the things I was really allergic to. After this it set me back for about 2-3 weeks because of everything they had injected into my body(even at the small amount that they did)

York allergy testing may be something to look at . They have like 113 foods they test for.

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But they say that York testing is even less accurate than the pin prick and the blood testing.

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Definitely do the ELISA blood test (I imagine that's what York offers). I did the scratch tests and showed no reaction to any foods at all! The allergy doctor who offered it just treated me like I was neurotic.

The ELISA test showed allergies to eggs, all dairy (even goats milk! I never would have known) (Goats milk is gross :P) (eww)

Anyway - it showed allergies to sesame seeds, blueberry, papaya and the others I already mentioned. Definitely worth the money - and much better than conventional testing. According to Dr. Michael Murray (Encyclopedia of Natural Medicine): "The skin prick test or skin-scratch test commonly employed by many allergists only test for IgE mediated allergies. Since only about 10-15 percent of all food allergies are mediated by IgE, this test is of little value in diagnosing most food allergies."

The ELISA test checks both IgG (delayed) and IgE (immediate) reactions.

:)

- Michelle :wub:

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How much does that test cost?

I am having problems with IGE allergies right now anyway. But you may be right. I might try both.

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How good are the Immuno Labs? That's why I just did-I get my results on Thursday.

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I did my test through US BioTek - the cost was $165 for 96 foods. I did the "vegetarian" panel. Now I'm wishing I had done the full panel - because my naturopathic doctor suggested that since my dairy allergies are so high (literally off the charts) I may have allergies with beef :unsure:

Of course, I've never known anyone who's allergic to beef.. so she may just be a tad psycho ;) Who knows.

- Michelle

p.s. Other costs involved included the blood draw, shipping, etc. - that my doctor did for $24.

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is there a chance you are allergic to eggs? That is a fairly common allergen.

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I feel your pain. I am also wheat allergic as well as celiac, one time I went to P.F. CHangs with my celiac friends and the dinner was fine but the Takeout was used with spoons that had soy sauce on them and I had the takout the next night, and ended up first in urgent care sunday morning then after the second epipen didn't do anything, they didn't feel comfortable and sent me over in the ambulance, and I spen the day in the hallway of the ER because they didn't have enough rooms. Fun Fun Fun

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My God is watchin out for me. I know it. I have people who pray for me throughout the day.

God is providing his healin right now. I just need to wait on him.

He is the only hope I have.

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is there a chance you are allergic to eggs? That is a fairly common allergen.

I had two eggs with my regular breakfast this morning and spent five hours sleeping. I woke up to feel awful, and to being incredibly dizzy, my tupical allergic reaction....

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Someone just e-mailed me and asked if I had Stevens Johnson's Syndrome. That is the scariest syndrome I have ever seen.

I knew medicines could mess up your body and know that mine has been messed up by them currently, BUT....

That syndrome is where your outsides and insides are literally burned by the chemical reactions taking place in your body.

It shows up with lesions on your body (all over) and burning like you are on fire outside and inside.

I will be the first to say I feel like I am burning up inside when really inflamed and am worried that it really is burning me, but that is extrememly severe.

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Antmimi,

Many hugs for you! My thoughts and prayers are with you. I truly hope things get better for you soon! Hang in there, and things will get better!

-Peaches

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Thank you for the encouragement. I want to be BETTER, YESTERDAY.

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    • celiac disease is psychosomatic
      I was diagnosed a couple years ago and started gluten-free diet then. Test also showed damage to my small intestine. I explained to this doctor how I was barely able to get out of bed when I ate gluten in the pastand my intestines are still recovering from the damage. I only discussed this briefly. I consulted with this doctor concerning my dizziness explaining that I get dizzy/migraines when I eat gluten due to my celiac disease. I further explained that my dizziness has been cut in half since I went on a gluten-free diet so I am better able to get out of bed. The consult was about taking tests to figure out if something in my brain was causing my dizziness or this doctor specialized in testing the brain for impairments. In her summary, she stated that my memory impairments were probably due to being precoccupied with thinking about my psychosomatic symptoms. However, I only though about the test when I took it. And I only think about whatever task I am trying to remember when I try to remember it! I feel my symptoms rather than think about them all day long.
    • celiac disease is psychosomatic
      If you don't get the diagnosis you are happy with go to another doc.  Try to find a Celiac Friendly doc.  OR you can do what i did and give up and just go gluten free.  I didn't need a doctor to confirm that if my gas, bloating, migraines, depression, joint pain, rash, dry skin and brittle nails went away when i went gluten free that i must have celiac.  AND 6 months after i went gluten free on my own i had some blood tests repeated that i had done when they were trying to figure out what was causing my severe rash, all the things that were "wrong" with me or abnormal in the the first blood tests, went to normal on the second test.  INCLUDING MY THYROID LEVELS! Oh, i didn't mention that during this time they diagnosed me with early hashimotos.. 6 months later i was miraculously cured from this progressive thyroid disorder according to the blood test results.  I didn't have hashimotos to put it bluntly.   I am almost 10 years gluten free with no positive Celiac diagnosis.  But let me tell you this,  My daughter's neurologist did a DNA test on her 1 year after she too went gluten free and it came back positive for Celiac.  so.  js.     That's my story..  in short.
    • celiac disease is psychosomatic
      Were you officially diagnosed with Celiac Disease at the time she wrote that?  And, if so, for how long were you diagnosed & gluten-free but still complaining of those symptoms?
    • Weird Reaction
      Hi Richie By the sounds of it you could have gluten sneaking in somewhere, or maybe blood sugar issues,  or just plain anxiety, but it would be good to know for sure so you know what to do next. I think maybe the best course of action would be to see your GP and  tell him/her all your symptoms.  Book a double appointment as we say in the UK (but that isn't always possible!)  I dread seeing my own GP because as lovely as she is she is very fond of sending me for blood tests (which always seem to include liver function, thyroid and full blood count) which for someone with health anxiety isn't the recipe for a peaceful night's sleep!  But she is right, those particular blood tests, and others, can hold important clues when one has a lot of vague symptoms.   Celiac testing is of course another set of tests, which Flowerqueen has described well above.    If you do have all these tests and anxiety continues to be a problem, whether caused by by celiac disease, another medical condition or just being a stand alone problem, one book that I would recommend that really helped me understand the condition is 'At Last a Life' by  Paul David. I found it an immensely helpful tool in my recovery.   There is also a website. http://anxietynomore.co.uk/   Keep us posted Cristiana      
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