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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.

99.9% Certain, Though Undiagnosed
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Hi everyone :) I'm new to the forum (I didn't notice an introduction board, did I miss it?). My name is Kim, I'm 21, and I've suffered symptoms of celiac for years. I've had digestive issues the most commonly (constipation, bloating, abdominal pain), as well as headaches, fatigue, poor skin. Most recently I've developed a skin rash that looks suspiciously like Dermatitis Herpetiformis. I've been to the doctor twice. He says it's an allergy, but for some reason just prescribed me a second round of antibiotics. But, I digress..

I was just wondering, is anyone else undiagnosed?

I've decided to remove gluten from my diet 100 percent for the next 4 weeks. Then, I'll try eating something containing gluten and see how I react.. If it's bad, that's enough of a diagnosis for me. I don't see the sense of having a scope or more blood tests to prove it! This is my personal opinion. I'm just wondering if anyone else is "self diagnosed" so to speak.

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I am self-diagnosed. My Mom had diagnosed celiac and diagnosed psoriasis that went away after she went gluten-free. Knowing that both of these maladies run in families, I went gluten-free and MY psoriasis went away, plus other symptoms (like insomnia, brain fog, swelling ankles, heart palpitations, not to mention the minor digestive symptoms) went away too.

But I can honestly say that if I had insurance I would get tested. There is no doubt in my mind that I have celiac, but there is no way I can tell if I am getting better. I have read here that some folks FEEL better, but their follow-up tests show that they are still sustaining intestinal damage and they are still producing antibodies. They may not get sick with cross contamination, but they are doing damage just the same. No matter HOW careful you are, you WILL get glutened from time to time.

Another thing I would get checked if I had insurance would be thyroid and vitamin deficiencies. Those are both common in celiacs too.

So it's up to you but if you have insurance and can find a GOOD doctor, it might be a good thing in the long run to get tested.

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I really recommend you get tested before going gluten free. One, if it is celiac, your family members MUST be tested too.

Two, if you have celiac, you must be 100% gluten free for the rest of your life. It is not an easy undertaking. Even though you may feel better gluten free, down the road you may question if gluten is really your problem. Reactions can change over time. You could go on to develop silent celiac, where you have no symptoms but your immune system is still destroying your organs. By the time you know, it may be too late.

If you read the posts on this board you will find a myriad of people who thought they would just try the diet and see how they felt. Most of them really regret not getting tested first.

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You may have already seen this, but if not, check out this thread:

yo

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Thank you for your replies :)

I did just read that thread (still haven't had a lot of time to be on- I have an 8 month old daughter, and there's an abundance of information on the site!), and I didn't realize that even after thinking you had been gluten free for so long, you could still be causing yourself inner damage. I think I may just suck it up, deal with the symptoms another week, and make a doctors appointment to be tested.

I read somewhere that there are a certain group of blood tests you should ask for, I'll have to see if I can find it again..

I also should have added, I'm Canadian; we don't pay for things like blood tests and such. They're covered by our provincial governments, so long as you are registered with your provincial government. It's free of charge, so I've really no excuse not to be tested. If a doctor orders and endoscope or other tests post blood test results, I wouldn't pay for that either. One of the things I love very much about my country ^.^

For future reference, if I'm positive- ALL of my family should get tested? Mom, dad, sisters, niece and nephew..? I knew my own daughter would have to be tested when she's older, but I didn't realize that everyone should be expected to!

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Thank you for your replies :)

I did just read that thread (still haven't had a lot of time to be on- I have an 8 month old daughter, and there's an abundance of information on the site!), and I didn't realize that even after thinking you had been gluten free for so long, you could still be causing yourself inner damage. I think I may just suck it up, deal with the symptoms another week, and make a doctors appointment to be tested.

I read somewhere that there are a certain group of blood tests you should ask for, I'll have to see if I can find it again..

I also should have added, I'm Canadian; we don't pay for things like blood tests and such. They're covered by our provincial governments, so long as you are registered with your provincial government. It's free of charge, so I've really no excuse not to be tested. If a doctor orders and endoscope or other tests post blood test results, I wouldn't pay for that either. One of the things I love very much about my country ^.^

For future reference, if I'm positive- ALL of my family should get tested? Mom, dad, sisters, niece and nephew..? I knew my own daughter would have to be tested when she's older, but I didn't realize that everyone should be expected to!

ALL first degree relatives, ie, mom,dad, and siblings. the nieces and nephews would be if THIER parents Are positive....

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    • Hello and welcome I don't have celiac. I do have several symptoms in common with you and I do have a problem with gluten, so NCGS for want of a better term.  A celiac response to gluten involves the immune system so there certainly can be a delay between ingestion and the body producing the antibodies. That would correlate with your tongue aching progressively through the week. Some of the weirder symptoms of celiac occur because those antibodies that have identified gluten proteins as a problem then attack different parts of the body, maybe that's the more delayed reaction in your case. Last time I was glutened definitely I noticed some reaction in a few hours but it was a couple of days before I was certain. After effects can last for weeks or months even.  Wheat allergy is the one with the instant response, it's IGE mediated and so you can have an immediate surge in histamines and in extreme cases anaphylaptic reaction. NCGS is less well understood, some dispute it's existince or question if gluten is the cause. The symptoms however are similar to celiac as far as I know and that includes response time.  You've been through a miserable time but your still young and you need to decide whether you want to pursue a diagnosis or not. If you do, then it will require a gluten challenge of probably 6-12 weeks. See the links below for more details.  If you don't I suggest you go strictly gluten free, keep a food diary and see if the improvements you noted before continue. I think you've probably found your answer. Best of luck!   Further reading https://www.celiac.com/gluten-free/announcement/3-frequently-asked-questions-about-celiac-disease/
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