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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.

How Many People Self-Diagnose?
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40 posts in this topic

I'd definitely suggest going to see a doctor. Don't self diagnose.

I was one of them. Gluten was giving me so many issues that I stopped eaiting it. Gluten free made me feel Better so I just assumed I was "allergic." then I learned about celiac and stuff. But by then it was too late to get tested. I had already been gluten free for months.

I went to an allergist and he said that if I felt Better gluten free, then I should just assume I am gluten sensitive. There are no tests or stuff I can do but assume. So I could indeed be a celiac, I guess I'll never know.

Long story short, don't self diagnose

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"As my body doesn't know if I'm glutened on purpose or by accident"

clearly the keyword is "body" and "my body doesn't know" has not the same meaning as "I don't know"

And it is about knowing the difference between "by accident or on purpose"

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The topic is "How Many People Self-Diagnose". :D

On this forum it looks like there are many people self-diagnosed and that they are very active.

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I believe most people self-diagnose due to frustration with the medical profession and their inability to do the job. It doesn't take much math to calculate that major symptoms after consumption of gluten which resolve when gluten is withdrawn means you have a problem with gluten (or wheat, etc.). Heck, a lot of people had not in the past even heard of celiac or sometimes even gluten when they stopped eating gluten-containing products. It was not a diagnosis but a life-saving move. This is not so true today with the much greater general awareness. In fact, everyone is getting sick to death of even hearing about celiac, let alone gluten consumption or avoidance. :rolleyes:

Frankly, IMHO, if someone is unable to refrain from eating something that harms them because they don't have a formal diagnosis, they have very little respect for their body and their own judgment. While the diagnosis is a useful piece of information, it is not so useful as to make yourself ill to obtain it once you know the facts and especially once you realize you have been misled by the medical professionals..

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On this forum it looks like there are many people self-diagnosed and that they are very active.

I think that many people who self diagnose do so because they have become very very ill. They stop eating gluten and start to feel better. What's wrong with that? Also, I disagree with your statement of having a doctor's opinion is motivating to stay on the diet. I really don't care what a doctor tells me, and I have no trouble staying on the diet. Perhaps if you've gotten to the point of extreme illness, you end up with a lot of other issues, and tend to stay in support groups such as this.

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Not only for me, for most. Just in human nature that life is easier without doubts. And there is a lot of positive power from doctors, employers, friends, family-members taking your celiac to be a fact.erefore missed to be diagnosed and to find out the benefits of being properly diagnosed.

How dare you presume to speak for "most"? You speak for yourself and no other. Please stop presenting your opinions as the majority. I'm getting angry now because you are acting as if a self-diagnosis is somehow inferior or less accurate than one bestowed by a dude in a white coat who still puts his pants on one leg at a time in the morning. Celiac tests have a 20% false negative rate, 1 in 5 shot that even if you challenge and risk your health and well-being by eating poison you won't get a positive result.

And what are these magical benefits of being "diagnosed" (as if I can't figure my celiac disease out for myself perfectly well)? Please enlighten us. My family understands that I have autoimmunity, my friends eat where I need, my doctors consider me celiac and give me the care I need. A so-called formal diagnosis would change absolutely nothing for me.

In fact, in the US getting diagnosed can be detrimental because it becomes a pre-existing condition that can get you declined coverage or bumped into a more expensive insurance bracket. Hardly a compelling reason to poison oneself for a piece of paper that tells you what you already know.

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In fact, in the US getting diagnosed can be detrimental because it becomes a pre-existing condition that can get you declined coverage or bumped into a more expensive insurance bracket.

Isn't that fraudulent, withholding information when applying for an insurance?

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Isn't that fraudulent, withholding information when applying for an insurance?

Just a moment here, please.

You are twisting her words. This is not what Skylark was talking about at all. You have gone so completely off topic now.

The topic is about how many people self-diagnose. Lisa has already pointed this out once.

It is not about why you shouldn't self-diagnose. EVERYONE already knows this. They have all tried to obtain a diagnosis and been let down by the medical community in some way or another or tested negative and still suffer. I would relate my own experience in trying to get DXed for 3 years, but they have already heard it. Self-diagnosis is sometimes the only way for people to get well.

I refer you to the Board Rule #5 to remain on topic.

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I think that many people who self diagnose do so because they have become very very ill. They stop eating gluten and start to feel better. What's wrong with that? Also, I disagree with your statement of having a doctor's opinion is motivating to stay on the diet. I really don't care what a doctor tells me, and I have no trouble staying on the diet. Perhaps if you've gotten to the point of extreme illness, you end up with a lot of other issues, and tend to stay in support groups such as this.

I agree, in my opinion it boils down to this.

That being said, every person needs to do what they feel is best for them.

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Isn't that fraudulent, withholding information when applying for an insurance?

Not at all. If beets give you heartburn, so you just avoid them, you wouldn't put that on your insurance application.

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Your doctor is splitting hairs. You can be celiac with DQ1 and some experts argue that gluten-sensitive lichen planus is a skin manifestation of celiac. If rash goes away off gluten I'd consider myself celiac.

Thank you Skylark! I guess I am just a little scared to say offically that I have celiac. I am Gluten free almost 2 weeks now and already starting to feel better. My sister in law was amazed yesterday at how much better I am in such a short period of time. She is a nurse. I do have doctor approval to do Gluten free diet and he put me on a ton of vitamins. I guess he is just going by the book. He obviously sees that Gluten is the problem or he wouldn't do all the testing and tell me to go gluten free. I don't need the offial diagnosis as long as I get better I am happy. ;)

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Thank you Skylark! I guess I am just a little scared to say offically that I have celiac. I am Gluten free almost 2 weeks now and already starting to feel better. My sister in law was amazed yesterday at how much better I am in such a short period of time. She is a nurse. I do have doctor approval to do Gluten free diet and he put me on a ton of vitamins. I guess he is just going by the book. He obviously sees that Gluten is the problem or he wouldn't do all the testing and tell me to go gluten free. I don't need the offial diagnosis as long as I get better I am happy. ;)

There are people with neurological autoimmunity, gluten-sensitive psoriasis, and gluten-sensitive rheumatoid arthritis who don't get labeled celiac either. It's pretty reasonable to argue that all the forms of gluten-sensitive autoimmunity are different manifestations of celiac disease. I think it's only a matter of time before the definition of celiac expands to include you. ;)

Call yourself whatever feels comfortable. I find telling people I'm celiac simpler than trying to explain why the medical system failed so badly that I was never tested except in childhood when I was already eating gluten-free out of necessity.

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There are people with neurological autoimmunity, gluten-sensitive psoriasis, and gluten-sensitive rheumatoid arthritis who don't get labeled celiac either. It's pretty reasonable to argue that all the forms of gluten-sensitive autoimmunity are different manifestations of celiac disease. I think it's only a matter of time before the definition of celiac expands to include you. ;)

Call yourself whatever feels comfortable. I find telling people I'm celiac simpler than trying to explain why the medical system failed so badly that I was never tested except in childhood when I was already eating gluten-free out of necessity.

I completely agree with you and someday I know I will be in the Celiac umbrella. Until then I will be content to tell people I have an Autoimmune Gluten Intolerance and get really sick if I eat it.

I am just so happy to have a reason I am so sick. Not just a reason but a way to FIX the problem. I am actually looking forward to my crusie in 8 weeks! 2 weeks ago I was looking for someone to take my place. I was actually willing to give up my crusie for free to someone so my son would have a good time! :( I start PT this week with my hottie Physical Therapist who promised me he would help me rebuild my muscles in time for my trip. :D

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I agree with the previous two posters. The label is too constricted now, IMO. I do believe as more understanding of the disease develops, there will be a more inclusive definition of the diagnosis. This lack of inclusion is what leads many of us to have no choice but to self diagnose. My single fail of one blood test shut down all future discussions and I only found out the false negatives after reading these forums.

This disease leads to more self diagnoses because it is so easy to self test with a gluten-free diet. For me it was just a "who knows" trial and two days later my life changed.

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I agree with the previous two posters. The label is too constricted now, IMO. I do believe as more understanding of the disease develops, there will be a more inclusive definition of the diagnosis. This lack of inclusion is what leads many of us to have no choice but to self diagnose. My single fail of one blood test shut down all future discussions and I only found out the false negatives after reading these forums.

This disease leads to more self diagnoses because it is so easy test with a gluten-free diet. For me it was just a "who knows" trial and two days later my life changed.

Thank you Chad! Isn't it amazing how much difference it makes. Thank you for sharing and I am so glad you didn't let the "It's negative" statment stop you from trying a gluten free diet.

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