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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?  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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Jnkmnky

Prometheus Labs Vs. Enterolab....

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One's doing a blood test, one's doing a stool test *mainly*. A friend of mine wants her son tested and I gave her my extra kit from Prometheus. Then a friend in N.Y. was asking me where to get her son tested and I suggested Enterolab on the east coast. So I began looking them both up on line. And now I'm not sure if they're both created equal...you know? So, are there any hard opinions out there?

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Personally, I am for Prometheus 100%! They are a great lab for celiac testing.

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Thanks, Kaiti. I'm feeling the pressure because my friend on the east coast is married to a dr and he's giving her some attitude about testing their son who has had problems since birth. The child is currently on meds and she'd like to find an alternative dx that utilizes a dietary change rather than serious drugs. I'm trying to be delicate in my advice so as not to stir up any tension. She needed to know where to get the tests done, and I'd like all my answers to be the best they can be. So, I will toss out Prometheus as an alternative to Entero in a quick email to her. It must be VERY difficult being married to a dr who questions the likelihood of celiac disease as a reasonable dx. It's bad enough just going into an office you know you can jet out of when you feel ignored.

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Two labs are being mentioned here. Can we add yet another. Great Smoky? I understand that in addition to celiac testing they do some other very sophisticated funtional testing. Anyone have any experience? Claire

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Two labs are being mentioned here. Can we add yet another. Great Smoky? I understand that in addition to celiac testing they do some other very sophisticated funtional testing. Anyone have any experience?  Claire

<{POST_SNAPBACK}>

I've had IgG Food Antibody and Comprehensive Digestive Stool Analysis tests done at Great Smokies. I think they are mainly known for these types of tests..and they have a great reputation. However, I don't think too many people here have used them for Celiac testing. I think they've just recently started testing for celiac disease and I have no idea about their tests. Enterolab and Prometheus seem to be very well known for running these tests. Maybe Great Smokies will build a reputation but so far I havent seen anything about them with the exception of one guy from another forum. I used Enterolab for my tests.

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Thanks Rachel. I will be so glad if I ever get something definitve. My tale is way too long to tell - you would age while I was telling it.

Right now I have a diagnosis which I don't believe - at least I don't believe it is a primary diagnosis. I believe I am celiac disease or gluten sensitive. Whatever, I have serious neurological complications and neurologist says no gluten - regardless. I will be evaluated at NIH -as soon as I can get an appointment. That will include DNA mapping for spinoccerebellar ataxia.

I was on a gluten controlled diet for years but not gluten free, I just eliminanted the big offenders. That came about because I was diagnosed Type II, Delayed Food Reactions. Now Blood test for celiac is unreliable because of the gluten withdrawal. Stool sample is the only way left to go - unless NIH will map for celiac as well. I am gluten free now.

I am new on the forum. It is quite an experience. Very helpful. I do get concerned about those who don't seem to realize what severe damage gluten can cause - celiac, gluten sensitive or whatever. Silently, it can do you in! Claire :rolleyes:

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Thanks Rachel.  I will be so glad if I ever get something definitve. My tale is way too long to tell - you would age while I was telling it.

<{POST_SNAPBACK}>

Yeah...I know how you feel. I had a rough 3 years not knowing what was going on with my health. I've been on disability 2 years and just finally got my positive results last month. I had everything from MRI to Barium to CT scans and tons of bloodwork...nothing ever came back positive till I went to Enterolab. Gluten...who knew??

Well I'm getting better now but still waiting to see if gluten-free is going to bring me back to 100%...I'm about 75% right now. I was probably at 2% a few months back so I'm doing really good. :)

If you've been gluten-free for awhile you probably want to use Enterolab...I think they're the only one who does the stool test and you dont have to go back on gluten for the test. Does Prometheus only do blood? Maybe someone else knows. I'm pretty sure the one guy who used Great Smokies had a blood test too. A blood test wont be accurate unless you're on gluten. Also if you were interested in gene testing Enterolab tests for gluten sensitivity genes as well as celiac genes. I don't think any other lab does that.

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I was a little late in seeing this topic, but I, too, would go with Prometheus.

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I think doctors consider Prometheus labs more seriously than Enterolab. I was not happy with Prometheus.

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Personally, I am for Prometheus 100%! They are a great lab for celiac testing.

<{POST_SNAPBACK}>

Thanks Kaiti

Blood work only? I have been on a gluten controlled diet for 15 years. Blood work is unreliable. I need a stool sample test.

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I think doctors consider Prometheus labs more seriously than Enterolab.  I was not happy with Prometheus.

<{POST_SNAPBACK}>

What went wrong? Claire

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Yeah...I know how you feel. I had a rough 3 years not knowing what was going on with my health. I've been on disability 2 years and just finally got my positive results last month. I had everything from MRI to Barium to CT scans and tons of bloodwork...nothing ever came back positive till I went to Enterolab. Gluten...who knew??

Well I'm getting better now but still waiting to see if gluten-free is going to bring me back to 100%...I'm about 75% right now. I was probably at 2% a few months back so I'm doing really good.  :)

If you've been gluten-free for awhile you probably want to use Enterolab...I think they're the only one who does the stool test and you dont have to go back on gluten for the test. Does Prometheus only do blood? Maybe someone else knows. I'm pretty sure the one guy who used Great Smokies had a blood test too. A blood test wont be accurate unless you're on gluten. Also if you were interested in gene testing Enterolab tests for gluten sensitivity genes as well as celiac genes. I don't think any other lab does that.

<{POST_SNAPBACK}>

Hi Rachel - you seem to be making great progress. Congratulations. Most discouraging for me right now is that everything takes so long. I wait days into weeks just to get a secretary to make an appointment. I have turned into a first class pest. Right now I am waiting for NIH. Once I get a call back it will be two to three months for the appointment and then that long again for results. This testing will be looking for a genetic form of ataxia - which I don't think I have. I asked the doctor to order the DNA mapping for celiac but I don't know if he did or not. Interesting that he was adamant about gluten - even when not considering celiac as the primary diagnosis.

I have been fighting the system on this issue since 1980. It took 10 years to get the Type II, Delayed Food Reactions diagnosis and that has been it until this year - when the insidious gluten damage showed up and I inadvertently stumbled onto the connection between the Delayed Food Reactions and celiac. I have a medical background so I am a real pain to doctors because I push them to find cause - rather than treating symptoms. I believe the neurological problems are symptomatic. The neurologist sees them as a primary diagnosis. It will take so many months to find out which of us is right. In the meantime I am assuming celiac or gluten sensitivity and will have to do that scouting on my own - unless doctor has ordered the DNA at NIH. My blood work on the food issues showed me reactive to all grains except rice and oats -among other things. Thanks for your note. Claire

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What went wrong?    Claire

<{POST_SNAPBACK}>

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Thanks for the responses. Now can someone help a newbie here with a technical issue. I am new to this forum - have never been on a forum before. How do I reply to a portion of a response without quoting the whole message? I want to make a reply to a response and have it appear with that response but without the quote. Thanks for help. Claire

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I think doctors consider Prometheus labs more seriously than Enterolab.  I was not happy with Prometheus.

<{POST_SNAPBACK}>

Sorry - my reply to you didn't go where I expected it to and is floating around loose. You can tell I am a newbie here. What went wrong for you at Prometheus?

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Thanks for the responses.  Now can someone help a newbie here with a technical issue.  I am new to this forum - have never been on a forum before.  How do I reply to a portion of a response without quoting the whole message?  I want to make a reply to a response and have it appear with that response but without the quote.  Thanks for help.  Claire

<{POST_SNAPBACK}>

Instead of hitting reply scroll down a bit farther to the add reply and it will not quote anything from the previous post.

Also, Enterolab is good for an alternative and if you want a stool test. Prometheus is a prominent lab for celiac testing but I do believe that they only do the blood work. Blood work with them has been very reliable though unlike some other labs around. They know how to read celiac panels.

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Thanks Kaiti -

Now I will see if this reply stays with your message or 'floats' off separately. I knew about the reply but now how to attach it to a message without taking the quote.

You say 'know how to read a celiac panel'. Explain please. Did you have some experience or know of labs not reading the panel correctly?

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Thanks Kaiti -

Now I will see if this reply stays with your message or 'floats' off separately.  I knew about the reply but now how to attach it to a message without taking the quote.

<{POST_SNAPBACK}>

Claire, whenever you post it will automatically go to the end of the topic...regardless of who you are responding to. If you want to respond to an earlier post its a good idea to use quotes so that your post will be understood. Its not that the post is "floating" off seperately...its just that the posts are in order by when they were sent. The last post will always be the most recent post. Hope I'm making sense. :P

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Thanks Kaiti

Blood work only?  I have been on a gluten controlled diet for 15 years. Blood work is unreliable. I need a stool sample test.

<{POST_SNAPBACK}>

Claire,

How gluten-free have you been over the last 15 years? If you haven't been eating gluten for such a long time I don't think even the stool test will be accurate. Enterolab says 1 year off gluten can still provide positive results..I don't think there is any guarantee though. 1 year is a long time and 15 years is a REALLY long time. Have you read the FAQ on Enterolab's site? I think they say in this type of scenario the gene testing would be of more help. If you've been eating some gluten I guess you could still try with the stool test.

Sorry you've been through so much....I had to become a pain to my doctors as well..it was the only way to get them to do anything. In the end they never helped. All of the months that I was at my worst and had lost 25 lbs. they never sent me to the GI or even considered Celiac. I was tested once at MY request but I'd already started a gluten-free diet and didn't know any better. :(

They are running all the celiac tests now including the biopsy but its too late cuz I've been gluten-free 5 months now.

Even more frusterating is that I was so sick for 3 years with no answers and all these miserable symptoms. Today I find out my roommate who has the same HMO (different city) is getting tested for the full celiac panel. She has NO symptoms whatsoever...she's healthy but went to the doctor for the flu she had last week. Her liver counts were high and she was sent to the GI right away...He's testing her for lots of things including celiac disease. What the heck! :blink:

I was 94 lbs. and couldn't even hold my own head up and my mom had to cry and beg them to send me to the GI after 3 whole years!!! I still to this day have not had the full celiac panel!! I'm very upset about this. :angry:

My roommate is laughing and saying I have "celiac panel envy"....which I do!!!

Anyways the panel is meaningless to me now that I'm gluten-free...I wont go back on gluten for the tests so even though they're going to test me now...it'll just be negative.

Sorry for the rant....I just needed to get that out.

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Claire, whenever you post it will automatically go to the end of the topic...regardless of who you are responding to. If you want to respond to an earlier post its a good idea to use quotes so that your post will be understood. Its not that the post is "floating" off seperately...its just that the posts are in order by when they were sent. The last post will always be the most recent post. Hope I'm making sense.  :P

<{POST_SNAPBACK}>

Absolute sense. How do you get just part of a quote - enough to identify it? Some messages are long.

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Absolute sense.  How do you get just part of a quote - enough to identify it? Some messages are long.

<{POST_SNAPBACK}>

You just erase whataver you don't want in the qoute...you can narrow it down to whatever you want. Just dont mess with the mumbo jumbo computer jargon stuff on the top and bottom of the quote....because thats what keeps the quote intact.

:)

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Good. Thanks. I spend a lot of my life on a computer but that doesn't make me forum smart. Here I am definitely 'challenged'. But kind ones like you take pity on me and before you know it I will know what I am doing. :lol:

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