Suggestion - FAQ / Intro post for the diagnosis board? - input requested

[Jmg 300]

Hi all,

Forgive the presumption. I don't have anything near the experience or knowledge base of others here, however I wonder if there's a need for an Intro post for the pre diagnostic board that could serve a similar purpose to this one: 

The same questions come up again and again, so this could save some time for users helping new members as long as they agree with the 'stock' answers. I have some time on my hands and want to put something back here having been the recipient of your collective support, so I thought I'd have a go at a draft. If you think the forum is better off without such a post (perhaps with a simple stickied redirect to a bona fide medical site) instead then by all means say so.  If however it's a good idea in your opinion. feel free to tear it apart and correct as you see fit.

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Welcome to the forum. If you're in this section, or have been directed here, you've yet to be diagnosed but may suspect that Celiac or gluten could be an issue for you. Please note that we are not medical professionals and although happy to share our experience and support  you should at all times seek medical advice rather than relying on internet based sources. That said, we'll do our best to answer any question you have, just start a topic, but before you post please take a look at the following answers and links to see if they help answer your questions.

I have symptoms X,Y and Z could I have Celiac or Gluten sensitivity?

We don't know! No-one here can diagnose you via an online post, however detailed or however much your symptoms suggest a connection.  Diagnosis is something for you to explore with your Doctor. What we can tell you is that as Celiac affects the auto immune system it can present in a lot of different ways or none, here's a short summary:  http://www.cureceliacdisease.org/symptoms/ and here's a much longer list of associated conditions:  https://glutenfreeworks.com/gluten-disorders/symptom-guide/ 

I don't feel well, should I give up gluten to see if that's the problem?

Giving up gluten shouldn't be your first port of call, that would be your doctor! Even if you're right to suspect gluten, an accurate diagnosis of Celiac requires the patient to be consuming gluten. If you remove it beforehand you may have a much harder time finding out if gluten really is a problem for you. Also, the Gluten Free diet can be tricky to follow and it may be that you don't need to be quite so restrictive. There is evidence to suggest that other foods may be to blame for symptoms: http://bottomlineinc.com/before-you-give-up-gluten-try-a-low-fodmap-diet/ but you won't find out if you remove gluten first. 

I've already excluded gluten and feel better on the gluten-free diet, should I still get tested?

This is something you will have to decide for yourself, preferably after a discussion with your doctor. The benefits of testing may include recognition and additional ongoing support from the medical community, further testing for malabsorption, monitoring of intestinal damage and recovery, access to dietician advice and automatic testing for close relatives who may have undiagnosed celiac.  The validation of a positive test may also be helpful in maintaining the gluten-free diet for life without exceptions.

Why do I need to eat gluten to get tested?

Celiac involves an immune system reaction to gluten. The blood tests measure levels of antibodies in the blood. If gluten isn't present prior to testing those antibody levels could be affected and the test may result in a false negative. Most doctors recommend at least 8 weeks of gluten exposure prior to blood testing and at least 2 weeks for biopsy. 

How much gluten do I need to eat for the test to work?

There doesn't appear to be a consensus on the level of gluten required, so you're best bet is to discuss with your doctor. Further information on a gluten challenge is available here: https://www.verywell.com/whats-involved-in-a-gluten-challenge-562708

What tests should I request?

Tests differ with some labs not offering all the available tests. Ask your doctor or gastro enterologist to outline which tests they use. These are the current markers which should be tested: 

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

I went through testing and got a negative result, should I forget about gluten?

If you've exhausted the diagnostic process and have a negative result for celiac you may still want to try diet changes to see if they help with symptoms.  Estimates suggest between 0.5% and 6% of the population may suffer from non celiac gluten intolerance: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3820047/  You may not have to give up gluten however: http://bottomlineinc.com/before-you-give-up-gluten-try-a-low-fodmap-diet/ If you've finally decided to give up gluten keep a food diary to help track any intolerances and see the celiac newbie thread for help with the gluten-free diet:

Other resources: 

https://www.coeliac.org.uk/coeliac-disease/coeliac-disease-faqs/ - a collection of questions and answers from a UK based Celiac organisation

https://www.coeliac.org.uk/coeliac-disease/getting-diagnosed/ - a guide to the diagnostic process from a UK perspective.

 http://www.cureceliacdisease.org/screening/ - Advice from the University of Chicago's Celiac Disease Centre 

https://health.ucsd.edu/specialties/gastro/areas-expertise/Pages/celiac-disease-clinic.aspx - Advice from University of California, San Diego Celiac centre

http://www.celiac.ca/?page_id=128 FAQ from Canadian Celiac Society

https://celiac.org/celiac-disease/diagnosing-celiac-disease/screening/ - screening info from celiac.org

http://www.beyondceliac.org/celiac-disease/get-tested/ - Testing info from Beyond Celiac 

[GFinDC 889]

On 6/15/2016 at 0:41 PM, Jmg said:

automatic testing for close relatives

That would be great however I don't know anywhere that automatic testing of relatives happens.

[Jmg 300]

3 hours ago, GFinDC said:

That would be great however I don't know anywhere that automatic testing of relatives happens.

Ah my mistake thanks. In the UK our medical establishment says that on diagnosis close relatives should be considered for screening. It's not automatic as such and I'm not sure if the approach is the same elsewhere. 

I'll amend the text, but may need a mods help, I think there may be a time limit on editing posts.

[squirmingitch 696]

It is recommended here that first degree relatives get tested but it's not an automatic thing. You have to ask to get them tested generally unless you have a really savvy doc.

[GFinDC 889]

56 minutes ago, Jmg said:

Ah my mistake thanks. In the UK our medical establishment says that on diagnosis close relatives should be considered for screening. It's not automatic as such and I'm not sure if the approach is the same elsewhere. 

I'll amend the text, but may need a mods help, I think there may be a time limit on editing posts.

It may take a higher level mod to make a change in the text for you JMG.  But it might be simpler to just post a modified version when you are ready.  I imagine you'd want to make a new thread for the final version anyway instead of pining a thread with multiple comments and corrections?

As far as pinning the final thread version, we'd need Scott or Peter to do that I believe.   It seems like a pretty good thread / info post to me.  But Scott has ultimate authority.

When you want, you can report the post using the "report post" option near the top left of the post.  That will send a report to the MODs and they can review your post and maybe Scott will see it then.  As you can imagine Scott doesn't read every post/thread for some reason.  I could report it for you but I don't want to do that until you have a final version.

[Karag 1]

As someone who has had many of these questions, I like this!  Maybe add a note to the "what tests" portion that reminds people to get a physical copy of their results that includes the ranges.  

[Jmg 300]

On 8/16/2016 at 6:48 PM, GFinDC said:

I could report it for you but I don't want to do that until you have a final version

Thanks, I'll do that

On 8/17/2016 at 10:59 PM, Karag said:

As someone who has had many of these questions, I like this!  Maybe add a note to the "what tests" portion that reminds people to get a physical copy of their results that includes the ranges.  

That's a really good idea. Something like:

My test results are back, what do they mean?

Ask your doctor for a print out of the test results. This should include both the reading from your blood as well as an indication of what a 'normal' result would be within a range. Usually a figure will be given and any reading over this will be considered a positive. It's important you get a printout as it may be that you're on the borderline, officially negative, but potentially some antibodies showing a reaction.  You can post your results here, but remember, we're not doctors!

I'll add this to the post and work on it a bit more to make it less wordy. Thanks for the feedback, the more the better.

 

 

 

[Jmg 300]

hopefully an improved draft

---

Welcome! If you've yet to be diagnosed but suspect that Celiac or gluten may be a problem this section is for you.

We'll do our best to answer any question you have, just start a topic and introduce yourself, but before you post please take a look at the following answers and links to see if they help answer your questions. 

Finally, please note however that we aren't medical professionals and although happy to share experience and support  you should seek medical advice rather than rely on internet sources. No-one can diagnose via online posts. Diagnosis is something to explore with your Doctor.

I have symptoms X,Y and Z could I have Celiac or Gluten sensitivity?

We don't know! As Celiac affects the immune system it can present in a lot of different ways or even none, here's a short summary:  http://www.cureceliacdisease.org/symptoms/ a depiction of the systems affected: http://www.montana.edu/mountainsandminds/2012/fall/celiac.php and here's a much longer list of possible associated conditions:  https://glutenfreeworks.com/gluten-disorders/symptom-guide/ 

I don't feel well, should I give up gluten to see if that's the problem?

An accurate diagnosis of Celiac requires the patient to be consuming gluten. Removing it beforehand may make it harder finding out if gluten is a problem, Also, the Gluten Free diet can be tricky to follow and it may be that you don't need to be quite so restrictive. There is evidence to suggest that other foods may be to blame for some symptoms: http://bottomlineinc.com/before-you-give-up-gluten-try-a-low-fodmap-diet/ but you won't find out if you remove gluten first. 

I've already excluded gluten and feel better on the gluten-free diet, should I still get tested?

The benefits of testing may include recognition and additional ongoing support from the medical community, further testing for malabsorption, monitoring of intestinal damage and recovery, access to dietitian advice and potentially getting tests for close relatives who may have undiagnosed celiac.  The validation of a positive test may also be helpful to you in maintaining the gluten-free diet for life without exceptions. As undergoing a gluten challenge for testing can be hard for some this is something you will have to decide for yourself, preferably after a discussion with your doctor.

Why do I need to eat gluten to get tested?

Celiac involves an immune system reaction to gluten. The blood tests measure levels of antibodies in the blood. If gluten isn't present prior to testing those antibody levels could be affected and the test may result in a false negative.  Most doctors recommend at least 8 weeks of gluten exposure prior to blood testing and at least 2 weeks for biopsy. 

How much gluten do I need to eat for the test to work?

There doesn't appear to be a consensus on the level of gluten required, so discuss with your doctor. Further information on a gluten challenge is available here: https://www.verywell.com/whats-involved-in-a-gluten-challenge-562708

What tests should I request?

Tests differ with some labs not offering all the available tests. Ask your doctor to outline which tests they use. These are the current markers which should be tested: 

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

My test results are back, what do they mean?

Ask your doctor for a print out of the test results. This should include both the reading from your blood as well as an indication of what a 'normal' result would be within a range. Usually a figure will be given and any reading over this will be considered a positive. It's important you get a printout as it may be that you're on the borderline, officially negative, but potentially some antibodies showing a reaction.  You can post your results here and request feedback, but remember, we're not doctors!

 I went through testing and got a negative result, should I forget about gluten?

If you've exhausted the diagnostic process and have a negative result for celiac you may still want to try diet changes to see if they help with symptoms.  Estimates suggest between 0.5% and 6% of the population may suffer from non celiac gluten sensitivity: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3820047/  which can involve many of the symptoms of Celiac but without the presence of blood markers or intestinal damage. 

You may not have to give up gluten however, there is some evidence that a low fodmap diet may be more beneficial to some reporting NCGS: http://bottomlineinc.com/before-you-give-up-gluten-try-a-low-fodmap-diet/ 

If you've finally decided to give up gluten keep a food diary to help track any intolerances and see the celiac newbie thread for help with the gluten-free diet:

Other resources: 

https://www.coeliac.org.uk/coeliac-disease/coeliac-disease-faqs/ - a collection of questions and answers from a UK based Celiac organisation

https://www.coeliac.org.uk/coeliac-disease/getting-diagnosed/ - a guide to the diagnostic process from a UK perspective.

 http://www.cureceliacdisease.org/screening/ - Advice from the University of Chicago's Celiac Disease Centre 

https://health.ucsd.edu/specialties/gastro/areas-expertise/Pages/celiac-disease-clinic.aspx - Advice from University of California, San Diego Celiac centre

http://www.celiac.ca/?page_id=128 FAQ from Canadian Celiac Society

https://celiac.org/celiac-disease/diagnosing-celiac-disease/screening/ - screening info from celiac.org

http://www.beyondceliamc.org/celiac-disease/get-tested/ - Testing info from Beyond Celiac 

[Scott Adams 527]

Thank you for the suggestions...actually we did have a FAQ that was working fine for years, but with a recent board update it was somehow hidden. I have unhidden it now, and it is visible above very forum:

https://www.celiac.com/gluten-free/announcement/3-frequently-asked-questions-about-celiac-disease/

[Jmg 300]

Thanks Admin  Every board update usually has a casualty or two, if you just lost an FAQ thread you got off lightly!

I hope at some point you can get a reference to NCGS into there, a lot of people who may benefit from a gluten free diet don't try it after a negative celiac test. Anyway, keep up the good work.

Matt

[Scott Adams 527]

First, I want to thank you for your work on this, which won't be lost. I'll look it over and try to incorporate it into our existing FAQ.

 

[Jmg 300]

36 minutes ago, admin said:

First, I want to thank you for your work on this, which won't be lost. I'll look it over and try to incorporate it into our existing FAQ.

 

Please don't mention it. As I said above I've found this site invaluable, wanted to put something back and if anything I've put can be of use great! but if it's unsuitable don't worry about it.