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Do I Need To Be Diagnosed?


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24 replies to this topic

#1 Cargo

 
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Posted 04 May 2013 - 04:12 PM

For many many years I've known that most of my issues fall in the celiac symptom category...but I've chosen to ignore that because I didn't want to deal with going gluten free.

 

I've contacted my doctor to see if they'll do a test for me...I don't plan on stopping eating gluten until after the diagnosis comes back.

 

But if they refuse to do the test (it's the VA healthcare system, they might) and I choose to go gluten free, is there any other reason to make sure they diagnose me?  Is there anything that needs to be monitored by a doctor after going gluten free or is that it?

 

Thanks!


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#2 karenwill2

 
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Posted 04 May 2013 - 06:22 PM

Not all gluten issues show up on tests and there are many pathologies that going gluten free is the best treatment. It is super easy to eat gluten-free if you stick with lean meats and veggies. I just don't understand the "difficulty" that people worry about. It is so easy to read the ingredients and eat less processed foods. I have terrible insurance but all symptoms pointed to it, including the rash so my Doc did not run the test as the change in my diet was free. My insurance would not cover it plus I was maxed out already. I am so much better now and I eat out a lot. Today was the first time in 2 yrs that cross contamination got me. Felling better is so worth it.


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#3 GottaSki

 
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Posted 04 May 2013 - 06:41 PM

Welcome Cargo!!!

 

I'd take a list of symptoms published by the University of Chicago along with a list of complete celiac antibody tests/nutrient blood tests.  

 

If your receive any push back - perhaps point out that celiac disease is managed by the complete removal of gluten -- when compared with other medical protocols -- it is inexpensive for the VA or any other health system to manage.

 

Push for the diagnosis....if you have had trouble wrapping your brain around living gluten-free in the past -- the diagnose will help if pesky doubt should sneak back in.

 

http://www.curecelia...SymptomList.pdf

 

Full Celiac Blood Panel: 

Total Serum IgA
Tissue Transglutaminase IgA and IgG
Endomysial Antibody IgA
Deamidated Gliadin Peptide IgA and IgG

Gliadin IgA and IgG (only optional as the DGP above is the newer and more sensitive Gliadin test)

Also, low vitamins/minerals can indicate you are not absorbing nutrients properly - another indicator of Celiac Disease. So you might want to have these drawn at the same time as the Celiac panel.

Misc blood tests:
Bs, D, K, Iron, Ferritin, Copper and Zinc

 

Complete Metabolic Panel (CMP)

Complete Blood Panel (CBC)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#4 tarnalberry

 
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Posted 04 May 2013 - 08:26 PM

I don't think that "the world" is in agreement on monitoring celiacs when a gluten free diet is adhered to.  Some docs want to monitor antibody levels somewhat regularly, and/or vitamin levels, and/or a few other things.  Some docs will take the knowledge of one autoimmune condition into account when working with other issues that come up.  Some docs don't want to do much of anything.  In my (completely layperson) opinion, a lot of it depends on your general health.  If you're *otherwise* fairly healthy, and if you're *otherwise* totally happy staying gluten free and you feel healthy that way, I simply can't fathom the need for lots of followup testing/monitoring.  If you're not, however, it could make a difference.

 

There's no clear cut answer, but I would suggest that just because a doctor doesn't want to test you for something, that doesn't mean you should keep making yourself sick by eating gluten if you know it bothers you.  Testing be whatever, your health is ultimately in your own hands.


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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#5 GFinDC

 
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Posted 05 May 2013 - 04:13 AM

Dr Peter Green's book says some high percentage of untreated celiacs have bone loss or the beginins of it.  I think it was something like 60% or more.  Anyhow, a bone density test might be a good idea..


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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#6 Deaminated Marcus

 
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Posted 05 May 2013 - 09:28 AM

The reason I think testing is important is that Celiac can cause a myriad of health problems from osteoporosis, anemia, joint aches and other food intolerances and are associated with other auto immune disorders including Type 1 diabetis.

 

So if you later develop an auto immune disorder, having a Celiac diagnosis would help your doctor understand you condition better.

 

The only thing I didn't like when I was gluten free is that I couldn't go eat at a Burger place with friends and no longer being invited to diners.

 

As for eating: you can eat potatoes and rice and vegetables and cook your own meats.

There is gluten and wheat added to lots of prepared foods like soups, hot dogs, even corn bread.

You might need to try dairy free to see if that helps with gastrointestinal issues.

Let us know what the VA says.

 

PS:

don't just do the tTG test. Many test negative to it.

Here is the panel my local lab does:

 

Total IgA
Transglutaminase IgA tTG-IgA
Deaminated Gliadin IgA DGP-IgA
Deaminated Gliadin IgG DGP-IgG

 

It might be worth paying for it the one time to figure out once and for all if you have Celiac.


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#7 Cargo

 
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Posted 05 May 2013 - 06:09 PM

I'm finally to a point in my life where I have the mental clarity to handle going gluten free.  I suffer from severe depression and anxiety and have just been consistently stable for the last year or so.  I've always suffered from IBS/loose stool, hormonal imbalances, acne, headaches, reflux, low ferritin, low D, and low potassium...not sure if they have ever really tested any other vitamins and minerals.

 

I'm always tired and have very little energy.  I take heavy B vitamins and Iron because without them, I'm almost non-fuctional.  My family diet is heavy on pasta and bread...and we eat out quite often, although we're cutting back...which is one reason I wouldn't consider going gluten free previously. 

 

If my doctors refuse to test me, or if the tests come back negative, I'll still go gluten free and see how things change.  I'd just prefer to have everything documented, of course. 

 

Thank you for all the information! 


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#8 GottaSki

 
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Posted 05 May 2013 - 08:07 PM

I'm finally to a point in my life where I have the mental clarity to handle going gluten free.  I suffer from severe depression and anxiety and have just been consistently stable for the last year or so.  I've always suffered from IBS/loose stool, hormonal imbalances, acne, headaches, reflux, low ferritin, low D, and low potassium...not sure if they have ever really tested any other vitamins and minerals.

 

I'm always tired and have very little energy.  I take heavy B vitamins and Iron because without them, I'm almost non-fuctional.  My family diet is heavy on pasta and bread...and we eat out quite often, although we're cutting back...which is one reason I wouldn't consider going gluten free previously. 

 

If my doctors refuse to test me, or if the tests come back negative, I'll still go gluten free and see how things change.  I'd just prefer to have everything documented, of course. 

 

Thank you for all the information! 

 

 

Good Plan...and great luck to you!

 

Make sure you read the Newbie 101 Thread -- it contains a wealth of jump-start info.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#9 nvsmom

 
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Posted 06 May 2013 - 05:48 AM

Good luck!  :)

 

When you do eventually go gluten-free, remember that the first few weeks can be really tough, especially if you go through a withdrawal.  Just remember it doesn't last.


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#10 Cargo

 
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Posted 07 May 2013 - 01:52 PM

This is the response I got from my doctor:  


"Would recommend she cut out gluten for 2 weeks, then re-introduce it and if her 
symptoms return then she should stay on a gluten free diet. My experience is that 
not many people have true celiac's disease but a lot of people are sensitive or 
intolerent of gluten and should be on a gluten free diet."

Should I push to be tested??  What would your response be?  Is 2 weeks long enough for the small intestine to heal and have the effects disappear?  I'm annoyed.  I don't understand why she won't just test me.  It's not like it comes out of her pocket or she'd even have to do anything other than put the blood tests in the system.


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#11 GottaSki

 
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Posted 07 May 2013 - 02:25 PM

Ugh!!!

 

That response is sooooo frustrating and silly really -- why not run the tests to be sure before gluten is removed before one loses the ability for tests to be accurate?  I would ask why she is not running these simple tests -- I'd push.

 

And no...most do not completely heal or lose all symptoms within the first two weeks gluten-free -- some improve right away, but two weeks is very fast to expect all symptoms to disappear.  The immune system is complex and can take some time before healing happens.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#12 nvsmom

 
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Posted 07 May 2013 - 02:26 PM

Your doctor hasn't heard of withdrawal.   :rolleyes:  Often people feel worse for the first few weeks, not always but enough for it to be common. And not all symptoms resolve in the first few weeks. GI issues often heal first.Eventually that is often followed by migraines will improve and hair loss will slow. Neurological problems and pain are some of the last to go.... This is a generalization and not true of all celiacs, but my point is, that two weeks isn't much time to feel better, and it is most likely not even enough time to stop producing auto-antibodies never mind heal! The problem there is that if you do get tested after being gluten-free for any length of time, and you've stopped making auto-antibodies, your celiac tests will eventually be negative.

 

I would try to push for testing now and then try gluten-free after the tests. Your doctor is right that non-celiac gluten intolerance (NCGI) is much more common than celiac disease, but you might as well get tested for the rarer disease since you have symptoms, and you are eating gluten so the test will most likely be accurate.  

 

Good luck!


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Hypothyroid - August, 2012

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#13 Cargo

 
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Posted 07 May 2013 - 09:15 PM

Thanks for the info!  I had already sent my doctor another note...telling her that I'd really like to be tested, listing the tests I wanted and all my symptoms...

 

Then I was reading another thread and saw that medications may have gluten.  I'm on A LOT of meds...so it's not as easy as skipping the diagnosis and going on a gluten free diet!  I'd have to check all my medications...a good reason to make sure I get tested! 


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#14 GottaSki

 
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Posted 08 May 2013 - 07:22 AM

Thanks for the info!  I had already sent my doctor another note...telling her that I'd really like to be tested, listing the tests I wanted and all my symptoms...

 

Then I was reading another thread and saw that medications may have gluten.  I'm on A LOT of meds...so it's not as easy as skipping the diagnosis and going on a gluten free diet!  I'd have to check all my medications...a good reason to make sure I get tested! 

 

yep...be careful with the med one -- all of us...me, son and daughter have been burned by that one more than once when pharmacy switches generics -- thankfully I am off all meds (except for benedryl, inhalers and epi pen as needed), son down to one -- unfortuanately daughter still has a basket full and is quite ill so tough to check every flipping time they are filled -- she is doing a bit better so hopefully she'll get off meds one day too.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#15 Cargo

 
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Posted 08 May 2013 - 01:35 PM

Looks like my doc went on vacation.  I won't hear back until mid to late next week. 


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