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Do I Get Re-Tested? Several Glutenings In Last Month...


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Posted 06 January 2014 - 02:09 PM

I believe my Celiac dx came relatively soon after onset (maybe within 2 - 3 years) and I my villi damage was only 'patchy' in the words of my Dr.  I went gluten-free last March and my GI symptoms have improved markedly.  After about 4 months gluten-free, I got both blood and endo tests and Dr. said everything was hugely improved, he could hardly see evidence of my GI damage.


Over the last month or so -- what with travel and the holidays, I believe I've gotten glutened 2x - 4x.  As my symptoms aren't severe, it's hard for me to know for sure.  I'm tempted to ask my Dr. to run the tests again, but I don't know how much gluten will damage me.  I'm going to get even stricter about cc for a while and hope that will help, but is there any value to me testing again to see if I've set things back?


How often do you get tested?

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Posted 06 January 2014 - 02:21 PM

Annually is sufficient since your numbers have already shown improvement.  At this point your body is likely a better indicator of when you accidentally ingest gluten.  Minor glutening and cross contamination is not a reason to get tested...simply a reminder of how careful we need to be.


Take care :)

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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


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

"LTES" a Gem :)



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Posted 06 January 2014 - 02:39 PM

"I'm going to get even stricter about cc for a while and hope that will help,"


You meant you're going to get TOTALLY strict about CC FOREVER, right? :lol:


Just bustin' your chops a little. Hope you're feeling better soon. :)

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gluten-free since June, 2011

It took 3 !/2 years but my intolerances to corn, soy, and everything else (except gluten) are gone!

Life is good!





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Posted 06 January 2014 - 05:09 PM

I've only been gluten free for 3 months but my doctor wants to retest the blood at the 6 month mark.  As long as the numbers are going down there won't be any other further testing necessary.  Ever.  Unless I start having some sort of persistent symptoms (persistent meaning NOT as a result of some accidental glutening).


Also just wanted to add... you have to go 100% gluten free.  For life.  Mistakes will happen but we all really have to do whatever we can to avoid cross-contamination and any other source of gluten.  Gluten = antibodies = damage = malabsorption = health problems.

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Age: 44

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Posted 07 January 2014 - 10:23 AM



If you got glutened, then you know you have been damaged.  No doubt about it.  The immune system doesn't take breaks from celiac disease just because you are lax in your diet.  What's more important than additional testing is getting away from the attitude that is is ok to be lax and take chances.  As long as you have an attitude that it doesn't matter much then you are heading for trouble.  We all make mistakes sometimes though, and that is at times unavoidable.  So the thing to do is get right back on the straight and narrow and learn from those mistakes.  Over time you can learn to avoid such incidents or make sufficient preparation to avoid problems.  It is all a learning process but the right attitude makes learning easier.  And less painful.  Celiac disease requires the gluten-free diet, and the gluten-free diet is a medical diet, not an optional diet.


Having to pay more attention and take more time for your diet than other people do can be a pain sometimes.  And may make holidays a little challenging.  But the payoff is better health.  Doctors can't fix your diet, that's up to you alone.  You are in the driver's seat as they say.  You can do it! :)

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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



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Posted 07 January 2014 - 10:49 AM

Thanks everyone, but I'm afraid my quick writing gave the wrong impression.  I'm VERY careful about cc and strict on my gluten-free diet.  However, as you've noted - accidents DO happen. 


I have to travel and eat business meals for my livelihood, and I choose to go out with my family to eat so that my children don't feel, should they eventually get Celiac, that it's a life sentence to solitary.  If I don't feel a restaurant is trustworthy, I have a KIND bar I keep in my purse and eat my own food when I get home.


I refuse to be a victim and allow this disease to keep me in my house.  Perhaps if I'd had more damage at the outset, and more years of pain, I might feel differently, so I don't fault anyone for their choices.  But, per my doctor, my efforts til now have been very successful.  I do not ever, in my lifetime, expect to have the foods I miss, and I've come to terms with that.  It's no big deal and I don't pine for them.  I'm also lucky that I live somewhere with a high awareness of the precautions that need to be taken, and great grocery options.


I will continue to be careful, and yes, step up my already significant efforts to avoid cc.  But take my word for it, I'm not one of those who's dealing with this halfway.  Accidents happen, and I only wanted to know if there's a benefit to testing soon after a feared glutening.



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