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nvsmom

Member Since 12 Jun 2012
Offline Last Active Today, 10:23 AM
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Posts I've Made

In Topic: Gluten Detox Period

Today, 10:23 AM

Some people go through a withdrawal period in the first few weeks after going gluten-free.  Some symptoms get worse (for me it was headaches, fatigue, moodiness) even as some slowly improve.  And recovery is a slow process with many ups and downs that lasts for many months.  Most celiacs are still making autoantibodies after being gluten-free a few months, that means damage is still being done even though you are gluten-free.  Give it more time and hopefully things will improve over the next couple of months.


In Topic: Blood Test Results Questions?

Today, 07:33 AM

How likely is it that someone would have a false negative? Is it especially common if someone has a negative IgA result that they would have a positive IgG?

Feel my frustration in wishing I had gotten the IgG panel - UGH!

 

I've seen different stats than SMRI.  False positives occur very infrequently at a low rate like 1-2% - they almost never happen. On the other hand, false negatives can happen a fair bit. The tTG IgA has a sensitivity of only 75-95%, so that means that on it's best day it misses 1 in 20 celiacs, and on it's worst day it can miss 1 in 4 celiacs.  While false negatives happen in a minority of cases, they are not rare. I would guess most people joined this site because they had conflicting test results (one test or other ends up negative).

 

I tend to look at page 12 of the World Gastroenterology Report on Celiac Disease Practices, page 12: http://www.worldgast..._long_FINAL.pdfIt lists each test and how sensitive it is as well as how specific to celiac disease it is.

 

And don't kick yourself for not knowing the tests, most of us didn't - I know that I did not.  I had the exact same tests run as you but they came up positive.  I then had my kids tested because 2 of 3 had some symptoms and they were all negative. Lo and behold, when I put them on a gluten-free diet their symptoms cleared up... What a coincidence, eh?  LOL ;) I assume they have celiac disease, with a mom who has it, but at this point, we can't know because the doctors here wouldn't give them any other test but the tTG IgA, and the EMA IgA if the first was positive (which it wasn't).

 

You're educating yourself now, and that is the important thing.  :)  Best wishes.


In Topic: First Time Being Glutened Or ... ?

Yesterday, 06:04 PM

At this early point in your recovery, there is no way to know for sure if you are glutened or f it was just a blip in your recovery.  The first 6 months gluten-free can have a bunch of ups and downs.  When you feel poorly it is always a good idea to recheck all of your food labels and recheck for cc, but if you find no gluten culprits, the you know it's just part of your recovery... Recheck those labels though, most of us made more mistakes early on until we learned what brands were safe.

 

You might want to consider dairy too. About half of all celiacs are lactose intolerant when they are diagnosed.  That often changes as you heal, but many of us find it helpful to drop dairy for 6 months or so.

 

Hope you feel better soon.


In Topic: New Member, Newly Diagnosed

Yesterday, 05:58 PM

I'm sorry for your loss.  :(  You've had a horrible few months.  I hope 2015 is a better year for you.  

 

Eating gluten-free takes some time to get used to.  Many of the gluten-free substitutes are not in the same class as the wheat flour products, and it will be a few months until you are used to eating this new way.  Bread is definitely a tricky one.  We usually have Udi's in the house but I only like it for toast.  There are some nice recipes for gluten-free bread out there and I'm sure you'll find one you like over the next few months.... The Baking forum might be able to help with that..

 

Welcome to the boards.  :)


In Topic: Gluten Detox Period

Yesterday, 05:53 PM

Yes, inflammtion goes hand in hand with untreated celiac disease.  It can wreak havoc with your other organs like your liver, pancreas, gall bladder, skin, and even your brain.  Bloating is also a common symptom and can make you feel very large and full.

 

Have you had blood tests done too?  It is often a good idea to have that done before going gluten-free.