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Hi everyone,

I'm a 27-year old woman living in the Netherlands. I first started seeing my GP in 2009, when my stomach/belly problems got really out of hand and I got extremely tired en depressed (and lots of other strange symtoms).

To make a long story short:
I had a colonoscopy that showed a mild chronic proctitis (probably not Colitis Ulcerosa or Crohns)
I was diagnosed with a huge B12 deficiency (52);
Folic acid deficiency (4)
Ferritin deficiency (3)
Vitamin D deficiency

Celiac bloodtest was negative, so the doctors were very clear I didn't had it. I knew the test wasn't 100% sure, but they -I've also got a second opinion- refused to look any further. I've been thinking about Celiac before I went to the GP en these test results only got me more suspicious. I've never had a gastroscopy and I still don't know the cause of my B12 deficiency (I also had no Pernicious Aneamia antibodies).

I gave up and figured I had to feel better with B12 shots en other vitamin suppletion. My stomach problems got way milder, but I never felt any better. Actually, I only got feeling worse. I was extremely tired all the time, got more depressed, couldn't study anymore not only because of a tired and weak body, but I coundn't concentrate anymore and basically got really STUPID. I had to quit my studies and there I was, doing absolutely nothing. I can't study, I can't work. I did go back to school after a 2,5 year break, but I ended up home again within a month. I had to eat a lot to stay up on my feet, but I didn't feel better. It made me go to the bathroom more en I still was very tired.

Now, 7 years later I still feel horrible, possibly even worse than before. I still get weekly B12 shots and daily vitamin D, folic acid and magnesium. I'm so tired and I have to get more than 12 hours of sleep a day (more if I can). My body is weak, sometimes I feel like I can't stand up anymore. I can't let Celiac go. Apparently there is still something that makes me sick and food is the only thing left. Also, the proctitis and deficiencies are very common with Cealic. The extreme fatique, depression, brain fog... I find it hard to believe that it's all just a coincidence, so I went to (my new) GP asking for another Cealic test (maybe after 7 years I developed antibodies?).

The results were negative, with IgA tTG: <1. So very very negative.
My total IgA was 0.7 (references according to my lab <0.7 - 4.0) They didn't do any further testing (IgG)

I definitely have a LOW IgA and a partial IgA deficiency (when your IgA levels are below 1.2). I've been searching all over the internet and according to some studies you already have a severe/"complete" IgA deficiency when you are below 0.8 or even 0.9. It's confusing, as I am below those two.

My question is: is a total IgA of 0.7 mean that I can't make antibodies and my Celiac test will always be negative, while my actual chance of having Celiac is higher?

Does anyone have had the same thing?

It's all so confusing and I just can't take it anymore. It's hard to believe all of the aboves are just coincidental.

Hope someone can help me out, cause I really can't take this anymore and the doctors don't know anything about this and keep saying everything is fine. I still am fighting to have some final answers and I won't give up this time. I made this topic only to get some answers to the question above. I also would love to hear similar stories.

Thank you for reading my (not so short after all) story!

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Hi Liznin,

Welcome! :)

Yes, one of the test they should do with a celiac disease antibodies panel is the total IgA.  That's because some people don't make much IgA antibodies.  They can't use the IgA tests for those people.  They generally call that total serum IgA.  There is a higher rate of IgA deficiency in people with celiac than in the general population.

There are other antibodies tests though.  They could check the IgG antibodies instead.  Any positive antibody test is a possible indicator of celiac disease.  It sounds to me like you could have celiac disease.

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Thank you for your reply, GFinDC :)

I thought I finally figured out this IgA deficiency thing and that my blood results are indeed invalid.

However, I read on http://www.cureceliacdisease.org/ that for a Celiac test, only IgA levels under 0.2 makes the blood tests invalid, what means my blood test with an IgA of 0.7 should give an accurate result and not false-negative.

Here the link: http://www.cureceliacdisease.org/faq/what-level-is-considered-iga-deficient-for-someone-being-diagnosed-with-celiac-disease/

I'm so confused right now and don't know what to believe anymore. I'm really looking for answers, but I just can't seem to find one. By GP is very clueless when it comes to Celiac Disease, so I can't turn to her for more information.

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Why not ask for the complete celiac panel?  The TTG test is a good screening test (catches most celiacs and is cheaper), but it does not catch all celiacs (like me!). 

 
-Tissue Transglutaminase (tTG) IgA (you were negative on this one). and (tTG) IgG
-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG
-EMA IgA 
 
Ask for both the IGA and IGG versions since your IGA deficiency test is low or borderline for celiac testing purposes.  
 
 

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Cyclinglady: do you have an IgA deficiency or was your bloodtest negative despite of that? Were you positive on the other tests or only on the biopsy?

I've been through a lot of articles and studies about IgA deficiency and my level of 0.7 g/l - 70 mg/dl should be enough to have a valid test on Celiac. It's very unlikely my tests are false-negative because of this low IgA. 

I will have a gastroscopy in december and I think maybe it's best to wait and not have any further blood tests as my IgA levels aren't low enough. I'm just to scared they'll turn out negative too (which is very likely now) and I don't want to drive myself crazy as Celiac is my only hope now.

And yes, I know there are people (10% - 15% or something like that) who are seronegative en still have a positive biopsy, but the chances are pretty slim and I'm trying to be realistic about it.

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The only positive found on my celiac panel was the DGP IGA.  The rest were negative.  I test this way even in follow-up annual tests.  I do not have an IGA deficiency.  In fact, the opposite -- my result was high and out of the standard range indicating a possible infection...but nothing to worry about.   My celiac disease diagnosis was confirmed via biopsy.  

I do not think we are communicating well.  You did test negative to the TTG, but that does NOT exclude celiac disease.  If I had just had the TTG test, like you, my diagnosis would have never been caught.  You did not have the complete celiac panel.  You only had the cheap, but most often effective for the money,  screening test: the TTG igA.  

Let's about your IGA deficiency.  In the case of testing for celiac disease, if you are IGA deficient, doctors should order the TTG IGG and the DPG IGG.   You are borderline.  So, it would be best for your doctor to order the COMPLETE celiac panel, including the EMA!

If celiac disease is completely ruled out, then consider a pill camera.  My niece was diagnosed with Crohn's using the camera.  She did not have typical crohn's symptoms and she tested negative on all the celiac testing.  ALL.  Remember, you only took ONE of the celiac tests.  

You need the complete celiac blood panel regardless!  That is because, even if biopsies reveal intestinal villi damage MANY other things can cause that kind of damage besides celiac disease (milk, parasites, etc.)

 

 

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I thought VA was pretty specific for celiac disease. That's why I thought any further blood tests weren't that important anymore, because I was assuming a biopsy could diagnose celiac disease anyway. I did not know there where that many other causes for VA. So yes, I will ask for the whole Celiac panel now. Thank you!

I have some pretty obvious reactions to milk and I will be tested for lactose-intolerance also.

Very glad I found this forum. I'm getting way more useful information than on Dutch Celiac websites and forums.

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19 minutes ago, Lizninn said:

I thought VA was pretty specific for celiac disease. That's why I thought any further blood tests weren't that important anymore, because I was assuming a biopsy could diagnose celiac disease anyway. I did not know there where that many other causes for VA. So yes, I will ask for the whole Celiac panel now. Thank you!

I have some pretty obvious reactions to milk and I will be tested for lactose-intolerance also.

Very glad I found this forum. I'm getting way more useful information than on Dutch Celiac websites and forums.

 

Here is a list of other causes for VA:

http://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease/

this is critical....keep eating gluten daily until all testing is complete!  

Edited by cyclinglady

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