My diagnosis

[vkral]

Hi everyone. I'm at a strange point and I'm unsure what to do next...

Background: My mother and sister have the Celiac disease.

I was first screened for the Celiac disease when I was about 16, at the same time as my sister. My test came out negative, hers positive. When I was about 20, symptoms arose that started affecting my well being for the first time (might have been eralier, but I might had ignored them). Since then (I'm 26 now) they've been progressively getting worse. I had the blood test done again some 2 years back but it was, again, negative. I was perplexed. Last year my symptoms got worse once again, to the point I started to worry about my ability to perform duties etc. and I started questioning the previous tests.

About 2 months ago I found out online that several studies conclude that the blood tests (IgA et al.) are - well - pretty much s$#&e. It seems they are only reliable when the intestinal villi are completely destroyed, which is not the case in many celiacs, especially if their symptoms aren't so severe like mine a couple years back. In those cases, the test sensitivity is reportedly "somewhere between 30% to 85%" or so. A friend of mine who's a gastroenterologist in another country then confirmed that he has had people whose blood tests were negative but subsequent biopsy positive.

This made me very angry and I ordered a genetic test instead, which came out positive. At that point I started the gluten free diet and started feeling better, at least somewhat, in about a week. The stomach cramps weren't so bad any more and my apetite increased greatly. However, I was told that in order to confirm the Celiac disease by biopsy, I would have to keep eating gluten for some time. So I started eating gluten again and oh my God did I get sick from it. It was absolutely excruciating. I wanted to push through, but gave up after a few days.

I know it's not The Right Thing^TM to do, but I just couldn't bear it anymore, I'd do anything to get better at that point.

That was about a month ago. Since then I was eating gluten free and I am feeling a bit better, but I get relapses now and then, probably because I make dietary errors - I'm pretty sure I ate gluten accidentally on at least 2 occasions during that time, last of which was 2 days ago sadly.

Given the positive genetic test, my reactions to gluten exposure and the fact that my symptoms and the whole story were almost exactly the same as my mother's before she was diagnosed, I consider myself a celiac.

My question is: Do you think I should still push for diagnosis by biopsy?

I'm asking because I'm having second thoughts a little, it might be out of frustration (and anxiety), because I'm still not feeling healed. But I guess it's also possible I haven't been gluten-free enough to tell yet.

 

[kareng]

First - if you actually have Celiac disease, it takes more than a month of mostly gluten-free to heal.  It can take months and even a couple of years of strictly gluten-free to completely heal.

i think you need to get a positive diagnosis of Celiac and here is why- from what you have said, you should have a very good understanding of a Celiac gluten-free diet.  Yet, on at least 2 occasion is a short period of time, you have eaten  gluten.  This makes me think that you will always doubt if you have Celiac and take chances with food that a Celiac wouldn't take.  If you have Celiac ( but don't know it) and take chances and eat gluten occasionally, you will never heal.  This can lead to many other problems in the years to come.  

[squirmingitch]

 

First - if you actually have Celiac disease, it takes more than a month of mostly gluten-free to heal.  It can take months and even a couple of years of strictly gluten-free to completely heal.

i think you need to get a positive diagnosis of Celiac and here is why- from what you have said, you should have a very good understanding of a Celiac gluten-free diet.  Yet, on at least 2 occasion is a short period of time, you have eaten  gluten.  This makes me think that you will always doubt if you have Celiac and take chances with food that a Celiac wouldn't take.  If you have Celiac ( but don't know it) and take chances and eat gluten occasionally, you will never heal.  This can lead to many other problems in the years to come.  

I agree with this!

Furthermore, you must be eating gluten every single day for 12 weeks for the blood work.

In addition, I would like to know where you got the info. that :

 

"About 2 months ago I found out online that several studies conclude that the blood tests (IgA et al.) are - well - pretty much s$#&e. It seems they are only reliable when the intestinal villi are completely destroyed, which is not the case in many celiacs, especially if their symptoms aren't so severe like mine a couple years back. In those cases, the test sensitivity is reportedly "somewhere between 30% to 85%" or so. A friend of mine who's a gastroenterologist in another country then confirmed that he has had people whose blood tests were negative but subsequent biopsy positive."

Can you provide links please?

Open Original Shared Link

We have plenty of celiacs on here whose blood panel was positive yet their villi was not completely destroyed.

We'll ask Karen if her villi were completely destroyed when she had her positive blood panel.

@kareng

[cyclinglady]

So, exactly which celiac antibodies tests were taken?  Do you have copies?  Was it complete?  I ask because I only tested positive on the DGP IgA test and negative to the TTG (even on follow-up testing), yet I had moderate to severe intestinal damage.  Your GI was right.  Some patients have had  negative blood tests, yet  positive biopsies (not common).  A gluten-free diet will help make the final diagnosis in this case because many other things can cause intestinal damage other than gluten.  

Getting a biopsy at this point is up to you.  You would have to eating gluten daily for 2 to 4 weeks.  It sounds like this would be awful for you.   Most insurance companies might balk at paying for a endoscopy when you have a negative celiac blood panel, but you have a family history.  Maybe your doctor will diagnosis you anyway (have your family share lab results with him/her).  

Karen is right.  It can take months or years to heal -- I kid you not!  Why?  Some folks are older and have more damage.  Some have to take time to master the diet (each glutening is a set-back).  I was glutened in July (confirmed by antibodies).  Took me three months to recover and I have no clue as to what got me!  Remember, celiac disease is a autoimmune disease triggered by gluten and set-off by some unknown environmental factor (stress, illness, menopause, etc.)  Once triggered, your body starts to attack itself and that "flare-up" can last long after the gluten exits your body.  We are talking months to years!  The good news is that unlike MS or lupus or any of the other AI disorders, we know the trigger.  

Take care!  

[vkral]

Thanks for replying everyone.

 

This makes me think that you will always doubt if you have Celiac and take chances with food that a Celiac wouldn't take.

I am definitely not taking chances, I'm doing my best to stay off gluten but I just mess up sometimes and sometimes the vendors mess up, for example. This was the last case - I was told the bread I'm buying was gluten free, but later it turned out it wasn't. I'm just not good at shopping and eating gluten-free yet.

I get your point, though, it might be good for me to know for sure.

 

 

Can you provide links please?

Yes, I can provide a citation :-)

Open Original Shared Link , in chapter 4-D - Pitfalls of Relying on Serologic Test Results Without a Small Intestinal Mucosal Biopsy  they say: "The sensitivity of IgA EMA or tTG in patients with partial villous atrophy ranged from 89% to as low as 30%, while the sensitivity in patients with Marsh grade II lesions was less than 50%."

Of course, this doesn't mean that thos who have had positive blood tests didn't have partial atrophy! It only means that the sensitivity is low for those who have partial atrophy.

Which is consistent with the sad fact that majority of celiac disease cases end up undiagnosed or misdiagnosed.

 

 

So, exactly which celiac antibodies tests were taken?  Do you have copies?  Was it complete?  I ask because I only tested positive on the DGP IgA test and negative to the TTG (even on follow-up testing), yet I had moderate to severe intestinal damage. 

I don't know anything about the first test (when I was 16) other than that it was negative. The second one (2 yrs back) was TTG only, negative as well.

Thanks for your reply. I guess I'll visit my GI and talk the thing through with him in all honesty.

 

[squirmingitch]

Thanks for the link. That was 2006 - 10 years ago. Sensitivity & specificity can change a lot in 10 years but also that's why they added the DgP tests to the full panel.

This is the full, current panel:

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 

 

Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

You might also benefit from reading this:

It might help you to prevent those mistakes. I realize your mom & sister are celiac but even so, when faced with learning the diet for oneself & having to make sure you do it right...... well, it's certainly a tall, tall mountain to climb. There is a very steep learning curve. 

One thing, at least for now until you've got everything else down is no eating out. Way too dangerous until you really learn the ropes on that and even then it's like playing Russian Roulette.

Another thing I would say is don't eat anything anyone hands you & tells you it's gluten free. Unless you, your mom, your sister have prepared it; don't trust it.