Confusing Results

[Pokey Oaks]

So I got my blood work back today. The only coeliac related test performed were IgG and IgA, both of these came back as less than 1, so a negative result. I explained to my doctor I had been gluten-free for 6 weeks a month ago, and she told me it doesn't matter. She also told me that a diagnosis after age 30 isn't possible. Apparently I would have had signs by now, which I find odd as I have always had low vit d, iron and potassium, trouble with my weight and bowel issues. Even my sodium dips every now and then. My iron and vit d are quite low at the moment.

Anyway, the odd thing is, she said the test is basically useless, and being over 30 means an endoscopy would be irrelevant. She told me I clearly have an issue with gluten though, told me I was "gluten intolerant" and I should avoid it from now on, but not as extreme as someone with Celiac Disease.

So long story short, I'm more confused than ever :-/

[nvsmom]

Your doctor sounds like she doesn't know what she is talking about.  

 

The IgA and IgG are not actually celiac tests. It measures immune response activity in certain areas of the body. The Immunoglobulin A is considered to be a control test for celiacs because 5% of celiacs do not make enough IgA to have accurate celiac tests. The actual celiac tests are:

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

(total serum) IgA - the control test

AGA IgA and AGA IgG (an older and less reliable test)

 

And that whole bit about a diagnosis after 30 being impossible is just... bull! I would guess that at least half of the people on this forum were people who were diagnosed after 30 - I myself was 38. Yes, some of those people had symptoms all of their life but many did not! Celiac disease can appear at any time in someone's life - that's why they recommend retesting every 2-3 years for people who have a family history of celiac disease.  An endoscopy is an accurate test as any to determine if celiac disease is involved whether one is 5, 10, 45, or 65.

 

I think you need a new doctor.   You need more testing. testing for hypothyroidism (TSH, freeT4, free T3, TPO Ab) might be a good idea too.

 

Welcome to the board!

[GottaSki]

I agree with Nicole on all counts.....and I was diagnosed at the age of 43.  At the time of diagnosis, my doctor said...I doubt you have Celiac Disease because it is found in children that are short and underweight with chronic diarrhea most of whom outgrow it.  That was five years ago....she has since diagnosed others that presented with lifelong non-specific symptoms.

 

I met a man a few years back that developed symptoms at 67 and was diagnosed at 70.  There is no age limit and certainly no specific symptom or lack thereof that can determine if someone has Celiac Disease.

[mamaw]

PLEASE find a  new  doctor..... it appears  that  doctor  has  NO knowledge  of  Celiac....

[NoGlutenCooties]

OMG!!  Hearing about how clueless doctors can still be about this disease that has been around for so long makes my blood boil!  I was just diagnosed 6 months ago and I'm 42.  I had no symptoms.  I requested the blood test because it runs in my family.  My ttg iga was "only" 13 - anything above 11 was considered positive.  The biopsy showed moderate to severe villi damage and the inflammation was clearly visible to the naked eye (I still have the pictures on my fridge).

Your doctor is a complete moron - at least when it comes to Celiac.  Please tell her I said so. 

 

And I also don't know where she gets the idea that somehow gluten intolerance isn't as serious as Celiac - or that you don't have to be as careful about being gluten free.  What??  Folks with non-Celiac gluten intolerance get to experience all of the same symptoms as Celiacs do - so while there may not be villi damage, there is definitely something bad going on.  Celiac or non-Celiac... if you're intolerant then you're intolerant.  Intolerant means you cannot tolerate it.  At all.  Not even a little bit.

 

Please find a new doctor!  Ask for the full panel of blood work.

[frieze]

your doc is speaking out of the wrong anatomic orifice.

[Pokey Oaks]

Thank you everyone. I'm going to see a new doctor. My husbands cousin has Celiacs, and while they live quite far from us (though still in the same state), I'm going to ask my husbands aunt (mother of the boy with Celiacs) if she can recommend someone in our area. She's a retired doctor, but hopefully still has some contacts. Though I'm willing to travel to get a proper diagnosis if I have to. I feel like I have to keep eating gluten so any tests are definitive, but I'm sick of feeling sick!! I have 3 children to run around after, which is getting harder and harder.

Thank again, at least I now know I'm not alone in thinking the doctor really didn't know what she was on about.

[nvsmom]

Good luck.

Don't forget to get your kids tested too. celiac disease runs in families so if you have it, and they are still eating gluten, they should be tested every opulent of years.

[NoGlutenCooties]

your doc is speaking out of the wrong anatomic orifice.

 

 

   

[Pokey Oaks]

Has anyone had the gene testing done?