Clarification Needed On Blood Testing

[nosy parker]

Hi all.  New here.  I've been reading for almost a year and been on the path to getting a diagnosis.  Like everyone else my story is pretty long, and have been dealing with digestive issues since I was a child (over 30 years).  I was hospitalized for a couple of weeks when I was 10 because of it.  Anyway, over the years I've pretty much been considered a terrible hypocondriac.  But what else can you do but think you've got "everything" when you don't feel well and you can't get answers anywhere?

 

I stumbled onto this "celiac thing" in April last year.  The pieces just fit too well that it was freaky.  It sure would explain a heck of a lot of stuff in my family.  When I sent the info and several links to my sister she answered "Oh my God!, that's us!".

 

So, although it took me forever to get a GI to see me (not a simple process here), he actually listened to me and tested me for Celiac, although he really didn't think that's what it was.  I'm glad he at least humoured me.  I don't know what specific test he did, but it came back negative. BUT that was useless because he also tested my overall IGA and told me that I had very low results and that I am IGA deficient.  Therefore, the test was useless.  I also came back very low ferritin (although he said I wasn't anemic).  As a result, he has decided to go ahead and do a colonoscopy and gastroscopy (is this the same as endoscopy?) and he will biopsy my small intestine at the same time.  He still thinks I'm not celiac, but he says he might as well do the biopsy since he's there. This is in a couple of weeks. 

 

Here's my questions/problems:  I am so upset about being IGA deficient!  I feel this is going to make it so much harder to be properly diagnosed.  If the biopsy is negative, I'm going to be so upset because what other means is there for someone like me to get the diagnosis otherwise?  Does IGA deficiency negate the possibility of accurate testing across the board?  I see so many tests mentioned and I have no idea which ones require IGA.  But it does seem that the most accurate ones require IGA.  Can someone clear this up for me? Are there other tests I can request? Also, I've had a weird rash on my shins that comes and goes.  The derm told me it was psoriasis, but my hubby (and his whole family) suffer from psoriasis, it looks nothing like that.  Can you have DH if you are IGA deficient?  The rash usually appears on both legs simutaneously as well as my wrists and base of my back.  This time it's only on my left leg and isn't as severe, so I'm doubting again.

 

Anyway, thanks in advance for any help and info.

 

 

[shadowicewolf]

why? he could just run the IGG versions instead. A few members on here had to do that test instead of the IGA ones.

[beachbirdie]

Hi all.  New here.  I've been reading for almost a year and been on the path to getting a diagnosis.  Like everyone else my story is pretty long, and have been dealing with digestive issues since I was a child (over 30 years).  I was hospitalized for a couple of weeks when I was 10 because of it.  Anyway, over the years I've pretty much been considered a terrible hypocondriac.  But what else can you do but think you've got "everything" when you don't feel well and you can't get answers anywhere?

 

I stumbled onto this "celiac thing" in April last year.  The pieces just fit too well that it was freaky.  It sure would explain a heck of a lot of stuff in my family.  When I sent the info and several links to my sister she answered "Oh my God!, that's us!".

 

So, although it took me forever to get a GI to see me (not a simple process here), he actually listened to me and tested me for Celiac, although he really didn't think that's what it was.  I'm glad he at least humoured me.  I don't know what specific test he did, but it came back negative. BUT that was useless because he also tested my overall IGA and told me that I had very low results and that I am IGA deficient.  Therefore, the test was useless.  I also came back very low ferritin (although he said I wasn't anemic).  As a result, he has decided to go ahead and do a colonoscopy and gastroscopy (is this the same as endoscopy?) and he will biopsy my small intestine at the same time.  He still thinks I'm not celiac, but he says he might as well do the biopsy since he's there. This is in a couple of weeks. 

 

Here's my questions/problems:  I am so upset about being IGA deficient!  I feel this is going to make it so much harder to be properly diagnosed.  If the biopsy is negative, I'm going to be so upset because what other means is there for someone like me to get the diagnosis otherwise?  Does IGA deficiency negate the possibility of accurate testing across the board?  I see so many tests mentioned and I have no idea which ones require IGA.  But it does seem that the most accurate ones require IGA.  Can someone clear this up for me? Are there other tests I can request? Also, I've had a weird rash on my shins that comes and goes.  The derm told me it was psoriasis, but my hubby (and his whole family) suffer from psoriasis, it looks nothing like that.  Can you have DH if you are IGA deficient?  The rash usually appears on both legs simutaneously as well as my wrists and base of my back.  This time it's only on my left leg and isn't as severe, so I'm doubting again.

 

Anyway, thanks in advance for any help and info.

Welcome to the forum, nosy parker.

 

Your doc should do some more blood testing...you need to get the TtG IgG, Deamidated Gliadin Peptides (IgG and IgA are both usually done even if you are IgA deficient) and you can even get an anti-EMA IgG version but that is uncommon and the doc would have to make a point to order it specially.

 

Your low IgA doesn't negate the possibility of accurate testing, the doctor just needs to order the appropriate tests.

 

A colonoscopy won't tell him anything about celiac, though it will rule out cancer and inflammatory bowel diseases like Crohn's.  You DO need to make sure he does a good number of samples from an endoscopy that is done through the stomach (from the "top" rather than the "bottom").  If he doesn't take enough samples, it is a wasted effort.

 

As for your rash, that can be biopsied to detect dermatitis herpetiformis.  The biopsy needs to be done on HEALTHY skin right next to the rash, not on the rash itself.  If you test positive for DH, you don't need anymore testing.

[nosy parker]

Welcome to the forum, nosy parker.

 

Your doc should do some more blood testing...you need to get the TtG IgG, Deamidated Gliadin Peptides (IgG and IgA are both usually done even if you are IgA deficient) and you can even get an anti-EMA IgG version but that is uncommon and the doc would have to make a point to order it specially.

 

Your low IgA doesn't negate the possibility of accurate testing, the doctor just needs to order the appropriate tests.

 

A colonoscopy won't tell him anything about celiac, though it will rule out cancer and inflammatory bowel diseases like Crohn's.  You DO need to make sure he does a good number of samples from an endoscopy that is done through the stomach (from the "top" rather than the "bottom").  If he doesn't take enough samples, it is a wasted effort.

 

As for your rash, that can be biopsied to detect dermatitis herpetiformis.  The biopsy needs to be done on HEALTHY skin right next to the rash, not on the rash itself.  If you test positive for DH, you don't need anymore testing.

 

 

Thank you both for your replies.

 

Beachbirdie, would the IgG test be as accurate?  My doctor doesn't think it's celiac.  He said IBS originally (what a catch-all for "I have no idea what's wrong").   He ran the IgA test simply because I was insistent that he check me for celiac.  At that time I really had no idea about the many different tests that were out there, so I didn't ask for specific tests.  Thank goodness he had enough knowledge to check my total IgA.  I'm grateful for that because this way at least we know that the IgA test was useless.  He wasn't expecting anything to come back on any tests showing any problems.  When the results showed low ferritin he was a bit surprised.  He explained to me that low iron is not normal and that he would like to find the reason for this, not simply put me on a supplement.  So because of this result, coupled with my symptoms, he feels it's best to go in and take a look to make sure there isn't any type of bleeding or problem.  He has agreed to take the biopsy since he'll already be there doing the endoscopy (aren't they all top down?  He's going down my throat.).  But again, I don't think he is expecting celiac. Again, I'm grateful that he is listening to me and checking for celiac even though he doesn't think so.  I wasn't dismissed on that.

 

My concern is what if the biopsy is negative?  I've read about sooooo many people who have negative biopsies and still have celiac.  And in my case I wouldn't have an actual blood test that was also negative, just the biopsy.  So, I want to know what to do next, if the biopsy is negative.  I'm not a docotor, so when I read about most of these tests it seems they mostly need IgA, or they are not as accurate or more limited.  Also, DH tests for IgA in the skin, no?  If so, how can it be DH on my leg?  Just a little confused.....  Besides it will be months before I can get in with the dermatologist and it will probably have cleared again by then.  It's definitely milder than usual this time.  And he diagnosed it as psoriasis years ago.  Put me on a round of methotrexate and it cleared right up.

[shadowicewolf]

Yes, the TTG IGG is accurate.

 

Endoscopys are easy. Nothin' to worry about there.

 

What if the biopsy is negative? Regardless of the results, the next step would be to completely remove gluten from your diet. You don't need a doctor's permission to do this.

[beachbirdie]

shadowicewolf gave you good advice.  The IgG will be accurate and would be the only way to tell you if you do have celiac, in the possibility of a negative biopsy.  You may be non-celiac gluten intolerant, that is a valid condition that would need you to be gluten free. 

 

You have it right about "IBS".  This forum is FULL of people who were told they had IBS, only to find later they actually had celiac (or NCGI).

 

The best way to get the answer; a gluten-free diet!  It does not require a prescription! 

[nosy parker]

Endoscopys are easy. Nothin' to worry about there.

 

Really?  Cuz I am freaking out about this!  The colonoscopy doesn't bother me but the idea of that tube going down my throat...................gagging and choking just thinking about it.  I get the impression I won't be able to breathe and will be gasping.  Really worries me.

 

Thanks for your help.  I will hope for the best - a positive biopsy, then no need to keep second-guessing and wondering.  Isn't it sad that one would hope to get such a diagnosis? 

[nosy parker]

shadowicewolf gave you good advice.  The IgG will be accurate and would be the only way to tell you if you do have celiac, in the possibility of a negative biopsy.  You may be non-celiac gluten intolerant, that is a valid condition that would need you to be gluten free. 

 

You have it right about "IBS".  This forum is FULL of people who were told they had IBS, only to find later they actually had celiac (or NCGI).

 

The best way to get the answer; a gluten-free diet!  It does not require a prescription! 

I agree that I could just go gluten-free, but I am hoping this will answer many questions healthwise for my family, including my kids.  I know that nobody will take this seriously without an official diagnosis.  I'm the family hypochondriac, remember?   And how can you really implement such a strict life-altering diet and expect others to be vigilant when you've self-diagnosed? I can just imagine the eye rolling and annoyed attitudes from others.  My kids will never go for it, and who could blame them? 

 

If all else fails and I have to go gluten-free without the diagnosois, that's what i'll do but I really want to exhaust every test.

 

Thanks again to you and shadowicewolf for your help! I really, really appreciate it.  Just having somewhere to ask this where someone takes it seriously, helps a lot!

[kareng]

Really?  Cuz I am freaking out about this!  The colonoscopy doesn't bother me but the idea of that tube going down my throat...................gagging and choking just thinking about it.  I get the impression I won't be able to breathe and will be gasping.  Really worries me.

 

Thanks for your help.  I will hope for the best - a positive biopsy, then no need to keep second-guessing and wondering.  Isn't it sad that one would hope to get such a diagnosis? 

A colonoscopy goes thru the other end. It is not used to diagnose Celiac disease. An endoscopy goes thru the mouth. If you are having both, they will put you to sleep. However, it is a small tube and goes into your stomach, not your lungs. You should be able to breathe.