IGG Test Question

[MommyBunny]

In 2004, I complained to my doc of intestinal problems. I had my gallbladder out in 2003, and things hadn't really returned to normal. He did some testing, and told me, "You're not quite celiac, but you definitely have something going on." He never showed me the numbers, and I never asked. We moved shortly afterwards, and I never really thought about it after that.

A few years ago, I went on the Atkins diet. I cut out all starchy carbs & bread carbs for three months. I had one cheat day (Wednesday), and broke out in a rash from neck to ankle. It was Thanksgiving weekend (and my birthday), and I couldn't get in to the doc. I ate a piece of birthday cake on Friday, and had insane stomach cramps. I know, I know. I should've gone to the ER. I finally got in to see the doc the following Wednesday, and the rash was clearing up. She told me it was dermatitis herpetiformis, and to stay away from gluten. No talk of being celiac. No other ramifications.

So I go home, look it up, and find out about celiac. I ask for testing, and she tells me I'd have to go on a gluten diet for a month in order to get tested. After the pain I had from one piece of cake, I know I can't tolerate it. I stay off gluten, I don't have a rash. I eat something containing gluten (always in small amounts from cross-contamination--never like a donut or something), and I get a rash. That's proof enough for me.

Fast forward to today. I got a copy of my medical records from 2004.
IGA <20, which is negative
IGG 79, where 30 is considered a moderate to strong positive.

Wouldn't this be a "definite celiac", not a "something going on"?

I'm a bit frustrated. I should've been gluten-free for 14 years, not 3. 

[cyclinglady]

3 hours ago, MommyBunny said:

In 2004, I complained to my doc of intestinal problems. I had my gallbladder out in 2003, and things hadn't really returned to normal. He did some testing, and told me, "You're not quite celiac, but you definitely have something going on." He never showed me the numbers, and I never asked. We moved shortly afterwards, and I never really thought about it after that.

A few years ago, I went on the Atkins diet. I cut out all starchy carbs & bread carbs for three months. I had one cheat day (Wednesday), and broke out in a rash from neck to ankle. It was Thanksgiving weekend (and my birthday), and I couldn't get in to the doc. I ate a piece of birthday cake on Friday, and had insane stomach cramps. I know, I know. I should've gone to the ER. I finally got in to see the doc the following Wednesday, and the rash was clearing up. She told me it was dermatitis herpetiformis, and to stay away from gluten. No talk of being celiac. No other ramifications.

So I go home, look it up, and find out about celiac. I ask for testing, and she tells me I'd have to go on a gluten diet for a month in order to get tested. After the pain I had from one piece of cake, I know I can't tolerate it. I stay off gluten, I don't have a rash. I eat something containing gluten (always in small amounts from cross-contamination--never like a donut or something), and I get a rash. That's proof enough for me.

Fast forward to today. I got a copy of my medical records from 2004.
IGA <20, which is negative
IGG 79, where 30 is considered a moderate to strong positive.

Wouldn't this be a "definite celiac", not a "something going on"?

I'm a bit frustrated. I should've been gluten-free for 14 years, not 3. 

IgG what?  DGP, AGA, TTG?  Assuming it was the standard (and popular screening TTG, a positive would mean that you should have been referred to a GI for an endoscopy and biopsies.  Biopsies of the small intestine is still considered the gold standard in diagnosing celiac disease.  

But you are gluten free and are feeling better. Another sign you probably have celiac disease is DH (which requires a skin biopsy).  The DH rash will erupt if you are exposed to gluten.  DH is celiac disease.  Those with DH tend to be super sensitive, so consider being extra careful.   Try  reading the DH section for tips and advice.  

Your posting may help many.  It is so important to keep and maintain all your medical records.  Only you are your best health advocate! 

Welcome to the forum!  

 

[MommyBunny]

Thanks for responding!

Looking at the tests, there were three:
Gliadin AB IGA, which was negative;
Antiendomysial AB (IGA), which was negative; and,
Gliadin AB IGG, which was 79, strong positive.

He referred me for testing, but we moved, and I never followed up with a new doc. To be honest, I was young and afraid of the scope, so I was thankful it all kind of got lost in the move.

But on my next visit (for the flu), the nurse asked me how my celiac disease was going, and I told her I wasn't celiac BECAUSE THE DOC SAID I WASN'T. (Hooray for nurse's notes!)

So, it seems like I have celiac but I've never been formally diagnosed. I can either eat something, break out in a rash and get biopsied, or get back on gluten and get the blood tests done again. Neither one seems like a good option.

I'm going to get these old notes to the clinic I go to now in lieu of a current blood test and see if they'll give me that diagnosis.

Learned so much from reading my old chart yesterday, not just this. I definitely need to be more proactive!

[cyclinglady]

I get wanting to avoid a gluten challenge.  It seems like remaining completely gluten free is the way to go.  It can be done.  My hubby is not officially diagnosed, but he was gluten free 12 years prior to my own diagnosis.  Who would stay on a diet for almost 20 years if he did not see significant health improvements? (He was woefully mis-guided by his PCP and my allergist years ago.). 

  Celiac disease is definitely genetic.  You should have your children screened and rescreened if symptoms develop years later.  

Seriously read through the DH section.  Those with DH can be very sensitive to even the tiniest exposure to gluten.  

[MommyBunny]

Thanks! I've read through the DH section already, especially right after my first breakout in late 2016. Still figuring things out, but our house is relatively gluten-free. I used to be a chef, so I'm extra careful with cross-contamination.

And you're right on the sensitivity. If something says "may contain gluten", I can and will react to it. One slip of eating my daughter's peanut butter instead of my own, and I'm breaking out within hours. Everything is now clearly labeled, and we even have separate gluten drawers and shelves for when we do have gluten in the house. 

My daughter was already screened, and she came back negative for the antibodies, which is good. She loves her PB&J!