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Low Serum Iga

julirama723

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julirama723 Contributor
julirama723
Posted

I got a call from the doc's office today, and spoke with his nurse. My test results are back, and everything was "normal" (hormones, thyroid, nutrients, no lupus) except serum IgA, which was low. I know that low IgA can mean the possibility of celiac, since other tests in the celiac panel are meaningless if serum IgA is low. Low IgA also means I'm at risk for GI problems, autoimmune diseases, and recurrent infections, right?

I'm worried that since it's low, my other results won't be accurate (for thyroid, lupus, etc.). I have read posts about members having "normal" thyroid panels, but still feeling hypo- or hyper-thyroid and having symptoms. Thoughts on this? Does low IgA affect OTHER tests besides the celiac panel?

I was reading somewhere that low IgA means an increased chance for food allergies and intolerances, but of course, now I can't find where I read that...

The doctor has prescribed Flagyl for me, and I'm kind of confused about that...it's prescribed to fight bacterial infections, though I don't think I've "got" anything right now. Is this just a precautionary thing to help my intestines?

I have a follow-up appt. next Wednesday. I am requesting copies of my labs.

What questions should I ask?

What do I need to pursue?

Does anyone have low IgA/IgA deficiency (are they the same thing?) and what has that caused you?

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lizard00 Enthusiast
lizard00
Posted

I am IgA deficient, and other than the fact that I know, it means nothing to me. I don't get sick any more than the next person; actually, I rarely get sick. In fact, until after my son was born, I could eat anything and not get sick. And someone could literally throw up on me, and I probably wouldn't get the "bug" that they had.

IgA, I believe, is made in mass quantities in the GI system, which is why the celiac panel is based on it. The next step for you would be the IgG version of the tTg test, and possibly a genetic panel to see what your risk is. Are you still doing the challenge?

So, I'm not sure that every IgA low person is immediately at risk for anything. My GI tells me that it's no big deal unless you just don't make any at all. Then your chances to catch lots of things would increase. It's not uncommon to have low IgA. I'd think that by now, you would know if you're the "sickly" type... by that I mean catching any and everything that comes along.

Another thing you need to realize is that if you have Celiac, the sooner you go gluten free the less risk you have of developing those other AI diseases. I possess two copies of the DQ2 gene, which is associated with Type 1 Diabetes. Now, I believe that had I not have caught the celiac as early as I did, I probably would've ended up with IDD, or lupus (which is in my family) or something else. But, because I have the Celiac under control and my immune system is not going crazy, but rather working properly, I probably won't develop these things. That's a mighty large incentive for me NOT to cheat.

julirama723 Contributor
julirama723
Posted
  • Author

I am not really a "sickly" person, but as a kid I got sick a lot, and when I was being actively treated for Graves Disease, I had a respiratory infection or ear infection (or both) usually about every 3 weeks. (But I believe that was from PTU, which lowers immunal resistance.) For a while I was getting UTIs every couple of months. In the past year, I seem to have been getting sick a LOT more than my co-workers, a cold or something every 3-4 weeks or so (it probably has to do with the fact that I work with a lot of children.) But I'm not deathly ill.

I called the office back, and the Flagyl was prescribed as a "precautionary measure" to see if that helps with my GI symptoms. Now, unless bacteria are selective about when they strike (say, after any and all meals containing gluten) then I doubt bacteria is my problem. And this seems like a careless thing to do, prescribing an antibiotic to someone who has neither been tested nor has complained of GI symptoms lacking a specific cause (i.e. food induced) or one that even seems infectious in nature. I have yet to take the flagyl, I was going to wait until tomorrow--I will check that it is gluten-free. I really don't even want to take it at all.

He also suggested that I stop the challenge, which I am more than happy to do. It is rather obvious that gluten is a problem (I won't go in to details, but it's been a miserable week.) Apparently the head GI feels that even with my original celiac panel, it would have been positive if I "really were celiac" even though they did not test total IgA in original panel and this recent testing has shown that my IgA is low. I thought if IgA is low then all numbers will be low? Now I'm reconsidering the faith I have in them...

I'm not jonesing to be diagnosed as celiac, that's not some dream of mine; my worry is to be UNDIAGNOSED or MISDIAGNOSED and to develop complications from that or to have other related problems go undiagnosed because of an inconclusive blood test.

Is gene testing something that's done through bloodwork or saliva or something? Would I get that done at the GI's office? Is there a benefit to doing it? Is it something likely to be covered by insurance?

lizard00 Enthusiast
lizard00
Posted
I'm not jonesing to be diagnosed as celiac, that's not some dream of mine; my worry is to be UNDIAGNOSED or MISDIAGNOSED and to develop complications from that or to have other related problems go undiagnosed because of an inconclusive blood test.

None of us are. It sucks. BUT, my concern was the same as yours... I understand how you feel. When I read what undiagnosed celiac can do, it really freaked me out. And then when you put yourself on the diet, (which I did), you wonder is this working because I so desparately wanted something to work? Is there something larger at work? Having a definite answer is a wonderful thing.

Is gene testing something that's done through bloodwork or saliva or something? Would I get that done at the GI's office? Is there a benefit to doing it? Is it something likely to be covered by insurance?

It's a blood test. My GI ordered it through Prometheus. My GP told me that if she ordered it, insurance would not pay for it, but it would through a GI. I had my test done in May, and I'm still back and forth with them and my insurance company. For once, it's actually NOT insurance that's to fault... Prometheus is dragging their feet and has not submitted the claim properly. So, we'll see what happens.

The benefit for me was finding out that I was double DQ2, so I was in the highest possible risk for developing celiac disease. My doctor used that information along with my dietary response to diagnose me. He also told me that without the "gold standard" biopsy I should be on the lookout for any thing out of the ordinary as that could be indicative of something else. A year into my diet, I'm feeling like a new person. It's safe to say that I have celiac and no other underlying issues. So, it was a huge benefit in my circumstance.

It kept me from having to do a gluten challenge, because his next step was to do a biopsy. He flat out told me that I would never test positive on a regular celiac panel even if I was half dead. He felt very strongly that we needed to know for sure so that he could better keep track of my health. And I respect him a great deal for that. It's something you really should talk to your GI about as an alternative, especially if he told you to stop the challenge.

julirama723 Contributor
julirama723
Posted
  • Author

Lizard, I will ask him about gene testing at my next appointment. Something tells me he won't be overjoyed about the idea, but I'll discuss it anyway. Like you said, the NOT KNOWING is very scary. I keep thinking, "OK, if it's not celiac, it's gluten intolerance, fine, but WHAT ELSE is wrong with me? What caused the gluten intolerance, do I have other AI diseases?" I'm very much a person who needs closure and finality in things.

lizard00 Enthusiast
lizard00
Posted

You might be surprised. I kind of thought the same with my GI, but because of the low IgA and the detriment of a gluten challenge, it was really the only other option. So, to have something a little more solid, he may want to do it. It's not conclusive in itself, but it may be enough for him to say, ok... we know you have this, stay gluten free and let's see how you do. if you continue to improve and nothing new appears, then we have our answer. if this doesn't work, then we go from there.

julirama723 Contributor
julirama723
Posted
  • Author

Yes, good point. I hope my doc will be as willing to work with me on this as yours was with you! :)

This gluten challenge has SUCKED, but at least it's reaffirmed the fact that I do have a serious problem with gluten. After I'd been gluten-free (for only a few weeks!) it's almost like I forgot how bad I felt eating gluten...and was afraid it was all in my head. It's definitely not in my head. Even though I've been miserable (and had new/different symptoms appear) I know that gluten-free is THE ONLY way I can eat now, regardless of diagnosis. Still, I'd like to know for sure.

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sugarsue Enthusiast
sugarsue
Posted
Lizard, I will ask him about gene testing at my next appointment. Something tells me he won't be overjoyed about the idea, but I'll discuss it anyway. Like you said, the NOT KNOWING is very scary. I keep thinking, "OK, if it's not celiac, it's gluten intolerance, fine, but WHAT ELSE is wrong with me? What caused the gluten intolerance, do I have other AI diseases?" I'm very much a person who needs closure and finality in things.

Hi, I have enjoyed this thread because my dd has low IgA and I'm always trying to figure out if I should have gone further to determine if she has celiac. She does have a positive IgG test though so she is gluten intolerant. I have found that so many things have improved since going gluten free that I imagine that if you are "just" gluten intolerant, you may find that so many things improve and may no longer feel like there is anything else wrong. I hope so anyway! I know what you mean though. I really wish I knew one way or the other about my dd.

lizard00 Enthusiast
lizard00
Posted
Hi, I have enjoyed this thread because my dd has low IgA and I'm always trying to figure out if I should have gone further to determine if she has celiac. She does have a positive IgG test though so she is gluten intolerant. I have found that so many things have improved since going gluten free that I imagine that if you are "just" gluten intolerant, you may find that so many things improve and may no longer feel like there is anything else wrong. I hope so anyway! I know what you mean though. I really wish I knew one way or the other about my dd.

Maybe it's something you could pursue in the future, maybe when she's older and needs proof that she needs to stick to the gluten-free diet. You could always do it now, (putting the Enterolab discussion aside... ( :D )) through Enterolab. Their genetic results are not the hot topic with them; the downside is that they don't test for the entire chain. Or ask your daughter's doctor the next time around. Testing for genes can be done whenever you decide to go that route.

(The only reason I suggested in the future is because I see that your daughter is young, and I've had my 3 yr old tested for Celiac. NOT a fun process!)

sugarsue Enthusiast
sugarsue
Posted
(The only reason I suggested in the future is because I see that your daughter is young, and I've had my 3 yr old tested for Celiac. NOT a fun process!)

Yeah, you confirmed what I was thinking about her age. She's been through so much already that I can't bear to do the biopsy only to have it possibly come back negative! I keep thinking about enterolab... can't decide!

My 7 yr old gets her celiac test tomorrow. Depending on her results, maybe it will help me decide what to do, maybe, lol. Anyway, thanks for your response!

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