Do Elevated Gliadin Antibodies Always Mean Celiac Or Gluten Intolerance?

[gfjayhawk]

I know this is probably a dense question, but I have to ask. My children both tested positive for gliadin antibodies. I haven't gotten them in to see a GI yet. Their ped, who ordered the celiac panel, suggested that we could just wait a few months and then retest them, because the gliadin antibodies weren't necessarily a sign of celiac. I asked him about gluten intolerance, and he had no idea what I was talking about. So I'm thinking this isn't his area of expertise.

I'm wondering what your doctors and your experiences have taught you about gliadin antibodies. Are they a sure sign that you can't handle gluten? I'm guessing yes, since forming antibodies to your food is a bad thing.

[motherof3]

I know this is probably a dense question, but I have to ask. My children both tested positive for gliadin antibodies. I haven't gotten them in to see a GI yet. Their ped, who ordered the celiac panel, suggested that we could just wait a few months and then retest them, because the gliadin antibodies weren't necessarily a sign of celiac. I asked him about gluten intolerance, and he had no idea what I was talking about. So I'm thinking this isn't his area of expertise.

I'm wondering what your doctors and your experiences have taught you about gliadin antibodies. Are they a sure sign that you can't handle gluten? I'm guessing yes, since forming antibodies to your food is a bad thing.

The first question I thought of when reading your post is, Why did you have your children tested in the first place? Their Ped would not have ordered the panel without symptoms justiying the test. Did he recommend other ideas that did not help symptoms? It is a huge lifetime change, I recommend you see a GI right away. If gluten is a "poison" to your children, why would you wait a few months?

On the other hand, your ped wants to retest in a few months. You could put your children on a gluten free diet, if the numbers go down when he restests, you will have your answer without the invasive procedures that the GI will want to do.

My tests came back with positive antibodies two months ago. I went to a GI and he wanted to do an endoscopy and then put me on a gluten free diet. My symptoms are consistant with Celiacs! I started reading up on celiacs and since there is no other "cure", I started a gluten free diet. I think your guess is completely correct, if your body can't tolerate gluten it makes antibodies to fight it! I think of it kind of like to following situation.

A pregnancy blood test checks to see if you are pregnant or not, you can't show a positive and be a little pregnant. You either are or you are not, the blood test results are conclusive. My sisters blood does not make gliadin antibodies, mine does. My body is fighting gluten!

Just my gluten free opinion! Hope this helps!

[Darn210]

My question would be . . . what else is going on? Are there any other symptoms besides elevated IgA?

We are currently going through this with my son. He was only tested because his sister was diagnosed with celiac. His tTG level was normal (hers wasn't). His IgA level was elevated (hers was too). He has no GI symptoms (or behavioral or anything else that I can think of) but he is small for his age. The GI said that normally, with this type of blood test, he would wait for some sort of symptom before anything else would happen (diet change or possible endoscopy). Since my son was small, he was concerned that something may actually be going on. We have had him on a trial diet for over four months and have not had any changes. I expect that when we see the doctor again, we will be able to put him back on gluten and then if we ever notice any symptoms, celiac will be at the top of the list to be investigated. We will also have him periodically screened for changes.

If you go on a gluten-free diet and then redo the blood test, I would totally expect the numbers to go down. Numbers decreasing doesn't mean you have celiac, it means you are doing a good job at maintaining a gluten-free diet.

So back to my original question. . . what else is going on? What were you and your doctor looking for in that blood test?

[gfjayhawk]

I had the kids tested because I'd just gotten a positive result on the celiac panel. My GP wants me to have a biopsy, but I've already tried a gluten free diet and found that it helps me, so I'll be gluten free regardless of what the biopsy shows. (I know I'll have to start eating gluten again before the biopsy, if I have it, and I'm not thrilled about that.) Our ped is well intentioned but really doesn't know much about celiac. I need to get us all to a good GI.

The first question I thought of when reading your post is, Why did you have your children tested in the first place? Their Ped would not have ordered the panel without symptoms justiying the test. Did he recommend other ideas that did not help symptoms? It is a huge lifetime change, I recommend you see a GI right away. If gluten is a "poison" to your children, why would you wait a few months?

On the other hand, your ped wants to retest in a few months. You could put your children on a gluten free diet, if the numbers go down when he restests, you will have your answer without the invasive procedures that the GI will want to do.

My tests came back with positive antibodies two months ago. I went to a GI and he wanted to do an endoscopy and then put me on a gluten free diet. My symptoms are consistant with Celiacs! I started reading up on celiacs and since there is no other "cure", I started a gluten free diet. I think your guess is completely correct, if your body can't tolerate gluten it makes antibodies to fight it! I think of it kind of like to following situation.

A pregnancy blood test checks to see if you are pregnant or not, you can't show a positive and be a little pregnant. You either are or you are not, the blood test results are conclusive. My sisters blood does not make gliadin antibodies, mine does. My body is fighting gluten!

Just my gluten free opinion! Hope this helps!

[gfjayhawk]

The kids aren't having dramatic symptoms. My 9-y.o. is prone to gas and loose bowel movements. My 7-y.o. doesn't seem to have any symptoms. Both are small for their ages. I just had them tested because I'd just gotten a positive result on the celiac panel. If they do have celiac, I want to catch it so they don't spend years being sick the way I did.

The ped wasn't even suggesting we take them off gluten. He thought we could just wait a few months and redo the test and see if anything had changed. I don't really like that option. I'm hoping to get a better answer from the GI.

My question would be . . . what else is going on? Are there any other symptoms besides elevated IgA?

We are currently going through this with my son. He was only tested because his sister was diagnosed with celiac. His tTG level was normal (hers wasn't). His IgA level was elevated (hers was too). He has no GI symptoms (or behavioral or anything else that I can think of) but he is small for his age. The GI said that normally, with this type of blood test, he would wait for some sort of symptom before anything else would happen (diet change or possible endoscopy). Since my son was small, he was concerned that something may actually be going on. We have had him on a trial diet for over four months and have not had any changes. I expect that when we see the doctor again, we will be able to put him back on gluten and then if we ever notice any symptoms, celiac will be at the top of the list to be investigated. We will also have him periodically screened for changes.

If you go on a gluten-free diet and then redo the blood test, I would totally expect the numbers to go down. Numbers decreasing doesn't mean you have celiac, it means you are doing a good job at maintaining a gluten-free diet.

So back to my original question. . . what else is going on? What were you and your doctor looking for in that blood test?

[Darn210]

The kids aren't having dramatic symptoms. My 9-y.o. is prone to gas and loose bowel movements. My 7-y.o. doesn't seem to have any symptoms. Both are small for their ages. I just had them tested because I'd just gotten a positive result on the celiac panel. If they do have celiac, I want to catch it so they don't spend years being sick the way I did.

The ped wasn't even suggesting we take them off gluten. He thought we could just wait a few months and redo the test and see if anything had changed. I don't really like that option. I'm hoping to get a better answer from the GI.

With the GI symptoms and the high IgA, that does sound like gluten could be a problem. Small sizes could be too. You might want to think about a trial diet for both of them. If you are already doing it for yourself, it is really not that difficult to do. I think a good discussion with the GI is in order.

[April in KC]

GFJayhawk,

I like the thorough explanation of testing in the following link:

Open Original Shared Link

This explains why younger children may have positive antigliadins but negative EMA and TTG. Also explains some of the reasons for false negatives.

April

[April in KC]

Also - if you're considering taking your kids to see a GI in the KC area, I like Craig Friesen at Children's Mercy GI Clinic.

[gfjayhawk]

Thanks for the link and the recommendation. I am looking for a GI for the kids. I'll be having a biopsy done next month, but I'll be staying off gluten after that (and getting the kids checked out) regardless of what the biopsy says. I've been sick for a long time, and I don't want the same for them.

[ravenwoodglass]

Knowing what I do now I only wish someone had even looked into this for my children. It the kids are forming antibodies they are having a reaction. You don't form antibodies without one. That antibody reaction may or may not have been present long enough to cause what most doctors would recognize as celiac symptoms. Which are IMHO present at the end stage of this disease. Many of us grew up thinking things like rumbling tummys, occasional tummy aches, D and C, concentration problems and mood issues, skin problems and more were normal for years and years. It is only after we are gluten free and they disappear that we realize they weren't.

I have a young man who is an adult at 5 ft. His long bones in his arms and legs are visibly stunted. This could have been prevented if they had thought to test him when he was young. He was never tested until after I was finally diagnosed when he was 19. IMHO you should go ahead and do a long gluten-free trial in any child who has a parent who is celiac or gluten intolerant who is showing abnormal growth. One indication is to look at where this child was on his growth charts at birth and see if there is a sudden decrease in speed of growth. My DS was in the 65th % at birth but had dropped to the -10% by a year. The extreme drop occured after we added solid foods. Other than accusing me of not feeding him and testing his thyroid nothing was done. You have nothing to lose and a lot to gain by doing the gluten free diet strictly for while.