Celiac And Iga Deficient?

[vmlehtonen]

I have a daughter who was diagnosed IgA deficient at 2.5 years old and she is now 5.5 years old; I asked the doctor to do a celiac test because I just found out that we have a family history of this and she has some of the symptoms. When her bloodwork came back they said that everything was FABULOUS (as the nurse put it); I had already called the lab itself and got the actual numbers and noticed that her IgG AGA (anti-gliadin antibody) was high and asked why this is? She didn't know, the doctor talked in circles about it and said that he would be happy to send me to a gastroenterologist to look further. So that is our next step. I have been reading up and I have found some websites that support Celiac Disease if you are IgA deficient and also have high IgG AGA.

So my question is: Has anyone else experienced this problem in getting diagnosed?????

Her bloodwork was mostly normal and here were the results of the abnormal stuff:

IgA Quantitative <5 (normal is 23-137 according to this lab)

AGA IgG was 22 (normal is 0-10 for this lab)

Her TtG, and EMA was normal; and it would be normal because her body does not use IgA to react to allergens because she is IgA deficient.

Is it worth taking her an hour and a half away to see a gastroenterologist? Do I have the right to be concerned about this? Anyone else get diagnosed with Celiac and IgA deficiency?

Thanks for your input,

Vickie

[aikiducky]

I think you're right to be concerned. Plus I think your doctor wasn't really well informed about the relevance of IgA deficiency on celiac testing. Basically all the tests apart from the Igg test were useless for your daughter since as you said yourself they would always be in the normal range however sick she might be. I think it's a good idea to see a gastro doc, and to ask for a biopsy.

Pauliina

[Joni63]

My son is going through a similar situation.

Antigliadin Abs, IgG is 16, normal 0-9

total IgA is 53 normal 34-305

All other numbers came out to normal range.

Although total IgA is not under the lower limits, it is on the low end.

Our doctor said to put him on the diet for a few months, recheck his bloodwork and if the Antigliadin Abs, IgG comes down, we will know it is Celiac.

I don't know how reliable or accurate this method is, but this is what our PCP said. I think since my sister and I both have Celiac, he would diagnose it based on the dietary response. He told me of another patient he has who Celiac and she saw symptoms in her children and he told her to just put them on the diet and see if they improve. She did and they are much better. He didn't think it was necessary to put them through the bloodwork and scope since a diet change will be the ultimate answer.

I honestly don't know the best way to approach the situation myself. I'd hate to put him through a bunch of tests that might come out negative and then have him go gluten free anyway because the possibility is high he could have it anyway.

I did start him on the gluten-free diet and I'm sure it won't take long to figure out if he feels better and his behavior improves.

Can you just try your daughter on the diet?

Do you feel you need a definate diagnosis?

[vmlehtonen]

I think I would feel confident putting her on a gluten free diet without having a biopsy if a Gastroenterologist told me to do so. With our pediatrician not even knowing that her IgG was not normal or why it wasn't normal or even being concerned that it wasn't normal, I don't feel confident with his initial "everything's ok" diagnosis.

I have another question: how likely is it that me or my husband have celiac if we have a child with celiac? I have been having really horrible intestinal symptoms over the last three months and my doctor told me it was anxiety, then she told me it was reflux and IBS......I am ready to call her and ask her to give me a celiac test as well!

Vickie

PS Thanks for your reply

[Joni63]

In my case my Gastro is hard to deal with and when I went back to him telling him I felt horrible, he gave me a CBC and everything showed normal so he told me my problems weren't related to Celiac. He even said foggy head would not be caused by Celiac.

I went back to my PCP and asked her to test my iron and other vitamins and she did and found problems. Learn as much as you can, you will need to be very proactive about asking for tests if you ever feel things are still not right.

Maybe you will have better success with your Gastro.

The chances are definately higher when a family member has Celiac. I don't know what the numbers are, but I think it doubles your chances. You or your husband must have passed the gene to your daughter. Maybe someone else can answer that better.

Your symptoms do sound suspect, it wouldn't hurt to get a full Celiac panel for yourself. Don't let the problems go, take care of yourself.

Good luck to you, I hope you get some answers.

[ShayFL]

Vicki.....get yourself tested! It might save you having to get your little girl biopsied (not fun and very scary for her). If you come back positive, then you can rest assured that her positive bloodwork (and it is positive) indicates a NEED for the gluten-free diet. Plus it will be A LOT easier if you just have a 100% gluten-free household. It makes life sooooo much easier. And if you and your daughter are both Celiac, I believe your husband would agree to this (unless he is not a very compassionate person).

He should be tested too. But it can be hard to get men to go to the doctor.

[happygirl]

See Open Original Shared Link for some info on testing, including IgA deficiency.

[vmlehtonen]

happygirl--thank you for the website; that is one of the sites I found in my search that made me worry about her positive AGA IgG count; I have read conflicting information with what's in that article. Because the AGA IgG is not as sensitive/specific to celiac, some doctor's don't recognize it as a problem with celiac, but since Julia is IgA deficient I think they should. I think they should have ordered a TtG IgG instead of a TtG IgA. I am going to take the advice of others and request that my doctor order tests for me, I wonder if I am also IgA deficient, so you know I will be requesting tests that I have read about! I wonder what other peoples bloodwork looks like for an IgA deficient person.

Thanks,

Vickie

[ShayFL]

My IgA is not "deficient" but it is at the very low end. And I came back positive for antibodies on everything in the celiac panel. But all within the "normal" range. I suspect that if I had more IgA, I would have more antibodies as well.

Im gluten free anyway. Ive got 2 genes and in my mind positive blood work. Endoscopy was out for me. I have a zillion adhesions around my intestines and I am ubber high risk for perforation. No thanks!! I'll do the diet.

And already some positive results.

[Joni63]

My IgA is not "deficient" but it is at the very low end. And I came back positive for antibodies on everything in the celiac panel. But all within the "normal" range. I suspect that if I had more IgA, I would have more antibodies as well.

Im gluten free anyway. Ive got 2 genes and in my mind positive blood work. Endoscopy was out for me. I have a zillion adhesions around my intestines and I am ubber high risk for perforation. No thanks!! I'll do the diet.

And already some positive results.

Shay, I'm confused about your post? If your results were positive, they wouldn't be within the normal range, right?

I'm glad your having positive results with the diet.

[lizard00]

I am IgA deficient too. I had my Celiac Panel done in Dec 07. My new GI looked at them 2 weeks ago and said they were worthless since my IgA was very very low. He ran the genetic panel and guess what? I am positive for DQ2 so he says that with the gene and my positive response to the diet, there is a high likelihood that I have Celiac. He just never had the chance to do a biopsy, as I went gluten-free 6 months ago and I didn't see him until mid May. He still wants to do an EGD to rule out any unresolved damage. I'm not worrying about that until Aug when I go back to see him.

So yes, I had a hard time getting a diagnosis, but I did. So if you believe that your daughter has Celiac, then don't stop until you are satisfied with your answers. Whether that's simply taking her off gluten, which is what I did to myself, or fighting to get an official diagnosis. There are doctors that know what they are doing out there, we just have to find them.

[ShayFL]

Shay, I'm confused about your post? If your results were positive, they wouldn't be within the normal range, right?

I'm glad your having positive results with the diet.

For instance my tTG IgA was a "1" but the "normal" range is 0-3

My Antigliadin Abs IgA was "1" but the "normal" range is 0-4

I also showed antibodies for IgG too.

So what I am saying is that if I am on the low end for IgA, then I wouldnt have as many antibodies to show up, so that is why I am at only "1". If I had more IgA, then I would expect those results to be higher. Hope this makes sense.

My Fecal IgA was almost non-existent.

[vmlehtonen]

I am IgA deficient too. I had my Celiac Panel done in Dec 07. My new GI looked at them 2 weeks ago and said they were worthless since my IgA was very very low. He ran the genetic panel and guess what? I am positive for DQ2 so he says that with the gene and my positive response to the diet, there is a high likelihood that I have Celiac. He just never had the chance to do a biopsy, as I went gluten-free 6 months ago and I didn't see him until mid May. He still wants to do an EGD to rule out any unresolved damage. I'm not worrying about that until Aug when I go back to see him.

So yes, I had a hard time getting a diagnosis, but I did. So if you believe that your daughter has Celiac, then don't stop until you are satisfied with your answers. Whether that's simply taking her off gluten, which is what I did to myself, or fighting to get an official diagnosis. There are doctors that know what they are doing out there, we just have to find them.

Did you have IgG levels (instead of IgA) tested at all with the AGA or TtG? My daughter also had ITP when she was younger so they kept asking us if Lupus runs in our family (my grandma was also tested for Lupus and was neg.); there may be a connection between all of these disorders with my daughter since they are all autoimmune. I think that going gluten free is going to be expensive, and hard for a child; so I just don't want to put her through that if I don't absolutely have to, that is my only hestitation.....it's terribly difficult for adults to do, let alone children. I know she would be fine, I just want to have a few more blood tests ran just to see if we could have further confirmation. Maybe the gastro doc that we are going to see will order some gene testing, like you had. I am really reading up on this and will feel confident when I speak to them that I will know what I am talking about. I have been telling everyone that I am my child's only advocate and I am ready to get out there and figure this out! For the sake of her health!

Thanks all for your posts,

Vickie

[lizard00]

No, I didn't have IgG testing because the PA that initially ordered my tests, IMO, ordered them only to humor me. When they came back negative, she was essentially done with me, and if I continued to eat gluten-free, that was my decision. The first GI I met with saw that the panel was negative, and told me that if I wanted to eat an indochinese diet, that was my own decision, although it was obviously unnecessary; to have Celiac you must first have the gene. (which he obviously was convinced I did not... hmmm...) By the time I got around to another doctor and referred to another GI, all the testing was a little too late. I felt 300% better and didn't care if I had a diagnosis if it meant I had to do a month long gluten challenge.

This new GI pushed for the DNA test because of the risks associated with Celiac. He wants to monitor me closer that a non Celiac, so he felt that knowing was very important. And I agreed with him.

I can definitely see why you want a diagnosis with your daughter. It is harder on children than adults because they can feel different. For our family, I haven't noticed it to be more expensive; honestly, our grocery bill has kind of remained the same. But it's the inability to eat whatever and wherever that becomes the challenge.

You truly are your child's biggest and often only health advocate. A wise pediatrician will know that you know better than anyone else what is or is not normal for your child. Celiac can cause many, many things, and having one autoimmune disorder raises the odds of another. Especially if it's left untreated. Could be that you see resolution of the other problems if Celiac is your answer. You are at a critical time to pursue testing, and honestly, if it were my son in your daughter's situation, I would do just that.

[vmlehtonen]

I took the advice of others and went to the doctor and asked for the Celiac Screen. She didn't want to do the total IgA for me and I insisted further and she told me that insurance might not pay for it, and I said I didn't care, I needed it as my daughter has IgA deficiency; she didn't think I needed it! How unaware these doctors are about Celiac is mind boggling.....she only ordered the whole series to humor me! Because I am not skinny she doesn't think that Celiac is my problem (she thinks reflux and IBS are to blame, and weight). I'm just frustrated with this whole process, but I am not giving up until I get some answers, and more tests if need be. She wouldn't order the AGA IgG or the TtG IgG; but if the IgA comes back deficient, I will definitely request those tests!!! If she still won't order them, I will be finding a new doctor.

I talked with a nurse from the celiac support group and she said something about the bowel movements floating.....I have been trying to keep a closer eye on what is going on in the bathroom with my daughter. What does "grease" look like in the toilet water? She has a cloudy clear/whitish film floating around after she has a BM. She has always had soft BM since she was a baby.

Also, I was looking at her growth chart and you will find this interesting: she was in the 50th percentile at 4 months old for weight and head circumference, at 6.5 months old (a month after starting homemade cereals) she was in the 15th percentile!!!!! Such a drastic change in weight! Crazy! But this is all starting to make sense and come together like pieces of a very large puzzle! So believe me when I say that I will definitely pursue this for my daughters sake.

Thanks for listening to me rant!

Vickie

[vmlehtonen]

First test is back, I am IgA deficient like my daughter (<5 was my level, same as hers)! So I called the office and asked them to add AGA IgG, TtG IgG, we will see if they actually follow thru!

Vickie

[Joni63]

For instance my tTG IgA was a "1" but the "normal" range is 0-3

My Antigliadin Abs IgA was "1" but the "normal" range is 0-4

I also showed antibodies for IgG too.

So what I am saying is that if I am on the low end for IgA, then I wouldnt have as many antibodies to show up, so that is why I am at only "1". If I had more IgA, then I would expect those results to be higher. Hope this makes sense.

My Fecal IgA was almost non-existent.

Ok, now I get it. My sons was very similar. I can't remember which ones, but a couple numbers were also "1". What your saying does make sense.

First test is back, I am IgA deficient like my daughter (<5 was my level, same as hers)! So I called the office and asked them to add AGA IgG, TtG IgG, we will see if they actually follow thru!

Vickie

Vickie, glad your getting some answers. Hope you are able to get the other tests so you can have a better idea what's going on.

[fedora]

hey,

hey Joni!

I found this online on pubmed

We measured salivary, urinary and fecal secretory IgA (sIgA) levels in 11 children with total IgA deficiency and in 6 children with partial IgA deficiency using an ELISA technique. This was based on flexible microplates coated with antisecretory component (SC) and peroxidase-conjugated anti-IgA as a second antibody. Selective IgA deficiency is diagnosed as a serum IgA concentration < or = 0.05 g/l; partial IgA deficiency is diagnosed as a serum concentration of IgA > 0.05 g/l but 2 SD below normal levels. No salivary or fecal sIgA, and only low levels of urinary sIgA, were detected in the selective IgA-deficient group. The partial IgA-deficient children presented with low levels of salivary, urinary and fecal sIgA. Fecal sIgA levels correlated with salivary sIgA levels (p < 0.01) but not with urinary sIgA levels (p > 0.05) in the IgA-deficient patients. We found that all the children with partial IgA deficiency, except one, had detectable, but low values of secretory IgA. Our data suggest that these patients also have a partial mucosal IgA deficiency.

According to this then < or = 0.05 g/L is deficient and IgA > 0.05 g/l but 2 SD(standard deviations) below normal levels is partially deficient.

I have been unable to find any other info on numbers for partial IgA deficiency.

[fedora]

vicki,

was your level grams per liter or milligrams per liter.

I found two other references that referred to milligrams instead of grams.

they said <5milligrams per dL

and this at emedicine:

Total immunoglobulin A deficiency (IgAD) is defined as an undetectable serum immunoglobulin A (IgA) level at a value of 5 mg/dL (0.05 g/L) in humans. Partial IgAD refers to detectable but decreased IgA levels that are more than 2 standard deviations below normal age-adjusted means (Daele, 2000)

I found this all confusing till I realized that the mg was with dL and the grams were with Liters.

mg = 0.001 g; dL = 0.1 L

mg / dL = 0.001 g/ 0.1 L = 0.01 g/L

[vmlehtonen]

vicki,

was your level grams per liter or milligrams per liter.

I found two other references that referred to milligrams instead of grams.

they said <5milligrams per dL

and this at emedicine:

Total immunoglobulin A deficiency (IgAD) is defined as an undetectable serum immunoglobulin A (IgA) level at a value of 5 mg/dL (0.05 g/L) in humans. Partial IgAD refers to detectable but decreased IgA levels that are more than 2 standard deviations below normal age-adjusted means (Daele, 2000)

I found this all confusing till I realized that the mg was with dL and the grams were with Liters.

mg = 0.001 g; dL = 0.1 L

mg / dL = 0.001 g/ 0.1 L = 0.01 g/L

I am not sure which they used, I just know that the person on the phone told me that the normal started at 34 and went up to like 350 or something. Anyways, they also told me that <5 is the lowest possible score for IgA at this lab because they don't even take the time to measure it if you have less than 5, so it could be 1 or 2, but it seems that it is virtually undetectable if you have a value less than 5, so they just give you the value of <5. I don't have the papers in front of me yet, but I did ask the lab to send me the results when they are finished.

The other thing that you might be referring to is the levels of IgA being measured in the celiac panel, like AGA or TtG. Those are measured differently than Total IgA. Those values are a range from 0-5 or something like that, so that number would be a value less than 5.......I don't have those results yet, but my celiac panel will be in the correct range because I am IgA deficient and won't show a reaction to the gluten.

Does this make sense?

Vickie