High Igg Gliadin But Neg Everything Else

[mom2kae]

My almost 4 yr. old daughter has been dropping off the weight charts since 9 mos. old. She is only 26 1/2 lbs. & has quite a few symptoms of Celiac.

*tooth enamel loss

*unexplained anemia

*diarrhea/loose stools

*distended belly

*failure to thrive/low weight/not gaining

Among others...

We had her tested for Celiac in '08 & was neg. We had her retested recently & her ped said that the tests came back fine except for the IGG gliadin was high. But then she said she was fine, not celiac.

So, of course, I came home & looked it up & find out that if that test was high than she has Celiac.

Now I'm confused. We have HMO & seriously, this ped drives me insane.

Does anyone know anything about this? Would you consider going gluten free? Should we get a specialist involved (if she'll give us a referall)? Any ideas?

Thanks!!!

Jenn

[RobynJ]

My almost 4 yr. old daughter has been dropping off the weight charts since 9 mos. old. She is only 26 1/2 lbs. & has quite a few symptoms of Celiac.

*tooth enamel loss

*unexplained anemia

*diarrhea/loose stools

*distended belly

*failure to thrive/low weight/not gaining

Among others...

We had her tested for Celiac in '08 & was neg. We had her retested recently & her ped said that the tests came back fine except for the IGG gliadin was high. But then she said she was fine, not celiac.

So, of course, I came home & looked it up & find out that if that test was high than she has Celiac.

Now I'm confused. We have HMO & seriously, this ped drives me insane.

Does anyone know anything about this? Would you consider going gluten free? Should we get a specialist involved (if she'll give us a referall)? Any ideas?

Thanks!!!

Jenn

You might want to have her get a RAST (blood allergy test). In addition to gluten my son was also allergic to Eggs. You could do the test and see if an intolerance to gluten appears. You could always try gluten free for a month and see if it helps. My son gained 4 lbs the first month and his behavior completely changed. Even if she is neg for celiac it doesn't mean she doesn't have an intolerance. At least that is my understanding.

[katerzz]

Blood tests are not the golden ticket for diagnosing celiac. We were told by the gastro doctor that especially in kids they can be false negative and that the only sure way to know is a biopsy. (adults and kids alike). My pediatrician kept telling us that he was just having issues he would grow out of... when we finally pushed for a biopsy they found 9 ULCERS caused from the gluten. The gastro doc said that pediatricians dont know enough about it and should always refer to a specialist. I pushed for a referral. I thought I was a crazy mom the whole time until they showed us the pictures of his scope. Then I felt awful for not pushing sooner. We basically poisoned our son for almost 2 years because the pediatrician told us everything was ok.

My sons blood tests and genetics tests all came back negative but his biopsy was positive. We are a month gluten free and my son is a completely different child. Daddy was also tested and he was positive on his biopsy. We are now looking at having my 3 year old tested just to be sure. Push for a specialist, even if its only for a peace of mind don't give up.

[macocha]

I am with Kater. Especially given your child's age, they need to be referred to a pediatric gi. a four year olds blood tests are not reliable for this disease.

Open Original Shared Link

and on that link it has this:

In children younger than three, with symptoms, antibody testing may not always be accurate. However, young children with symptoms (especially failure to thrive or persistent diarrhea) should be evaluated by a pediatric gastroenterologist. Children need to be eating wheat or barley-based cereals for some time, up to one year before they can generate an autoimmune response to gluten and have the blood testing.

print that page out and hand it to the doctor!

[mom2kae]

I am with Kater. Especially given your child's age, they need to be referred to a pediatric gi. a four year olds blood tests are not reliable for this disease.

Open Original Shared Link

and on that link it has this:

In children younger than three, with symptoms, antibody testing may not always be accurate. However, young children with symptoms (especially failure to thrive or persistent diarrhea) should be evaluated by a pediatric gastroenterologist. Children need to be eating wheat or barley-based cereals for some time, up to one year before they can generate an autoimmune response to gluten and have the blood testing.

print that page out and hand it to the doctor!

Thanks! I'm waiting for our referral now. My husband requested the referral from her nurse so we'll see how it goes. Usually they're about 4-5 days in receiving it. I'll keep you posted!

[mom2kae]

& I'm back! Sorry for the delay!

We went to a GI & he basically backed up what our ped said...that the other tests were neg & that because the IGg was high that it was just an intolerance to gluten (again, opposite of the research that I've been reading online). He tested her stool, urine, blood (for Cystic Fibrosis among other things) & everything came back fine. Not sure what kind of tests he was running/looking for though. I'm ordering her medical records from them as we speak so I'll know more.

I'm hoping to get on a PPO insurance soon for the kids so that we can go to anyone w/o needing a referral. Besides a GI who else would we go to? Endocrinologist? Or just another GI?

On another note, her big sis just got a gluten/casein test done & it came back that she should NOT have casein...so we may just go Gluten-free Casein-free for the family to benefit both girls.

Thanks again!

Jenn

[Skylark]

My understanding is that high anti-gliadin IgG is a sign of celiac if the person is IgA deficient. Do you have the link to the research where you found IgG suggested celiac in folks with normal IgA? I'd love to look at it. It's so hard to find everything in the literature.

Did they even test her overall IgA? You'll want to look for that along with the celiac panel when you get her medical records. If she's low IgA, then anti-gliadin IgG is definitely celiac. Otherwise, I'm not so sure. My understanding is that IgA is the antibody made in mucosa. Obviously the IgG means her immune system does recognize gluten.

All this said, kids are notoriously difficult do diagnose with bloodwork. Are they unwilling to biopsy based on the IgG? Her symptoms sure are celiac. If these docs are not willing to do the biopsy I agree that you might want another GI.

[MaryannG]

My understanding is that high anti-gliadin IgG is a sign of celiac if the person is IgA deficient. Do you have the link to the research where you found IgG suggested celiac in folks with normal IgA? I'd love to look at it. It's so hard to find everything in the literature.

Did they even test her overall IgA? You'll want to look for that along with the celiac panel when you get her medical records. If she's low IgA, then anti-gliadin IgG is definitely celiac. Otherwise, I'm not so sure. My understanding is that IgA is the antibody made in mucosa. Obviously the IgG means her immune system does recognize gluten.

All this said, kids are notoriously difficult do diagnose with bloodwork. Are they unwilling to biopsy based on the IgG? Her symptoms sure are celiac. If these docs are not willing to do the biopsy I agree that you might want another GI.

[MaryannG]

I had something similar. My daughter had severe constipation, failure to thrive, poor growth, and a distended belly. Her first GI tested her and said it came back negative. Well mothers instinct told me to go to another one. Thank God I did because he looked at the bloodwork and low and behold they didn't test all the levels needed. I am looking at my script right now from the celiac center I go to and here is what they test:

Total IgA

Anti-Gliadin IgA and IgG

Tissue Trans Glutaminase IgA and IgG

Antienomyseal AG (not sure on these initals but that is what it looks like)

I would get the blood work and make sure they tested all of these. My gluten-free had the same thing happen to her, and now they are going to get the bloodwork redone. It is so scary that these doctors don't know what to test for.

[mom2kae]

I had something similar. My daughter had severe constipation, failure to thrive, poor growth, and a distended belly. Her first GI tested her and said it came back negative. Well mothers instinct told me to go to another one. Thank God I did because he looked at the bloodwork and low and behold they didn't test all the levels needed. I am looking at my script right now from the celiac center I go to and here is what they test:

Total IgA

Anti-Gliadin IgA and IgG

Tissue Trans Glutaminase IgA and IgG

Antienomyseal AG (not sure on these initals but that is what it looks like)

I would get the blood work and make sure they tested all of these. My gluten-free had the same thing happen to her, and now they are going to get the bloodwork redone. It is so scary that these doctors don't know what to test for.

Thanks Maryann!

My daughter may just be gluten intolerant, that is definitely showing, but the #'s from the other tests (although neg) are rising. Tested at 2 yrs. & then tested again at 3 & all were elevated from the previous year. My husband just got laid off at the beginning of the summer so we lost our insurance & are looking into getting our own for the kids & getting a PPO this time to be able to go to doctors that we feel comfortable with. Hopefully we'll get an answer soon!

Jenn

[mom2kae]

My understanding is that high anti-gliadin IgG is a sign of celiac if the person is IgA deficient. Do you have the link to the research where you found IgG suggested celiac in folks with normal IgA? I'd love to look at it. It's so hard to find everything in the literature.

Did they even test her overall IgA? You'll want to look for that along with the celiac panel when you get her medical records. If she's low IgA, then anti-gliadin IgG is definitely celiac. Otherwise, I'm not so sure. My understanding is that IgA is the antibody made in mucosa. Obviously the IgG means her immune system does recognize gluten.

All this said, kids are notoriously difficult do diagnose with bloodwork. Are they unwilling to biopsy based on the IgG? Her symptoms sure are celiac. If these docs are not willing to do the biopsy I agree that you might want another GI.

I don't know everything about Celiac honestly. I've posted my first post on MANY Celiac boards/message groups, etc. & I've been told 99% of the time that if that IgG is high than it's probable that she has Celiac or that she definitely needs to see a specialist to determine if she's intolerant or has Celiac. She doesn't have a low IgA, it's "normal" but rising. Due to her age from what I understand, the #'s aren't often correct until they get high or something along that line.

She's also anemic but iron is fine, she also has a few other blood tests come back abnormal & they link to Celiac. Soo....I guess we just need to find a REAL pediatrician or specialist to help us figure this out. My older daughter has just gone through igG testing for food & other biomedical testings that we're waiting to hear the results about. So we may have to splurge & get my youngest tested through him to get a REAL answer.

Jenn

[suzyq63]

I thought that I would jump in because my daughter's story starts out similarly. I will try to keep it short.

Alison was diagnosed with Type 1 diabetes in January 2008. After diagnosis, she started to lose weight and have intestinal problems. Gastro tested her for celiac (both the celiac panel and genetic testing). The IgG antigliadin antibodies were high, but the rest of the celiac panel was negative. She was also found to carry both celiac genes. She did have an endoscopy and biopsies. They were also negative although there were some "abnormal" findings with the biopsies; but no villi damage and no intraepithelial lymphocytes. She has been retested every 6 months since then. Each time, her IgG numbers would increase. A year ago, her IgA antigliadin antibodies became positive, but still negative tTG. In December, 2009, all the numbers dropped quite a bit; so I thought we were all set for a while.

In July, 2010, she started feeling generally unwell. She was also anemic. It was time for another gastro follow-up, but I didn't think anything about it. Several days later, I got a call from the gastro to tell me that her tTG was positive. She had the endoscopy and biopsies. The biopsies did not find blunting of the villi, but it did find inflammation and intraepithelial lymphocytes (they cause the damage to the villi). The gastro does believe that there is damage somewhere in there, but the biopsies missed it. So she is now officially diagnosed with celiac and went gluten free yesterday.

Although this may not be the case for you, it is possible that you are experiencing a similar situation. I hope that you are able to find some answers very soon.

Paula

[mom2kae]

I thought that I would jump in because my daughter's story starts out similarly. I will try to keep it short.

Alison was diagnosed with Type 1 diabetes in January 2008. After diagnosis, she started to lose weight and have intestinal problems. Gastro tested her for celiac (both the celiac panel and genetic testing). The IgG antigliadin antibodies were high, but the rest of the celiac panel was negative. She was also found to carry both celiac genes. She did have an endoscopy and biopsies. They were also negative although there were some "abnormal" findings with the biopsies; but no villi damage and no intraepithelial lymphocytes. She has been retested every 6 months since then. Each time, her IgG numbers would increase. A year ago, her IgA antigliadin antibodies became positive, but still negative tTG. In December, 2009, all the numbers dropped quite a bit; so I thought we were all set for a while.

In July, 2010, she started feeling generally unwell. She was also anemic. It was time for another gastro follow-up, but I didn't think anything about it. Several days later, I got a call from the gastro to tell me that her tTG was positive. She had the endoscopy and biopsies. The biopsies did not find blunting of the villi, but it did find inflammation and intraepithelial lymphocytes (they cause the damage to the villi). The gastro does believe that there is damage somewhere in there, but the biopsies missed it. So she is now officially diagnosed with celiac and went gluten free yesterday.

Although this may not be the case for you, it is possible that you are experiencing a similar situation. I hope that you are able to find some answers very soon.

Paula

Thank you Paula!

I have a feeling we're headed in that direction. Seems like she'll be fine for a while & then start in again. Lately she's been saying her tummy hurts about 80% of the day. I do give her a lot of gluten-free choices because I happen to have some Gluten-free Casein-free recipes & such but she still eats mostly G foods...sigh. It's SO hard especially when you don't have a doctor behind you

Jenn

[suzyq63]

I am so sorry; I know it's hard to know what to do. My understanding is that if the IgG AGA is high, that is indicating that she is indeed at least sensitive to gluten. So most likely her symptoms are related to that gluten sensitivity.

When we first found out about Alison's IgG being high, I went back and forth trying to decide whether to go gluten free. Because we were fortunate that her symptoms (or what we thought were her symptoms) seemed to resolve, I decided to let her continue eating gluten. I also knew that we were following her every 6 months and that if any symptoms changed, I could immediately contact the gastro and he would recheck sooner; so I was fairly comfortable in waiting. If her symptoms had continued, I know it would have been hard for me to decide. Whether it's reasonable or not, I really wanted the diagnosis to be "official".

I hope you're able to come to a decision about what to do and be at peace about it. I do believe that a mom's gut instinct is rarely wrong; I've found it to be right the vast majority of the time. But again, a mom's instinct isn't "official".

Paula

[mom2kae]

I am so sorry; I know it's hard to know what to do. My understanding is that if the IgG AGA is high, that is indicating that she is indeed at least sensitive to gluten. So most likely her symptoms are related to that gluten sensitivity.

When we first found out about Alison's IgG being high, I went back and forth trying to decide whether to go gluten free. Because we were fortunate that her symptoms (or what we thought were her symptoms) seemed to resolve, I decided to let her continue eating gluten. I also knew that we were following her every 6 months and that if any symptoms changed, I could immediately contact the gastro and he would recheck sooner; so I was fairly comfortable in waiting. If her symptoms had continued, I know it would have been hard for me to decide. Whether it's reasonable or not, I really wanted the diagnosis to be "official".

I hope you're able to come to a decision about what to do and be at peace about it. I do believe that a mom's gut instinct is rarely wrong; I've found it to be right the vast majority of the time. But again, a mom's instinct isn't "official".

Paula

I'm hoping to get her to see my older daughter's DAN! (biomedical doctor) within the next month or so. Our older daughter has sensory issues (SPD) & definitely had food issues (mainly dairy). Our regular pediatrician kept dismissing our claims about her hyper activity, weird stools, constipation, etc. She humored us & gave her an allergy test to check for a dairy allergy that came back fine & told us pretty much "told ya so". We went to the DAN! doctor & we're still waiting for her official IGg food panel results but she took gluten/casein urine test & sure enough...she is not supposed to have casein. I can't wait to go & show her ped the paperwork & say I TOLD YOU SO!!!! When we do go to the biomedical doctor all I really want my youngest to have is the gluten/casein urine test & the IgG food panel. That way we know what she has an issue with & go from there.

SO frustrating!!!!

Jenn