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Thank you to everyone who responded to my question about my situation of only being positive for Gliadin IgG Antibodies. Here is a summary of the responses I received and down below are the actual responses.
Four people said to find out if I'm IgA deficient by getting a test for total serum IgA. One person said 30% of Celiacs are IgA deficient and that this effects the transglutaminase results also. One person confirmed for me that "blood tests tend to pick up middle- to late-stage celiac disease, not early stages, even though the patient is experiencing symptoms". My doctor said that about the transglutaminase test. Another person said that for children 2 and under "IgA can be falsely negative because [they] naturally produce less IgA."
One person and her daughter only tested positive for Gliadin IgG and went GF. Her daughter wasn't 100% GF for a year and when she went GF completely the mom saw "marked improvement". She herself feels much better and has other IgG food allergies just like me, which she's staying away from also.
A woman and her two children only tested positive for Gliadin IgG and went GF and feel much better. Her children were having diahrea before being GF. She had the gene test for gluten intolerance and Celiac done. It came up positive only for the gluten intolerance gene. I didn't know there was a test for this and will make sure we get tested for both.
One person said that the genetic testing is good and that "IgA and IgG reactions really hurt your body, even though only a small porportion end up with celiac." They also said "there is good evidence that the gut is a lot more permeable in little kids."
One person said the gene test wasn't accurate. I think because it's not 100% accurate.
Three people said to go get a biopsy. From what I've heard, they aren't always accurate and I feel that if I did test negative to it, then I would still have my suspicions. And there is no way I'm putting my two year old through a biopsy.
In summary, I plan to have the total serum IgA testing to see if I'm deficient. The genetic testing for gluten intolerance and celiac. And unrelated to what anyone has said, possibly get tested to make sure the bad bacteria isn't high in my intestines (and the good bacteria is at a good level too) - my mom just got tested for this through my ND and the numbers were pretty bad - she found out she was celiac 3 years ago and she feels better than ever after getting this taken care of.
Thanks again to everyone!
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Responses:
If you are IgA deficient, the IgG would be what they would have to go by. The EMA or tTG would come out negative even if you have celiac. (Many celiacs are IgA deficient.) They would then have to further check by doing biopsy.
If your TOTAL serum IgA was low - that would prove the deficiency also. (Many docs only order Iga, but forget to also order a total serum IgA. Both should be part of the celiac panel. many docs aren't "up to speed" on celiac & don't order it....
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My story is SO similar to yours. The differences are that 1) I had no diagnosed CD in my family and 2) I was very sick (pnuemonia for months) prior to visiting the ND.
Like you, my IgG was positive and my IgA was negative. I actually had a biopsy done about 4 months after I went gluten free - and found out later that my biopsy results were meaningless (because I had been GF for so long). I did an elimination diet and has ELISA blood tests done - and I too had postive IGG results to many many foods. About 6 months later I had my daughter's blood work done - and at age 4 her IgG was borderline positive, IgA negative.
That was 3 years ago. There is now NO doubt in my mind that I have celiac - and there has been no doubt for 2 years. I am very very sensitive to gluten, and have to follow all the strict celiac dietary rules in order to maximize my "not sick" days. I also have to be very strict about avoid all casein (in dairy), soy, corn and eggs.
I was wishy washy on my daughter for a long time. She was "mostly" GF during kindergarten - meaning that she ate pizza on pizza Fridays at school, but didn't eat gluten at home. She became 100% GF during first grade and I saw a marked improvement in her appearance and her health. The change in her appearance was so noticeable that numerous other parents remarked on it (no dark circles under her eyes, the pasty white complexion gone). So I am now convcined that my daughter, like me, must remain gluten free.
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When one “tries out” a gluten-free diet, if that person really is celiac, the antibody levels are reduced and the villi start to regenerate and heal. Ideally, a person should be on a gluten-containing diet during the blood testing and “gold standard” tissue biopsies. Also, when one is IgA deficient, all but the IgG test could be negative – incorrectly! All of the other tests are based on the IgA factor and could result in false negatives. Also, the blood tests tend to pick up middle- to late-stage celiac disease, not early stages, even though the patient is experiencing symptoms. You do have a dilemma, but I would get a serum IgA test to see if you are IgA deficient and the celiac tests could be falsely negative.
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First, for your 2 year old, the IgA can be falsely negative because those 2 and under naturally produce less IgA. The Ttg and IgA tests should also always be run with a Total serum IgA to determine if there is IgA deficiency - which would also result in false negative results. The IgG test is very sensitive, but not very specific. Meaning it can be elevated for many reasons which cause inflammation in the GI tract, not just CD. I would make sure you get a Total serum IgA, and wait for those results before proceeding. (And most Doctors seem to be unaware - or in disagreement-about kids 2 and under for the Ttg and IgA antigliadin antibodies, but there is plenty of research regarding this very important element of testing children.)
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My two children and I are in a similar situation with our blood test results. I would appreciate your posting a summary of your responses to the list.
My 5 year old son had chronic diarrhea as a 2 year old. He tested positive only on the IgG and negative on the other two parts of the test. We put him on the GF diet and his diarrhea cleared up immediately. 8 months later, we did a challenge, and some more subtle symptoms came back. The ped. gastro wanted to confirm with a biopsy, but felt that he outgrew his gluten intolerance (and that he doesn't have Celiac). I really didn't want to put him through a biopsy at the age of 3, so we just follow a GF diet, except on special occasions. I then had myself tested and my younger son (who was following the same path with the diarrhea) and we both had the same results. I then had tests done through Enterolab for the gene sequence, and it shows we have a gluten intolerance gene, but not celiac gene along with malabsorption.
We have been following the GF diet for a year now. I stopped feeling tired all the time and stopped getting stomach aches, and the kids are doing great. Recently, I have let them cheat (cupcakes at school) and I have cheated and ate pizza a few times. We didn't get sick. My plan is that I want to stay on a mostly GF diet, and eat regular food for special occasions. My pediatrician thinks the kids probably grew out of their intolerance, but I really am afraid to give it to them all the time for fear of it building up in their systems.
So, if you can share any info you get, I would really appreciate it. I know most people are probably going to say get a biopsy (like my gastroenterologist does), but if the damage isn't bad enough, I don't think it will show up. I would rather prevent the damage with an ounce of prevention.
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It doesn't matter about what else it could be you do have celiac and it's in the family. save your money on the gene test it isn't a true test my doctor said, one can have CD without the gene
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If it makes you feel better, the genetic test is good. Also reading the book "Dangerous Grains". But basically if you react to wheat, then stop reacting when you stop eating it, then you react to wheat. If you DIDN'T react, and had anemia, then the test would be really helpful because you wouldn't know you are reacting. You can mask the reaction pretty easily too, by taking probiotics and enzymes or a glass of wine maybe, but I don't know of any other conditions that ONLY shows up when you eat wheat (vs, say, a baked potato: some people do react to starches in general).
Since at least 1/5 of the population reacts to the stuff, that's not uncommon. IgA and IgG reactions really hurt your body, even though only a small porportion end up with celiac. Once it progresses to celiac though, you have major tissue/organ damage that can take a long time to heal.
As for your kid -- yeah, likely they'll get damage eventually. But worse ... if you feed a kid gluten-foods now, those will be in their memory as "comfort foods" forever. Now is your chance to give the kid GOOD food memories and good habits. Also there is good evidence that the gut is a lot more permeable in little kids, and foods like gluten can have devastating effects on development, that they don't have if introduced later in life. Even if the kid ISN'T reacting now. So your safest bet is to feed the kid good, GF food, and after they are 8-9 years old and go out and eat some of their friend's lunch at school it won't be so devastating to their system. Plus it will be a LOT easier on you. I don't see how a Mom can be GF and produce gluten foods for their kids! Or why anyone would want to.
I cook for other adults, BTW, that are NOT GF. They get GF food, because that is all I'll cook. No one really notices the difference. Pasta was the only real problem, and Tinkyada solved that!
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Biopsy responses:
The only way you can know for sure if you have Celiac is by a biopsy. You should see a gastroenterologist and get the biopsy because then you'll have a definite answer and if the biopsy is negative the gastroenterologist will know what other things you should be tested for. I think a doctor is really the only person who can diagnose celiac, although I'm sure you can get good advice from a naturalpath since he has it. Since your mother has it is very likely that you have it. Your daughter should also have the biopsy, even if yours is negative, because she could still have the gene for celiac. It is very important to get the biopsy, especially since the blood tests were positive and you both have symptoms. I don't want to be on a gluten free diet either, but I'd rather do that then have cancer, which is what celiac can lead to if untreated, and I'm sure that you would feel the same way, especially with your child, you wouldn't want to take any chances or leave anything uncertain.
It will also be easier for her to start the diet at such a young age, since she won't know what she's missing. It's hard for everyone, but it's worth it if you feel better and know that you are doing the right thing! This is our first gluten free thanksgiving, and so far so good!! We've had everything that we would normally have, we just made some adjustments.
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Get thee to a knowledgeable person who regularly deals with CD patients! You need to have a biopsy in order to confirm CD. So, you need to see a GOOD gastroenterologist. (Columbia University, Univ. of Maryland, Chicago) Have you had the DQ2 and DQ8 tests? Those are usually a first step now. They can rule OUT cd, but can't tell you if you have it - only if you are the genetic marker for it. If you are negative on those, you cannot have CD.I encourage you to get some information from one of the main CD centers in the US. They can provide you and your doctor with more accurate info for diagnosis.
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The reason for doing the Gliadin IgG is that 30% of celiacs are IgA deficient, resulting in the Gliadin IgA and transglutaminase to be negative. Most labs also do a total IgA to verify that the individual is actually IgA deficient. There are no differences in how CD manifests in the individual.
You should have had a biopsy immediately after the positive serological results (3 months ago) to verify the diagnosis. Your daughter too. Now that you both have been on a gluten free diet the results would not be accurate. You would need to go back on gluten for at least 6 months before doing the biopsy to make sure that the results were accurate. Also if the testing was done through Permethesis labs (http://www.prometheuslabs.com/) you would have been genetically tested from the same blood sample. The same goes for your daughter. You might want to check with your doctor. But that is the only lab that automatically does genetic testing.
I would check with the list for someone in your area who specializes in CD for the biopsy.
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