Trying To Understand Celiac Test Results...?

[vita1978]

I am brand new here, any help is so greatly appreciated! I have a 25 month old son who is developmentally delayed with no speech at all. He has several sterotypical behaviors. He is most likely autistic, although we will not have a formal diagnosis until the end of March. We saw a neurologist in January who scheduled several tests, one of which was a blood test for celiac. I have just recieved the results of this test and am totally confused. The results were as follows:

Gliadin IgA Antibody: 6 (negative is <20)

Gliadin IgG Antibody: 79 (negative is <20)

It would appear that the second number is highly elevated, but does that mean we are dealing with a potential Celiac diagnosis? My son has very frequent bowel movements, (up to 5 or more a day) never solid and very foul smelling. He is already off cows milk becuase we thought, even a year ago, this was a cuase of his bowel troubles. He is quite short for his age (although over 50% for weight). He is very fair skinned.

I know there is the whole Gluten Free, Casein Free diet that is highly recommenede for children with Autism, and I am so overwhelmed by all of this information I could cry.

If any one has any input....my questions are

1) Are the above results indicative of anything at all?

2) If so, What should I do now?

Thanks a million billion times for any information!

Nicole

[Nic]

I noticed this post this morning, as did many others if you noticed. I don't know the answer to your question. I didn't want you to think no one was answering. I would interpret the results the same way you did but I don't know for sure. When my son had his blood tested the results went back to his Ped. GI. He called and simply said, " his antibody levels are through the roof. He needs a biopsy." Through the roof would mean they are high. Therefore, you may be interpreting correctly. Has your doctor seen the results?

Nicole

[penguin]

Personally, my blood test results came back similar. Everything was perfectly normal (or low even!) except for the IgG, which was high. My doctor is taking the "duh" approach, if the gluten free diet works, you have it, if it doesn't you don't. She didn't feel such an invasive test as the biopsy was necessary, especially since I had one once before for another reason.

In your son's case, they may do a biopsy, and if they decide to do that, you have to keep him on gluten so that the damage shows. It pretty much sucks either way. However, if it is the gluten that is bothering him, it should make a world of difference going gluten-free, especially in light of his autism.

Listen to the doctors until they screw up, then find new ones

[Guest nini]

it doesn't look like they did a complete celiac panel, but even with what you have, that one result is def. elevated. And in my humble opinion it is sufficient to say that he def. has a problem with gluten, and with the autism you are right about the gluten free casein free diet, it is highly reccommended for autistic children, and many (especially if their autism is BECAUSE of gluten intolerance)

It is not as overwhelming as it may at first appear. Children can absolutely thrive on a diet of fresh fruits and vegetables, lean meats and protein, and safe grains...

[Dietcokehead]

Hi, I am sorry that your son is having these health issues.

My son started having issues when he was 2 and was finally diagnosed at 3. His bloodwork was negative. Completely negative. However, I had a wonderful GI doc that did a biopsy anyway which showed definite signs of Celiac Disease. Bloodwork in young children is not always reliable so don't put all your faith in those results.

Once we got his biopsy results back we started on the gluten-free diet and it was like someone gave me a new kid who was 100 times happier than the old one! He stopped having diarrhea, stomach aches, tantrums, constant hunger. His stomach went from bloated to flat and he went from the 3% to the 25% in height!

I would recommend getting a biopsy. It was a good way for us to know for sure that he had internal damage, and know that we were doing the right thing by starting the gluten-free diet.

Good luck!!

[elfkin]

I am sorry. I don't know anything about the numbers. My son was diagnosed at @ 15 months old. He is still speech delayed, although he is in speech therapy and doing MUCH better. He displays autistic symptoms sometimes when he is accidentally glutened. "Special Diets for Special Kids" is one book that I found helpful.

Mostly my heart just aches for you right now, because I know first hand the pain of confusion and not knowing. My son was so sick. People had said that I nursed him too much, let him get by with too much, etc., etc. to explain his odd bouts of behaviour. In the end, it was gluten that was the problem. He is fine as long as gluten is completely eliminated. Even trace amount send him into odd behaviour patterns, speech difficulties, terrible stomach pain, bad skin problems, etc.

I do not really know what to tell you to do next. I guess keep pursuing diagnosis? I am so sorry for your pain. Hang in there. If it is any help at all, it will probably get much better when you figure out exactly what the problems are. It is so hard to be left wondering.

The biopsy and genetic testing were the ticket for us. His bloodwork was also questionable. I am sorry that I do not know the numbers.

[TCA]

My son't IgG was very high, but other Antibodies weren't so bad. he had 2 negative biopsies, but irritation was present. I finally put him on the diet and things have been sooooo much better. He is not autistic, but has speech issues and didn't walk until 16 mos. old. He had constant Diarrhea, irritibiltiy, failure to thrive (height and weight), tooth enamel defects, geometric patterns on toungue(sores). All of that is better now, except the teeth. He's been on the diet almost 2 mos. now and has gone up a clothing size. It's really amazing. You'll have to decide about further testing, but the proof was in the pudding (or the gluten-free diet) for us. Good luck!

[Nic]

My son't IgG was very high, but other Antibodies weren't so bad. he had 2 negative biopsies, but irritation was present. I finally put him on the diet and things have been sooooo much better. He is not autistic, but has speech issues and didn't walk until 16 mos. old. He had constant Diarrhea, irritibiltiy, failure to thrive (height and weight), tooth enamel defects, geometric patterns on toungue(sores). All of that is better now, except the teeth. He's been on the diet almost 2 mos. now and has gone up a clothing size. It's really amazing. You'll have to decide about further testing, but the proof was in the pudding (or the gluten-free diet) for us. Good luck!

I just read your post and have a question. Is having geometric patterns on the tongue a symtom of Celiac? My father and my son have Celiac. I went to get tested for the antibodies during a routine physical and for some reason, the lab forgot to run the Celiac tests. That was in the summer and I have not been back to the doctors yet. I have no symptoms of Celiac but do have the geometric patterns on my tongue.

Nicole

[Guest Robbin]

My heart goes out to you Nicole-I know what it's like to have a sick child and it is a nightmare. I can only tell you what I would do in your case for what it's worth. I have learned from this forum and reading on my own that children have unreliable blood results (heck, so do alot of adults including myself). With that said, a negative is not always 100% but a positive is accurate. He has one definite positive, and many symptoms, so--I would have the biopsy, and then go from there. Things will only get better. The diet will be hard at first but you will be SAVING his life. You can do this. My oldest child is type 1 diabetic and 21 years old--I am convinced he has had celiac his entire life and the doctors were clueless. I believe that is what led to the diabetes. He is bull-headed and refuses to get tested. A childhood of blood tests, insulin shots, restricted diet/life has left him angry at the whole world, I think. He cannot gain weight and is not in good control of his blood sugars so I am left in a constant state of anguish/worry--Please explore every avenue if there is even a chance of this being the problem. I never knew anything about celiac when my son was a baby, I will forever wish I did. My 13 yr. old is now showing the same symptoms --I am getting him tested with enterolab--when they are teenagers it is a HUGE battle to get them to listen and change their eating habits. ( Maybe I just have really really really hard-headed, stubborn kids!) My thoughts and prayers are with you and your baby.

[TCA]

I just read your post and have a question. Is having geometric patterns on the tongue a symtom of Celiac? My father and my son have Celiac. I went to get tested for the antibodies during a routine physical and for some reason, the lab forgot to run the Celiac tests. That was in the summer and I have not been back to the doctors yet. I have no symptoms of Celiac but do have the geometric patterns on my tongue.

Nicole

My son also had the geometric toungue and it was getting worse before we started the diet. It's normal now after less than 2 mos. He got glutened Wed. and said his tummy was hurting, but the tongue is still ok. This was the last thing to clear up for him. I don't know what else could cause that, but I would be suspicious. I didn't have any symptoms either, or so I thought. I went on the gluten-free diet because of nursing my celiac daughter. I feel so much better now, though. I never had any GI issues, except excess indigestion. I had an ulcer once, but attributed that to stress. The joint pain that I've had for 29 years is now gone! I researched it and, sure enough, that can be a symptom. It's amazing how this disease works. I just know that I feel better than ever!

[lbsteenwyk]

Nicole:

Your son is likely to have celiac disease. I see 3 possible options for you:

1) ask your doctor for a complete Celiac Panel. That would include a TTG (anti-tissue transglutaminase) and an EMA (anti-endomysial antibody). He also needs his serum IgA measured - this tests for IgA deficiency and could account for his negative IgA and positive IgG results. The TTG and EMA are more specific and sensitive for celiac disease but there are often false negatives in children under 2. Since you son is just barely over 2, the results could be inaccurate. If He has both positive TTG and EMA (or only one is positive) I wouldn't bother with the biopsy and progress straight to the gluten-free diet.

2) Have a biopsy based on the blood work that has already been done. Make sure you get a physician who knows how to read the results and will take multiple biopsies (6-8 are recommended for an accurate test).

3) Try a gluten free diet for 2-4 weeks. Children usually have a dramatic response to the diet, so you should see major results in this time frame. With this approach, if you get positive results you may not be willing to return to a diet with gluten in order to get an official diagnosis, so you should think carefully beforehand whether an official diagnosis matters to you and your family.

Good luck in finding an answer for your son's health issues.

[tarnalberry]

I want to reiterate what Laurie said - IgA deficiency is not uncommon among celiacs, so the IgA antigliandin score tells you *nothing* without having a total IgA score to determine what is 'normal' IgA levels for your son. the total IgA test can be done gluten-free or not. (the other two tests, EMA and tTg, are also important, however, and he needs to be on gluten for those tests.)

[londonlass]

hi sorry to jump on the bandwagon i have been reading your posts and wondered if i can get so info from you all. My 21 month old has multipule food intolerences (milk, egg, citric acid) and of corse the dreaded gluten. She has been gluten free since sept 05 and was almost instantly a different child. we still have issues with her diet but she has normal poop now most of the time. Before going gluten free 8 watery nappies a day, changing the bed and bathing her in the night was normal for us. Things seem a lot different here than in the US. We didnt get to see an allergist untill feb 06 even though we had been waiting since june05. I put her on the diet against medical advise as they wanted me to wait untill i saw allergist, but i couldnt watch her suffer anymore. She was given celiac disease test by pead (we see our peads at hospital here) at 1st app end of nov05. We were told 2 weeks before xmas that there was not enough blood to test but that gp had decided that she was coeliac (we spell it different too.)

Saw allergist 3rd feb 06 he says her stomach should not still be swollen and that he wants to test again and if it is positive he wants to do biopsy soon. I am worried about biopsy and am reading that blood test will not show as she is not eating gluten and she is under 2. Is this true? If so why do they keep taking blood, Why not leave it till she is 2? She was exposed to gluten(i think) 2 weeks ago. going on syptoms as she doesnt react to anything else so badly. Big D still not gone although getting better. If this is the case would that count as enough gluten to show on a test? The plan is to do test next week. I am unsure but dont know what else to do. Medics are all very vauge and allergist says it can still show on a test when i questioned him.

[Nic]

hi sorry to jump on the bandwagon i have been reading your posts and wondered if i can get so info from you all. My 21 month old has multipule food intolerences (milk, egg, citric acid) and of corse the dreaded gluten. She has been gluten free since sept 05 and was almost instantly a different child. we still have issues with her diet but she has normal poop now most of the time. Before going gluten free 8 watery nappies a day, changing the bed and bathing her in the night was normal for us. Things seem a lot different here than in the US. We didnt get to see an allergist untill feb 06 even though we had been waiting since june05. I put her on the diet against medical advise as they wanted me to wait untill i saw allergist, but i couldnt watch her suffer anymore. She was given celiac disease test by pead (we see our peads at hospital here) at 1st app end of nov05. We were told 2 weeks before xmas that there was not enough blood to test but that gp had decided that she was coeliac (we spell it different too.)

Saw allergist 3rd feb 06 he says her stomach should not still be swollen and that he wants to test again and if it is positive he wants to do biopsy soon. I am worried about biopsy and am reading that blood test will not show as she is not eating gluten and she is under 2. Is this true? If so why do they keep taking blood, Why not leave it till she is 2? She was exposed to gluten(i think) 2 weeks ago. going on syptoms as she doesnt react to anything else so badly. Big D still not gone although getting better. If this is the case would that count as enough gluten to show on a test? The plan is to do test next week. I am unsure but dont know what else to do. Medics are all very vauge and allergist says it can still show on a test when i questioned him.

Hi, the reason citric acid may be a problem is because citric acid is not necessarily made from citris (I made this mistake too). When I saw a nutritionist, she explained that citric acid is one of those questionable ingredients and should be checked into before eating because it could be derived from wheat. If the ingredients don't specify what it is derived from then just call the company that makes it.

I have been under the impression that a biopsy will not be accurate if the child is already gluten free because the intestine begins to heal. But, on that same note, my son was gluten free for 3 months and his blood still showed him to be gluten intolerant because he had not been gluten free long enough. Does your child have a ped. gastrointerologist? They seem to by the most knowedgable with Celiac. Let me know if I can be more help.

Nicole