Infants, Children And Standard Celiac Tests

[EmmaQ]

I understand that the blood tests are not all that accurate and that accuracy is less the younger a child is. I would gather to guess it has to do with the immune system and it's maturity level.

My first child at age 3 tested fine, he's IgA deficient, so the there was only 1 blood test that came back positive.

We are going to likely tests our youngest, but I got to wondering when would be the optimal time given the tests are not as likely to be accurate at a younger age.

Any thoughts, experiences? Baby is 6 months now and not yet starting solids.

[JennyC]

I don't think that blood tests are reliable until after 24 months of age. My son was 3.5 years old when he was tested and he had very high tTG levels, but he was also a carb junkie. If you think that your infant is reacting, you could try contacting enterolab or go gluten free until the child is old enough to be tested and then do the gluten challenge. I don't know the age guidelines for enterolab, but they are very helpfull if you call them.

Best of luck.

[EmmaQ]

Entrolab is out b/c IgA deficiency runs in the family and the stool tests like the blood tests are based of those IgA antibodies. I could be wasting $$$ if the baby is also IgA def.

Wouldn't it be nice to know sooner rather than later? I guess it isn't a reality yet.

[chrissy]

our ped gi says that the tests aren't as reliable until after 3. i have read somewhere that young children don't always produce the antibodies.

one of my kids is IgA deficient, but we know that he has the DQ2 gene. he will be tested yearly with an IgG test----we have already tested his total IgG levels to make sure that they are ok. we did his original IgG testing and gene testing through promethius lab.

[janelyb]

We had horrible doctors until just recently and even then I was the one who demanded testing. My son was tested this January (he was 3.5 yrs old but had been showing symtoms for 3 yrs prior to testing). His celiac panel came back normal except for his IgG. IgG was a very high positive which was done through QUEST Lab. At that time the doctor said it was a false +, I had them run it again and the number were identical. He also had a lower level of iron (but not enough to be consider anemic I guess) and his thyriod was a tad high (doctor consulted with an endo and he wasn't concerned).

Just recently this same GI is saying well maybe his high IgG is an early indicator of celiac, but we don't know for sure unless biopsy.

I did allergy testing, all negative...skin testing all negative.....then I did the genetic testing through enterolab and well my son doesn't have one of the main celiac genes he does have a double copy of DQ3 which I guess makes him at a higher risk to gluten.

We never did a biopsy, eventhough it was offered. He is responding quite nicely to the gluten-free and casein free diets. I think that is enough proof for me. But a part of me wishes we did the biopsy, but I don't want to make my kid sick just for a test that may or may not tell us anything.

[EmmaQ]

There are several reasons I want the "offical" dx. 1) outs him for military service no question, 2) makes dealing with schools easier b/c you have "legal" backing to get such things as an MIP/ IEP or 501, etc Not just grade school, but college as well (it outs the requirement of Freshman must be on campus and 3) Dr states compliance w diet in teens is better when a biospy can be shown and explained to them, some kids go through rebellion and apparently symptoms subside in the adolecent years, some do not; but he states they will be diabetic by age 30 (I don't think all will, but the potential for life long illness and disease not cured by diet changes is certainly there).

I don't think telling a teen their great-grandmother died of colon cancer and their papa had part of his colon removed from colon cancer is going to deter most teens from eating gluten when their friends are out having pizza or having an unsupervised party has beer.

[Nic]

My son tested positive through blood and biopsy at 4 years of age. My younger son was going through some problems at around the same age and the blood kept coming back negative. So I bought the Enterolab gene test kit and he does not carry the Celiac Gene.

Nicole

[EBsMom]

There are several reasons I want the "offical" dx.

I'm struggling with this right now. We never suspected that my dd (9) had celiac or gluten sensitivity - she had gastric reflux, and some other minor GI issues. I tried the gluten-free diet on the recommendation of a friend, whose wife and dd have celiac disease. He'd read about the growing connection between reflux and gluten. We were on the verge of putting her on reflux medications, so I thought "What do we have to lose?' and tried it. She got markedly better within the first week, and *really* improved when we took casein out of her diet, too. I wanted more "proof" than the dietary response, so I ordered the Enterolab fecal and gene tests, and kept her on the gluten-free/cf diet. Now I have positive Enterolab results - elevated gliadan and casein antibodies, also elevated tTg....no celiac gene, though - double "sensitivity" genes (DQ 7, 6.)

My f-i-l and my dh NOW want to go forward and pursue an "official" diagnosis....and I am so torn about it. She was sick....getting sicker every week....and now she's so much better - no reflux symptoms, other GI symptoms gone, increasing energy level. I am so hesitant to make her sick again, just to pursue an "official" diagnosis, when the end result will likely bring us right back to where we are now - a gluten-free/cf diet. Sigh! If I had it to do over again, I might have kept her on gluten and pursued an official diagnosis right off the bat....but I had no idea....

Good luck to you!

Rho

[Nic]

I'm struggling with this right now. We never suspected that my dd (9) had celiac or gluten sensitivity - she had gastric reflux, and some other minor GI issues. I tried the gluten-free diet on the recommendation of a friend, whose wife and dd have celiac disease. He'd read about the growing connection between reflux and gluten. We were on the verge of putting her on reflux medications, so I thought "What do we have to lose?' and tried it. She got markedly better within the first week, and *really* improved when we took casein out of her diet, too. I wanted more "proof" than the dietary response, so I ordered the Enterolab fecal and gene tests, and kept her on the gluten-free/cf diet. Now I have positive Enterolab results - elevated gliadan and casein antibodies, also elevated tTg....no celiac gene, though - double "sensitivity" genes (DQ 7, 6.)

My f-i-l and my dh NOW want to go forward and pursue an "official" diagnosis....and I am so torn about it. She was sick....getting sicker every week....and now she's so much better - no reflux symptoms, other GI symptoms gone, increasing energy level. I am so hesitant to make her sick again, just to pursue an "official" diagnosis, when the end result will likely bring us right back to where we are now - a gluten-free/cf diet. Sigh! If I had it to do over again, I might have kept her on gluten and pursued an official diagnosis right off the bat....but I had no idea....

Good luck to you!

Rho

I'm sure everyone here can understand how you feel. I couldn't even imagine having to make my son as sick as he was before going gluten-free/CF. Why does your husband want the positive diagnosis? If it is for school reasons is there any way your pediatrician would just put on the medical forms for school that your child needs a gluten free diet? I know a parent at my son's school that told them her daughter had a peanut allergy even though she had no medical diagnosis of such allergy and the school took it seriously.

Nicole

[EmmaQ]

There might be a way around this. I haven't tried it, but if I needed to I would. So far there have been no problems with school for one child who is not offically dx'd. The pediatrician we use has written "gluten free diet for possible Celiac Disease" on the school forms.

It is possible to transfer docs, fill out the medical history as Celiac, if they ask for records, say you'll get them soon. Eventually they forget. This works well with family practices, not necessarily pedis (pedis are the natzis of doctors IMO). This also only works until electronic medical records becomes the norm and it's coming.

I have read some discussions about not wanting an offical dx for medical insurance and life insurance reasons. Those only make sense when you look at the lack of compliance in the diet over all, even if you do not cheat, it is assumed you do.

I'm also reading there might be a new test in development requiring 3 days on gluten instead of 3 months. I wonder how soon that will be out on the market and used...

It's all promising for the future, but I guess now is not worth going through testings until my youngest is older. Sad, truly sad b/c I won't feed gluten of any type and then we'll expect the child to eat it? In what? B/c if you don't develop a taste for it, you likely won't eat it. Hide vital wheat gluten in foods that didn't make them sick, then they won't ever eat them again??? It just makes more sense to do this younger. It makes more sense to develop a test that does not require damage to be present for a dx.

[Darn210]

Gluten Challenge!!! Do you or don't you . . . Is there something to gain?

Based on talking with three different doctors (2 Pediatric GI's and my daughter's Pediatrician), there is now all kinds of contraversy about my daughter's test results . . . I think we are going to do the challenge. We won't be able to do it for another couple of months but this is the current plan. We won't actually let her have any of her old favorites (snack crackers and fluffy wheat bread). She had absolutely no problems switching to Tinkyada so I don't think it will be an issue to switch to a whole wheat blend pasta (which is what we used to eat). She also did not have any issues with the cereal or waffles - so we will go back to some of the original versions. I may let her have some of the whole wheat/whole grain bread that she turned her nose up at before going gluten-free. I will also state that we have no family history of celiac (just acid reflux) and she did not have severe symptoms - she would regurgitate (about a mouthful) a couple of times a day. It never slowed her down or caused her to miss school or activities - except, of course, for the doctor's appointments.

Also, one of my GI's said that you should do the Gluten Challange for two months. However, if at ANYTIME during the two months, symptoms start coming back, then stop - you have a positive diagnosis (no additional blood test/no scoping required). Keep in mind, we started with a positive blood test and inconclusive biopsy. Since you've got some lab results that already show issues with gluten, perhaps one of your doctors (GI or Pediatrician) may be able to give you an option for an official diagnosis that may require a "known/intentional" glutening but not weeks of torture. They may not even require that - have you asked? If you had any food diaries, that may be good documentation, also, number of trips to see the doctor and the doctor's growth charts may be good documentation. I would think that they may not dx with Celiac but may at least be official with "gluten intolerance".

EBsMom - Keep in mind that you may be able to add milk back into her diet after her tummy has had a chance to heal.