When To Test Children/babies For Celiac?

[maddycat]

I was diagnosed with Celiac Disease this past summer. I have an 8mo old son. Right now he's eating baby food veggies and fruits and only rice cereal. Should I be feeding him wheat/oats, etc? He's about that age where he will start eating finger foods soon and I'm wondering if I should/should not be giving him Cheerio's, teething biscuits and the like? Do I feed him "normal" foods and wait for any bad reaction then get him tested for Celiac, or do I feed him gluten free? I have told my daycare not to feed him any glulten foods until I find out if it should be avoided.

When is the best time to get a baby/child tested initially? I have heard until 3-5 years old, testing is not too accurate, is that true?

Thanks,

Marcia

[Lisa]

My children are long grown, so I have no recent baby experiences.

I would feed him age appropriate food as normal. If you find him reacting to gluten, then I would recommend to eliminate the gluten from his diet.

Maybe some of the others moms will check in.

This forum is often slow on the weekends but Mondays are fairly active.

Lisa

[lovegrov]

The general consensus is that you definitely go ahead and feed your child as you would if you didn't have celiac. Tests definitely are not reliable before two years and maybe longer, I'm not sure. However, you also definitely should do the test, even if there are no symptoms.

richard

[KayJay]

We just went through this. My baby's GI doctor told me NOT to feed her gluten until she is one. The reason being all babies have a leaky gut and at a year it is sealed up more like an adult. So they have less of a chance or at least you are prolonging any symptoms. I started my daughter on Wheat at 13 months or so. She is 15 months now and is doing great so far. (knock on wood)

Before we started wheat Wagon wheels were a great life saver! Also, the dora the explorer stars are great for little ones to munch on. It is hard but he is almost a year

[ptkds]

I am not too sure about the age because I also have an 8 month old, and I havn't really started her on solids yet because she has other allergies as well. But I did want to let you know that when my toddler was 15 months old, we tested her and she was positive. So it isn't unheard of to have a positive test at this young of an age. My toddler was eating wheat products everyday, and her symptoms weren't too bad. But she still tested positive, and I have since tested positive.

I will probably give my baby a few gluten-filled things, but she will be pretty much gluten-free because our whole house is. I like the idea of waiting till 1, though. I may do that.

ptkds

[Lisa]

whew......glad you guys checked in.....didn't want to send out bad infor.

[helen albanese]

I am not too sure about the age because I also have an 8 month old, and I havn't really started her on solids yet because she has other allergies as well. But I did want to let you know that when my toddler was 15 months old, we tested her and she was positive. So it isn't unheard of to have a positive test at this young of an age. My toddler was eating wheat products everyday, and her symptoms weren't too bad. But she still tested positive, and I have since tested positive.

I will probably give my baby a few gluten-filled things, but she will be pretty much gluten-free because our whole house is. I like the idea of waiting till 1, though. I may do that.

ptkds

[helen albanese]

I have been in the gluten free environment for 25 yrs since the birth of my first daughter and lost a world that I felt everyone could live in except my daughter. Since that day, I have been diagnosed, my second daugher, their father, grandparents on both sides, friends have sprouted the condition and now more people live in our world. I am of the ilk to encourage pre conception counseling, seeing a geneticist pre pregnancy and talk about autosomal genetic transmission. We are fortunate enough to live in an environment that provides alternative venues and is receptive to testing. Receptivity to celiac issues and tolerance to the domino of symptoms is encouraging compared to when my daughter was excluded from sleepovers and play dates, parents were afraid to have her over so avoided her and her issues. While in Europe this past summer, I was amazed at the availability of products and knowledge that everyone seemed to have about gluten (I visited 4 countries). My daughters and I felt so normal there. America is catching up. Testing is only as good as the provider and there in lies the problem, get the right doctor-we are now at Cornell in NYC at the pediatric gastro center.

Helen

[hannahsue01]

It sounds like there are some different views out there. I guess I would be asking your doctor (not that they always know much). My doctor is a celiac himself and so are two of his children. He told us when myself and my oldest daughter were diagnosed for the whole house to be gluten free. It is to hard to compleatly prevent cross contamanation. Our 13month old (10 months corrected age) doesn't eat any gluen. We have been told by more than one doctor that it will not hurt her not to have it but could hurt her to have it so I donno. Although they are considering that she may already have it because while on breast milk (while I was still eating gluten) she had severe reflux and projectile vomit but stopped as soon as all she had was formula. Our daughter eats gluten-free cereal, wagon wheels, fruit, freeze dried fruit by gerber, shredded cheese, cottage cheese, yougurt, gluten-free baby cookies by midel, we make her strawberry banana smothies that she loves, amung other things. We make most our own baby food and pretty much grind up whatever we have for dinner for her for dinner and the next day. Our baby is small and we have to add oil and make sure she gets meat everyday. I donno what to tell you for sure as there are different views on when to introduce gluten if at all. Good luck.

[Guest cassidy]

I am pregnant and have been researching this. Unfornately, there is no concensus on what is best. I talked to a researcher from the celiac institute and they are currently doing a study with babies that have celiac in the family. Half the kids get gluten at 6 months, the other half don't have any gluten until they are 1 year. They don't know the results so they couldn't offer me any advice. I also asked if a diet that was light in gluten would make a difference and they said that it wouldn't however I have read other places that it might. It doesn't seem like anyone really knows.

As for people in general, it seems that half say to introduce gluten as you would normal foods and the other half say wait as long as possible. I don't know what I'm going to do yet but I'm leaning towards delaying the introduction and keeping the baby on a "gluten light" diet if for no other reason than I don't want to be constantly touching the stuff and having cheerios all over my house.

The researcher did say to monitor the baby and obviously investigate the diet first if you see any signs of a problem.

[Fiddle-Faddle]

I was told to avoid all potential allergens (wheat, citrus, dairy, nuts, eggs, strawberries, etc) until one year and shellfish for two years. This was before I had any known problem with gluten, too, and I have no other food issues. I don't see why introducing wheat at 6 months would be beneficial in ANY way.

[ArtGirl]

I'm an old woman now and my son's baby days are long since past. When I was a young monther I didn't know very much about food allergies, and my son's ped. didn't either. It wasn't until he was 8 and was having serious asthma problems that anyone thought to check on allergies.

IF I had been wiser then I would have not introduced ANY foods that could potentially cause him to develop allergies. I wouldn't have put him on cereals at 3 months, either.

Marcia - with your having been recently diagnosed with celiac, there is at least a small chance that your child can develop it because he will have interited at least one celiac gene from you. I would think that the longer you can delay his being introduced to gluten, the better chance he will not develop it. Another consideration is that YOU don't need to be exposed to possible gluten contamination. If I were in your shoes (knowing what I know now) I wouldn't have any gluten in the house and wouldn't feed it to my children. (Just my opinion, for what it's worth)

[MomandDadtoOGS]

We were told to give our child all foods that "normal" kids her age were eating even though my husband was diagnosed with Celiac about 6 months before my pregnancy. We are a gluten-free household now. We plan on having more children and will have them tested as well so that we know if they truly have celiac as well but think we will have a gluten-free household even at that time. We will consult with our ped. GI to see exactly when to introduce glutens to our future children b/c they have to have some exposure to get a positive test.

[Juliet]

The latest studies suggested that you're supposed to introduce gluten to celiac gene positive children (not necessarily celiacs - they just have the gene) between 4-6 months and breastfeed the whole time - not before and not after. (quick link to one of the many articles particularly on gluten introduction: Open Original Shared Link - quick link to breastfeeding article: Open Original Shared Link This seems to reduce the risk of actually getting celiac disease, but has nothing to do with food allergies. It was from this article I was able to get the HMO to approve the gene test; however, it took so long that she's now 13 months old before we're actually getting the test done (we originally requested it when she was 6 1/2 months old).

[MomandDadtoOGS]

My husband actually was just telling me that same info about the not before 4 months and not after 6 months study.

[maddycat]

Thank you all for your replies!!

I have heard about the study for feeding gluten between 4-6 months, however we missed that window. I was newly diagnosed at that time and was still focusing on my health and recovery. We didn't introduce any foods to our son until he was 6 months old. I am breastfeeding, so we have that on our side! For now I think we will wait until he is a year before giving him any gluten containing foods. We have our 9mo checkup next week so I will discuss with our pediatrician and hopefully get a referal to a pediac GI so we can get into the genetic testing for celiac disease.

Question for those of you who have had your kids tested for the "celiac gene"- can you explain more about this- I've read a bit but don't really understand. Do they either have it or not- if they have the gene then they might get celiac but if they don't do they not have the possibility of getting it? My husband and I have not had gene testing for celiac- should we? If dh doesn't have it, does that mean that our children can't get it? As far as I know dh does not have celiac disease.

Thanks!!

[Guest Villanfam]

My husband and I have been thinking about going for baby #4, and I can say without a doubt that "NO GLUTEN AT ANY TIME WILL EVER PASS MY BABY'S LIPS, EVER!" All three of my kids have it, with mostly neurological symptoms (that have not improved, and new ones still popping up), and I regret that I did not know sooner that I had celiac disease. Nobody needs gluten to survive, you can be just as healthy if not healthier without it. I will not risk causing damage to my baby's intestines, brain, or any other vital organ. My children have already suffered at my stupidity/ignorance and may not fully recover from the effects that gluten has had on their small bodies.

My Beautiful Son is 8yrs old and has had Developmental Delays (Auditory Processing Delays, Autism-Aspergers Syndrome, ADHD) seizures, has had to work with an occupational therapist just so he could hold an pencil properly and use scissors (still can't tie his shoes), achy legs, headaches, night sweats, and is still unable to read.

My Wonderful Daughter is 5yrs old, smart as a whip, but has extreme emotional issues (depression, possible mood disorder) and is extremely defiant, beyond what is normal for any 5yr old.

My Baby Girl will be 3yrs on Sat. and looks like an ethiopian baby. She weighs 23lbs!!! and was taken to the E.R on Christmas Eve for what the Doctors think might have been a seizure! She has been gluten free since 9/14/06

They have not been having any of their previous G.I. symptoms but the neurological ones are still there. I don't know if they will ever recover from them, all I can do is wait. I do know that I will never tempt fate with any other children I might have. It's just not worth it to me. That's just my 2 cents.

Courtney

[Guest Villanfam]

If your not familiar with the term "neurological celiac disease", check out the "Celiac Disease: Not just a GI problem" thread it is very eye opening. Most GI docs (or any type Dr. really) are only familiar with the intestinal effects of celiac disease. There, you can find links to medical journals and studies on the neurological effects of the disease.

Courtney

[Juliet]

There are generally two different types of the gene (HLA-DQ2 and HLA-DQ8), and you can get it from one or both of your parents. Here's a quick PDF link that briefly explains it from the University of Chicago: Open Original Shared Link. And if you have the gene, it does not mean you will for sure get the disease. Also, if you don't have either type of gene, you will probably not get celiac disease. Apparently there are a very small number of people with Celiac Disease who do not have the HLA-DQ2 or HLA-DQ8 genes, so it's not a foolproof test yet. Quote from another article (Open Original Shared Link):

The three markers DR3, B8 and DQ2 are all associated with Celiac Disease. The reason for this is that the genes which code for B8, DR3 (also termed DRw17) and DQ2 are in linkage disequilibrium. They are part of a gene segment that is usually maintained as a gene block. This fact has posed a problem in the work to identify which molecules are actually involved in the development of Celiac Disease and which alleles are just associated with celiac disease because the genes coding for these molecules are usually linked with the predisposing genes. In other words: Which of B8, DR3 or DQ2 are actually involved in the development of Celiac Disease and which are just marker molecules?

Those Celiacs who are not DR3 positive very often are DR5/DR7 (DR5 is coded for by genes on the one chromosome and DR7 is coded for by genes on the other chromosome). Individuals who are DR3, almost always also are DQ2 (because the genes coding for DR3 and DQ2 are in linkage disequilibrium - they are in a conserved gene block). The names of the genes in this gene block that jointly code for DQ2 are DQA1*0501 (which codes for the alpha chain) and DQB1*02 (which codes for the beta chain). The DQA1*0501 gene also exists in a gene block that contains the gene coding for DR5, and the DQB1*02 gene exists in a gene block that contains the gene coding for DR7. Individuals who are DR5/DR7 may thus also possess the DQA1*0501 and DQB1*02 genes. In contrast to individuals who are DR3-DQ2 the DQ genes in DR5/DR7 individuals which code for DQ2 are located on two different chromosomes. This explains why DR5/DR7 individuals also have a predisposition to develop Celiac Disease and strongly indicates that it is DQ2 coded for by the DQA1*0501 and DQB1*02 genes that actually are involved in the development of Celiac Disease. About 95% of the Celiac population carry these particular genes.

In addition, another 4-5% of the Celiac population have genes that code for DR4 and DQ8 molecules (the genes coding for DR4 and DQ8 are maintained in block of genes). Probably it is the DQ8 molecule that mediates the disease predisposition in this subgroup of patients. Some very few Celiacs are neither DQ2 nor DQ8 implying that HLA typing is not a perfect predictor of risk for Celiac Disease.

[zachsmom]

There are generally two different types of the gene (HLA-DQ2 and HLA-DQ8), and you can get it from one or both of your parents. Here's a quick PDF link that briefly explains it from the University of Chicago: Open Original Shared Link. And if you have the gene, it does not mean you will for sure get the disease. Also, if you don't have either type of gene, you will probably not get celiac disease. Apparently there are a very small number of people with Celiac Disease who do not have the HLA-DQ2 or HLA-DQ8 genes, so it's not a foolproof test yet. Quote from another article (Open Original Shared Link):

The three markers DR3, B8 and DQ2 are all associated with Celiac Disease. The reason for this is that the genes which code for B8, DR3 (also termed DRw17) and DQ2 are in linkage disequilibrium. They are part of a gene segment that is usually maintained as a gene block. This fact has posed a problem in the work to identify which molecules are actually involved in the development of Celiac Disease and which alleles are just associated with celiac disease because the genes coding for these molecules are usually linked with the predisposing genes. In other words: Which of B8, DR3 or DQ2 are actually involved in the development of Celiac Disease and which are just marker molecules?

Those Celiacs who are not DR3 positive very often are DR5/DR7 (DR5 is coded for by genes on the one chromosome and DR7 is coded for by genes on the other chromosome). Individuals who are DR3, almost always also are DQ2 (because the genes coding for DR3 and DQ2 are in linkage disequilibrium - they are in a conserved gene block). The names of the genes in this gene block that jointly code for DQ2 are DQA1*0501 (which codes for the alpha chain) and DQB1*02 (which codes for the beta chain). The DQA1*0501 gene also exists in a gene block that contains the gene coding for DR5, and the DQB1*02 gene exists in a gene block that contains the gene coding for DR7. Individuals who are DR5/DR7 may thus also possess the DQA1*0501 and DQB1*02 genes. In contrast to individuals who are DR3-DQ2 the DQ genes in DR5/DR7 individuals which code for DQ2 are located on two different chromosomes. This explains why DR5/DR7 individuals also have a predisposition to develop Celiac Disease and strongly indicates that it is DQ2 coded for by the DQA1*0501 and DQB1*02 genes that actually are involved in the development of Celiac Disease. About 95% of the Celiac population carry these particular genes.

In addition, another 4-5% of the Celiac population have genes that code for DR4 and DQ8 molecules (the genes coding for DR4 and DQ8 are maintained in block of genes). Probably it is the DQ8 molecule that mediates the disease predisposition in this subgroup of patients. Some very few Celiacs are neither DQ2 nor DQ8 implying that HLA typing is not a perfect predictor of risk for Celiac Disease.

OH MY GOD.... you have been studying up on this ..... Can I borrow your notes the next time I get... just feed the baby some wheat.... come on a little cookie cannot hurt you. thanks

[suz101]

i too am a little confused on when to introduce gluten to my 4 month old son who has the gene. my 2 year old has celiac. we had the genetic test done at 3 months.

our pediatric GI said to introduce small amounts between 4-6 months?? but i wonder if i should wait much longer?

but the doc says to introduce it soon and watch for signs and symptoms???

he also saif gluten wasnt passed thru breastmilk but after reading several posts i am starting not to believe that. i am soley breastfeeding and will breastfeed until he is one years old. should i be eating gluten free now too!!??

i wish their was more info out there- there is too much controversary...

any advice anyone???

[suz101]

i too am a little confused on when to introduce gluten to my 4 month old son who has the gene. my 2 year old has celiac. we had the genetic test done at 3 months.

our pediatric GI said to introduce small amounts between 4-6 months?? but i wonder if i should wait much longer?

but the doc says to introduce it soon and watch for signs and symptoms???

he also saif gluten wasnt passed thru breastmilk but after reading several posts i am starting not to believe that. i am soley breastfeeding and will breastfeed until he is one years old. should i be eating gluten free now too!!??

i wish their was more info out there- there is too much controversary...

any advice anyone???

[Fiddle-Faddle]

It certainly couldn't hurt to be gluten-free yourself, though I'm not sure it's absolutely necessary if your baby isn't showing any possible reactions to the gluten in your breastmilk.

[suz101]

It certainly couldn't hurt to be gluten-free yourself, though I'm not sure it's absolutely necessary if your baby isn't showing any possible reactions to the gluten in your breastmilk.

However I breastfed my other son- (who is now 2 and has celiac) and ate plenty of gluten. I wonder if I harmed him by not being gluten free while breastfeeding him?

[stef-the-kicking-cuty]

I don't know for sure. This is just a thought. And because I'm pregnant myself, I thought about this a lot the last few weeks. When we breastfeed our kids, they are supposed to get all the vitamins and nutrients from us, too, right? Well, gluten is a protein and if we wouldn't consume protein in one form or another (can be animal protein, too) we could not survive. So now I thought, when the babies get thier proteins through the breast milk, they might "suffer" from the gluten a mother eats??? I might be wrong, I don't know, just my two cents

Hugs, Stef