New With Questions About A Baby With Possible Celiac Disease

[suziq0805]

Hey everyone! I'm new here a have a number of questions, so I hope you don't mind! But first here's a big of background. I have a 9.5 month old son that may have celiac disease. 2-3 hours after eating grain products he throws up. This has happened after oatmeal, Gerber puffs, and baby food with wheat flour in it. He also got sick after eating Gerber baby rice cereal- and when I called the company they said there shouldn't be gluten or cross contamination in that. So not sure if he has celiac or what, but we're on a grain free diet until we can figure it out since I hate seeing him so sick. I just made gluten-free cupcakes and he had a few tiny pieces of that and he didn't throw up! He is breast feed some still and I have not gone on a gluten free diet because I keep getting conflicting info on that. We have an appointment with a pediatric GI doctor next month. Our family doctor did the bloodwork for celiac disease and it came back negative, but since he wasn't eating any solid food that would have gluten I don't think that was accurate. So here are my questions:

1. Is vomitting a symptom of celiac in infants? I see vomitting on some websites but not others. Vomitting is not normal for him, so when it happens after eating foods with grains we wonder what's up.

2. How accurate is testing for kids this young?

3. Is there anything I need to look for in formula or is this usually ok if he would have celiac?

4. Since I eat gluten and he breastfeeds, should the blood tests be accurate even though he was not eating anything other than breastmilk that would have had gluten in it?

5. If he does have celiac, how likely is it that his dad or I have it also? In looking at the symptoms I see some that I have, but don't know how much is normal and when it's celiac. I have stomach cramps, gas and muscle/joint issues but really haven't noticed they're worse after anything I eat.

6. I would love to find a baby cereal he can have as well as gluten free versions of Gerber puffs to try and see what happens. Any suggestions?

[Tawanna]

I have a son who I believe is Celiac (as I do myself). In my opinion, the disease is difficult for doctor's to diagnose. One doctor even told me that as long as being on the diet made me and my son feel better, than to do it no matter what some of the tests showed. My blood test was positive; my colonoscopy was not.

My son had bouts of vomiting as an infant; very forceful at times, all night long. I would think he had the flu, but he had no fever. Doctors thought he was teething. Looking back, I strongly believe he was reacting to gluten.

The vomiting/diarrhea/stomach aches can occur longer than immediately after eating, so the vomiting after the rice cereal could've still been caused by an earlier meal if it was within 2-3 days. As well, if the rice cereal doesn't state gluten-free, it could be manufactured in a facility that processes wheat products and get cross-contaminated.

I don't know of gluten-free products that an infant can eat, but my feeling is that if your child is experiencing these issues, a strict gluten-free diet will need to be followed to keep he/she healthy. It's not an easy life-style, but it's one worth doing and it does get easier with time.

I hope others can help you out with infant food options.

[shopgirl]

You mean endoscopy, right? Celiac can't be diagnosed through colonoscopy. If a doctor tried, that may be where the negative comes from.

But good for the doctor encouraging you and your son to stay gluten-free based on dietary results. Not all doctors are so enlightened.

For the original poster, testing for children can be wildly inaccurate because they're sometimes too young to accrue much damage.

[kareng]

You can get cream of buckwheat to make for babies. It's supposed to be easy to digest. My kids ate Chex - rice & corn are gluten-free. They fall apart easily in their mouths.

[divamomma]

I am fairly new here but here is what I know:

Blood tests are often false negative, and can be inaccurate in young children.

I would keep him (and You) on gluten until you see the GI. Going gluten free will cause a scope/biopsy to be negative.

My 4 year old daughter has celiac disease, my 6 year old daughter, my husband and myself are all negative.

[mommida]

Younger children often vomit as a gluten reaction.

Test results are not as accurate for younger children.

There is gluten in breastmilk if the mother is consuming gluten.

My kids are too odd to help you out with formula and baby food suggestions.

Start working with a ped. gastro. because the symptoms you are describing have a "usual" suspect list that is 10 to 15 different things that some blood tests and an endoscopy with biopsy can help diagnose. Seriously. Children that can talk will list "tummy ache" and the actual problem may be elsewhere.

I wish you both a speedy dx. and recovery!

My daughter did have juandice at birth and had definate problems starting with rice cereal mixed in B milk at 7 months. Definately a lot of vomitting and then really explosive "D" she was diagnosed at about 6 month "probable" Celiac as she was too ill to have the endoscopy w/ biopsy. positive genetic test for DQ2 and DQ8.

Later diagnosed with Eosinophilic Esophagitus when she was 6. (Symptoms are the same as Celiac, but more vomitting IMO)

[SGWhiskers]

Hey everyone! I'm new here a have a number of questions, so I hope you don't mind! But first here's a big of background. I have a 9.5 month old son that may have celiac disease. 2-3 hours after eating grain products he throws up. This has happened after oatmeal, Gerber puffs, and baby food with wheat flour in it. He also got sick after eating Gerber baby rice cereal- and when I called the company they said there shouldn't be gluten or cross contamination in that. So not sure if he has celiac or what, but we're on a grain free diet until we can figure it out since I hate seeing him so sick. I just made gluten-free cupcakes and he had a few tiny pieces of that and he didn't throw up! He is breast feed some still and I have not gone on a gluten free diet because I keep getting conflicting info on that. We have an appointment with a pediatric GI doctor next month. Our family doctor did the bloodwork for celiac disease and it came back negative, but since he wasn't eating any solid food that would have gluten I don't think that was accurate. So here are my questions:

1. Is vomitting a symptom of celiac in infants? I see vomitting on some websites but not others. Vomitting is not normal for him, so when it happens after eating foods with grains we wonder what's up.

Vomiting is a symptom for some celiac, but not all.

2. How accurate is testing for kids this young?

A positive result on blood or biopsy is accurate. A negative result means nothing at this age. He could still have celiac. Genetic testing would show if he is at risk for celiac, but they recently discovered at least another dozen genes that are celiac related that are not included in current genetic tests. Either way, genetic testing would not be able to diagnose a yes/no for celiac.

3. Is there anything I need to look for in formula or is this usually ok if he would have celiac?

Good question. I really don't know the answer, but I would look for anything that said starch, tocepherol, or vitamin E. If you find those items, call the manufacturer. They can all be from wheat or from another safe source. Ask for the "gluten status" of the product.

4. Since I eat gluten and he breastfeeds, should the blood tests be accurate even though he was not eating anything other than breastmilk that would have had gluten in it?

If you eat gluten, your breast milk will have gluten. If you start him on a gluten free diet, you also need to go strictly gluten free. No need to switch to formula if you go gluten free. Again, it is really difficult to get a positive blood panel or biopsy on one this young. They test false negative frequently up to grade school age.

5. If he does have celiac, how likely is it that his dad or I have it also? In looking at the symptoms I see some that I have, but don't know how much is normal and when it's celiac. I have stomach cramps, gas and muscle/joint issues but really haven't noticed they're worse after anything I eat.

If your son has celiac, there is a 1:22 chance you have it. If he is positive, the recommendation is for all first degree relatives (parents, siblings, children) to be tested. Since you are showing symptoms, you may want to consider having your blood tested. It could help you immensely and add another clue to why your little one is throwing up. Gluten can affect you for several days/weeks and can have a delayed reaction. If it were as easy as noticing that spagetti made us sick, the majority of us wouldn't have spent years feeling ill and searching for a diagnosis.

6. I would love to find a baby cereal he can have as well as gluten free versions of Gerber puffs to try and see what happens. Any suggestions?

Are the yogurt puffs gluten free?

If you decide to go through with the biopsy, make sure to eat lots of gluten in your diet and if he is eating solids, include it in his baby food and finger foods until the biopsy is over. Then go gluten free no matter what the results say and give it at least a 3-6 month trial. Remember once he starts crawling, the floors will have your husbands and dog's gluten crumbs on them and just a crumb does as much damage as a cookie.

The biggest reasons you want a diagnosis for a little one is so that:

a) The doctors don't think you are crazy. (Do you really care about that though?)

Once he starts school, you will need documentation that he is celiac to get reasonable accomadations in the classroom (wiping down tables, special craft items, soy dough instead of playdough, notice of pizza parties).

c) There are possible flexible spending account savings with a diagnosis in hand.

The reasons not to test a little one:

a) Mommies don't like putting their babies through medical procedures.

You are fairly likely at this age to wind up with a negative result even if you do the biopsy.

c) You can start a gluten free diet without doctor's permission.

d) a few doctors will give a diagnosis based on dietary response alone.

My thoughts on waiting to test:

He will have to eat at least 4 servings/day for 2-3 months before being retested if you want any chance at a valid test result. If you don't do it now, I wouldn't do this until around the time he starts school and maybe again in the preteen years.

If you decide he is gluten intolerant/celiac or if he tests positive on blood or biopsy at any time, know that he will never grow out of it. Doctors used to tell parents their kids might grow out of it. (By the way, whose baby book was that that said celiac? They need to get tested again and/or go back on a gluten-free diet. All their first degree relatives should probably be tested too).

Also, work with your doctor to look for other causes. Celiac is a definate possibility, but I wouldn't rule out other causes.

Good luck and I hope he is feeling healthy soon.

[ELSmommy]

In regards to the Gerber puffs, there are organic puffs from Happy Baby that are gluten free. I'm not sure what stores carry them but you could check online

[momtok&m]

I'm no expert but my LO (Mary) did go through the same thing at the same age.

1. Is vomitting a symptom of celiac in infants?

*Mary would throw up after eating anything-grains or anything! I think her gut was just such a mess she couldn't handle anything but breastmilk-and thank God for that!

2. How accurate is testing for kids this young?

*I spoke to a genetic counselor who suggested waiting on the testing until it's more advanced. I didn't want to do anything invasive, so we'll just wait. We did an elimination diet, working with her ped., and he did diagnose her with gluten intolerance based on that and her bloodwork (severe anemia). She's been gluten free since about 10 or 11 months of age and she is 2 now.

3. Is there anything I need to look for in formula or is this usually ok if he would have celiac?

*Don't know anything about it but if you're breastfeeding why not just stick with that?

4. Since I eat gluten and he breastfeeds, should the blood tests be accurate even though he was not eating anything other than breastmilk that would have had gluten in it?

*I was gluten-free for quite a while and didn't notice a difference either way. Someone explained it like this to me and it makes sense. Animals eat gluten and we eat animals (and dairy) without problems so why would our milk be any different? There have been tests that show gluten in breastmilk but Mary didn't have any issues with my milk.

6. I would love to find a baby cereal he can have as well as gluten free versions of Gerber puffs to try and see what happens. Any suggestions?

*We use(d) Gerber, Beech Nut and Earth's Best rice cereal without problem. Mary couldn't handle Chex because they're so jagged but she did eat a lot of Kix. I bought Hot Kid Mum Mum rice rusks. Wal Mart and Babies/Toys R Us carry them. They come in a couple varieties and both of my girls still like them.

I hope this helps and your little guys is feeling better

[raeskids]

Just a quick reply regarding breastfeeding. My 16 month old was just diagnosed with Celiac and the nutritionist, GI Doctor, and his pediatrician all told me to go on a gluten free diet since he still breastfeeds.

An interesting fact -- we had almost weaned Samuel, and then when his undiagnosed Celiac was flaring up (he ended up in Celiac Crisis) he began to breastfeed all the time. We all figure that it was the only nutrition that didn't hurt his belly. So right now they are strongly encouraging me to continue feeding him until his belly calms down.

So, for now, I am gluten free as well.

(and I feel better to....)

[suziq0805]

Thanks everyone for the replies. This is all just so confusing about what to do...mainly since we are waiting for our doctor appointment and not sure of what causes his reaction to wheat products. I'm still breastfeeding but not on a gluten free diet. I don't produce enough milk for him anymore so he gets more formula than breastmilk now. Any solids he gets are gluten-free. We've tried gluten-free cupcakes and pasta and he's handled that fine! If the doctor thinks celiac disease may be the cause of my son's issues with wheat products then I'm going to check into whether I could have celiac too. I see how I have some symptoms of it, but yet they could also be caused by other medical issues. So I haven't gone gluten-free in case I need to get tested. Now that my son is beginning to show more of an interest in table foods I am having to learn to read food labels....wow is that overwhelming! Hopefully I get the hang of this soon.

[strawberrygm]

With help on breastfeeding and increasing your milk supply, go to kellymom dot com. It is a great forum for moms a d breastfeeding. I would think that keeping baby on just breastmilk vs breastmilk and formula would help settle tummy.

Good luck, i know its so hard and frustrating. Especially with all the differing info and hard to dx little ones, it makes me feel helpless on their health at times.

[GreennGlutenFree]

I was diagnosed with celiac nearly 5 years ago now and my one year old immediately showed signs of celiac when we introduced wheat into his diet so we've had a lot of practice with keeping him gluten free. I'm the only person in my family who has been diagnosed with celiac disease (my son is undergoing "official" testing now). My mom thinks that its possible her father had celiac but he passed away ten years before I was born and he was never tested. While celiac can be genetic their is emerging research that is showing it can also be triggered environmentally. Also, unfortunately, there are no 100% sure fire symptoms of celiac disease (thats why its hard to diagnose), it manifests itself in many different ways other than GI problems. Example: A women in my celiac support group has biopsy proven celiac, she has NEVER had GI problems, however whenever she has gluten she gets sever migraines. Before her diagnosis she spent a lot of time in the hospital getting IV pain medication for them.

When I called Gerber about their rice cereal I was told that they make all of there baby cereals in the same facility and that they could not guarantee that the rice cereal was free from contamination. I made about half of my sons baby food at home and the rest I got from Beechnut which he never had a problem with (including the rice cereal). Beechnut actually has on their website which ones of their product are gluten free and which ones aren't. He is currently on to finger foods and before we had to get him back on gluten for testing Kixs, Chexs, and Mum-Mums were staple snacks as other posters have suggested.