Celiac In 11-Month Old?

[sashasmommy]

My daughter has had eating issues since she was born.  She would refuse her bottle and only ate about half the amount she was supposed to.  They thought she was allergic to dairy, so we put her on a hypo-allergenic formula.  I thought she might be allergic to corn, so I put her on corn-free formula.  We've been on meds for reflux, had all kinds of tests done.  At 10 months, they did a scope with biopsies and they're telling me she might have celiac disease because they found microscopic damage to her small intestine. 

 

Maybe she does have celiac disease, but I don't see how this could be a cause for her eating issues her whole life, since she just started eating gluten recently.  As far as I can tell, formula doesn't have gluten in it and she didn't start eating packaged baby food until she was 9 months old.  I breast-fed until 6 weeks, so she could have gotten some from me, but it was very little, I only produced an ounce or so per feeding, and I stopped at 6 weeks.

 

From 6 weeks until 5.5 months, she got nothing but formula, a little rice cereal at one point when they wanted me to thicken the formula for reflux, and then from 5.5 months to 9 months, she got formula plus homemade purees which were just fruits and vegetables mixed with formula.  I guess the rice cereal could have had some, but we only used it for a short time.

 

Does anyone have any insight into this?  Thoughts?  My follow up with the Ped GI is not until June 2.  Thanks...

 

[Georgia-guy]

I have no clue about the prevalence of an 11 month old baby being positive. But I do know that a family history can help determine the chances. What medical diagnosis do you and your husband (assuming here) have? What about your parents and his parents? From what I have read, any presence of autoimmune disorders increases likelihood. There is also a long list of Dx that can piggy-back celiac, even if someone doesn't present with clear celiac symptoms, so there is a chance others in the family may have celiac as well. It may be worthwhile mentioning this to your doctor and you and your husband getting tested as well.

[sashasmommy]

I have no clue about the prevalence of an 11 month old baby being positive. But I do know that a family history can help determine the chances. What medical diagnosis do you and your husband (assuming here) have? What about your parents and his parents? From what I have read, any presence of autoimmune disorders increases likelihood. There is also a long list of Dx that can piggy-back celiac, even if someone doesn't present with clear celiac symptoms, so there is a chance others in the family may have celiac as well. It may be worthwhile mentioning this to your doctor and you and your husband getting tested as well.

No one in my family or his family has celiac or any food allergies that we know of.  I was allergic to dairy when I was a baby, but I grew out of it.

[Georgia-guy]

Anything like diabetes, lupus, thyroid issues, infertility/fertility problems, miscarriages, etc? Unexplained nutrient deficiencies?

[momma8604]

Yes this is very possible, my son who is 2 in 10hrs has been gluten and dairy free since he was 8 months

[sashasmommy]

Anything like diabetes, lupus, thyroid issues, infertility/fertility problems, miscarriages, etc? Unexplained nutrient deficiencies?

My dad has diabetes.  I had an ectopic pregnancy before this one.  Other than that, I have no health problems, and no one in my immediate family has any major issues other than the normal ones associated with getting old.  My husband can't think of anything in his family either.  I do supposedly have silent reflux, as my dentist says it's affecting my teeth.  But I don't feel anything.  But my baby was tested for reflux with a pH probe, and they didn't find anything.

[nvsmom]

 

My daughter has had eating issues since she was born.  She would refuse her bottle and only ate about half the amount she was supposed to.  They thought she was allergic to dairy, so we put her on a hypo-allergenic formula.  I thought she might be allergic to corn, so I put her on corn-free formula.  We've been on meds for reflux, had all kinds of tests done.  At 10 months, they did a scope with biopsies and they're telling me she might have celiac disease because they found microscopic damage to her small intestine. 

 

Maybe she does have celiac disease, but I don't see how this could be a cause for her eating issues her whole life, since she just started eating gluten recently.  As far as I can tell, formula doesn't have gluten in it and she didn't start eating packaged baby food until she was 9 months old.  I breast-fed until 6 weeks, so she could have gotten some from me, but it was very little, I only produced an ounce or so per feeding, and I stopped at 6 weeks.

 

From 6 weeks until 5.5 months, she got nothing but formula, a little rice cereal at one point when they wanted me to thicken the formula for reflux, and then from 5.5 months to 9 months, she got formula plus homemade purees which were just fruits and vegetables mixed with formula.  I guess the rice cereal could have had some, but we only used it for a short time.

 

Does anyone have any insight into this?  Thoughts?  My follow up with the Ped GI is not until June 2.  Thanks...

 

 

Was she breastfed?  Gliadin is found in breast milk, and it is that gluten protein that celiacs react to. Scientists are not sure that it can set off a celiac reaction in infants, but if the child was born with active celiac disease, it makes sense to me.

Open Original Shared Link

 

Celiacs are often lactose intolerant because the intestinal villi which make the lactase (which digest the milk sugar, lactose) are too damaged to make lactase. In my experience, lactose intolerance can be quite painful and feels similar to a gluten reaction.... So you could have been correct in that milk was a problem for her.

 

Most formula does not have gluten in it, but some do. The same goes for the rice cereal if it was not just rice, or if the cereal was made in a place where it could have been contaminated ( by a mixed line).  Other possible gluten sources are medications, vitamins, soaps, shampoos, and lotions.

 

If she had a positive biopsy, it's pretty certain it is celiac though.  This report has more info on testing starting on page 8: Open Original Shared Link

 

You and your husband, and any other children, should also be tested for celiac disease, and tested every few years if you continue to eat gluten. As you know it is genetic, and it can become active at any time.

 

Best wishes. I hope she feels well soon!

[Georgia-guy]

I breast-fed until 6 weeks, so she could have gotten some from me, but it was very little, I only produced an ounce or so per feeding, and I stopped at 6 weeks.

Is an ounce or so of breast milk a "low amount"? Did you choose to stop breast feeding, or were you no longer producing milk? I ask because I was reading over the University of Chicago Celiac Disease Center list of symptoms, and it mentions "short duration of breast feeding". As this is a list of symptoms, I would assume that it refers to a mother's symptoms, not to the child being breast fed for a short period.

As has been said, celiac is genetic, and testing of everyone in the immediate family is strongly recommended after someone gets a positive diagnosis.

Here is a link to the U of C symptom list:

Open Original Shared Link

I recommend reading over it and thinking about yourself and your husband. There are over 300 symptoms listed, majority of which most people (and a lot of doctors) don't associate with celiac.

[sashasmommy]

Yes, it's a very low amount.  My mother also had trouble breast-feeding me.  I chose to stop because I was producing so little and it seemed like the baby spit up more on my milk than she did on the hypo-allergenic formula.  I will take a look at the list.  Now that I think about it, my husband has been compaining of digestive issues in the past couple years.  I asked him last night if he had considered that he might be allergic to gluten, and he said no because he had always been able to eat it in the past.  But we didn't realize that celiac is something that you can have your whole life and not have symptoms, and then all of a sudden have symptoms show up.  If my husband and I get tested and it is found that one of us has it, do you think the parents should get tested as well?  Given the fact that they are in their mid-70's, or is it just a lost cause at that point?

[greenbeanie]

My daughter also had eating issues since birth, and we finally figured out four years later that she has celiac. I exclusively breastfed for the first 5+ months, during which time she had projectile vomiting, screaming and thrashing every 45 minutes in sleep, general irritability and sound sensitivity, and other problems that the doctors first dismissed as colic or an immature digestive system. However, it got worse instead of better over time. I ate very little gluten myself while breastfeeding, and she had no solids at all until about 7 1/2 months (because we were trying to figure out what on earth was going on and did all sorts of allergy testing). We tried Alimentum (hypo-allergenic but still milk-based) and she couldn't tolerate that, so she eventually ended up on Neocate and immediately improved. When she started solids and insurance stopped paying for Neocate after she turned 1, things went downhill again. She actually did see a pediatric GI as an infant, but he didn't even test her for celiac because she'd only had breastmilk at that time, and apparently he didn't believe that alone could trigger celiac. Anyhow, it took three more years of problems before she got a proper diagnosis. 

 

I hope your GI appointment goes well, and you get some definite answers. I know it's so hard to wait so long to see the doctor for something like this! I really, really, really wish we'd known much sooner that my daughter has celiac. Her tTG antibodies were quite high for a kid at diagnosis (over 16x normal), and I strongly suspect that she would have tested positive much sooner if anyone had run the tests. It was a huge relief to finally know what was wrong and be able to help my little girl, and our whole family's quality of life improved tremendously. Though it may not seem like it now, it can really be a blessing to find out that a child has a problem with a clear solution. Good luck!

[sashasmommy]

My daughter also had eating issues since birth, and we finally figured out four years later that she has celiac. I exclusively breastfed for the first 5+ months, during which time she had projectile vomiting, screaming and thrashing every 45 minutes in sleep, general irritability and sound sensitivity, and other problems that the doctors first dismissed as colic or an immature digestive system. However, it got worse instead of better over time. I ate very little gluten myself while breastfeeding, and she had no solids at all until about 7 1/2 months (because we were trying to figure out what on earth was going on and did all sorts of allergy testing). We tried Alimentum (hypo-allergenic but still milk-based) and she couldn't tolerate that, so she eventually ended up on Neocate and immediately improved. When she started solids and insurance stopped paying for Neocate after she turned 1, things went downhill again. She actually did see a pediatric GI as an infant, but he didn't even test her for celiac because she'd only had breastmilk at that time, and apparently he didn't believe that alone could trigger celiac. Anyhow, it took three more years of problems before she got a proper diagnosis. 

 

I hope your GI appointment goes well, and you get some definite answers. I know it's so hard to wait so long to see the doctor for something like this! I really, really, really wish we'd known much sooner that my daughter has celiac. Her tTG antibodies were quite high for a kid at diagnosis (over 16x normal), and I strongly suspect that she would have tested positive much sooner if anyone had run the tests. It was a huge relief to finally know what was wrong and be able to help my little girl, and our whole family's quality of life improved tremendously. Though it may not seem like it now, it can really be a blessing to find out that a child has a problem with a clear solution. Good luck!

Wow, your poor little girl!  I'm glad you got things figured out.  So, when the doctor left the message about what they found in the biopsies, he said that we might want to try cutting out gluten.  But I read that for the tests to be accurate, you have to ingest gluten for a certain amount of time (12 weeks?) before the test.  So, I'm thinking that if we want to test, we need to continue giving it to her at this point, at least until we have the GI appt and I can talk to him about it.  Is my reasoning correct?

 

Also, in that same article, I read that the person has to consume the equivalent of a piece of bread a day, for the test to be accurate.  But I'm guessing that was talking about an adult.  What about an infant?  Would baby food that lists "oat flour (contains wheat)" be enough?  She gets one pouch per day and it's the 4th ingredient, so I have no idea how much wheat is in there.

[greenbeanie]

So, when the doctor left the message about what they found in the biopsies, he said that we might want to try cutting out gluten.  But I read that for the tests to be accurate, you have to ingest gluten for a certain amount of time (12 weeks?) before the test.  So, I'm thinking that if we want to test, we need to continue giving it to her at this point, at least until we have the GI appt and I can talk to him about it.  Is my reasoning correct?

 

Also, in that same article, I read that the person has to consume the equivalent of a piece of bread a day, for the test to be accurate.  But I'm guessing that was talking about an adult.  What about an infant?  Would baby food that lists "oat flour (contains wheat)" be enough?  She gets one pouch per day and it's the 4th ingredient, so I have no idea how much wheat is in there.

 

I'd recommend calling the GI's office back and asking specifically about celiac blood tests. Did the doctor run a full panel of celiac blood tests already, including DGP-IgA and DGP-IgG (since those may be more accurate in young children)?

• If so, what were the exact results and reference ranges? Insist on getting a copy of the actual results. Also, definitely get a copy of the full biopsy report next time you're there.
• If not, will he order the blood tests at the appointment on June 2? Tell them how much gluten your daughter has been eating, and for how long, and clarify exactly what their recommendation is for what you should be feeding her until your appointment. 

You are right that celiac tests are inaccurate for people already on a gluten-free diet. I believe that false negatives may be more common for very young children anyhow, since they haven't had as much time to build up the antibodies yet, and I'm not sure there are any clear guidelines for how long of a gluten challenge an infant would need. My own sense - which is really just a guess - is that one pouch of baby food per day with oat flour as the 4th ingredient probably only contains a minuscule amount of gluten (i.e., likely cross-contamination from wheat in the oat flour, but no gluten directly added) and isn't enough for a gluten challenge. It could certainly be enough to make someone with celiac sick, but it doesn't sound like the equivalent of a "regular, gluten-containing diet" even for a baby. A pouch of fruit/veggies with actual wheat added, or a small serving of cream of wheat cereal, seems more like a baby-size serving of gluten to me. This is just a guess, though. But even with more gluten it's still possible that the blood tests would be false negatives, so a negative result wouldn't necessarily rule out celiac. 

 

However, the GI may already have enough data for a definitive diagnosis, even without additional testing. They may have run the blood tests at the time of the endoscopy (they drew my daughter's blood when she was sedated then), or the biopsy results may have been so clear that he didn't see any need to go back and run the blood tests too. Generally the blood tests are run first when celiac is suspected, and that helps determine whether they decide to do an endoscopy. Since they already did an endoscopy for your daughter, the doctor may not see the blood tests as necessary. (Personally I'd want to have the celiac panel run anyhow, as a baseline for future reference, even knowing that it could show false negatives. But I can see why someone might think that was just likely to confuse things. My understanding is that a positive biopsy is really quite definitive, regardless of the antibody results.)

 

Hopefully you can at least speak with a nurse at the GI's office to clarify the exact status of testing and their recommendations for whether to feed her gluten or not until the appointment. It's confusing when they recommend for people to "try cutting out gluten". It could mean that they know it's celiac and she definitely needs a gluten-free diet, but they want to explain it in person so they just gave you vague advice until your appointment. Or it could mean that the biopsy suggests celiac but wasn't entirely clear, so she needs further testing and a dietary trial before celiac can be confirmed or ruled out. In that case you really do need to know now whether further celiac blood tests are going to be ordered, since that will determine whether you "try" a gluten-free diet before or after the appointment (or after any further testing is complete).

[sashasmommy]

They did not suspect celiac at all when we went in for the scope, they were trying to rule out reflux. So, I'm sure they did not do any blood tests for celiac.  The first indication they had was when the results came back from the biopsies.  The Dr said they were sending the results to Children's Hospital for a second opinion, so it sounds like they are not sure.  I'll call them... of course they're closed now until Monday :-(  Or maybe even Tuesday because of the holiday.

[mommida]

Have you been tested for Celiac?  If you are a Celiac and were consuming gluten, the antibodies were passed (along with gluten) in the breastmilk.

 

Get in for testing as soon as you can.  :)  Feel better soon!

[sashasmommy]

Have you been tested for Celiac?  If you are a Celiac and were consuming gluten, the antibodies were passed (along with gluten) in the breastmilk.

 

Get in for testing as soon as you can.  :)  Feel better soon!

I have not been tested...

[beth01]

Just a thought but many celiacs have problems with their tooth enamel.  You might be a "silent" case with none of the big tip offs.  And it is hereditary so it had to come from some where.

[sashasmommy]

Interesting... we are waiting for my daughter's GI doctor to put in orders for me and my husband to get tested.  We'll see what comes of that.

[thepeach80]

We had a lot of food issues with 3 of my kiddos as babies. Hypoallergenic formula like Alimeuntum is not dairy free, my bad three couldn't tolerate it and did well on Neocate when we stopped nursing or as a supplement in the toddler years. My one couldn't have corn either until about 15 months so we were born on a dairy/corn free diet. It's about impossible to get a formula that is corn and dairy free. Some kids who have dairy issues do ok on Alimentum ready to feed because it's corn free, but it's not dairy free so if you have issues with both, you may be screwed. Some other issues included wheat, soy, egg, and various fruits. Corn is also in reflux meds and abx and about everything so being corn free is a huge pita if your kid needs meds. We use/d Acetaminophen suppositories for fevers and such. They have corn, but since they are inserted in the rear and not in the gut, it didn't seem to both her as a baby. I'm sorry you have to go through this. It blows. Good thing is by 2.5, everything had been outgrown by all the kiddos.

[sashasmommy]

Yeah, she was on Elecare and didn't do any better on that.  She seems to do better on Alimentum RTF than Elecare, but at this point she's starting to wean herself off formula anyway.

[thepeach80]

One of mine didn't tolerate Elecare but did great on Neocate. What are you going to give her in place of formula? 

[sashasmommy]

Well, I've just been trying to feed her more food to get more calories in.  I've tried giving her hemp milk and almond milk and she's not interested in either of them.  She won't even drink apple juice.  I just got her to drink a little water from a sippy cup in the last few days.  Progress :-)