New Here- My Baby May Have Celiac Disease :(

[ACottrell]

Hi everyone,

This is my first time posting. I have a 16-month old boy who stopped growing about six months ago. My former pediatrician just kept telling us to feed him more, despite the fact that I told him my son ate all day! Agh! Long story short, my NEW (and wonderful) ped. did blood work and a bone scan on my son. His bone scan showed his skeletal age to be that of a 6-9 month old and the only thing irregular in all the blood work was an elevation in antigiludin (sp?) antibodies. I don't have numbers for you, but the nurse said out of the 3 panels they ran for celiac, this was the one that was elevated and, given his growth delay, it is definitely a red flag.

Does it sound like my son has celiac? We are meeting with a pediatric GI doc on Wednesday and I understand that he may request an endoscopy/biopsy. We absolutely do NOT want to do that, so we hope he won't try to railroad us. We would prefer to just try the diet and see how that works out. That isn't unreasonable, is it? He's just so little, only the size of a 6-9 month old and he nearly a year and a half!

As for symptoms, he doesn't look or seem malnourished at all. His height and weight are proportionate, his cheeks are chubby, he is happy, active and never sick. I attribute a lot of that to extended breastfeeding. However, his stools have always been soft and his growth is delayed.

Thanks for reading- just looking for input/thoughts from those more experienced with this! We are very worried about our little boy.

Amy

[Fiddle-Faddle]

Welcome, Amy!

No, it's not unreasonable to want to try the diet. While most here have not had trouble with endoscopies, it IS an invasive procedure and has risks, especially for little ones. The anesthesia alone is a big risk, and I wouldn't consider it for my children, either.

The IgG is indeed a red flag. You do NOT need a doctor's permission to try a gluten-free diet (I am quoting one of this board's most knowledgable members, Nini). There are no nutrients in wheat that you can't get elsewhere. Good for you for the extended breastfeeding, I'm sure that has made a HUGE positive difference for your child.

What sorts of things does your baby eat? What is a typical day's food and drink list? I don't mean to be nosy; it's just that a friend of mine had similar problems with her 2-year-old. somehow, it turned out that, besides for having a problem with soy, he was also drinking 40 ounces a day of juice. And she is a very bright, well-educated nutritionist, and her husband is a family practice physician!!! These things can just slip by you, especially if you have other children, or work. There's just so much to keep track of these days, isn't there?

Have they ruled out a growth hormone deficiency and other height disorders? I know breast milk usually goes first to bone and brain growth. Do you have any celiac-type issues, or other autoimmune disorders, like thyroid?

I don't want to scare you, but does he have a heart murmur? My oldest son ended up having open-hear surgery at 2, after which his growth just shot up. Apparently, he had been burning up a lot of calories just circulating blood. Our pediatrician had initially dismissed the heart murmur, and only grudgingly sent us to a cardiologist, saying that it was most likely nothing. And these days,the way health insurance goes, they are a lot less likely to refer you to a specialist now.

There's also the whole vaccine issue, which I believe to be linked to autoimmune disorders (like celiac). I'm not saying that vaccines cause celiac (for all I know they may, or it may be the other way around, who knows); I just think they are linked. And I'm not saying don't vaccinate at all, either; but you don't have to follow the recommended schedule (26+ vaccines by 18 months? INSANE!), and I certainly think that it is a good idea to only get one vaccine at a time, and space them out by six months or so. And I think the flu shot is iffy at best; my experience (the only two years I have been sick were the two years I got the flu shot) seems to be quite common. I think that it is unquestionably a terrible idea to vaccinate someone with a leaky gut. Besides, the regular flu shot does contain thimerosal. You have to ask ( and pay extra) for the thimerosal-free one.

Anyway, good luck with the pediatric GI doc; if he insists on an endo, find another one. A biopsy is only a good diagnostic tool if they happen to biopsy the right area; villi damage can be patchy, or even nonexistent, espeically with thte extended breastfeeding (which the doctor is unlikely to know or admit). A gluten-free diet can give you the same answers without the risk.

Keep us posted, okay?

[FeedIndy]

It sounds a lot like my little one. She was tiny, but didn't look malnurished as she was also proportional and had chubby cheeks. We went wheat free as the blood results were processing. She gained 5 ounces in the 1st 5 days. She has gained 4 pounds in the last 3 months so it is definitely the way to go for her!

If he has one positive marker, chances are he is celiac. I've heard people on this board equate it to a pregnancy test-you can't be just a little bit pregnant either. My DD ended up testing negative for celiac, but we chose not to do the biopsy anyway. She has been diagnosed on dietary response only.

We decided all that matters is that its working, who really cares why!

[azmom3]

My little guy is now 26 months and is the size of a 1 year old. His IgG was the only high one on the celiac panel. Both our allergist and pediatric GI doctor, (who's very knowledgeable and came highly recommended for dealing with celiac), said that it could be celiac, but that it could also have something to do with allergies. We had lots of allergy testing done and found him to be allergic to lots of foods as well as environmental and seasonal stuff. He weighed 20 pounds, 12 ounces at his 2 year check up. We removed all known allergies...dairy, eggs, peanuts, tree nuts, sesame seeds, and coconut. We also started him on Miralax for his severe constipation. In just 1 month, he gained almost 2 pounds. We have since done additional testing. So far, there are only a few things that he's tested negative to....he's positive to a lot of stuff. Both doctors said the high IgG along with the high number of allergies and his overall "allergy number" lead them to believe that he could also have something called eosinophilic esophagitis (there have been discussions on this board about this before). We opted to have the biopsies done so we could hopefully figure out what exactly is wrong so we can treat him more quickly and accurately. If it's celiac, we treat one way. If it's EE, we treat another. Both can do serious damage quickly, so I wanted to get answers right away to avoid this. We will get answers hopefully by Monday.

Anybody looking at my son would think he seemed very normal. He doesn't look malnourished or sick. Compare him to another child his age though and he is very tiny. I can also say that just from the few changes we've made already, he seems like a completely different kid. I didn't realize how clingy and needy he really was (I just got used to holding him and comforting him all the time), until he started feeling better (after taking allergens out and getting him to poop more regularly.) We are trying the gluten free diet regardless of what the results say and I'm hoping he will improve even more. If it's EE, we may have to make other changes, but will keep the gluten out.

[Guest nini]

We did not do the endoscope with my daughter, her blood tests were negative, but instead we opted to just try the diet and see if it helped. I wouldn't have thought to even consider trying it if I hadn't been recently diagnosed with Celiac myself, but after doing lots of research and realizing the genetic component of this disease, we got her pediatrician to support us in a dietary trial. Lo and behold, it worked! Now, the gluten free diet can be an extremely healthy diet if you do not rely on the processed gluten free substitute foods. Stick with foods naturally gluten free and your child can get all his nutritional needs met. If there are OTHER problems you can continue to search for those WHILE on the gluten-free diet. This diet only affects testing where Celiac is concerned. The amazing thing about Celiac/gluten intolerance is that it can be completely treatable by diet alone. No medications or surgery needed. Once on the diet if someone is gluten intolerant/Celiac, their body usually begins to heal right away (I say usually because in older people it can take much longer) and when accidental gluten ends up in the diet (which will happen) most people can see a pretty immediate reaction. (some people don't react at all so don't judge lack of reaction as a defining clue).

All I am saying is it may be Celiac, it may not... with the positive markers and symptoms you've described I would say it's definitely leaning that way. A biopsy can only confirm the diagnosis, it can never ever ever completely rule it out and any Dr. that tells you that it can is operating on outdated and dangerous information. Positive dietary response is the best indicator combined with positive blood tests it would be confirmation. Keep in mind that people with Celiac (untreated) are also prone to many other autoimmune disorders and at risk for certain cancers as well.

[zachsmom]

You know celaic has certian symtoms but also ... have symtoms that most of us have or some of us... But if you look some one here will have heard of what your baby has.... I have a 13 monthy old that I SWEAR caught ROTO VIRUS and developed Celiac.... there is a jama article on this someplace... I was in the doctors office at ALL CHILDRENS and asked the specialist about it... the doctor said.. he didnt have enough info to verify .. through his expirence... ( you go to the doctors and you bring up things that you have seen and your treated like you have seen somethign that is strange and unheard of... ) BUT anything is possible like the parents who have children run a fever after they have been glutened..... Doctor said NO WAY .. But people are saying that .. yes ... they are running fevers ... So my child ran a fever for no reason... yeah right. // Your goig to find that this web site is really at the front line of this disease... There is so much loving and caring people who are willing to wipe your tears and dust you off. But there are so many symptoms that people get related to Celiacs... that someone here also probably has.

That probobably did not help... But this site is the best place for up to the minunte help.

[ACottrell]

Thank you everyone for such helpful replies and support. To answer a few of your questions, his diet consists of yogurt, fruit and rice cereal for breakfast. For lunch and dinner, he usually has one of the Gerber toddler entree meals, which are balanced and healthy. They usually have some meat, pasta and a veggie side. He doesn't drink any juice, just whole milk and he only drinks that with meals and his snacks, which are usually crackers of some kind or fruit.

We did test him for a host of other problems and ruled out growth hormone deficiency, liver and kidney disease and thyroid. I think the last on her list of tests was a sweat test for cystic fibrosis, but he has no symptoms at all for that so she put it off as a last resort. She did find a heart murmur also, which my first pediatrician never even mentioned to us (!), so he is also seeing a cardiologist in a few weeks to rule out any problems there. She said that the location and the fact that it wasn't very loud doesn't really have her concerned, but she wants to be thorough.

I should also add that while no one in our family has been diagnosed with an autoimmune disorder, my husband did have a very delayed puberty. He hit puberty in college, in fact, which I didn't know until the doctor quizzed us on medical histories, lol. I did read somewhere that celiac can cause that in undiagnosed teens. Maybe my husband has it but doesn't know? I think it would be prudent to get us both tested, just in case.

Thanks again!

Amy

[happygirl]

Just a word of warning, if you ever want an "official diagnosis" of celiac disease, and he has not had a positive biopsy, he will be met with resistance from the general medical community. he would have to go back on a gluten filled diets for months. (not advocating anything, just sharing).

get a copy of his results. you'll need to know also if they ran the Ttg part of the celiac panel.

[ACottrell]

Just a word of warning, if you ever want an "official diagnosis" of celiac disease, and he has not had a positive biopsy, he will be met with resistance from the general medical community. he would have to go back on a gluten filled diets for months. (not advocating anything, just sharing).

get a copy of his results. you'll need to know also if they ran the Ttg part of the celiac panel.

I was afraid of that! I don't know what to do, frankly. I had such a knee-jerk reaction to the idea of the biopsy that my husband and MIL are totally on board and I don't have much room to waiver. I pray the doc is sensitive about this issue, rather than patronizing and clinical (asking for miracles there, huh?). I also don't want a refusal to do the biopsy to strain our relations with our new pediatrician, who has been a Godsend so far. Without her, I would still be trying to "fatten" my son up with olive oil and avocados, like the last doc suggested!

My son wakes up repeatedly through the night, which I have always attributed to separation anxiety, but now I suspect he may really be in pain! Of course, he is too young to tell me if he is. I just put him back down a minute ago and noticed him whimpering himself back to sleep while rubbing his tummy. Am I seeing things now?

Another thing I am worried about is that we went to Whole Foods yesterday and got a bunch of gluten-free food. We started the diet last night- should we not have done that? At the time I didn't think about it 'cause we were sure we weren't going to do the biopsy. I am sick with worry (as well as 7 months pregnant) and completely confused.

[Fiddle-Faddle]

My oldest son was also a several-times-a-night-waker. He NEEDED a warm body, preferably mine or his daddy's, but the cat or the neighbor's dog worked just fine, too. I finally came to the realization that they need what they need, in spite of doctors who insist that every child needs to learn to put themselves to sleepand stay asleep. When they are ready to sleep on their own, they will. (Of course, that might not be your son's issue at all, but just in case it might be...)

There was a hospital in Brazil that discovered that babies who were worn by their nurses (because of a shortage of incubators) grew much better and were calmer than the incubator babies. Not all babies need or even want to be worn, but it certainly can't hurt to try if you are not doing so already. Obviously, if you are 7 months pregnant, you can't comfortably wear him, but your husband could. I wore my babies for 2-3 years each in a sling; I only very rarely put them in a stroller.

I do hope the heart murmur turns out to be nothing.

One final thought--as the mother, I think YOU should have the final say about whethr or not he gets the endoscopy done. Not the doctors, not your husband, not the grandparents, but YOU.

If the bloodwork is already positive, what is the point of a biopsy? You already know there is a problem with gluten. A biopsy will only indicate the level of damage done to the villi biopsied; it will not change the blood test results, and it is not a highly accurate indication of celiac because they could easily biopsy an unaffected patch. Just because it says in the textbook that it is the gold standard of diagnosis doesn't mean that it is really all that accurate, especially for small children, who are less likely to have damaged villi. It just ups the cost and the risk, and no matter whether the results are negative or positive, your child will obviously have to be off gluten in any case because of the bloodwork.

I don't want to start a war between you and the doctor, but I'm on your side.

[Guest nini]

on the other side of the coin, there are advantages to NOT having an official dx. I have an official diagnosis of Celiac on my record, and I have been denied health insurance because of it. My daughter's official diagnosis is "gluten intolerant" which does not make her "uninsurable" and we still have a Dr.s note on file for school that says she's gluten intolerant.

With the positive bloodwork I'd say it's a definite that he's gluten intolerant, and if you don't feel comfortable putting your child through the endoscopy then don't do it. Ultimately it's YOUR choice and if the Dr. gets all pushy about it, you can simply go find another Dr. that will support you on this...

[ACottrell]

My oldest son was also a several-times-a-night-waker. He NEEDED a warm body, preferably mine or his daddy's, but the cat or the neighbor's dog worked just fine, too. I finally came to the realization that they need what they need, in spite of doctors who insist that every child needs to learn to put themselves to sleepand stay asleep. When they are ready to sleep on their own, they will. (Of course, that might not be your son's issue at all, but just in case it might be...)

There was a hospital in Brazil that discovered that babies who were worn by their nurses (because of a shortage of incubators) grew much better and were calmer than the incubator babies. Not all babies need or even want to be worn, but it certainly can't hurt to try if you are not doing so already. Obviously, if you are 7 months pregnant, you can't comfortably wear him, but your husband could. I wore my babies for 2-3 years each in a sling; I only very rarely put them in a stroller.

Oh, we are totally on board with attachment parenting. We have worn our son, co-slept, breastfed until he self-weaned, etc. He was thriving so well until about 10 months, which was about the time he really started eating solids. We never connected the two until now! And you are positively right, I shouldn't expect the little guy to be an independent sleeper just yet. I was just wondering if the constant waking might be related to celiac since many of you have seen an improvement in your children's sleep patterns.

And thanks to you ladies for being supportive about the biopsy issue. I absolutely don't want him to have it, but I guess I'm worried about what the doc will say. I was just looking for more validation, lol. It has been so nice to find this board and meet so many people who have gone through the same thing! Thanks!

[Fiddle-Faddle]

[zachsmom]

I might be lost here.... I thought I read all the postings.... But if he is on gluten now.... how long has it been since he had it... ( I have a 14 month old ( I swore I had posted this in your questions but I cant find it now... ) who after having roto virus back when he was 5 months old all of a sudden vomited after each feeding of cereal... ) we did the testing and because of me ... I stopped feeding him wheat all together.. HE CAME BACK NEGATIVE... but still vomits when given gluten... any way I choose not to do the biopsy... because of the low amount of wheat I gave him ... the biopsy wouldnt show a positive outcome... so we are in the waiting stage...

But the sleep problems ... have you considered .... that the gluten is related to sleep problems... There is a whole fourm for sleep problems and people on the site... It very well could be related.

But I am in the stage where baby food is no longer going to cut it ... and big people food is somethign the baby wants to eat... and I am scrambling to find foods that my whole family can eat... no one but the baby has this problem... but my 12 and 9 year old have sensory and add. so everyone going to gluten free ... it is a big decision... But the bigger kids problems ... may possibly be related to gluten... ( more and likely) .. So I know what your feeling and am there if you need a friend. The people here are really caring... they are lifesavers. chris

[ACottrell]

Well, I wouldn't say he was completely gluten-free just yet. We started the diet two days ago and are still learning, so I am sure we've made mistakes. I picked up a book today: The Glute-free Bible. It looked like a good place to start for me. Even if they do testing on Wednesday, I don't know how much our new diet will affect it since we are learning as we go.

Like you, I have a baby who wants people food, so my husband and I decided that we will all just cut out the gluten, at least when we are eating as a family. That way, we won't be making two meals at once. I'd be curious to know if one of us has it since it is usually genetic. We will talk to the doc about that too. Thanks for the help!

I might be lost here.... I thought I read all the postings.... But if he is on gluten now.... how long has it been since he had it... ( I have a 14 month old ( I swore I had posted this in your questions but I cant find it now... ) who after having roto virus back when he was 5 months old all of a sudden vomited after each feeding of cereal... ) we did the testing and because of me ... I stopped feeding him wheat all together.. HE CAME BACK NEGATIVE... but still vomits when given gluten... any way I choose not to do the biopsy... because of the low amount of wheat I gave him ... the biopsy wouldnt show a positive outcome... so we are in the waiting stage...

But the sleep problems ... have you considered .... that the gluten is related to sleep problems... There is a whole fourm for sleep problems and people on the site... It very well could be related.

But I am in the stage where baby food is no longer going to cut it ... and big people food is somethign the baby wants to eat... and I am scrambling to find foods that my whole family can eat... no one but the baby has this problem... but my 12 and 9 year old have sensory and add. so everyone going to gluten free ... it is a big decision... But the bigger kids problems ... may possibly be related to gluten... ( more and likely) .. So I know what your feeling and am there if you need a friend. The people here are really caring... they are lifesavers. chris

[canonista]

Hi: I'm also new here and am technologically challenged, so if this post is messed up, bear with me. I joined this message board with a specific question and was happy to see it hinted at in your post. (see below)

I know that all mainstream opinion (i.e., in parenting magazines, your average medical professional, etc.) states that vaccines do not cause autism, but I wonder if a disease like celiac can PRE-DISPOSE a child to vaccine reaction, thereby lead to autism/autistic symptoms and the like. Does that make sense? I know vaccine reactions are relatively rare, but do the ones suffering reactions also have celiac disease?

I tried to explain the distinction to a noted expert on vaccines in the Philadelphia area (Paul Offit) but couldn't get him to actually listen to/consider my question- he just rebuffed and dismissed me as some kind of anti-vaccine crazies.

Any opinions or other related info would be very welcome.

There's also the whole vaccine issue, which I believe to be linked to autoimmune disorders (like celiac). I'm not saying that vaccines cause celiac (for all I know they may, or it may be the other way around, who knows); I just think they are linked. And I'm not saying don't vaccinate at all, either; but you don't have to follow the recommended schedule (26+ vaccines by 18 months? INSANE!), and I certainly think that it is a good idea to only get one vaccine at a time, and space them out by six months or so. And I think the flu shot is iffy at best; my experience (the only two years I have been sick were the two years I got the flu shot) seems to be quite common. I think that it is unquestionably a terrible idea to vaccinate someone with a leaky gut. Besides, the regular flu shot does contain thimerosal. You have to ask ( and pay extra) for the thimerosal-free one.