What Do You Think About My Baby Boy...

[e&j0304]

You have all given me such great support and information so far as I have tried to figure all of tihs out with Ella. She is doing so wonderfully and I feel as though I can give you all some of the credit for that for helping me to become an informed and empowered parent when it comes to her health.

My question today is about my baby, who is 11 months old. He was diagnosed with reflux at 2 months of age and since he was gaining well and seemed happy we decided against the prevacid and just tried to keep him upright after feeding, etc. He has never really stopped spitting up and although it doesn't always come shooting out, he spits up often throughout the day and often just swallows it back down. He is now walking and I assumed that the spitting would have stopped by now.

He is also a TERRIBLE eater. He basically eats nothing and still nurses every 3-4 hours all day long. He has started waking up in the night and I think it's because he's hungry. We had an OT come out to our house today to evaluate him due to his lack of eating and she said that she thinks he has reflux (she witnessed the spit up and swallow a few times). He generally takes about one bite of something and then screams to get out of his highchair.

He also has diarrhea at least 4 times per day that is generally water in consistency although it sometimes has some mucous in it. It basically just soaks into his diaper. The OT said this could be food allergies. These stools have been going on for months and I just attributed it to the fact that he was still almost exclusively nursing and not taking in any solids.

This brings me to my question. Can testing for gluten sensitivity be accurate in a child so young? Ella tested pos. through Enterolab, but showed double genes for gluten sensitivity, not celiac, so would it be likely that the baby would not have celiac genes as well? There is no way I can get a stool sample from him since it just soaks into his diaper.

Other than gerber fruit puffs he doesn't really eat any gluten himself, but he may get it through my breastmilk.

Would it be best to have him tested or just try the diet?

I really want my husband to be tested. He has suffered for many years with stomach cramps, diarrhea (is on the toilet all night after eating certain foods), headaches, muscle aches, and just a bad mood sometimes. He does not feel that he can do the diet...

Anyway, sorry for the novel. I just want to approach this the best way. I don't want my little guy to suffer. He doesn't seem to be bothered by any of it though (the spitting or the diarrhea). He is a VERY happy little baby.

Thanks in advance!

[Ursa Major]

Ella, he sure sounds like he is gluten intolerant as well. And yes, he probably gets it through the breast milk. In order to keep breastfeeding him, you'll have to go onto the gluten-free diet yourself (a sacrifice that may be worth it for you, since it would be temporary). And of course, you'll have to switch his diet to be gluten-free (which at this early age will be a cynch). In fact, it sounds like you might want to try putting the whole family on a gluten-free diet, it sure looks like the kids inherited the gene from their dad!

My twin grandchildren were tested to be intolerant to the nightshade family when they were babies (potatoes, tomatoes, peppers, eggplant). And since my daughter was eating those (and breastfeeding them both until over a year old), they were always getting sick and having excema. When she stopped eating those, they were fine (or so we thought, but now it looks like they are both gluten intolerant as well!).

[e&j0304]

Thanks, Ursula.

I guess I will just take all the info I have into his ped. and see what she says. I would love to have him tested, but I'm not sure that will work right now since he's so young. On the other hand, I don't want to wait too long and cause him further damage if this is the problem.

I hope your little grandkids are doing well!

[Ursa Major]

Shannon, why wait for testing? If you put him and yourself on a gluten-free diet and see improvement, that should be all the evidence you need at this point.

I talked to my daughter yesterday, and I think she is going to try the twins on a gluten-free diet to see what happens. She said that Ethan often wakes up from his nap crying unconsolably, saying he is so sad (for no reason she can see). Also, sometimes he says his knees and ankles are hurting badly (sounds just like me at that age, the stupid doctors claimed I had growing pains). And Meghan can't seem to learn to talk properly, despite obviously being very bright. I can't understand her at all (and they're 3 1/2). Also, they were both anemic around one year of age or so. All symptoms I have read these past two weeks can be from gluten intolerance. Oh, and they both used to have terrible excema. It cleared up though when they were taken off the nightshade family.

I hope she will do the diet, she was complaining about the cost and the extra work, and how much they liked porridge for breakfast every morning! I told her that she can make porridge from something else. It's hard for her to go shopping for those things, she'd have to drive much farther, with four kids (the oldest is 5, and the youngest is 1).

But I told her that it would be worth it, if Meghan learns to speak properly, and Ethan's pain and moods get better, and she would avoid them having the terrible problems I developed from undiagnosed and untreated celiac all my life.

[lbsteenwyk]

Testing in children under 2 years of age is likely to be inaccurate. I would discuss it with your pediatrician, but more to let him/her know that you intend to put your son on a gluten free diet and see what happens. It's not normal for a child to have liquid diarrhea 4 times a day, even if it doesn't seem to bother him. Reflux can also be a symptom of celiac disease. Good luck with your decision.

[taweavmo3]

It really does sound like your baby may have it too. I was having the same dilemma recently about my youngest......whether or not to keep him on gluten until he could be tested, or just put him on the diet. When I brought my concerns to the doctor, he basically told me Ben wasn't sick enough to be tested, and that 3+ stools a day were normal.

Ben doesn't have the exact same symptoms as Emmie, but he does have frequent stools, lactose intolerance, reflux, yeasty diaper rashes, and has been anemic. The only difference between my two kids is that Ben is still thriving. He is a robust, plump faced, happy little baby. SO, the ped looks at me like I'm insane when I mention I think he has celiac too! Ben may just have an intolerance at this point, I dunno. I don't know how he is still gaining weight, everything he eats seems to come right out.

I finally just decided I had waited long enough, talked myself out of it enough, and it was time to put him on the diet. He's home with me all the time anyway, and with our house being gluten free, there isn't much gluten for him to eat. So, feeding him gluten-free wasn't a huge change really! I'm keeping him gluten-free until he's 4 or 5, or at least until I feel that all the major milestones have been met. I'll discuss this with the ped at our next appt., and I hope that he'll support it.

After all, even if I did wait to do the testing at age 2.....if it were negative, I wouldn't trust the results and I'd still put him on the diet. If it were positive, I would do the same. So, the end result no matter what the actual test result, would still be the same.

I hope all that rambling helps you somewhat! It was hard for me to decide what to do too. Now I have to decide about my 6 year old, he's had psoriasis for 2 years, and I think the diet would help him. But he'll be my biggest challenge......and 3 kids on a gluten-free diet??? YIKES!

Good luck.....hope you find some relief for your baby boy soon!

[e&j0304]

Thank you all so much for your replies. I am going to wait until I get the report from the OT about Jack's eating problems and possible reflux and then talk to her about it. I am sure that we will go gluten free with him as well, but as it stands now he isn't actually eating much gluten (other than Gerber Fruit Puffs) but is getting it in my breastmilk. I am trying to be gluten free for him. I would really love to wean him, but that's a challenge considering he doesn't eat and doesn't drink much milk out of a cup. He really only likes vanilla soy milk and that seems to make his diarrhea worse. You can pretty much predict that he will go within 1/2 to one hour after drinking the soy milk. He also has a problem with dairy though..

My kids are going to drive me crazy!!

Tamara, I am glad you went gluten-free in your house. I hope we can get to that point. My husband would be so much better, I'm certain. As far as Ben goes, I think you're doing the right thing. Jack is a VERY chubby little guy too. I don't think that has everything to do with the whole gluten sensitivity thing. I think my dr. might say the same thing though. Although, even after 3 months of gluten-free, Ella is still quite tiny and has only gained 1/2 lb. I kinda thought she'd gain faster, but she is happy and thriving otherwise so it's ok. She's not underweight. Just small. She'll probably only get up to 27lbs or so at 3 years old.

Ursula, good luck with your grandkids. I'll be thinking about them.

[Ursa Major]

Good for you Shannon, for going gluten-free yourself for Jack. I hope it will make a difference. And by the way, don't believe that kids really need milk (any kind of milk). Soy is not really healthy, either. Just give him water to drink, and make sure he gets enough calcium from something else!

Well, my daughter has, after thinking it over for a day, decided to put the whole family on a gluten-free diet to see what happens. I am so proud of her. I am convinced it will make a difference in the twins (and possibly herself and the other kids as well).

I'll be visiting them next week for a few days (I don't get to see them that often, it's a six hour drive for me), and will hopefully be able to see a change with my own eyes!

[e&j0304]

Good luck with the twins, Ursula. I hope your daughter sticks with it long enough to see a change. We saw improvement in Ella within 4 days, but I know it doesn't always happen that quickly. I hope that they do well. When I read your post about Meghan and her speech it really made me think because Ella also has had difficulty with speech and was VERY hard to understand. She has made improvements in that area, but it's hard to tell if it's from the gluten-free diet or just getting older. She's almost 3 now. I was also doing a little research on gluten ataxia and I feel as though she had a very mild case of that. She has always been so clumsy and still at almost 3 cannot jump with both feet off the ground. She used to fall over for no reason and just had poor gross motor skills at times. I wonder if that was from gluten.

She has also made improvements with her coordination, but again I don't know if it's from the diet or just age and the fact that I enrolled her in a little tumbling class to help with her motor skills. I guess it may be a combination of the two.

Anyway, good luck and I hope they improve. Be sure to post an update on them!

[Indea88]

Your dilemma sounds so very similar. My husband has Celiac wont follow the diet. My toddler who I breastfed never had a formed stool had indigestion, reflux, poor sleep, speech delays, behavior issues etc.. I had him genetically tested he tested positive for DQ2. I placed him on a gluten-free diet and within 4 days he had the first formed stool of his life. The changes were dramatic. I just wish I would have gone gluten-free while I was breastfeeding I just didnt know at that time. I know now and thank God I figured it out because if I were to have left it up to his Pediatrician he would still be sick. Good Luck and follow your instinct!!

[Merika]

Hi,

It's really common for kids with food allergies to not want to eat table food. My ds didn't start eating table food until 11 mos, and really didn't start eating in earnest until age 2. He is highly allergic to soy and also gluten-free. But we didn't know any of this until he was 2, and ate soy (and wheat) everyday. If I accidentally ate soy, he would react to the soy in my breastmilk. So we both went soy free.

Kids at 11 mos should be having one stool/day. You are right that there is something else going on. As for the ped saying no way, he's robust and healthy - well, the ped said that about my soy-allergic child too, and would have said the same about me if he'd seen me as a child - but I am celiac.

Good luck,

Merika

[Guest nini]

Your son sounds very much like the way my daughter was. She was dx with reflux very early on, had tons of watery diarrhea diapers all the time and was breastfed, and would refuse to eat table food at all. Getting her to eat was like pulling teeth, she hated to eat. Except for when I finally weaned her and fed her an organic gluten-free formula (didn't know it was gluten-free at the time) and made her baby food from scratch, all fresh veggies and fruits... cooked, pureed and frozen in ice cube trays... then she ate like a pig and gained weight, right up until the point that we introduced gluten foods into her diet. Then she stopped gaining weight and had terrible mood swings and would scream day and night... When I was dx with celiac, she was 3, and after putting her on the gluten-free diet, within days we had our answer. The testing was innacurate, partly because she was so young and partly because the Dr. didn't order the full celiac panel because he was convinced she "just had IBS"

I wouldn't even bother with testing at this point, just put your whole family on the gluten-free diet, it will be much healthier for you all anyway, and daddy might even start to feel better.

We've gone entirely gluten-free at my house

[e&j0304]

Thanks for the comments everyone. I have noticed a positive change in the baby although he still has some room for improvement! His stools are still a little mushy, but not water and he is only have 1-2 stools per day. He also seems to be eating a little better, but I think it will take some time because he's used to feeling yucky when he eats.

We are working on getting our whole house gluten-free. I have been reading Dangerous Grains and Wheat Free Worry Free. I am convinced that many members of our family would benefit from a gluten-free diet. I don't know if anyone actually has celiac disease, since Ella has a double copy of DQ-1, but I think many are gluten intolerant. Based on all the research I've been doing I am also starting to think that people with DQ-1 can develop celiac disease if their antibodies are reacting and they continue to eat gluten. Ella was so affected it's hard for me to believe that her intolerance would not cause any long-term health problems for her. I believe that in the future DQ-1 may be considered a celiac gene. The genetic testing stuff has so much further to go. But that's another story... I'll get off my soapbox now!

Anyway, I appreciate your input. I have learned so much here and look forward to helping out others with our experiences, especially since some of dd's symptoms are not "classic" and were overlooked for so long. I hope I can help others to get a quicker dianosis. I'm definitely not going to let my son suffer like my daughter did.

[Matilda]

...

[Rachel--24]

I believe that in the future DQ-1 may be considered a celiac gene.  The genetic testing stuff has so much further to go.  But that's another story...  I'll get off my soapbox now!

<{POST_SNAPBACK}>

I was going to start researching this tonight since I have DQ1. Where did you research it and do you have any links? Sometimes its really hard to believe I dont have celiac disease with my symptoms and I'm sure you feel the same about Ella. My GI doctor told me not having one of the 2 main genes doesnt rule out celiac. With all said and done sometimes I think I'm Celiac...other times I'm Gluten Senstive and the rest of the time I just don't care what I am. Guess I'll never really know. If they ever do come out and say DQ1 is a celiac gene...then I'll know for sure.

[Eeyorific]

These stories I'm reading are almost as if I wrote them about my son. If I could go back in time and change things, knowing what I know now, I would have taken all gluten (as well as the dairy that I removed) from my diet and continue to strictly nurse him for that 1st year of life omitting all other foods. I'm not sure what age your child is.. this is just what I know would have worked for us... the hind sight thing ya know Taking just the dairy out helped us, but not enough.

Another thing you may want to consider, but before suggesting it, I do not know anything about the Entrolab testing and their accuracy before the age of two. However, in order to collect the runny stools in the diaper, with Matthew, I would lay suran wrap between him and the diaper. Yes, it made for quite a mess. However, I was able to collect many stools this way. I would recommend gloves, and a sterile popsicle stick to scrap it off of the wrap into a cup.

I echo everyone else.. it sounds very much like your lil one also has gluten issues.

Sending many prayers your way!

God Bless,

Kristie

[e&j0304]

I was going to start researching this tonight since I have DQ1.  Where did you research it and do you have any links? Sometimes its really hard to believe I dont have celiac disease with my symptoms and I'm sure you feel the same about Ella. My GI doctor told me not having one of the 2 main genes doesnt rule out celiac. With all said and done sometimes I think I'm Celiac...other times I'm Gluten Senstive and the rest of the time I just don't care what I am. Guess I'll never really know.  If they ever do come out and say DQ1 is a celiac gene...then I'll know for sure.

<{POST_SNAPBACK}>

Rachel, I don't have any links offhand. I did a google search and also got some good info off of the Braintalk website. They seem to know a lot about the genetics. You could even just post a question over there on the celiac forum asking about what you'd like to know and I bet someone could point you in the right direction. It seems as though experts are just starting to understand the scope of what gluten can do to people and it seems as though in the future genes other than DQ-2 and DQ-8 will be considered celiac genes. It is true that a very small percentage of people (1-2%) do develop celiac with the DQ-1 gene, so that could be you in that small minority. I was also learning a lot about the neurological implications of gluten in a person with DQ-1 and I found many things that I saw in Ella that kind of made sense now. I think I remember you saying that you had some neurological things going on too. It's amazing how much of the body gluten can affect and I was previously just writing it all off or making other excuses for why she was that way. It's definitely interesting and I hope that more research is done soon! It's also nice to know that people are starting to realize that non-celiac gluten sensitivity can cause MAJOR health problems for people and is quite serious. After all, Ella does not have "celiac" but was so ill and affected in so many ways....there is no one on this Earth that can tell me that what she went through wasn't that serious. Amazingly enough, she is a brand new child now. Let me know if I can help you find any links later...I have to go check on my kiddos now. Ella is still sick!

Kristie,

Thanks for the suggestion on how to collect the poop. I never would have thought of that! His stools are a little more formed now that he's been gluten-free for a little while, but they still probably aren't normal. I will definitely try that if we decide to have him tested.

Thanks again,

Shannon

[Rachel--24]

Shannon,

Thanks for the tips on where to look. Sounds like you've really been learning about this stuff.

Yes, I did have neurological symptoms. I was sent to the neurologist more than any other specialist while I was sick....although I did end up seeing them all. She did a brain MRI and some other tests but everything checked out fine. The worst of my pain was from my shoulders up. I hurt everywhere but my head pain was excruciating....I figured I had a tumor or something. My mood changes very drastically on gluten...depression and anger.

Its hard for me to remember all that was going on...its sort of like a blur to me now. Occasionally I'll get curious and I'll say something like "I wonder what would happen if I ate a cookie or a donut?" My friend says "I'll tell you what will happen...you'll freak out and cry...tell me you want to die and then sleep all day like you did everyday when you were eating it...so DON'T EAT IT." Sometimes I just want to be reminded that I've improved drastically.

If it werent for the weight loss I probably would never have made a connection to gluten.

[VelezLA]

These stories I'm reading are almost as if I wrote them about my son. If I could go back in time and change things, knowing what I know now, I would have taken all gluten (as well as the dairy that I removed) from my diet and continue to strictly nurse him for that 1st year of life omitting all other foods. I'm not sure what age your child is.. this is just what I know would have worked for us... the hind sight thing ya know    Taking just the dairy out helped us, but not enough.

Another thing you may want to consider, but before suggesting it, I do not know anything about the Entrolab testing and their accuracy before the age of two. However, in order to collect the runny stools in the diaper, with Matthew, I would lay suran wrap between him and the diaper. Yes, it made for quite a mess. However, I was able to collect many stools this way. I would recommend gloves, and a sterile popsicle stick to scrap it off of the wrap into a cup.

I echo everyone else.. it sounds very much like your lil one also has gluten issues.

Sending many prayers your way!

God Bless,

Kristie

<{POST_SNAPBACK}>

[e&j0304]

Rachel,

I just wanted to add that there is a person who posts on here named George who also has a double copy of DQ-1 and it seems as though he has done a lot of research about it. He would probably be a great resource for you. Maybe if he sees this he'll post!

Good luck in your research. I find myself on the computer all the time know. I just figure that the more I know, the more I'll be able to help my kids. I have learned so much and feel as though I know more than her drs. do! Maybe I'm just being arrogant though!!

Take care,

Shannon

[e&j0304]

One more thing. If you go to Braintalk, check out the Gluten File and the other two files that are at the top of the topic lists. Those are full of info that I found helpful and interesting. It's helpful to read other people's diagnosis stories sometimes. They also have great links to research as well as papers written by experts in the field.

Good luck!

[Guest Coopsmom]

Rachel,

I just wanted to add that there is a person who posts on here named George who also has a double copy of DQ-1 and it seems as though he has done a lot of research about it.  He would probably be a great resource for you.  Maybe if he sees this he'll post!

Good luck in your research.  I find myself on the computer all the time know.  I just figure that the more I know, the more I'll be able to help my kids.  I have learned so much and feel as though I know more than her drs. do!  Maybe I'm just being arrogant though!! 

Take care,

Shannon

<{POST_SNAPBACK}>

Hi Shannon,

You seem to know a lot about Celiac, so I was wondering if I could "pick your brain" a little? My ds was recently diagnosed w/ celiac disease at 18 mos old. I have read in this bulletin that babies can be misdiagnosed? He has made a 180 degree turn around since being gluten-free however, so we will maintain that diet regardless. But I have also read to have him rechecked every year?

Also, my mother shows ALL of the symptoms of Celiac and was actually quite relieved when I explained to her what my ds has, as she thought this may be the answer to her problems. However, she tested negative. Is there something else she could have that causes a gluten sensitivity with the same symptoms as celiac disease? I know I am asking alot, maybe other readers may have some knowledge they could share also. I need to educate myself much more on all of this. I have read the books, is there anything else you can recommend that I can look up on line, etc? Thank you so much!!!

[Rachel--24]

Hi Shannon,

You seem to know a lot about Celiac, so I was wondering if I could "pick your brain" a little?  My ds was recently diagnosed w/ celiac disease at 18 mos old.  I have read in this bulletin that babies can be misdiagnosed?  He has made a 180 degree turn around since being gluten-free however, so we will maintain that diet regardless.  But I have also read to have him rechecked every year? 

Also, my mother shows ALL of the symptoms of Celiac and was actually quite relieved when I explained to her what my ds has, as she thought this may be the answer to her problems.  However, she tested negative.  Is there something else she could have that causes a gluten sensitivity with the same symptoms as celiac disease?  I know I am asking alot, maybe other readers may have some knowledge they could share also.  I need to educate myself much more on all of this.  I have read the books, is there anything else you can recommend that I can look up on line, etc?  Thank you so much!!!

<{POST_SNAPBACK}>

How was your baby diagnosed? I would think if tests were positive and the diet change showed a turnaround then he is undoubtedly Celiac. Thats not going to change ever...its lifelong. How will he be rechecked each year? If he is maintaining a gluten-free diet he should test negative from now on.

There are lots of reasons why your mother could have tested neg. even with symptoms. She could not of had enough gluten in her diet at the time of testing. The doctors may have not run all the proper tests. She could be IgA deficient. The tests arent 100% accurate. Some people test neg in bloodwork but positive in biopsy or vice versa. She could also not be Celiac but gluten sensitive which is no less severe. Maybe gene testing would be helpful. In my opinion its not very expensive. Enterolab does gene testing for $150. If she has a celiac gene and reacts to gluten then she is probably Celiac but maybe hasnt suffered enough damage to show positive in tests. They also test for the gluten sensitivity genes. It might be useful to you.

[e&j0304]

Hi Shannon,

You seem to know a lot about Celiac, so I was wondering if I could "pick your brain" a little?  My ds was recently diagnosed w/ celiac disease at 18 mos old.  I have read in this bulletin that babies can be misdiagnosed?  He has made a 180 degree turn around since being gluten-free however, so we will maintain that diet regardless.  But I have also read to have him rechecked every year? 

Also, my mother shows ALL of the symptoms of Celiac and was actually quite relieved when I explained to her what my ds has, as she thought this may be the answer to her problems.  However, she tested negative.  Is there something else she could have that causes a gluten sensitivity with the same symptoms as celiac disease?  I know I am asking alot, maybe other readers may have some knowledge they could share also.  I need to educate myself much more on all of this.  I have read the books, is there anything else you can recommend that I can look up on line, etc?  Thank you so much!!!

<{POST_SNAPBACK}>

I think Rachel pretty much answered that for you! She knows a ton and I am actually just starting to get more educated about all of this. My daughter has only been gluten-free for about 3 months. My daughter was mainly diagnosed through a positive dietary challenge since her blood tests came back negative. I then tested her through enterolab and found that she is infact gluten sensitive. She too made a 180 turnaround and I wouldn't dream of feeding her gluten ever again. I know the diet can seem inconvenient at times, but I am willing to put up with that to have my baby back. If your little guy had a pos. celiac disease dianosis and has done well on the diet, I would not ever feed him gluten again. This is a lifelong diet change. There are so many longterm health complications that can affeet a person who is gluten intolerant and continues to eat gluten. I would recommend reading Dangerous Grains. There is also endless information online. Just doing a google search will give you so much information. If you go to the Braintalk celiac board, they have a "Gluten File" that has lots of info on the autoimmune diseases that can be caused by a gluten intolerant person eating gluten.

I agree with what Rachel said about your mom's negative test. Above all else, these tests are not 100% accurate. I have heard of many people who have had neg. blood tests, but were helped tremendously on the diet. She should give it a try. Like many others, Ella also did not have the full panal run on her and since what they did run was neg. they would not do a biopsy. With her obvious malnutritin, I often wonder if a biopsy would have shown blunted villi. Oh well, I guess we'll never know that now. The bottom line is that if your mom didn't have all the tests run then maybe she should do that, or just try the diet. If she feels better that's all she really needs.

Good luck to you, your little boy and your mom. We are all trying to go gluten-free at our house to hopefully all the the healthiest we can be.