Nursing Infant Won't Sleep.

[gary'sgirl]

Hey there. I was hoping that some of you could give me some advice about my 10 month old son. He started having problems at six weeks old.

Some of the symptoms were colic, acid reflux, not sleeping well (he would only nap for 10 min at a time and at night he would wake every hour to half hour), bad smelling bowel movements and gas, blood in bowel movements. All of this also happened with my second daughter (I have three kids) and we have been going to doctors for this stuff since she was 5 months old (that's when I noticed the blood in her stool - the blood is hard to spot).

Anyway, because of all their problems that the doctors could not diagnose I started doing my own research and found that they had a lot of the symptoms of Celiac, then realized that I had many symptoms of Celiac Disease myself. The Doctors of course didn't think that my kid could have celiac, because their weight falled within the normal ranges and they allways were on the tall side (but all the rest of their symptoms lined up), and they said that it usually only shows up in infants that have started to eat solids. Well, we had no other possibilities so I decided to pursue finding out if I had Celiac. Sure enough, I was diagnosed in November and the Pediatricians listened a little better. We did the blood test on both my daughters, but they came back negative - I believe in part because I have never been able to get them to eat much gluten containing foods and could only get them to eat very little for the three weeks before we did the tests.

I took them off gluten anyway and they are both doing so much better.

Okay, so my question is about my son who is nursing - almost completely. He got a little better after I went off of gluten, but not a lot. Now he seems to be having a really hard time sleeping again and I'm not sure what to do. Not to mention there is still blood in his bowel movements. So, are there any others out there that have had the same thing happen and figured something out? I'm desperate for him to start sleeping better, and the blood thing just keeps me a little worried.

[melblondin]

Sorry to hear about your little one It sounds a lot like a milk allergy/sensitivity to me, which could be a separate issue from the celiac but it sounds like they're often times related. I would try cutting milk products from your diet or trying Similac Alimentum formula. It's hypoallergenic and made for kids with food allergies. We just realized (as in this past week) that our 9 month old has a milk allergy. I was nursing him exclusively and thought I would try the formula just to see what would happen because his reflux was like nothing I've ever seen before and it has all but disappeared completely, his thrush is gone, his skin rash is cleared, and he's no longer constipated. He is much happier and I'm hoping that he'll start to gain weight now. I just wish it hadn't taken me 9 months to figure it out. I also suspect celiac for him, but I'll cross that bridge a little later. For now it's no gluten (I'm trying to see if his clay colored, greasy stools will clear up) and no dairy. Good luck; keep us posted!

[nicolebeth]

I definitely recommend trying other options before switching to formula. Breastfeeding can be protective against the onset of celiac disease, among many other things. Open Original Shared Link Your baby is six weeks old; weaning to formula at this point might be more stressful. Obviously, the hypoallergenic formula does work best for some families (I'm glad it worked for melblondin!), so you have to weigh what works best for your family.

I do know many people whose infants had blood in their stool and who were able to stop it by going off of dairy (and possibly soy as well). Dairy does take a bit longer to clear from the system than other potential allergens. Don't give up--again, I know many moms who had great results doing this! (And, in a few cases, the children weren't even dairy-allergic, just dairy-sensitive as an infants.) But, I recommend having the doctor look at your baby as well. There could be another reason for the blood, and you want to make sure what it might be.

Good luck to you! I'm glad to hear that a proper celiac diagnosis made you and your other children feel much better! (We're actually waiting on an appointment for our son to see a pediatric GI right now--a few more weeks to go.)

[weluvgators]

We have some similar experiences with our kids. Our second child had the most obvious problems as a baby, and she is the reason that we went gluten free. It is sometimes frustrating because she has NEVER been able to eat gluten directly. So the conventional diagnostic tools are extremely limited, even if ignoring how poorly the current diagnostic tools work for young children. We were already working to be dairy free because of her older sister. And we have ended up on a dairy, gluten and soy free diet. Our pediatric gastroenterologist told us that in many of her celiac patients that the ability to digest dairy is often a preliminary sign. I think she was trying to offer us hope that we may be able to reintroduce dairy at some point, but our experiences indicate that we have our own dairy issues.

Anyway, my point is that we went gluten free for our second child when she was just over one year old. She had been getting gluten mainly from my breastmilk, and I had started reducing my gluten intake months earlier. We worked on figuring the gluten free diet over the next two years, and I thought I was doing it well. BUT, we were still having so many lingering issues - sleep being a primary problem and symptom that *something* still was not right. I kept removing additional foods, but I also felt like I was going in circles. . . it probably doesn't help that it is hard to get good sleep when you get to take care of a waking child all night long! So, we finally decided to do Enterolab, as it seemed to be a reasonable option. I was shocked to learn that her stool antibody levels were STILL extremely high. So, we really buckled down and dug into the cross contamination issues a lot more. That has been an amazing journey, and we have made some fascinating discoveries in that process. We eventually went almost entirely grain free in an effort to make more improvements. We have started adding a few, select, carefully sourced and washed WHOLE grains to our diets again, and we have started grinding them ourselves to ensure the cleanest grain products possible. So in our discovery process we ended up eliminating quite a few foods. As our children have gotten older, it has gotten a bit easier to manage. I think managing this with very young children is extremely hard! Big hugs!!

[melblondin]

Let me just add that I totally agree with NicoleBeth in that if you can eliminate the dairy from your diet and keep nursing that would be ideal. We just bought a little bit of formula as a quick test for our son to see if that's what the problem was, since we knew it would take time for the dairy to leave my system, but then we all got very sick and my body didn't produce as much milk with the pump, so I'm almost all dried up already, which I'm surprised by but I think it's okay since he took so well to the formula and is getting closer to the 1 year mark. The sudden weaning is a little hard for me (it seems to be harder for me than for him, which I guess is good), but we're doing alright and I'm just happy to see him keeping his food down and being a happy baby. Not to mention nursing is wayyyyyy cheaper! Hope he feels better soon.

[katerzz]

My son (21 months) was just diagnosed with celiac. His blood test was negative, but his biopsy was positive. I had to fight to get the biopsy done and not only was he positive for celiac he had a lot of ulcers in his small bowel. Now, daddy is getting tested (its on his side of the family) my 3 year old daughter they've decided to wait since she shows no symptoms at all. I am pregnant (due next month) and they said first sign of ANY problems with the baby I'm to bring her into the GI doc to get tested. My son suffered for 19 months of his life and I am glad they don't want my new daughter to do the same.

I was told my son had a milk allergy too.. boy that was wrong. I only imagine what our lives would have been like if my son wasnt so sick for the last 2 years. I should have pushed harder and I think you should too. Have him referred to an allergist, get the skin tests. Then go from there. If that is negative go to a pediatric GI doc. Pediatricians dont know enough about this to diagnose it and they think the blood test is a sure sign of the child being free and clear.

[gary'sgirl]

Tank you all for the replies so far. Just to clarify, my son is now 10 months, but the hight of all the problems started when he was six weeks old.

To answer the dairy thing, we did go off of dairy for several months (and soy too), but nothing changed at all. I did take my daughter to a GI doc and we had to wait so long to see him that we were in the middle of all the problems with my son by that point. He was the one that had my daughter tested (blood test) and with the negative results, basically said that he just thought she was constipated and other than telling us to put her on a laxative he had nothing more to offer us and he had nothing to say about our son who was having the same problems (I guess because he didn't really think my daughter had any problems.?). So that is where we were left. I decided to make our whole family gluten free and as I said before my girls both improved, my son did a little, but is still having problems and it seems to be getting a little worse again.

Argh!!! All this is exausting. Especially, because I am not doing much better after the diet change either (I have been gluten-free for almost six months now).

Again, if you have any ideas please pass along your knowledge.

[gary'sgirl]

Oh yeah, we did go to an allergist too with no results.

[gary'sgirl]

We have some similar experiences with our kids. Our second child had the most obvious problems as a baby, and she is the reason that we went gluten free. It is sometimes frustrating because she has NEVER been able to eat gluten directly. So the conventional diagnostic tools are extremely limited, even if ignoring how poorly the current diagnostic tools work for young children. We were already working to be dairy free because of her older sister. And we have ended up on a dairy, gluten and soy free diet. Our pediatric gastroenterologist told us that in many of her celiac patients that the ability to digest dairy is often a preliminary sign. I think she was trying to offer us hope that we may be able to reintroduce dairy at some point, but our experiences indicate that we have our own dairy issues.

Anyway, my point is that we went gluten free for our second child when she was just over one year old. She had been getting gluten mainly from my breastmilk, and I had started reducing my gluten intake months earlier. We worked on figuring the gluten free diet over the next two years, and I thought I was doing it well. BUT, we were still having so many lingering issues - sleep being a primary problem and symptom that *something* still was not right. I kept removing additional foods, but I also felt like I was going in circles. . . it probably doesn't help that it is hard to get good sleep when you get to take care of a waking child all night long! So, we finally decided to do Enterolab, as it seemed to be a reasonable option. I was shocked to learn that her stool antibody levels were STILL extremely high. So, we really buckled down and dug into the cross contamination issues a lot more. That has been an amazing journey, and we have made some fascinating discoveries in that process. We eventually went almost entirely grain free in an effort to make more improvements. We have started adding a few, select, carefully sourced and washed WHOLE grains to our diets again, and we have started grinding them ourselves to ensure the cleanest grain products possible. So in our discovery process we ended up eliminating quite a few foods. As our children have gotten older, it has gotten a bit easier to manage. I think managing this with very young children is extremely hard! Big hugs!!

Can I pick your brain? What did you learn about grains? Please share what you have found out.

[melblondin]

My son (21 months) was just diagnosed with celiac. His blood test was negative, but his biopsy was positive. I had to fight to get the biopsy done and not only was he positive for celiac he had a lot of ulcers in his small bowel. Now, daddy is getting tested (its on his side of the family) my 3 year old daughter they've decided to wait since she shows no symptoms at all. I am pregnant (due next month) and they said first sign of ANY problems with the baby I'm to bring her into the GI doc to get tested. My son suffered for 19 months of his life and I am glad they don't want my new daughter to do the same.

I was told my son had a milk allergy too.. boy that was wrong. I only imagine what our lives would have been like if my son wasnt so sick for the last 2 years. I should have pushed harder and I think you should too. Have him referred to an allergist, get the skin tests. Then go from there. If that is negative go to a pediatric GI doc. Pediatricians dont know enough about this to diagnose it and they think the blood test is a sure sign of the child being free and clear.

katerzz, if you don't mind me asking, can you share what some of the symptoms of your 19 month old were before diagnosis? I'm wondering if celiac is the underlying issue and why my son wasn't tolerating the milk or if it's simply a milk sensitivity with nothing more going on. Just trying to figure it all out. Thanks!

[weluvgators]

We have struggled to understand what a *truly* gluten free diet is for our family. We seem to have some exquisitely gluten sensitive tendencies that can be quite difficult to manage. We took our entire home gluten free when we started on this venture because it was too hard to do it otherwise with such young children. Since then, I have come to recognize that *I* am so dang sensitive that *I* want nothing but a gluten free home to call my own. We have implemented strict protocols to maintain the safety of our gluten free home.

But, we *still* struggled with lingering issues. My daughter has been such a blessing, as without her I may have never come to realize the implications gluten has on my own health. But there are times when I just *know* that she has gotten into gluten. She has such obvious symptoms, and I will be wandering around asking myself, "Where did the gluten come from?" I feel very blessed to have had her help me navigate all of this! Her younger brother also appears to be very gluten sensitive. We continued to have those lingering, nagging issues of gluten exposure when we continued trying to eat grains. We also found that we were able to identify other lingering gluten exposures in some of our processed foods, most notably our "milk" that I was drinking every day . . . and had started giving to the baby who then developed the "chronic cold". We ended up getting some gluten home test kits and were surprised by our discoveries. I got so sick and tired of wondering about grains, and more times than not we would end up symptomatic when we tried to eat them. So they become a "treat", eventually just falling out of favor - in part because we were doing better without them and in part because it is exhausting trying to source and process truly gluten free grains on my own. Meanwhile, I tried to do more research to understand *what* the issue was. I live in the middle of farm country, and I see how the grains are handled. It takes dedicated farmers to produce truly gluten free grains, and there are so many opportunities for potential cross contamination. I really enjoyed this article that I found on Page 3 of a newsletter published by Nashville Celiacs: Open Original Shared Link . It certainly seems that different gluten sensitive folks have varying "tolerances" for gluten contamination, and our family seems to have very little capacity to handle these "incidental" exposures.

I have been trying for some time now to figure out a way to "improve" our tolerance, but nothing is coming up at all . . . not even from the celiac specialists that we have consulted. There are some things like addressing nutritional deficiencies that may help, but they generally say that there is nothing to do to improve our tolerance. I keep holding out hope that I will figure out *something*. Actually, the conventional medical specialists seem to indicate that there is nothing we can do, while some of the alternative providers indicate that we would be wise to follow through with some due diligence items like bacteria, parasite and nutritional testing. But even all of *that* takes time to figure out - and all of that testing adds up REAL quick when you are managing a family!

On the other hand, I also recognize that the many protocols that we have implemented to alleviate our symptoms of probable gluten exposure also eliminate a fair number of other variables too (our strategies also seem to have reduced sugars, chemicals, and germ exposure too). We are regimented with hand washing protocols and choose the spaces that we will visit with extreme care. We have also had a lot of focus in trying to support ourselves as we heal from the damage sustained while we were eating gluten. I think it can sometimes be forgotten in those that discover their gluten intolerance that the damage needs time and adequate support to heal. It took me a long time to realize that I needed to cut myself some slack and get more rest if *I* wanted to get better too. I can get so caught up in trying to help my kids recover that I tend to overlook that I need recovery support as well!

I hope it helps. I know how hard this can be, especially when you are trying to manage a family through it. And, I certainly take solace in the fact that my family *truly* understands what I am talking about when it comes to gluten! We have found having multiple family members to help us expedite in our troubleshooting!! But, again, it takes time to get into the swing of things.

But, it is important not to get so caught up in gluten that you may overlook some other factors that may be sources of discomfort! We ditched chemicals and sugars, finding that they were not supportive of our healing. We have implemented all of the usual "allergy" strategies as well, in an effort to make sure that the dust mites and molds are not contributing factors. We tested our water to make sure that we were not getting contamination from that important source of health and well being. What has helped me most is to try and pick what it is that I want to do! I want to get good sleep and outdoor time with the kids. I also want to make awesome food and snacks part of our routine - so that I can do it without thinking. We keep a lot of produce in the house, and try to prepare snacks ourselves to have on hand so that we are not tempted by the convenience of a store bought package. One of the things I did when we were first making the transition was to keep washed and cut veggies in the refrigerator, ready for snacking or cooking. We have also used a lot of sweet potatoes, but we prefer the ones that we buy by the bushel from a farmer down the road. They come straight out of the ground and get nothing applied to them. They also keep for much longer than the ones you get at the store. Another strategy that our super duper silly girl enjoys are epsom salt baths. We started those for constipation issues, and they are a common request if she gets glutened - she also generally enjoys them, but they are a first request if she is feeling like she has been exposed. Here is a bit on epsom salts: Open Original Shared Link . I also enjoy epsom salt baths for myself.

So, we have tried lots of things and keep the ones that work. Essential oils are another treat that I enjoy for myself. I use ones that are safe for children and find that they can help immensely too! Have you tried working in some extra nap times for yourself while someone else watches the children? I know how that is so much easier said than done, but it may help as well. I hope that you get some restful sleep soon! And my daughter was also a non-stop nurser . . . it IS exhausting!! And I would keep working with doctors to see if they can help you identify the cause of the blood in your son's stool. Our pediatrician is somewhat limited by her lack of celiac knowledge, but she is helping us navigate our way to specialists that seem to have a better understanding. I actually tracked down the pediatric gastroenterologist that I wanted to see, and our pediatrician did the necessary referral (the specialist required the referral, not my insurance). The gastroenterologist has helped me find the celiac and gluten intolerance knowledgeable allergist and dermatologist that we have also needed for consult. And, really, I haven't figured out so much of this myself yet!!

[katerzz]

-Frequent Stools (6-8 a day)

-Loose, sometimes watery stools. Never hard or normal.

-Stools smelled very bad, much different than daughter.

-Really stinky breath, like it smelled like his stools.

-Very Clingy

-Dry Skin (diagnosed as "eczema by pediatrician, doubts now)

-Gurbly Tummy You could literally hear his tummy constantly gurble and you could feel it rumble.

-He would wake up in the middle of the night crying, pass gas then settle back to sleep. This happened all night.

-Crying for no apparent reason, often.

-When he was an infant he would arch his back a LOT while screaming like he was in pain.

-Constantly wanting a snack like a cracker.

-He would pass gas a LOT more than my daughter ever did.

-Always grumpy and irritable.

-Extremely tired all the time.

The pediatrician told us for months that it was dairy allergy, so we put him on Soy. The GI Doc told us soy is not the best choice at all so then we were at a loss. Now my son will only drink soy, but he can eat dairy no problem. 6 months after really expressing concerns he finally ordered blood tests. I told him about celiac in the family and the blood/stool test came back negative. It took 6 months to get the pediatrician to send us to the a GI doc, that doctor was shocked he hadn't ordered any allergy tests. The allergist was too. The allergist didn't find anything and had us go back to diary. At that point the pediatrician told us it was probably "toddler diarrhea" that kids out grow. We took it upon ourselves to go back to the GI doctor who agreed doing a biopsy was the best choice. That morning he had no expectations of finding anything and came back with a swollen, irritated tummy full of bacteria and 9 ulcers in the upper small bowel. He was shocked. The biopsy for celiac came back positive and we are just waiting on the genetics test.

The test is not that big of a deal in my opinion. If you have any doubts then tell the GI doctor you want a biopsy done to test for celiacs. Thank god we fought for it. Also remember gluten-free diets before, or during any tests will really mess up the results.

[katerzz]

Oh, also my son was never "under weight" by any means. He has been 95% since his 2 month checkup. If there is any blood in stool then your doctor should be ordering tests to find out what's causing it. Demand it, these are your babies you have to worry about.

[Terrified Mom]

I heard that mess about "toddler diarrhea", too. Dangit, if it ain't normal SOMETHING is causing it, is what I say! I am not a symptom treating kind of patient/parent. I'm a CAUSE SEEKER. Eliminate the source and you eliminate the need for drugs, right?

Your LO's symptoms definitely sound like classic dairy issues. Are you sure you have eliminated 100% of all dairy? A high percentage of kids with milk protein intolerance are also intolerant of soy. It's actually called MSPI, for Milk-Soy Protein Intolerance. The proteins are very similar. It is very difficult to eliminate all dairy, including incidental dairy, because it is everywhere, just like gluten. My son has been dairy free for 2 years, and I just found out 2 weeks ago that McDonald's french fries (we didn't go often, but sometimes it was a nice treat) have casein in them.

[gary'sgirl]

We have struggled to understand what a *truly* gluten free diet is for our family. We seem to have some exquisitely gluten sensitive tendencies that can be quite difficult to manage. We took our entire home gluten free when we started on this venture because it was too hard to do it otherwise with such young children. Since then, I have come to recognize that *I* am so dang sensitive that *I* want nothing but a gluten free home to call my own. We have implemented strict protocols to maintain the safety of our gluten free home.

But, we *still* struggled with lingering issues. My daughter has been such a blessing, as without her I may have never come to realize the implications gluten has on my own health. But there are times when I just *know* that she has gotten into gluten. She has such obvious symptoms, and I will be wandering around asking myself, "Where did the gluten come from?" I feel very blessed to have had her help me navigate all of this! Her younger brother also appears to be very gluten sensitive. We continued to have those lingering, nagging issues of gluten exposure when we continued trying to eat grains. We also found that we were able to identify other lingering gluten exposures in some of our processed foods, most notably our "milk" that I was drinking every day . . . and had started giving to the baby who then developed the "chronic cold". We ended up getting some gluten home test kits and were surprised by our discoveries. I got so sick and tired of wondering about grains, and more times than not we would end up symptomatic when we tried to eat them. So they become a "treat", eventually just falling out of favor - in part because we were doing better without them and in part because it is exhausting trying to source and process truly gluten free grains on my own. Meanwhile, I tried to do more research to understand *what* the issue was. I live in the middle of farm country, and I see how the grains are handled. It takes dedicated farmers to produce truly gluten free grains, and there are so many opportunities for potential cross contamination. I really enjoyed this article that I found on Page 3 of a newsletter published by Nashville Celiacs: Open Original Shared Link . It certainly seems that different gluten sensitive folks have varying "tolerances" for gluten contamination, and our family seems to have very little capacity to handle these "incidental" exposures.

I have been trying for some time now to figure out a way to "improve" our tolerance, but nothing is coming up at all . . . not even from the celiac specialists that we have consulted. There are some things like addressing nutritional deficiencies that may help, but they generally say that there is nothing to do to improve our tolerance. I keep holding out hope that I will figure out *something*. Actually, the conventional medical specialists seem to indicate that there is nothing we can do, while some of the alternative providers indicate that we would be wise to follow through with some due diligence items like bacteria, parasite and nutritional testing. But even all of *that* takes time to figure out - and all of that testing adds up REAL quick when you are managing a family!

On the other hand, I also recognize that the many protocols that we have implemented to alleviate our symptoms of probable gluten exposure also eliminate a fair number of other variables too (our strategies also seem to have reduced sugars, chemicals, and germ exposure too). We are regimented with hand washing protocols and choose the spaces that we will visit with extreme care. We have also had a lot of focus in trying to support ourselves as we heal from the damage sustained while we were eating gluten. I think it can sometimes be forgotten in those that discover their gluten intolerance that the damage needs time and adequate support to heal. It took me a long time to realize that I needed to cut myself some slack and get more rest if *I* wanted to get better too. I can get so caught up in trying to help my kids recover that I tend to overlook that I need recovery support as well!

I hope it helps. I know how hard this can be, especially when you are trying to manage a family through it. And, I certainly take solace in the fact that my family *truly* understands what I am talking about when it comes to gluten! We have found having multiple family members to help us expedite in our troubleshooting!! But, again, it takes time to get into the swing of things.

But, it is important not to get so caught up in gluten that you may overlook some other factors that may be sources of discomfort! We ditched chemicals and sugars, finding that they were not supportive of our healing. We have implemented all of the usual "allergy" strategies as well, in an effort to make sure that the dust mites and molds are not contributing factors. We tested our water to make sure that we were not getting contamination from that important source of health and well being. What has helped me most is to try and pick what it is that I want to do! I want to get good sleep and outdoor time with the kids. I also want to make awesome food and snacks part of our routine - so that I can do it without thinking. We keep a lot of produce in the house, and try to prepare snacks ourselves to have on hand so that we are not tempted by the convenience of a store bought package. One of the things I did when we were first making the transition was to keep washed and cut veggies in the refrigerator, ready for snacking or cooking. We have also used a lot of sweet potatoes, but we prefer the ones that we buy by the bushel from a farmer down the road. They come straight out of the ground and get nothing applied to them. They also keep for much longer than the ones you get at the store. Another strategy that our super duper silly girl enjoys are epsom salt baths. We started those for constipation issues, and they are a common request if she gets glutened - she also generally enjoys them, but they are a first request if she is feeling like she has been exposed. Here is a bit on epsom salts: Open Original Shared Link . I also enjoy epsom salt baths for myself.

So, we have tried lots of things and keep the ones that work. Essential oils are another treat that I enjoy for myself. I use ones that are safe for children and find that they can help immensely too! Have you tried working in some extra nap times for yourself while someone else watches the children? I know how that is so much easier said than done, but it may help as well. I hope that you get some restful sleep soon! And my daughter was also a non-stop nurser . . . it IS exhausting!! And I would keep working with doctors to see if they can help you identify the cause of the blood in your son's stool. Our pediatrician is somewhat limited by her lack of celiac knowledge, but she is helping us navigate our way to specialists that seem to have a better understanding. I actually tracked down the pediatric gastroenterologist that I wanted to see, and our pediatrician did the necessary referral (the specialist required the referral, not my insurance). The gastroenterologist has helped me find the celiac and gluten intolerance knowledgeable allergist and dermatologist that we have also needed for consult. And, really, I haven't figured out so much of this myself yet!!

Thank you for sharing what you have been trying and implementing in your life in an effort to truly be well. I too have found that the cross contamination is a huge issue and when I buy a product other than fresh produce, I call the company and quiz them about their practices and where they get their products from.

Isn't it such a challenge? I am also continually seeking doctors that have a better knowledge of Celiac. I think I really need a new pediatrician. The one I have is willing to work with me, but she knows very little about celiac - especially in kids.

[gary'sgirl]

-Frequent Stools (6-8 a day)

-Loose, sometimes watery stools. Never hard or normal.

-Stools smelled very bad, much different than daughter.

-Really stinky breath, like it smelled like his stools.

-Very Clingy

-Dry Skin (diagnosed as "eczema by pediatrician, doubts now)

-Gurbly Tummy You could literally hear his tummy constantly gurble and you could feel it rumble.

-He would wake up in the middle of the night crying, pass gas then settle back to sleep. This happened all night.

-Crying for no apparent reason, often.

-When he was an infant he would arch his back a LOT while screaming like he was in pain.

-Constantly wanting a snack like a cracker.

-He would pass gas a LOT more than my daughter ever did.

-Always grumpy and irritable.

-Extremely tired all the time.

The pediatrician told us for months that it was dairy allergy, so we put him on Soy. The GI Doc told us soy is not the best choice at all so then we were at a loss. Now my son will only drink soy, but he can eat dairy no problem. 6 months after really expressing concerns he finally ordered blood tests. I told him about celiac in the family and the blood/stool test came back negative. It took 6 months to get the pediatrician to send us to the a GI doc, that doctor was shocked he hadn't ordered any allergy tests. The allergist was too. The allergist didn't find anything and had us go back to diary. At that point the pediatrician told us it was probably "toddler diarrhea" that kids out grow. We took it upon ourselves to go back to the GI doctor who agreed doing a biopsy was the best choice. That morning he had no expectations of finding anything and came back with a swollen, irritated tummy full of bacteria and 9 ulcers in the upper small bowel. He was shocked. The biopsy for celiac came back positive and we are just waiting on the genetics test.

The test is not that big of a deal in my opinion. If you have any doubts then tell the GI doctor you want a biopsy done to test for celiacs. Thank god we fought for it. Also remember gluten-free diets before, or during any tests will really mess up the results.

My second daughter's symptoms where pretty much exactly the same as what you listed for your son, with the exception of the frequency of the stools (she would go for 4-6 days with out a BM and then have many BM's over the next day or two that were all very loose and sometimes watery). I wish we had done the biopsy, but at the time I didn't know much about the different tests. I just knew that the blood tests could come out with false negatives. So, after she had the negative blood test I took her off of gluten anyway, because I was diagnosed with Celiac a few months before. I was pretty sure it was gluten, because previously after all her problems had started I took her (and myself - she was nursing) off of all the 8 most common allergens including dairy and soy for over six months. I was very carefull and didn't buy hardly any packaged products.

All that to say my experience with my son has been very similar. I did take dairy and soy out of my diet for a little over two months before I tried taking gluten out. He showed no improvement at all, and I do believe that I truly was not getting any little bits in anything.

Now I think - like you said - it would have been helpful to have a biopsy on him as well, but I had been off of gluten for too long.

Thank you for sharing all that info.

[gary'sgirl]

Terrified Mom, I do think I had 100% eliminated dairy and soy (as much as is humanly possible anyway - i don't know if some how someone who had touch dairy/soy had then touch him... etc...), but I am wondering if I should take it back out again now that we have been off gluten for a while. I had assumed that because we had no change at all before that it was not as all the problem, but maybe it is irratating the healing process. We haven't eaten out at all in six months - only foods from home. And I second the CAUSE SEEKING!

Katerzz, I agree with the demanding tests. The docs did do some, but I don't know of any others to do. Do you have any ideas of other test to do for these symptoms? If you do I could ask the doctor if we have done them yet. - I don't remember all that has been tested for.

THANKS SO MUCH EVERYONE!!!

[katerzz]

I'm not sure all the blood tests they did, but there was a bunch. They also did stool samples. He was skin tested for 14 allergens and then had the biopsy done. I plan to get copies of all of the records/tests once we are done (still waiting on the genetics test) and will post as soon as I can get a list of everything that they tested for.