Toddler W/ Possible Gluten Sensitivity

[missybean]

Hello, it has been a while since I have logged on here. It was when I was pregnant with my daughter I discovered i had many food intolerance/sensitivies....gluten was a major issue for me, all celiac tests were negative of course. Anyways I have since been diagnosed with mastocytosis and gluten just happens to be one of my triggers. Now getting to my topic, my 22 month old daughter has rarely slept through the night, some will say that is normal. Well I'm so sleep deprived waking up with her anywhere from 2 to 6 times a night. When she wakes up she cries and I can tell the difference between a pain cry and just needing to be comforted. The past 2 months it seems like she is in pain and I hear her coughing and then the crying starts, when I pick her up out of the crib she burps and always wants something to drink and for about 2 weeks she rused to be laid flat in her crib and we slept in the reclining chair upright until started reflux meds. Prior to this she also had awful smelling gas, has had diarrhea on and off for months. Since removing dairy and soy her gas is almost non existant. Her first year of life she had bad relux it would projectile and also come out of her nose, she would choke in her sleep. JUst awful! She was also constipated bad the first 14 months of her life and the GI specialist put her on miralax and that was awful gave her such bad diarrhea we had to stop and since then her stools have been pretty normal except she has diarrhea 2 to 3 times a week and I also see slimy,mucos stools 2 to 3 times a week.

The zantac they prescribed for us was almost impossible to get her to take, tastes awful after a week of that I was giving her pepto tablets for babies(calcuim carbonate) and it helped a bit. Then last week I noticed her breath smelled like bleach! My pharmacist gave me a scientific explanation saying it's the acid coming back up basically, so we saw the doctor again and now we are trying prilosec and sometimes I think it works and other times she still is waking up in pain. It is super expensive too. NOw I'm thinking maybe it is gluten. She is normal weight and height and pretty happy she is just a clingy child. So I'm wondering do any of you parents have similar stories? How long will it take to get gluten out of her system? 3 weeks? I'm so desperate for sleep.

Missybean

[M0Mto3]

Her reflux/constipation issues sound similar to my son's. I ended up putting him on a probiotic every day and that cured him of his constipation. He was bouncing back and forth between constipation and diarrhea when on Miralax, also. When he was constipated he would not sleep well and was miserable all around. As far as we know he does not have issues with gluten (his sister does). I started him on the probiotic 1 1/2 years ago and he hasn't had issues with constipation since.

That isn't to say that your daughter doesn't have issues with gluten, it may be worth exploring further.

My daughter's issues with gluten were trouble gaining weight and frequent loose bms.

[salexander421]

Our youngest has never had weight or height issues. She had severe reflux from day one. I would nurse her and within minutes after she would practically vomit all over me and her. Despite this though she always seemed to gain in weight and height. We didn't do any reflux meds because I feel like they're not good and they don't deal with whatever is causing the problem, they just mask the problem. She started having green mucousy bowl movements with some blood when she was about 2 months. Took her off dairy and she improved a little. Was still having problems so we did an elimination diet, figured out all her problem foods and she was a normal happy baby. Did a gluten challenge and she was constipated, clingy, crabby, stopped sleeping good...she had started sleeping 12 hours straight before the gluten challenge. She started getting a nasty rash on her bottom that we're pretty sure is DH. Our oldest is also gluten intolerant and her problem has always been constipation. She has only had diarrhea a few times. Our youngest started struggling with diarrhea after we stopped the gluten challenge and now if she accidentally gets glutened she gets D.

If I were you I would either go ahead and get her tested and then take her off gluten and see what happens or just skip the testing and take her gluten free right away. Just know that once you take her gluten free if you ever decide to test then you will have to put her back on gluten for at least 3 months prior to testing and this can be really miserable for a gluten intolerant person. I'm in no way a medical professional but to me it does sound like it could be a gluten issue.

We have been able to add most removed foods back into our youngest daughter's diet except for gluten and dairy and since I also have issues with both of these foods and I'm 29 I don't anticipate her ever tolerating these foods.

Hope this helps!

[missybean]

I'm not sure if I wanna put her through the testing. Even the blood test. She is only 22 months and I can't even imagine trying to get a blood draw. I have a follow up in one more week and I will talk to the doc about it. I started her on some good probiotics 3 weeks ago. I really don't like giving her the meds either, and you are absoletly right about masking the real cause but in the same sence I don't want her suffering and having that acid damage her body anymore. I will probably just stop gluten and then after a few weeks try no meds and see what happens. Thanks for sharing. I was hoping someone would tell me their childs experience so I could compare. Thanks again

Missybean

[salexander421]

I'm not sure if I wanna put her through the testing. Even the blood test. She is only 22 months and I can't even imagine trying to get a blood draw. I have a follow up in one more week and I will talk to the doc about it. I started her on some good probiotics 3 weeks ago. I really don't like giving her the meds either, and you are absoletly right about masking the real cause but in the same sence I don't want her suffering and having that acid damage her body anymore. I will probably just stop gluten and then after a few weeks try no meds and see what happens. Thanks for sharing. I was hoping someone would tell me their childs experience so I could compare. Thanks again

Missybean

You sound like you have a good plan. Testing at that age can be really unreliable anyways. Hope you figure out what's causing her symptoms and get her to feeling better soon!

[Roda]

My youngest son had horrible reflux when he was a baby. He did the same thing, he would projectile vomit everywhere. He once refluxed while he was laying down, and thank the heavens that I was right there because he had milk bubbling out of his nose and was starting to turn blue. It's really scary and I sympathize with you. He was put on zantac at 2.5 months because he would scream all day and night. He still had the bad reflux but at least it helped neutralize the acid and he wasn't screaming all the time. He was breastfed and I found some trigger foods that I eliminated in my diet: dairy and spicy things and I also eliminated oats, rice and tree nuts because all of those caused either hives or a rash on his head.

He was 2.5 months old before his belly button stump dried up and fell off. This was with much help and we almost had to see a surgeon to have it removed. He was plagued with horrible rhinosinusitis and was on so many antibiotics. He developed thrush, yeast infections in his diaper region and yeast overgrowth in his bowel. He had to take meds for the yeast and I started giving him probiotics. His skin would look scalded and raw on his bottom from the acidity from his stool. Thank goodness for liquid antacid, it helped heal his bottom when that happened by rubbing it on it. Then he started wheezing all the time and was on breathing treatments.

Finaly at his 12 month check up I was fed up with it all and asked for him to see a specialist. We went to an allergist/immunologist when he was 14 months old. The doctor took one look at him and said to me "why wasn't this child referred to me sooner?" He was a mess. So over the course of the next 2.5 years he worked with my son to get better. Initally he was started on prilosec and more breathing treatments because of his reactive airway(now I realize it was due to the reflux), nasal sprays etc. By the time he was 3.5 years he was doing well and off all meds except a daily antihistimine.

About a month or so before he turned 4 I found out I had celiac. I felt great for the first 11 months of the 16 I breastfed him. Because of eliminating things in my diet for him, I had inadvertently went gluten light. When I started eating normal again is when it all hit the fan.

Unfortunately I didn't know about celiac and gluten then. Because he couldn't eat rice or oat cereal I fed him barley cereal as a baby at his peds recommendation to help with his reflux. No wonder he continued to have issues! I had him blood tested right after I was diagnosed with celiac and he was negative so we left things alone.

Around age 5.5 he started having daily stomach aches, complaints of puke burps(acid reflux), occasional fat in his stool(only noticed a few times because most of the time he didn't need my help), OCD like behavior and bad temper tantrums. I had him retested for allergies and celiac. His celiac blood work came back positive on his IgA tTG. He has been gluten free since. It's been a little over a year now and he is doing wonderful. Looking back I believe he had gluten problems as a baby and I just didn't know any better at the time.

[missybean]

Roda, thanks for your reply. The more I hear stories it makes me want to have the whole family go gluten free. My husband isn't really on board. Very picky. But my older daughter who is 4 has had white stools on and off and had oily stools, mostly her stools are pale tan or the color of applesauce. I know this is fat malabsorption and am familiar with it because of my own digestive issues. She complains of stomach pain. She had an elevated liver enzymes (ALP)or maybe (ALT) can't remember but it was elevated at 450. We did an ultrsound and gall bladder an stuff looked good. She is having a repeat blood test next week and then if it comes back elevated again more tests and then a specialist I'm sure. She seems fine, happy, plays good just has intermitted tummy problems. Hummmmmm.

I hear so many people say the blood test were negative only to have a positive years later. I believe it takes time for the antibodies to show up. My pharmacist said he had elevated liver enzymes and they couldn't figure out why, when he went gluten free his tests became normal again. He told me the gluten can cause inflammation in the liver. I don't know.... makes sence I guess.????

Melissa

[Roda]

Roda, thanks for your reply. The more I hear stories it makes me want to have the whole family go gluten free. My husband isn't really on board. Very picky. But my older daughter who is 4 has had white stools on and off and had oily stools, mostly her stools are pale tan or the color of applesauce. I know this is fat malabsorption and am familiar with it because of my own digestive issues. She complains of stomach pain. She had an elevated liver enzymes (ALP)or maybe (ALT) can't remember but it was elevated at 450. We did an ultrsound and gall bladder an stuff looked good. She is having a repeat blood test next week and then if it comes back elevated again more tests and then a specialist I'm sure. She seems fine, happy, plays good just has intermitted tummy problems. Hummmmmm.

I hear so many people say the blood test were negative only to have a positive years later. I believe it takes time for the antibodies to show up. My pharmacist said he had elevated liver enzymes and they couldn't figure out why, when he went gluten free his tests became normal again. He told me the gluten can cause inflammation in the liver. I don't know.... makes sence I guess.????

Melissa

Have you had your older daughter screened? She is old enought to explain about a blood test if you were to go this route.

I put my oldest son who is 10 gluten free in August of this year. He has had blood work 4-5 times and it is always negative. He had a scope/biopsy in Aug. that was negative also. I toyed with the idea of trying him gluten free for over two years. I even had people on here encouraging me to do it. I just couldn't commit him to it with all the negative testing.

He had his own issues as a baby. He has suffered constipation since the day he was born and he was breast fed for 14 months. Nothing worked for it. He had a gastrographin enemea(different contrast but is the same as a barium enema x-ray) when he was 2.5. Besides the bad constipation it was normal. He was on lots of apple juice, mineral oil, fleets enemas and miralax at different times. We eventually tried to incorporate more fiber and limit dairy and that worked decent. Most recent symptoms were daily stomach aches, irregularity/constipation, gas/bloating, nausea and falling on his growth.

In this past 3.5 months he is regular going every day to every other day, no more stomach aches/gas/bloating, more "pink" in color, has gained about 6 pounds(he never gains this much usually in a whole year), no more nausea and is starting to grow in height. I do think he eventually may have developed the antibodies but who knows if and when. He doesn't have a diagnosis of celiac obviouslly, but he is much better off gluten. He is going to try gluten after Christmas to see if he reacts. We were going to do it sooner but he didn't want to be feeling bad at Christmas if it was to happen. He really doesn't mind being gluten free and likes the fact he is starting to grow. This was something I agreed to let him do so I can't go back on my word. I know he needs to stay gluten free and I hope his little experiment will reinforce that to him. We go back to the GI in Jan. to follow up and to let her know what happened with gluten reintroduction.

[kaity]

hello everyone, this is the first time i post to this website, my oldest son is three years old and i think he has celiac, this is his story:

he was born full term weighing 8.9 pounds, he was a very healthy baby, i only breastfed him, and rarely fed him solids till he turned about 9 or ten months, i weighed him when he was 9 months old he weighed 23 pounds, but when i started feeding him solids that is when he started falling down the chart,he would throw up almost every night, almost every weak get an unexplained fever, his stools were never solid, they were always either like water, an the thickest they ever were was when they were like mustard, with a very foul smell, he would get taller but not gain weight, he remained the same weight as he was when he was 9 months old till he was 2 years and 9 months, that means he remained two years with out gaining a single pound, he always had a big belly infront of him, and sometimes when he poops in his iaper he would get it all over his legs, i kept taking him to different doctors they would all put him on different medecine that never helped him till finally i took him to a doctor that said that he has celiac and another doctor said that he has lactose intllerance, i stopped giving him gluten for about a month and a half, but within htat month i would still give him lactose but in small amounts, he gained 4 pounds in that period, his stool was solid for the first time in his life, but then when the test results came back and the doctor that said that it was lactose intolerant called and said that the tests came back adn that my son doesnt have celiac that he has lactose intollerance,so i started giving him gluten and now his stools are liqui again....... i dont know what to do now.... he is 35 months old now and weighs 35 pounds .

WHAT DO YOU THINK I SHOULD DO?????????????????

[Booghead]

Kaity, Many people can not tolerate lactose when they have celiacs.

Take him off both, COMPLETELY. No cheese or yogurt, or even icecream. Babys rarely have a positive celiacs blood test and it was foolish for your doctor to think otherwise. So no gluten and no lactose for your little boy.

He will get much better off of both (I think, but there is no way for me to be positive). I get the "big belly" from the lactose not the gluten. But his other problems could be caused by gluten.

Espcially the low weight he has. Try going gluten and dairy free.

Give hime meats, vegetables, fruits, corn chips (gluten free), corn tortillas. Avocados are really good for weight gain. So is olive oil. I would put that in some of his foods, you can't taste it but it helps babies gain weight. Check everything for gluten, be double sure.

Give it atleast a month before starting back on gluten. If you see any improvement then keep him off of it. 6 months is really more ideal for a good test.

Good Luck and Happy Holidays.

[Roda]

Kaity: Blood work is notorious for having about a 30% false negative rate in young children. I believe that my son suffered from celiac since he was a baby. However I didn't know about celiac or gluten then. I was diagnosed with celiac when he was almost 4. I had him and my other son blood tested then and they were negative. Two years and many symptoms later I had my youngest son retested (he was almost 6) and he had a positive IgA tTg. We did not biopsy and he has been gluten free since.

You have a couple of options. You could have him scoped and see if he has a positive biopsy or you could take him gluten free now. From what you describe it sounds like gluten bothers him.

[kaity]

i agree with you regarding taking him off gluten i did him some new blood work now it is going to be a week till the results come out and i find out what the problem is, i dont want to sound like a bad mom or aything but i really hope that he has celiac because atleast then i will know what is wrong with my son, because i am always afraid if something serious is wrong with him, atlease that would my mind at ease....