My 5yo - Does This Sound Like Celiacs?

[raquelita-83]

My 5 year old has had chronic constipation pretty much from the time he started eating solids. He only has a BM once every 2-3 days (sometimes longer) and he is almost always straining and in pain. I have tried different medications and nothing has seemed to help much. He is also very small. I am also very short (5') and his father is short also (about 5'3") so I never worried too much about his height, as I expected him to be on the smaller side due to genetics. However, at his 4yo checkup he was only 28 lbs (and still wearing 2T clothes) and at his 5 yo checkup, he is only 30 lbs! He did grow about 2" during that time, but the weight is still basically the same. Would this be a failure to thrive? His doctor didn't seem to be concerned, but I am starting to wonder if there is some problem here. Other than that, he is healthly, developing normally, but still complains about stomach aches and constipation problems. I have never tried a gluten-free diet. Does this sound like something I should be concerned about or possibly sound like Celiacs??

Thanks for any help. just trying to help my little boy feel better.

[swalker]

You've got nothing to lose by a gluten free trial. You'll know within four days if its going to make a difference.

[kaleesmom]

Raquelita: This definitely may be celiac disease. It sounds very similar, although luckily less severe, to what my daughter experienced. At about 7 months of age, she had horrible, horrible constipation. She would strain and strain, sometimes we had to physically pull it out of her. She would often have rectal tears from it. Her pediatricians blamed her diet, not enough water, etc. and put her on stool softeners. The softeners worked, as long as we didn't skip days. At her one year appointment, she had fallen off the growth curve. Previously averaging 75% for height and 50% for weight, she was dipping down below 25% for both. After visit after visit to the pediatrician for constipation, weight loss, difficulty sleeping at night, pale stools, and excessive fussiness, we were finally referred to a pediatric GI. She was immediately tested for celiac, but her blood tests came back negative. The GI tried to convince us she would outgrow whatever problem it was. After months of the same, our daughter became so weak, she began to have trouble walking by herself. She had fallen to less than 5% on the growth curves. She was now vomiting several times a day, and look gaunt and wasted. We called the GI whose partner told us he couldn't help us and that if we needed help we should "go to the ER". We then begged our pediatrician again for help, and were referred to a ped. GI about 90 minutes from where we lived, who saw us the next day, agreed (finally!) that our daughter was sick, and scheduled her for an endoscopy with biopsy which showed severe celiac disease. Within a month of starting the gluten-free diet, she was like a completely new kid, and we were absolutely thrilled to have our happy, energetic and HEALTHY daughter back again!

DO NOT BELIEVE NEGATIVE BLOOD TESTS IF YOU ARE SUSPICIOUS OF CELIAC DISEASE. THEY ARE FALSELY POSITIVE IN UP TO 20% OF PEOPLE!

[raquelita-83]

Kaleesmom, thanks for your response, and I'm sorry about what your little girl went through, but glad she's feeling much better. Thankfully my son's symptoms are less severe, but also make diagnosing him difficult. From your response, and the research I've done, I'm now going to take him in to get the blood test done. I figure it can't hurt to see what they say...

I also suspect this may run in my family, although currently undiagnosed. I have a sister who has always been extremely skinny no matter what she eats, and in childhood used to get a skin rash (mostly on her knees and legs) that looks a lot like the pictures I have seen of Dermatitis Herpetiformis. The doctors could never explain what it was, but I remember it being very itchy for her, and my mom would cover it with bandages so she couldn't scratch it. She also has epilepsy, which I read can have links to gluten.

Since giving birth to my son, I have felt like there was something "off" with my body. Like there is just something wrong, but I can't put my finger on it. I have had blood tests for diabetes (did find out that I have reactive hypoglycemia), overactive thyroid, and a bunch of other things, but it all comes back "normal"... But don't think I've ever been tested for celiac. I also developed migraines after he was born, which also run in my family (mother and sister). No real digestive issues though, except a bloated feeling much of the time, but no D or constipation.

[taweavmo3]

It definately sounds like it could be Celiac, I would have him tested.

I am small too (4'10"), and b/c of my size, I had a hard time getting any doctors to take my dd's lack of growth seriously. It was always blamed on genetics. After finally finding a doctor to test her, she came back positive. It's been a few years now, and I have found out that I can't tolerate gluten either. I never had the test done, which I should have looking back, but I get very sick now with even the smallest of gluten accidents. I had many random symptoms growing up, anemia and migraines being the worst. I never had major intestinal issues either, except when I was under stress. There are so many symptoms with Celiac, no two patients are the same.

Since my dd was diagnosed, we ended up putting the entire family on the diet with great success. We couldn't be healthier! Good luck to you, I hope you get some answers soon.

[Amyleigh0007]

I am in the same boat as all of you. My son was very small for his age (8 years old and 41 pounds at the time of diagnosis). His pedi always chalked it up to genes (I am 5'4 and my husband is 5'9). He was constipated all the time. He would have a BM about once a week. I had to request bloodtesting because my doctor was not going to do it again (he was tested back when he was 3 and it was negative). Trust your mom instincts and request the tests. I think taking gluten out of your son's diet as a trail sounds like a good idea but if you are planning on getting him tested keep him on gluten. The tests won't be accurate unless he is eating gluten as he normally would.

[The Kids Folks]

Like the others - you seem to be telling our story as well. My son was 9 lbs at birth. Each year he would slow drop in the growth charts until this past August he fell off the charts. It wasn't until he was off the charts, below well below the 3rd percentile did our peds decide that there was a problem. I knew something was wrong for a long time. He was ALWAYS constipated. This never made sense as he is a kid who would rather eat apples and broc then anything else. With me being only 4'11" the peds always felt that he just had my genes. After much coaxing she finally did the blood test which came back negative. We opted to try the diet even though our peds told me the "diet is a killer", she would much prefer to medicate him. He was on laxatives, fibers, mineral oil, suppositories and even enemas on a daily and weekly basis. We decided as a family to go gluten free and guess what DS is no longer on any medication (except for a vitamin) and his symptoms have subsided. He has grown 2 inches since October and has gone up a size in clothes.

I would say to try the diet - if it works then you have your answers. If not then you can seek more medical advice.

Good luck and follow your instincts!

[raquelita-83]

Thank you all for your support and for sharing your stories with me. I think that as moms, we tend to have pretty good instincts about when there is something wrong with your child. Hearing stories that sound so similar to what my son is experiencing gives me the strength to insist that the doctors do these tests for my son. Even if the tests come back negative, I will still try the gluten-free diet just to see if it can help him. For now, I'm keeping him on his regular diet so they can do the blood tests, but I did feel a bit guilty giving him a sandwhich today, wondering if I could be feeding him something that is making him sick, as he came home with a stomach ache again today...

As for the Gluten-free diet, i have a question... is this like an "all or nothing" type diet, meaning should I see improvement in his symptoms from reducing the amount of gluten he is consuming, or does it have to be 100% gluten free to see improvement? Should i be concerned about cross-contamination at his school? I would send lunch and snacks with him to school, but if he eats one bad thing at school, should I be very concerned? Also, I have heard that pots, pans, cutting boards, utensils need to be replaced when you start cooking gluten-free to prevent cross-contamination... I guess I'm wondering how strict we have to be with this? Or maybe each person has a different sensitivity to gluten, and will be affected differently? Sorry for so many questions, but this is like a new world for me!!

[mushroom]

As for the Gluten-free diet, i have a question... is this like an "all or nothing" type diet, meaning should I see improvement in his symptoms from reducing the amount of gluten he is consuming, or does it have to be 100% gluten free to see improvement? Should i be concerned about cross-contamination at his school? I would send lunch and snacks with him to school, but if he eats one bad thing at school, should I be very concerned? Also, I have heard that pots, pans, cutting boards, utensils need to be replaced when you start cooking gluten-free to prevent cross-contamination... I guess I'm wondering how strict we have to be with this? Or maybe each person has a different sensitivity to gluten, and will be affected differently? Sorry for so many questions, but this is like a new world for me!!

The answer to these questions is an unfortunate "Yes". Gluten lite does not work. And once you eliminate gluten from your diet you often react even more violently to just a teensy bit. You would need to make special arrangements to keep him gluten free at school specially for things like birthday parties, etc., when parents often send in cupcakes for sharing. Cooking utensils are a great source of cross-contamination. You will also need to check toiletries, shampoos, cleaning products; make sure he does not handle any gluten-containing pet food, and learn to read labels on all processed foods., And you will find that gluten hides in the darnedest places

Good luck on getting a definitive diagnosis.

[swalker]

Anything metal can just be washed well. They say plastic cutting boards should be replaced.

[raquelita-83]

Well, we have an appointment with this pediatrician today and I am going to be requesting the blood test. I hope they don't give me too much trouble about it. I wonder how long it will take to get the results back?? Thanks for all the help, and I'll keep you updated.

[svensmama]

I was lucky with our doctor (we see a family doctor rather than a ped) in that she was the one that brought up the celiac question regarding our son's weightloss/diarrhea/insomnia/DH issues. Our son was tested at 2 but the blood tests were negative. She then had us try the diet for 2 weeks and saw us again. When we knew it was working (by the 4th day, we knew it was working, and in the 2 weeks, he had gained nearly a pound, was sleeping through the night, etc.). Then she referred us to a GI who told me my son was fine and just had toddler diarrhea (yeah, right - RUN if a GI says that to you, especially when she has clearly not even looked at your chart). So now, if we want to do a biopsy to confirm something I already know, just so the doctor will write it down as a diagnosis, we would have to put our son on gluten again, and make him sick all over again. He's not even 2.5 and I can't do it to him.

I just would recommend that if you're going to follow the path of getting a diagnosis involving the blood tests and biopsy, hold off on the gluten free diet until the work is done.

Our son ate 1 goldfish cracker at daycare and he had a complete nightmare of a relapse for 5 days afterward. We have separate butter, jam, peanut butter, cream cheese, etc., for him so we don't cross contaminate. The diet is easy once you've done the research and get started on it, and it doesn't have to be expensive (though for a child, they want what others are having or what they used to have, and replacing those things CAN be expensive). We did NOT replace any of our kitchen supplies but have a separate toaster and label everything we make as gluten-free or not. Good luck!!

[raquelita-83]

I have to say I was actually impressed with the pediatrician today! She wanted to do a complete "failure to thrive" panel which includes the tests for celiac and also a metabolic panel, CBC , TSH, T4 & T3 (for thyroid disorder) as well as a urinalysis and a stool sample to check for fecal fat level. Unfortunately, they don't do the blood test at the ped's office so I have to take him to Labcorp. But she did agree that his symptoms sound like they could be celiac, and wanted to do additional tests as well. It just feels good to have a doctor that doesnt think I'm crazy or over-reacting, and i hope that after these tests I will have some sort of idea what could be going on, and may be able to rule a few things out at the very least.

[jmjsmomma]

Add my son and I into the club! My son was 8.5 at birth and by his 3rd birthday his growth had slowed considerably....by his 4th birthday he fell completely off the growth chart. He had horrible reflux as an infant and remained constipated until he went gluten-free after his dx in January. I am 5'3 and dh is 5'9 so we are not going to have big kids, but he is 5 1/2 and is the size of a new 4 year old. Glad you had a responsible doctor that is doing the celiac panel, but even if it comes back negative I would do a gluten challenge to see if you see any changes. Good luck.