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Behavoir/stools/just Dont Know

mcs1984

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mcs1984 Apprentice
mcs1984
Posted

Ok so i am hoping that some one can help me with my question, My son is 4 and we are just now starting our journey with the GI doctors. He has had problems going to the bathroom since he was about 1 month old. Up until now his doctor told us it was just a phase and that he will grow out of it, but we are still having lots of problems and the older he is getting the worse its becoming.

About a month and 1/2 ago i took him back to his doc and ask them to find out whats going on, that i am tired of telling him that i cant fix his tummy when he is telling me that it hurt. I did a food dairy and started taking him off some gluten items and starting adding more fiber. In the mix of all of this they did blood work it came back fine, so they sent us to the GI. She put him on miralax for the past month and he still is having problems. Nothing has gotten regular. They also told us that we need to put gluten back into his diet, (mind you he was never 100% off, I did most of his breakfast food and snacks) so we went back to the doctor today and they want to scope his upper and low GI and told me for sure whatever i do to keep the gluten in his diet. I did mention that he seemed to be different since we had him back on it. His behavior has just went down hill. At school he is not pay attention so much, he is more challenging, at night he only wants to watch tv or play video games. He gets to stay home 2 times a week and he is not even wanting to go outside and play. It just seems like he has no energy. And again all of the behavior problems started about the time i starting putting him back on gluten. He has now been back on it for about 2 weeks. Does anyone know if this could be from the gluten or am i just imaging this? Does anyone else battle this? Am i on the right track. Does anyone have any ideas of what i could do?

Hope someone can help...

Thank you

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CeliacMom2008 Enthusiast
CeliacMom2008
Posted

I'm sure you're going to get a lot of responses to this! Your doctor is correct on the gluten. Once you eliminate gluten from the diet his gut will begin to heal. There is really no point to going through the scope process if he hasn't been eating gluten because the results won't be accurate. But, from what I've read the tests are not 100% reliable in younger children. And if he's really not feeling well and they can't schedule the procedure in a timeframe you're comfortable with, you have to decide if you even want the test. That's a personal choice. You have to decide if you can live without a diagnosis.

I think most of the forum will tell you it is really hard as a parent to go gluten free, see results, and then decide to have the tests. Because then you have to put them back on gluten and literally poison them to get an accurate test result (again, keeping in mind that the tests can be unreliable the younger the child). We were fortunate enough to have the whole process go pretty quickly, so we were never in this position. Seeing the changes in my son, I know I couldn't purposefully gluten him (but I also know he has Celiac 100% so I'm not unbiased).

Moving on to your attempts to remove some but not all gluten. Don't bother. When it comes to gluten and Celiac it's all or nothin'! The protein in gluten causes and immune response that creates a battle in the intestines. It only takes a very small amount (literally crumbs) to start that chain reaction. So wait until you know what you want to do as far as the testing and then make up your mind - gluten or no. If you choose gluten free come back and everyone will be happy to assist you with getting started.

As for your son's symptoms. We spent 8 years trying to figure out what was up with our son's stomach. (Doctor's told us he was a healthy, thriving boy.) So it was pure intestinal issues that lead us to an eventual diagnosis. Now that he is gluten free and truly becoming a healthy, thriving boy I can tell you his whole mind, body, and spirit have changed. His temperment (which I never thought of as "bad" before, just prone to mood swings if he was tired or hungry) has become fantastic. He literally is in a good mood 99% of the time. When he makes mistakes, he's quick to apologize and work to fix things. We didn't realize he was having trouble concentrating in school, just thought he was bored with the material and in a hurry. Two weeks gluten free and his hand writing totally changed, papers came home filled in completely, and on and on. He has much more energy. He used to go to bed between 7 and 7:30. 12 hours of sleep was what we strived for and then he'd have a catch up nap every few weekends that would last for hours. He hasn't napped in 4 months! He stays up until 8:30/9:00. So in answer to your question, can gluten cause all those symptoms? YES! And then some! I believe gluten kept my son from being able to sit at the dinner table. He used to be a wanderer during meals. We'd even take his chair away and allow him to stand if he would just stay at the table. Now he leisurely sits at the table through whole meals. Who would've known?!?!

Good luck with your son! I hope you're able to experience what we have. His Celiac diagnosis is a blessing we're thankful every day and has helped him become an even more amazing kid!

Ursa Major Collaborator
Ursa Major
Posted

You might want to tell the doctor that unless he does the scope and biopsy VERY soon, you will just put him back on the gluten-free diet and not care about his blessing on this! Nobody can prevent you from just having your kid be gluten-free, it is nobody's business.

All his symptoms could be caused by gluten, dairy, or soy, or a combination of all three. Gluten can cause constipation or diarrhea, as can dairy.

chasing4 Rookie
chasing4
Posted

My dd got diagnosed only 2 1/2 weeks ago. For years before, she was very irritable and hard to deal with. In school, she had a hard time concentrating, she would just stare off into space. For a few months before she was diagnosed, she was extremely sick all the time. Once she was diagnosed, our doc told us to put her on a low-gluten diet at this time, but we are trying to give her a gluten-free diet instead. Once we took her off the gluten, her stomach is starting to feel better and she is so happy and very cooperative. I just talked to her teacher today, and her teacher has noticed a huge improvement with her attention in these past couple weeks. What an improvement!

On Wednesday, one of her friends had a birthday. Since her doc told us to give her the low-gluten diet, we let he have the treat...a cupcake. When she got home from school, she was back to being irritable and when I asked her to do her homework, all I could get out of her was "I don't know how", when in fact I knew she could. The next day, she was back to being very happy again. It really took me by surprise what one little cupcake can do.

CeliacMom2008 Enthusiast
CeliacMom2008
Posted

Chasing4,

Your doctor has given you some bum advice, I'm sorry to say. A low-gluten diet won't help a Celiac. The long term damage is still being done. You saw the short term repercussions of the cupcake. What you didn't see was the immune response the cupcake started and the damage it did to her small intestines. It will take months for that to heal and until it does she isn't gettting the most out of her food, her life, her immune system. If you want to help her you have to give her a 100% gluten free diet.

Please stick around the forum, there are so many wonderful people here that can help with so many aspects of the lifestyle.

Good luck...and look for a new doctor!

mcs1984 Apprentice
mcs1984
Posted
  • Author
Chasing4,

Your doctor has given you some bum advice, I'm sorry to say. A low-gluten diet won't help a Celiac. The long term damage is still being done. You saw the short term repercussions of the cupcake. What you didn't see was the immune response the cupcake started and the damage it did to her small intestines. It will take months for that to heal and until it does she isn't gettting the most out of her food, her life, her immune system. If you want to help her you have to give her a 100% gluten free diet.

Please stick around the forum, there are so many wonderful people here that can help with so many aspects of the lifestyle.

Good luck...and look for a new doctor!

Believe it our not the doctor didn't tell me to do this, when i started putting him on high fiber food (when we went for his 3 year old check up, he doctor really thought it was a phase and the food he ate, that i knew it was not) and writing everything down that he ate to show her, i found that a lot of the foods he liked where gluten free. And his breakfast food and snacks where the easiest to find that where both. Umm the more i have been reading on the forms the more i am learning about the gluten. Its funny we had pasta last night (because until the test they don't want him gluten free) but he was a bear. He woke up from nap great had no problems but with in about 20 min after eating it was a battle about almost everything. And then i noticed I was not feeling so great. I am really thinking that it the gluten. As far as i know we only have one cousin that has a wheat allergy, But talking to another cousin she is having tummy problems and went dairy free (that V and I are already dairy free). There are 54 cousin on my moms side 1st and 2nd so i really think we have something but no one besides that one has been tested for it. I am really hoping to hear from the doctor this week because these mood swings he is having since i started letting him eat whatever have been hard on all of us. Again thanks i will take any and all advise.

Ursa Major Collaborator
Ursa Major
Posted
My dd got diagnosed only 2 1/2 weeks ago. For years before, she was very irritable and hard to deal with. In school, she had a hard time concentrating, she would just stare off into space. For a few months before she was diagnosed, she was extremely sick all the time. Once she was diagnosed, our doc told us to put her on a low-gluten diet at this time, but we are trying to give her a gluten-free diet instead. Once we took her off the gluten, her stomach is starting to feel better and she is so happy and very cooperative. I just talked to her teacher today, and her teacher has noticed a huge improvement with her attention in these past couple weeks. What an improvement!

On Wednesday, one of her friends had a birthday. Since her doc told us to give her the low-gluten diet, we let he have the treat...a cupcake. When she got home from school, she was back to being irritable and when I asked her to do her homework, all I could get out of her was "I don't know how", when in fact I knew she could. The next day, she was back to being very happy again. It really took me by surprise what one little cupcake can do.

Another ignorant doctor (sigh). People with celiac disease need to be completely gluten-free, as has been said already, a low gluten diet is just as damaging as eating lots of gluten to somebody with celiac disease.

Your daughter needs to be 100% gluten-free. Next time send a gluten-free cupcake with her when she goes to a birthday party!

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