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Bad Weekend

mcs1984

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mcs1984 Apprentice
mcs1984
Posted

Hi everyone, so i posted a few days ago when i found this site (Behavoir/stools/just Dont Know) and i first want to say thank you to anyone that is willing to give me some advice. This is whats been going on since then:

My son V is 4, and his doctor told me no mater what until we have his upper and lower scoop done to put him back on the gluten. Well I have done that. But this weekend was h*** with him. He is having some really bad mood swings. But at school he is not doing this, could it be because he is not eatting much when he is there? I dont mind saying that on both saturday and sunday night for dinner he had some kind of noodle (he loves them and sometimes that all i can get him to eat besides fruit and I really did not want another battle) well i got one anyways about 30 mins to an hour after he ate the battles started again over little things, the biggest one last night was bed time and shower and that took us an hour to handle it and calm him down. I think the biggest thing that got my husband and I was the fact that our son kicked us (this is not our son, he is sweet little boy who has never bit or kicked or hit us).

I called the doctors office today and told the nurse what was going on and she emailed the doctor right away, the soonest they can do the scoop is the 7th and really after I send them this letter about a problem i have when i am put to sleep it could even push it back a little more, because they would have to do it in the OR.

So what do i do?? I am so drained today because of fighting him. Can anyone relate or have any advise.

Thanks

Maria

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feedmykids Rookie
feedmykids
Posted

Sorry for the pain this is causing you! YOu are being a good mom even though it is hard. :) All I can say is hang in there and try hard to be patient. At least you know it won't last for more than a few more weeks. WE chose NOT to do the endoscopy becasue DD was barely 2 years old, and the Hospital was 4 hours away. They said it would take two months to get her in! (this was after being on gluten for 2 months waiting for the initial Appt. with the pediatric GI doctor. 4 months was just way too long to endure and we already knew the diet was helping so we opted for the gluten-free diet until she is older.

fedora Enthusiast
fedora
Posted

hi, I am sorry. You aren't alone. We are having issues with my DD's behavior too. She is so much better at school. I think it is because of the different setting, they respond differently. Also my DD eats almost no gluten in her lunch. Mostly at dinner and somethimes breakfast. We are awaiting her enterolab results because she says she needs proof. I understand. Good luck on the waiting.

RiceGuy Collaborator
RiceGuy
Posted

Well, I'm sure you know by now that the tests are notoriously unreliable for small children. Not to be discouraging, but all I can add here is to consider what you would do if the tests come back negative. I think I can guess. But if you want a doctor's diagnosis, now seems to be the time to get it done, if the results can be accurate. Again, I'm sure you've carefully weighed all this, but perhaps it will help reaffirm your decision.

rick-spiff Rookie
rick-spiff
Posted

Have you considered getting a blood allergy test??

Just to know that they are allergic or sensitive was good enough for me.

Kibbie Contributor
Kibbie
Posted

As soon as I found out the gluten may be the culprit of my daughters issues I kep her gluten light (I mean super gluten light) I gave her 1 saltine cracker a day and thats it.

My daughters symptoms are vomiting and insane behavior. Seriously its like she is possessed when she gets gluten its horrible.

I'm currently pregnant and my pediatrician will order the Kimball Genetics test for this next kid. So that we know if its a possibility since our house is gluten free. Honestly had I known that the genetic test was out there I would have put my daughter on a gluten-free diet right away, had the test ordered and just let a positive gene test plus positive response to being gluten free be my indicator. Hind sight is 20/20 you know.

Have you discussed the genetic test with your MD?

mcs1984 Apprentice
mcs1984
Posted
  • Author
As soon as I found out the gluten may be the culprit of my daughters issues I kep her gluten light (I mean super gluten light) I gave her 1 saltine cracker a day and thats it.

My daughters symptoms are vomiting and insane behavior. Seriously its like she is possessed when she gets gluten its horrible.

I'm currently pregnant and my pediatrician will order the Kimball Genetics test for this next kid. So that we know if its a possibility since our house is gluten free. Honestly had I known that the genetic test was out there I would have put my daughter on a gluten-free diet right away, had the test ordered and just let a positive gene test plus positive response to being gluten free be my indicator. Hind sight is 20/20 you know.

Have you discussed the genetic test with your MD?

Since i am new to all of this, what is the genetic test. We had the blood test done and that came back negative. He is going in on may 5 to have an upper and lower GI scoop done. When we went in for a follow up visit with the GI doctor and I told her that he has a 2nd cousin that cant have wheat and that his constipation was not getting any better she said that its would be the next step. Then when i call the following Monday and told the nurse how bad the weekend was she emailed the doctor right away and she got us in for the scoop faster. I hate to say it but i hope it comes out positive. We are having behavior/very red cheeks/he is peeing his pants alot and those are the main symptoms.

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Kibbie Contributor
Kibbie
Posted
Since i am new to all of this, what is the genetic test. We had the blood test done and that came back negative. He is going in on may 5 to have an upper and lower GI scoop done. When we went in for a follow up visit with the GI doctor and I told her that he has a 2nd cousin that cant have wheat and that his constipation was not getting any better she said that its would be the next step. Then when i call the following Monday and told the nurse how bad the weekend was she emailed the doctor right away and she got us in for the scoop faster. I hate to say it but i hope it comes out positive. We are having behavior/very red cheeks/he is peeing his pants alot and those are the main symptoms.

Open Original Shared Link That is the link (you can order the test with or with out a Dr. My insurance covers it with a Dr.s order so I'll wait for that)

Basically by doing the gene test you can tell if your child has the genes that can "turn on" and become Celiac Disease. If the test comes back negative, then there is no way your child could have celiac disease.

If you are looking for an actual diagnosis however this may not be the way to go because you can have the genes and not have Celiac Disease, so a lot of Dr.s don't mention this as an option because they always want a Dx.

For me personally, knowing my daughters blood work was positive, that she had the genes, and that she did well on a gluten free diet would have been enough for me to say she had celiac disease. She was 18 months old when she was diagnosed and we had her put under and scoped because that is what 2 trusted Doctors (including my pediatrician) told me to do. Now that I have told my pediatrician otherwise she's ordered the genetic test for a recent patient before referring them to the only pediatric GI office in town.

I have another friend who's son has downs syndrome and when the dr. mentioned the possibility of him having celiac disease she put him on a gluten free diet. The Dr. wanted her to put him back on gluten so he could have the tests done. When he saw the information about the genetic test, he just ordered that instead of putting the baby back on gluten. So it seems to be gaining popularity with the Dr.s

My OB has ordered the test for me because I told her about it and she said "this way you will know if you need to get your blood tested yearly or not" So I will have my test done in June with the rest of my random pregnancy labs!

Hope that helps!

mcs1984 Apprentice
mcs1984
Posted
  • Author
Open Original Shared Link That is the link (you can order the test with or with out a Dr. My insurance covers it with a Dr.s order so I'll wait for that)

Basically by doing the gene test you can tell if your child has the genes that can "turn on" and become Celiac Disease. If the test comes back negative, then there is no way your child could have celiac disease.

If you are looking for an actual diagnosis however this may not be the way to go because you can have the genes and not have Celiac Disease, so a lot of Dr.s don't mention this as an option because they always want a Dx.

For me personally, knowing my daughters blood work was positive, that she had the genes, and that she did well on a gluten free diet would have been enough for me to say she had celiac disease. She was 18 months old when she was diagnosed and we had her put under and scoped because that is what 2 trusted Doctors (including my pediatrician) told me to do. Now that I have told my pediatrician otherwise she's ordered the genetic test for a recent patient before referring them to the only pediatric GI office in town.

I have another friend who's son has downs syndrome and when the dr. mentioned the possibility of him having celiac disease she put him on a gluten free diet. The Dr. wanted her to put him back on gluten so he could have the tests done. When he saw the information about the genetic test, he just ordered that instead of putting the baby back on gluten. So it seems to be gaining popularity with the Dr.s

My OB has ordered the test for me because I told her about it and she said "this way you will know if you need to get your blood tested yearly or not" So I will have my test done in June with the rest of my random pregnancy labs!

Hope that helps!

thank you so much, its funny you did mention this because i went to a family gathering last night and another cousin is cutting gluten out of her diet. If my son comes up positive or anything we will do the

gene test on me and then on the next child. Its funny how the more family i am talking to about this the more things are falling in to place. For example i have always had big problems with est foods i get really sick but the dr's told me for years it was in my head so i have just been dealing with it. But it turns out a lot of my cousin (mind you there are 54 grandkids/great grandkids on my moms side) have problems with their gut and starting to do the gluten free and they said they feel better. Thanks for all your help.

Kibbie Contributor
Kibbie
Posted
thank you so much, its funny you did mention this because i went to a family gathering last night and another cousin is cutting gluten out of her diet. If my son comes up positive or anything we will do the

gene test on me and then on the next child. Its funny how the more family i am talking to about this the more things are falling in to place. For example i have always had big problems with est foods i get really sick but the dr's told me for years it was in my head so i have just been dealing with it. But it turns out a lot of my cousin (mind you there are 54 grandkids/great grandkids on my moms side) have problems with their gut and starting to do the gluten free and they said they feel better. Thanks for all your help.

About 4 months after my daughter was diagnosed with celiac disease my grandfather went in for testing. He had been experiencing symptoms for about 5 years but the Dr.s always attributed it to side effects of his random assortment of medicines (he was 89 at the time) He tested positive for celiac disease :)

My husbands side of the family has sketchy history with celiac disease (though not diagnosed) as well. His parents are always referring to symptoms the older people in the famiyl had all their lives and think that its a possibility that they had celiac disease or at least a gluten intolerance.

Interesting isn't it!

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