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Feel Like I'M Nuts But Plan To Ask Doc About Celiac
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My son has really been having troubles in school...he's fine most of the time but every once in awhile he'll get upset and act out and seems irritable often. Usually after lunch time. He's tired a lot and often falls asleep at school (he's in preschool starts kinder this fall). He's a picky eater and doesn't usually eat much. He likes to snack rather than eat a meal. Lately he always seems to be sick so often...stomach bugs, colds, strep..., he often complains about his tummy hurting, has sparatic bouts of diarhea...then constipation, he has a sore in his mouth that won't go away (canker type). I feel like I'm nuts to think this could possibly be celiac but the more I read, the more I think I need to check.

His dad has never been tested for celiac but has HORRIBLE stomache issues...sometimes can't even finish a meal before he heads to the potty. Now I'm wondering if he might have issues with it too?

I looked at the school menues and can confirm that each day he's had problems, they have had food with gluten. But perhaps it's something else. Perhaps it's just his attitude. I'm so exhausted with his irritability and him getting in trouble at school. I have an appt set up for a week from now but am calling today to see if I can get it moved up.

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I guess I should also add that he doesn't sleep that great. Usually up at least once per night. And often he complains of being hungry when he does wake up....like at 3 in the morning.

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Definitely consult your doctor about this. It may or may not be Celiac. It could be caused by other food intolerances. Back when my son was an infant, he was extremely unhappy, hyperactive, didn't sleep, etc. Once we figured out what foods bothered him and took them out of his diet, he became a new person. He finally started going to sleep without screaming himself to sleep and became such a pleasant little boy to be around. It only took four days to get the offending foods out of his diet and he changed. He never had to give up gluten.

It's a lot of work figuring out why little ones act up. I'm guessing what they eat makes a big difference to most.

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I would definitely have him checked for Celiac. It may not be, but your son's symptoms sure do seem to sound like Celiac. My son had almost all of the same symptoms you described and thankfully it turned out to be Celiac and they all went away with a gluten free diet!

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Thanks for the replies. I have an appointment tomorrow morning. I've written down everything that has been going on. I have no clue how familiar our family doctor is with food intolerances/celiac or even is one that will listen to me about the subject.

I think part of me is afraid that they will let it all go in one ear and out the other and again tell me that he's 'just 5' and chalk me up to 'another over worried mom'. I took him in when he was 3 with similar issues at the pressing of his teacher (I think she was looking for an ADD diagnosis) and the doc's diagnosis was that 'he was 3'.

I also fear they won't be willing to test or be open-minded about it all. And as weird as this sounds, I would be okay if the tests came back that he does have some kind of food intolerance because then I will then at least have an ANSWER.

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Talk more about the physiologic symptoms than the behavior ones. Emphasize how those physiologic symptoms are affecting his quality of life. That way, you can tune your message. (I'm not saying to lie or omit anything, but to focus the message to best reach your audience.

The poor sleep alone could be causing the fatigue and behavior issues. But then what is causing the poor sleep? (If he's waking up hungry in the middle of the night, my first guess is not enough calories - particularly during the afternoon/evening - and my second guess is an issue with blood sugar. Sure, it could still be celiac, but there's a lot of ground to explore.)

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I know there are a lot of people searching around on these boards looking for answers when they suspect celiac so wanted to be sure to come back and post after my appointment no matter what the results were.

First thing - I'm so glad I went. And I was so releived that the doctor didn't think I was a complete looney.

After examining my son and asking lots of questions, she came up with a 'plan of action'. She did wonder if there might be some intolerance issues but felt the most important one to address first was the sleep. SO, starting today, we are to allow him at least 12 hours of sleep per night...more if he needs it. He currently gets about 10. She said some kids just need lots of sleep...mostly kids his age. She said "Not all kids fit in the same box." Love that statement! She also wants him to eat something before bed...like a banana. Anyway, that's step one...she wants us to get that going for a few days and see what changes, if anything.

THEN, we are to go at least one week (with the colaboration of our preschool per doctors orders) with no lactose and see what changes there are.

Then next, if nothing has changed with the lactose, she wants us to go at least a week with no gluten and see what changes, if anything.

I'm supposed to check back in after that. She said the best way to find out if he's having intolerance issues is to eliminate the suspected food from his diet. She said if we haven't had an changes then she wants to do bloodwork at that point.

OH - and she also said he's NOT ADD. She said if she suspected it, she would tell me but she didn't see it in him. She also added that she feels that 'label' is slapped on kids too quickly these days when there might be something else going on.

:) So I'm overall happy with the appointment. No immediate answers, but definitly some steps that make sense!

One thing that I think helped me is having her support when I appraoch my son's school about doing these things (lactose / gluten). She said if they have any issues about him not having some official diagnosis on paper before doing it, to have them call her.

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I know there are a lot of people searching around on these boards looking for answers when they suspect celiac so wanted to be sure to come back and post after my appointment no matter what the results were.

First thing - I'm so glad I went. And I was so releived that the doctor didn't think I was a complete looney.

After examining my son and asking lots of questions, she came up with a 'plan of action'. She did wonder if there might be some intolerance issues but felt the most important one to address first was the sleep. SO, starting today, we are to allow him at least 12 hours of sleep per night...more if he needs it. He currently gets about 10. She said some kids just need lots of sleep...mostly kids his age. She said "Not all kids fit in the same box." Love that statement! She also wants him to eat something before bed...like a banana. Anyway, that's step one...she wants us to get that going for a few days and see what changes, if anything.

THEN, we are to go at least one week (with the colaboration of our preschool per doctors orders) with no lactose and see what changes there are.

Then next, if nothing has changed with the lactose, she wants us to go at least a week with no gluten and see what changes, if anything.

I'm supposed to check back in after that. She said the best way to find out if he's having intolerance issues is to eliminate the suspected food from his diet. She said if we haven't had an changes then she wants to do bloodwork at that point.

OH - and she also said he's NOT ADD. She said if she suspected it, she would tell me but she didn't see it in him. She also added that she feels that 'label' is slapped on kids too quickly these days when there might be something else going on.

:) So I'm overall happy with the appointment. No immediate answers, but definitly some steps that make sense!

One thing that I think helped me is having her support when I appraoch my son's school about doing these things (lactose / gluten). She said if they have any issues about him not having some official diagnosis on paper before doing it, to have them call her.

There are tests for both celiac and lactose intolerance. I believe that their lactose one is a type of breath test (one doctor recommended this but we didn't do it since many of our symptoms went away with eliminating gluten) and celiac can be detected with a simple blood test. If it is celiac, it's better to run a blood test before he stops eating gluten. I don't think the blood test is complicated or expensive, but not all doctors are aware of it. It sounds like your doctor is really nice. There is some information here on what test you would need that maybe you can bring with you. It sounds like you are on the way to figuring this out. (Also, I have friends who have kids that react like this to artificial food dye, too. That could also be something to try eliminating.)

http://www.celiac.nih.gov/PracticeTools.aspx

http://digestive.niddk.nih.gov/ddiseases/pubs/celiactesting/index.htm

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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