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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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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
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    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
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    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
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