Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Feel Like I'M Nuts But Plan To Ask Doc About Celiac


lindsayanne0

Recommended Posts

lindsayanne0 Newbie

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



lindsayanne0 Newbie

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.

jackay Enthusiast

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.

CeliacMom2008 Enthusiast

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!

lindsayanne0 Newbie

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.

tarnalberry Community Regular

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.)

lindsayanne0 Newbie

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



seezee Explorer

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.)

Open Original Shared Link

Open Original Shared Link

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,158
    • Most Online (within 30 mins)
      7,748

    Robyn Newton
    Newest Member
    Robyn Newton
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      HypOthyrOidism is HashimOtO's thyrOiditis.  HypeRthyRoidism is GRaves disease.
    • mermaidluver22
      @Scott Adams Thank you so much for this thoughtful and encouraging reply 💛 It really helps me feel less alone navigating all of this! I’ve definitely been strict gluten-free, but I’ll admit — in the beginning, I honestly knew nothing about cross-contamination 😅 so it’s very possible my gut is still healing from that. I feel very abnormal because I am not a typical celiac or a typical Crohn's, so it makes me feel very stuck. 
    • nanny marley
      Hi still the same unfortunately, they had to cancel my colonoscopy due to my trapped nerve , I'm awaiting some kind of scan , it was the nurses who  told me to refuse and asked a docter , and I was told to cancel and go back to my consultant , I think because my sciatic nerve is compressed between my herniated discs , the prep was enough I could handle , but the colonoscopy itself , they advised me to seek something different ,due to the position I had to be in and the movements , so I will update Wen I know more , thankyou for asking appreciated 🤗
    • Scott Adams
      It sounds like you're navigating a complex situation with your celiac disease, and it’s understandable to feel confused by the GI world! While celiac disease typically affects the duodenum and proximal small intestine, it’s possible for inflammation to extend to the ileum, especially in cases of more severe or longstanding damage. Since your tTG-IgA remains elevated despite a strict gluten-free diet, this could indicate ongoing healing or subtle gluten exposure. The ileal inflammation might still be related to celiac, though it’s good your doctor is ruling out other conditions like Crohn’s, given the nonspecific biopsy findings. Some people with celiac do report ileal involvement, particularly if they have refractory disease or delayed healing. Keeping close follow-up with your GI and possibly revisiting your diet for hidden gluten sources could help. Hang in there—it’s a journey, and you’re doing great by staying proactive!
    • mermaidluver22
      hi, how are u now? any answers?
×
×
  • Create New...