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

Wondering About My Two Oldest


brandyburl

Recommended Posts

brandyburl Apprentice

Hi I'm fairly new here. Been reading a lot. I've decided that I'm going to get myself tested for celiac due to symptoms I've been having and my past medical history.

 

But now I'm wondering if I should go ahead and get my two oldest children tested too (I have 3 total).

My son has autism. In the past when he was about 6 (he's 10 now) we saw a DAN dr and he performed extensive allergy tests and said that he was allergic to like 50 foods. We avoided those foods as best we could for a few months which was SO difficult. Then I decided to get a second opinion on his allergies. I took the test results to another allergist who said there was no evidence of an allergy. So we let him eat a regular diet.As soon as we did that his teacher said she noticed and that his behavior was better while he was on the diet avoiding those foods. We dismissed what she said. I regret that now.  Well, his weight has ballooned since then. Don't get me wrong, he's probably 5'4" and is wearing a men's size 32/30 in jeans. He's big for a 10 year old. He's always been taller, but now I feel he's overweight. He's constantly hungry and sneaking into the snack cabinet always going for the carbs and foods with gluten. His favorite is saltine crackers. He'll eat an entire sleeve at a time. The other night we had pasta and before I knew it he'd had four bowls! He's on Intuniv and Sertraline for anxiety and to help with concentration at school, but is still failing a couple of subjects and is forgetful and irritable. At times he complains of headaches and stomach aches. He is very inactive and falls asleep in class at times and is hard to wake in the morning.

 

My daughter is 8. She is very moody and irritable. Just asking her to take a shower or clear her dishes will elicit an argument. She has gained a lot of weight too. She has a pretty big belly that sticks out. She is also forgetful and very unorganized. However, she has no problems in school and does very well. She does spend a long time in the bathroom every morning having bowel movements though. When she was younger we noticed that any time she got ranch dressing on any part of her skin it would turn bright red. So we took her to the DAN dr around the same time we took my son. Her test results showed that she was allergic to several foods too but we never really got on a special diet for her. Then after taking my son for the second opinion we just gave up. I feel pretty bad about that now. 

She has also just recently stopped wearing pull ups at night. She still has accidents at night and sometimes during the day I've noticed that her pants will be wet. Like she's leaked some urine or something. She is on oxybutnin for what her PCP believes is overactive bladder. 

 

They are both due for routine check ups so I was thinking of making appt for all three of us with our PCP and talking with him about our symptoms and asking for a test for celiac. We will most likely be doing a gluten free trial regardless of the test results. Is it worth the trouble of going in for an appointment for a diagnosis if we're going gluten free anyway? Part of me would almost rather see the doctor first just to discuss it with him and get his backing on the gluten free diet even if we don't get the testing. That way when my family complains about the difficulty of their diet I at least have my doctor's backing to explain it. 

What do you all think?


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



Celiac.com Sponsor (A8-M):



frieze Community Regular

the medical prof., except for the DAN doc, has failed your family!  Hopefully you are a stay at home mom, because detoxing that 10 year old is not likely to be quick or easy.  You probably will have to wean him, not go cold turkey.  then it will require a gluten free home.  you will need the dx to get the school on board.  good luck

1

pricklypear1971 Community Regular

I suggest you get everyone tested before going gluten-free. If your pcp refuses, insist. If that fails there are online labs you can order the labs from (you go to a local lab for the draw).

You will need school support for the gluten-free diet there. Usually, that's a doctor's note.

brandyburl Apprentice

Unfortunately I'm not a stay at home mom. I work full time. My husband and I are talking about me staying home though because the cost of daycare/babysitting for 4 kids is so high.

I have an appt with our pcp on Friday afternoon. I've been making a list of symptoms for all three of us. I hope we get some answers.

Mom-of-Two Contributor

Insist on testing-- for all. It is so freeing to just KNOW.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,175
    • Most Online (within 30 mins)
      7,748

    Chels22
    Newest Member
    Chels22
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Heatherisle
      Daughter has started gluten free diet this week as per gastroenterologists suggestion. However says she feels more tired and like she’s been hit by a train. I suggested it could be the change to gluten free or just stress from the endoscopy last week catching up with her. Just wondering if feeling more tired is a normal reaction at this stage. I suppose it’s possible some gluten might have been present without realising. Have tried to reassure her it’s not going to resolve symptoms overnight
    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
×
×
  • Create New...