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

Frustrated


littlestarsmom

Recommended Posts

littlestarsmom Newbie

Hi - New here and need some help please!!!

My son is 7 years old. At about 1 year old he became extremely picky. His life pretty much consists of eating bread and not much else. I really feel like it is due to a gluten and/or wheat intolerance. About a year ago we did blood testing. All came back negative. We did the small intestine biopsy. That came back negative as well. The only symptom he seems to have is constipation. He doesn't really complain of stomach pains. He barely eats anything. He is tall for his age and his weight seems about normal. When we went through all the testing a year ago our pediatrician sent us to Children's Hospital to a GI specialist. Since the biopsy came back normal that was all the testing that was done. So I just went on with life and let him continue eating his bread. I don't like the fact that he continues to just want bread. I know there is a problem and feel the bread eating is his way of trying to make himself feel better. I have recently tried taking him off gluten but it has been extremely difficult because he just won't eat much. I guess the purpose of this post is to get advice. I just don't know what to do. Do I just completely get him off the gluten and see what happens or do I go back to our pediatrician and see what else can be done? I just feel so frustrated and just want to cry.

Kim


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



Celiac.com Sponsor (A8-M):



ang1e0251 Contributor

Wow, that is a head scratcher!! He would be constipated if all he eats is bread! Maybe you could switch out some of his bread products for gluten free. Granted, no gluten-free bread is going to taste good to him, it just doesn't compare. But if you could get him to eat say muffins, you could make them gluten-free and sneak some good stuff in there like zuchinni or pumpkin. There is a good cookbook about just that by Jerry Seinfield's wife. I can't remember the name but your library probably has it, mine did.

If you can sub out some of his food, without him knowing it, you can see how he reacts to a low gluten diet. See if you think it is helpful to him. Actually, he doesn't seem to be showing the average symptoms I hear about from parents. Usually they report failure to thrive, digestive problems, pain and behavior issues. That doesn't mean he isn't gluten intolerant, it just means you are going to have to dig deeper to find that answer. A positive response to the gluten-free diet is something a dr might hang his hat on.

Good luck and let us know how it comes out.

tarnalberry Community Regular

if he's mostly just eating bread, is he getting much fiber and/or fat?

honestly, it is not quacking like a celiac duck and I might look into what else might be causing the constipation.

nu-to-no-glu Apprentice

Wow...this sounds familiar to me. My son is 20 months and I suspect celiac disease. He, like your son, started only wanting "carbs" at about 1 years old (he ate all types of food before). He has diarrhea and gas and gets very rashy. Do you or his dad have any gluten issues? That could be a good indication for starters. I've seen the Seinfeld cookbook called "deceptively delicious" recommended by the previous poster, but its got recipes for meatloaf, soups, etc. That he won't even touch. We've been buying V8 splashers to sneak in some veggies if you could get your son to drink that? Just a little off-topic suggestion.

I know that with my issues, I crave carbs. I read somewhere that sometimes, our bodies crave what is making us ill. Sorry I don't have a more difinitive answer, but I've suspected the same with my child if it helps. Keep me updated on what you find and I'll do the same.

Juliebove Rising Star
Wow...this sounds familiar to me. My son is 20 months and I suspect celiac disease. He, like your son, started only wanting "carbs" at about 1 years old (he ate all types of food before). He has diarrhea and gas and gets very rashy. Do you or his dad have any gluten issues? That could be a good indication for starters. I've seen the Seinfeld cookbook called "deceptively delicious" recommended by the previous poster, but its got recipes for meatloaf, soups, etc. That he won't even touch. We've been buying V8 splashers to sneak in some veggies if you could get your son to drink that? Just a little off-topic suggestion.

I know that with my issues, I crave carbs. I read somewhere that sometimes, our bodies crave what is making us ill. Sorry I don't have a more difinitive answer, but I've suspected the same with my child if it helps. Keep me updated on what you find and I'll do the same.

I don't personally get that because I can't stand feeling sick so I avoid things that have made me feel sick. I do know of people though who say they crave what their allergens are. I guess we're all different.

  • 3 weeks later...
gspoongrl Newbie
Hi - New here and need some help please!!!

My son is 7 years old. At about 1 year old he became extremely picky. His life pretty much consists of eating bread and not much else. I really feel like it is due to a gluten and/or wheat intolerance. About a year ago we did blood testing. All came back negative. We did the small intestine biopsy. That came back negative as well. The only symptom he seems to have is constipation. He doesn't really complain of stomach pains. He barely eats anything. He is tall for his age and his weight seems about normal. When we went through all the testing a year ago our pediatrician sent us to Children's Hospital to a GI specialist. Since the biopsy came back normal that was all the testing that was done. So I just went on with life and let him continue eating his bread. I don't like the fact that he continues to just want bread. I know there is a problem and feel the bread eating is his way of trying to make himself feel better. I have recently tried taking him off gluten but it has been extremely difficult because he just won't eat much. I guess the purpose of this post is to get advice. I just don't know what to do. Do I just completely get him off the gluten and see what happens or do I go back to our pediatrician and see what else can be done? I just feel so frustrated and just want to cry.

Kim

gspoongrl Newbie
Hi - New here and need some help please!!!

My son is 7 years old. At about 1 year old he became extremely picky. His life pretty much consists of eating bread and not much else. I really feel like it is due to a gluten and/or wheat intolerance. About a year ago we did blood testing. All came back negative. We did the small intestine biopsy. That came back negative as well. The only symptom he seems to have is constipation. He doesn't really complain of stomach pains. He barely eats anything. He is tall for his age and his weight seems about normal. When we went through all the testing a year ago our pediatrician sent us to Children's Hospital to a GI specialist. Since the biopsy came back normal that was all the testing that was done. So I just went on with life and let him continue eating his bread. I don't like the fact that he continues to just want bread. I know there is a problem and feel the bread eating is his way of trying to make himself feel better. I have recently tried taking him off gluten but it has been extremely difficult because he just won't eat much. I guess the purpose of this post is to get advice. I just don't know what to do. Do I just completely get him off the gluten and see what happens or do I go back to our pediatrician and see what else can be done? I just feel so frustrated and just want to cry.

Kim

hi, my son is exactly like you say about eating only carbs. loves bread.. we are doing the testing now. he has poop issues also. but he iss o picky on his food. I started him on the gluten free diet yesterday. which i know is going to be hard. I tried the bread.(he did not like so much) . If you get this reply email me at gspoongrl@aol.com . I know no one like my son. and i to am very frusterated.

michelle


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



Celiac.com Sponsor (A8-M):



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...