Jump to content
  • 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

Hello - New To The Board


lcole

Recommended Posts

lcole Newbie

Hello,

 

My son was diagnosed last week with celiac and colitis.  It is such a heart breaking thing to go through.  Basically he has had diarreah (with blood) for the past month.  He is 11 years old, getting ready to start middle school in a matter of weeks.  He had a colonoscopy and endoscopy last week with the diagnosis two days later.  We have him on a gluten free and dairy free diet and he is also on some medication (lialda) for his colitis.  Nothing has changed with his bowel movements.  I am just wondering, at least for the celiac part, how long does it take for the body to heal.  I am so hoping we can have his bowel movements under better control before he starts middle school.  Also, I have 3 other children.  Should I have them tested as well?


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

The first few weeks or so a person generally goes through a gluten withdrawl. It takes time.

 

Yes, all first degree relatives should be tested and, if negative, retested every two or so years as celiac is genetic.

mommy2krj Explorer

Hello, welcome and big hugs! Good to have answers so you have a good direction to go in. We're new in the Celiac boat too and the people here are so incredibly informative and helpful (more so than most doctors!!!) Feel free to ask questions and I bet there will be someone who comes along that has been in that boat and can give you all sorts of good information.

It does take time. My little guy is still working on healing...though, it's been less than a week of gluten-free for him and I'm not sure we didn't have cross contamination issues with his sister's graduation party....and now being at his grandpa's and being gone at the zoo tomorrow. Hopefully, he comes back with no issues.

Anyway...welcome! Hugs to your son....he's entering that tender stage of needing to fit in with everyone. There is a kid on Facebook that is amazing. He has Celiac's and an adrenal disease....let me find his name and you or your son can search him out and see if he helps him to feel more normal. I know he posts other kids' Facebook pages that they start up about their journey with Celiac and what have you. I know it helps me knowing there are other parents out there....I figure it will help a little at least knowing there are other kids out there that have similar issues....and the kid isn't just on Facebook, he has a blog too...in case you haven't hopped on the Facebook bandwagon with your 11 year old. :)

mommy2krj Explorer

Found it! It's www.glutenaway.com

 

He's a 16 year and he shares a ton of really easy recipes. :) Hope this helps some.

nvsmom Community Regular

Welcome to the board.  :)

 

I'm sorry to here of your son's double diagnosis.  :(  It is possible that he could take some extra time healing because of the colitis, which from what I have observed, tends to really vary in how quickly one improves.  Celiac has a fair bit of variation too. Some seem to develop normal bathroom habits within a few days, most seem to take weeks, and some take months or years. It does seem to me that kids, and those who caught the disease early, tend to get back to normal faster.

 

Best of luck to him. I hope he manages to skip the gluten withdrawal (moodiness, fatigue, headaches, GI issues)  and feels better soon.

lcole Newbie

Thanks everyone.  I wasn't aware of the gluten withdrawal. 

bartfull Rising Star

Icole, if the rest of the family is eating gluten, and I assume they are, you need to be very careful about cross-contamination. He needs his own toaster, and condiments. If someone dips a clean knife in the peanutbutter jar or mayo or whatever, then spreads it on their bread and then dips it back into that jar, it is now contaminated. That may sound extreme to you at first, but it really is enough to make him sick and prevent healing. Cutting boards, wooden spoons and strainers - he needs his own. Scratched plastic or teflon is another place you can't get gluten out of. Read the Newbie 101 thread for a wealth of information about how to keep him truly gluten-free. And then read as many other threads as you can here. Check out the breakfast/lunch/dinner threads for meal ideas.

 

And ask as many questions as come to mind.

 

11 years old is a golden time for a kid. They are just beginning to blossom and become the person they are going to be. I teach guitar and 11 seems to be the best time for them to start. They are so creative at that age and the world is opening up for them. Give him a hug for me and tell him I hope he is feeling better soon. (You could even mention that I hope he takes up a musical instrument this year too.  :lol:  )


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



Celiac.com Sponsor (A8-M):



lcole Newbie

Thanks for the info once again.  You know, I had bought him his own peanut butter but totally forgot about the mayo and we had a dipping sauce on Sunday that we used mayo for with his chicken.  We bought a separate strainer, pot and cooking utensils for him.  I guess I am wondering for silverware, if I run it through the dishwasher, that should be fine, right?

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    5. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748

    bigwave
    Newest Member
    bigwave
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.