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lcole

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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?


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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:  )


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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?

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    • trents
      I assume that you already know that genetic testing for celiac disease cannot be used to confirm a celiac diagnosis. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. It can be used to rule out celiac disease with a high degree of confidence, however, in the case where the genetic testing is negative for the genes. Until and unless you are actually diagnosed with celiac disease I would not raise this as an issue with family. However, if you are diagnosed with celiac disease through blood antibody testing and/or endoscopy with positive biopsy I would suggest you encourage first degree relatives to also purse testing because there is a significant chance (somewhere betwee 10% and almost 50%, depending on which studies you reference) that they will also have or will develop active celiac disease. Often, there are symptoms are absent or very minor until damage to the small bowel lining or other body systems becomes significant so be prepared that they may blow you off. We call this "silent celiac disease". 
    • trents
      If you were off gluten for two months that would have been long enough to invalidate the celiac blood antibody testing. Many people make the same mistake. They experiment with the gluten free diet before seeking formal testing. Once you remove gluten from the diet the antibodies stop being produced and those that are already in circulation begin to be removed and often drop below detectable levels. To pursue valid testing for celiac disease you would need to resume gluten consumption equivalent to the amount found in 4-6 slices of wheat bread daily for at least two weeks, preferably longer. These are the most recent guidelines for the "gluten challenge". Without formal testing there is no way to distinguish between celiac disease and gluten sensitivity since their symptoms overlap. However, celiac disease is an autoimmune disorder that damages the small bowel lining, not true of gluten sensitivity. There is no test available for gluten sensitivity so celiac disease must first be ruled out. By the way, elevated liver enzymes was what led to my celiac diagnosis almost 25 years ago.
    • trents
      Then it does not seem to me that a gluten-related disorder is at the heart of your problems, unless that is, you have refractory celiac disease. But you did not answer my question about how long you had been eating gluten free before you had the blood antibody test for celiac disease done.
    • Xravith
      My genetic test results have arrived - I’m homozygous for DQB1*02, meaning I have HLA-DQ2. I’ve read that this is one of the genes most strongly associated with celiac disease, and my symptoms are very clear. I’m relieved that the results finally arrived, as I was getting quite worried since my symptoms have been getting worse. Next step, blood test. What do these results imply? What should I tell my family? I’m concerned that this genetic predisposition might also affect other family members.
    • Roses8721
      Two months. In extreme situations like this where it’s clearly a smoking gun? I’m in LA so went to a very big hospital for pcp and gi and nutritionist 
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