Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Intussusception In 12 Year Old Daughter
0

7 posts in this topic

Hello everyone,

I just joined this group today. My 12 year old daughter went into the hospital on New Year's Eve for 6 days for surgery due to Intussusception. She had to have 12" of her large intestine removed, 4" of small intestine, appendix, and ileocecal valve. She was out of school for almost 3 weeks and has a 7" scar across her belly. I fell horrible this happened, since she had been vomiting for 3 days prior and I thought it was the stomach bug going around. Well, it was life threatening and we got to the hospital just in time. She has been on a gluten-free diet since 6 when she passed out in nurses office, Ferritin was a 6 and her celiac antibodies were high on her bloodwork. Her belly always used to hurt her. Her GI put her on a stool softner for 6 months! I said Heck no, and put her on a gluten-free diet immediately. Within one day she got better.

As a pre-teen she cheats quite frequently and usually has severe gas pains a day or two later. Not always, so because of this she did not know the gluten was doing all this damage. Anyway, 2 days before this last intussusception she had regular pizza at a friends house! Her mother knew she was gluten-free but obvioiusly it didn't concern her. I'm convinced this is part of what caused this surgery, along with a stomach polp found in her intestine during the pathology analysis.

She has to go back in for a cat-scan in Feb to check for more polps, but the doc can't test her for celiac since she has been primarily gluten-free and would have to go back on gluten for 2 months! She can't do this, so we are making our own diagnosis. I'm going gluten-free too since I have hypothyroid, always exhausted, and have had severe hair loss for 10 years. Guess it manifests itself in different ways. Just had my 14 year old son's bloodwork done this past Thursday for a celiac panel. Her new GI doc said if he has it good chance she does too. (altho the pathology report said it did not "appear" she had celiac)

If anyone has any thoughts or comments on this we would appreciate it. It seems this is an epidemic.

Thank you.

0

Share this post


Link to post
Share on other sites


Ads by Google:

I'm so sorry your caught was so ill, I hope that is the last time she ever has to experience something like that. If I were you, I would consider her Celiac for all intents and purposes; don't worry about testing, as you know she gets sick when she cheats and (I'm assuming, from what you said) is healthy when she does not.

Really, the cheating needs to stop. I'm presuming that since she was getting away with it even though you knew it was happening, you probably did not realize, just as she did not, that severe damage was being done. It sounds like maybe you should sit down with her and have a serious talk about gluten: no cheating, never, ever. She's risking even more serious problems than she had already endured. My guess is that the mom who saw her eat the pizza assumed that your daughter knew how to manage her own diet properly (I'm not blaming your daughter, it sounds like the two of you really just didn't know how bad it was for her to cheat). The mom probably thought she could have some gluten now and then; a lot of people don't understand the gluten-free diet properly.

Do her doctors think that the intussusception was due to gluten exposure? I would just want to make sure it wasn't caused by an additional problem that requires treatment. (I don't know anything about it).

0

Share this post


Link to post
Share on other sites

Hello, I also get intussusception - it is directly related to when I eat gluten. I have had it 5 times within about 18months but luckily for me it has become "unstuck" each time, the last time I ate gluten it was very hairy and almost didn't become "unstuck" I was violently ill and rushed to hospital. And it was all because I had gone gluten free for 6 weeks and then went to out to eat with a group of friends ( I hadn't worked out a correlation with gluten at that point) I didn't want to be the "gluten free" one, so we all just shared a meal, within about 45 mins I could feel the pain starting - within another 30 I was violently ill and agonising pain and rushed to hospital. My Drs all agree that it is the gluten and coeliac. They say it is very, very rare, but it does happen. I/S in adults is so rare - like 0.0035 % of all bowel obstruction cases are due to that - but interestingly they did a study that found 20% of adults with it tested positive to Coeliac - so it can absolutely be a cause.

I have not had an episode since I last ate gluten. Previous to that I got it, then about 6 months later I had it again, and then 3 months later, and another 3 months etc etc. I has been a year almost to the day since that episode- so I have no doubt it was gluten.

Good luck - but you know, she can never ever eat gluten again, for her this is life threatening and she has to be so careful. Good luck!!!

0

Share this post


Link to post
Share on other sites

How terrifying. I think that it can be harder not to cheat for kids (actually anyone) who got diagnosed without something major that they remember happening. Hopefully the one good thing that will come from her having had to go through this terrible ideal is that she will NOT want to repeat that experience, and will be more careful in the future.

I know how hard it is to watch your child go through surgery, and the surgery your child went through was extreme and will affect her for the rest of her life. My heart goes out to you both. I wish her a speedy recovery!!!

0

Share this post


Link to post
Share on other sites

Oh, and I am 1,000,000% behind you on that no more gluten thing. No test is worth that risk after what she's been through. Do you have a copy of her bloodwork from when she was 6? That plus her surgery would be good enough for many doctors to write the necessary notes for school, I would think.

Our son (11 years old) doesn't have a formal diagnosis either. Even the slightest cross contamination brings his symptoms back, and there is no way I am putting him through months of eating a full-gluten diet and risking putting him back in the hospital just for a test. I've been doing a gluten challenge for 2 months for myself after a year of being gluten free without thinking I had a problem, and it's bad enough for me. Actually, I can not take it any more and things are getting scary. I'm quitting early and getting my blood work this week instead of next month.

0

Share this post


Link to post
Share on other sites




Thank you everyone for your replies and advice.

The doctors don

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,334
    • Total Posts
      920,438
  • Topics

  • Posts

    • Thank you cyclinglady! We'll just keep pushing forward and we'll get things figured out one way or another. You have been most helpful and informative and given me some great resources and things to consider. I really appreciate it! I definitely feel better as I've felt like a crazy mom lately thinking through the test results and everything. Even if it turns out to not be celiac or gluten related, at least I can say we did our due diligence and looked under every rock to find the source of his troubles. Thanks again!  Take care! 
    • Anxiety is quite a common symptom with undiagnosed celiacs. It should improve if not disappear when you go gluten free. Be sure to CONTINUE eating gluten until the endoscopy!   Welcome to the club!
    • Although serological tests are useful for identifying celiac disease, it is well known that a small minority of celiacs are seronegative, and show no blood markers for celiac disease. A team of researchers wanted to define the prevalence and features of seronegative compared to seropositive celiac disease, and to establish whether celiac disease is a common cause of seronegative villous atrophy. View the full article
    • This was absolutely me before diagnosis.  The worst of all of my Celiac symptoms occurred in the morning.  The anxiety was terrible in the mornings, I had horrible nausea, no appetite, felt light headed, dizzy and shaky, diarrhea, stomach cramps... the works.  Honestly, I don't know if it was the symptoms causing the anxiety, the anxiety making my symptoms worse, or a combination.  I almost dropped out of school because I felt so terrible every morning I didn't want to leave the house to go to class.  The first few doctors I saw insisted all of my symptoms were psychological and tried to give me anti-depressants/anti-anxiety meds, but I knew there was something else wrong with me.  I had always been a bit "high-strung," but for the year I was really sick before diagnosis, the anxiety got out of control. I was diagnosed with celiac disease 6 months ago and have been gluten free ever since.  It took time, but everything is gradually improving.  The morning anxiety is much improved and some mornings, is completely gone.  I realized a month or two ago that I no longer spend the first hour after waking up gagging and dry-heaving, something I had done for so many years that I just thought it was normal for me.  I can brush my teeth and my tongue without feeling like I'm going to puke.  I eat breakfast now, which I have never done, because I was always too anxious and nauseous in the mornings to be hungry.  I am not "all better."  I still have bad days and even bad weeks.  If I get glutened the anxiety comes back full force.  If I'm super-stressed out or letting my health slide (not eating well, not sleeping enough) the AM anxiety seems to return.  But, it has been slowly improving over the last 6 months and has become so much more manageable.   Your anxiety could be a separate disorder from the celiac disease, but for me, it seems it was absolutely related and continues to get better.  Don't get discouraged if you don't see an immediate improvement or experience relapses after improving.  Often, I feel like it's a two-step-forward, one-step-back kind of thing, but it is getting better.
    • I have suffered with GERD for 20 years and accidently found out it was a gluten intolerance. I had gone on Atkins years ago and noticed that I had no GERD symptoms while on the diet. I didn't make the connection at that time. Then I went on the Mayo Diet back in the winter and once again, the constant was having no bread primarily. I had also noticed that I would have major attacks anytime I ate Italian food. I blamed it on the onions, the tomatoes, herbs...but I could tolerate all those foods separately. Then, like a lightning bolt...it hit me...the culprit was the "innocent" pasta. BINGO!!  I went gluten-free in March 2016 and I have had no GERD now in 5 months. I feel as if it is a gift to me.   
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,390
    • Most Online
      1,763

    Newest Member
    tomj777
    Joined