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Intussusception In 12 Year Old Daughter


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#1 NHyogagirl

 
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Posted 21 January 2012 - 11:14 AM

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.
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#2 AzizaRivers

 
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Posted 21 January 2012 - 01:11 PM

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).
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Celiac diagnosed October-November 2010 (blood test negative, biopsy inconclusive after gluten-free for 6 weeks, miraculous diet results).

October 2010: Gluten free.
November 2010: No HFCS or artificial sweeteners.
March 2011: Gradually fading out soy.

#3 beebs

 
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Posted 21 January 2012 - 02:01 PM

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!!!
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HLA DQ8, gluten-free since January 2011

#4 domesticactivist

 
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Posted 21 January 2012 - 09:49 PM

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!!!
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#5 domesticactivist

 
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Posted 21 January 2012 - 10:40 PM

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.
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#6 NHyogagirl

 
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Posted 22 January 2012 - 06:20 AM

Thank you everyone for your replies and advice.

The doctors don’t know what caused the intussusception. Her pediatric surgeon said it is not gluten, it was due to a virus. He does not believe gluten intolerance is real. (don’t get me going on this) Her gastro said it was probably the stomach polp that was the “lead point” for this, and the inflamed intestines could have factored in.

Her alternative/Integrative doc (trained under Andrew Weil!) likens it to “a perfect storm”. Meaning maybe the polp, gluten and virus all played a part. I hate not having a definitive answer but I know in my heart that the gluten contributed to this. I had a long talk with her last night about this and the seriousness of her diet.

On 10/30/11 she had doubled over pains. I thought it was gas. I think it was an intussusception. She had a pizza party at school 2 days before and ate one piece. She told me last night when she ate that first bite and swallowed it her stomach started to get upset and her body told her “don’t eat this”. But she said it tasted so good she just kept continuing with it. Anyway, I thought it was bad gas, so didn’t take her to the emergency room. This happened 2 years ago and after waiting 6 hours in ER they read the xray and said it was gas. So this time I gave her an enema and then the pains went away. The enema probably cleared the intussusception. I had no idea this could ever even happen until it happened to her!

We don’t have any celiac in my family, but do have autoimmune stuff going on. I read the book “Dangerous Grains” and it highlights how gluten can manifest as so many different diseases.

I’d like to do the gluten challenge myself also, but decided with my own issues I’ll go gluten-free too. And we’ll see what my son’s tests read this week. It’s just so hard to be out and not many places have food she can eat. So we really have to plan ahead and bring nuts, and gluten-free bars, etc. in the car.

And I agree, that after this serious surgery, she won’t want to have to repeat this again and this will probably prevent her from cheating (knowingly) again. Let’s hope…
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#7 beebs

 
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Posted 22 January 2012 - 12:46 PM

Maybe you should show this peer reviewed study to the Paed Surgeon - Celiac can very well cause I/S as can polyps!
http://www.ncbi.nlm....pubmed/20033844
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HLA DQ8, gluten-free since January 2011




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