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Getting Glutened??

inver

By inver
in Coping with Celiac Disease

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inver Apprentice
inver
Posted

Help! My 12 year old has been gluten free for 5 years.  However, she gets a really bad stomach ache, "sloshing" (her description), and reflux a couple of times a month.   Our blood tests keep coming back "clean", no contamination.  However, I suspect she is getting glutened.  It seems a lot of "gluten-free" foods (cheerios!, sunmaid raisins, certain brands of almond milk).  I keep a food and symptom diary but it is really hard to pinpoint what it may be sometimes.  For the past week she has had terrible stomach aches and reflux.  I try to keep our kitchen clean. The only "gluten" in the house is bread for my non celiac husband.  We've gone through EVERY test-- negative!   Questions:  who else has gone through this and what did you do to get better?   Do you eliminate dairy for a while after getting glutened?  Is it gluten at all?  She has tested negative for other food allergies and is not lactose intolerant.  Anyone try "holistic" doctors?  Live in US and getting NO WHERE with our conventional docs.  Help!

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kareng Grand Master
kareng
Posted

Maybe it has nothing to do with Celiac and gluten?  People do get reflux and "sloshing" and not have Celiac.  Maybe go to a pediatric GI and see if she has something else going on?  Maybe see if she will do a more restricted diet for a few weeks so you can add things in and see what bothers her?  

inver Apprentice
inver
Posted
  • Author

Yes I've been thinking that could be the case.  I've already brought her to the pediatric GI.  She just "doesn't know".  We have been making sure she's not constipated (she's not).  Very frustrating.  I see one of your interests is making teens eat vegetables!  Me too! Good luck with that...Thank you

 

ravenwoodglass Mentor
ravenwoodglass
Posted

Try dropping anything with even gluten-free Oats. Some us us don't tolerate them and have a gluten reaction when we consume even oats that are certified gluten-free.

Also look into the possibility that reactions could be related to arts and crafts projects at school. At that age my kids were doing stuff like paper mache projects in school.

Anna Walker Newbie
Anna Walker
Posted

This sounds like me as a kid! I was diagnosed with celiac when I was 15 (after being sick since I was about 10).

I had to cut out dairy, ALL processed gluten free foods, most grains & legumes and other gluten-cross reactors before getting better. I was also treated for SIBO and leaky gut. Might want to look into that.

Hope your daughter gets some relief!

PinkyGurl Explorer
PinkyGurl
Posted

Ditch the Cherrios!  Their testing and process is sketchy at best.  Also like others have said many celiacs can't tolerate even purity protocol oats.  My GI and nutritionist both warned me to try to stay away from oat but maybe a few times per year because of cross reaction issues.  If that doesn't help then I would try elimination diet of the big hitters I.e. Soy , dairy, eggs, beans. She may not be allergic but she may be sensitive.

cyclinglady Grand Master
cyclinglady
Posted

I could have sworn that my 19 year old niece had celiac disease, but she tested negative.  Doctors didn't know what she had (two different GI's).  Her symptoms were sporadic.  Finally, her new GI ordered a pill cam.  She was diagnosed with Crohn's Disease.  Not saying that your daughter has Crohn's but we were all sure she had celiac disease.  Just couldn't see the Forest through the Trees!  

Trying thinking outside the box.  SIBO is another  thing to rule out (Anna's suggestion and PinkyGurl's leaky gut/intolerances.)  Stick to whole foods and avoid even certified gluten free foods for a while.  Finally, when I've been glutened, I do become lactose intolerant again.  I have to eat soft, well-cooked foods (even fruit) that are easy to digest for a while.  

Oh, here's food for thought.  I was reading Dr. Fasano's Gluten Freedom.  One teenager started to get sick again.  His parents couldn't figure it out.  In a private conversation, Dr. Fasano learned that the kid was dating a girl and he didn't want her to know he had celiac disease.  So, he ate pizza.  Nothing happened.  He did it again.   Nothing.  A few weeks later, his celiac disease symptoms resurfaced.  Not saying your daughter has cheated, but she's in middle school and that's a tough age.  Kids are desperate to fit in (I have a 15 year old).  

I hope you figure it out.  

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Fundog Enthusiast
Fundog
Posted

Since I went gluten free, my acid reflux (and it was severe!) went away.  I do still get some heartburn, though not nearly as bad as it was.  I've realized certain foods will trigger the heartburn for me:  peanut butter, vegetable juice, spaghetti sauce, peppers, salsa.  I find that sleeping on my left side at night helps.  If I take those chewable antacid tablets, I wait until I've burped before I lay down.

inver Apprentice
inver
Posted
  • Author

Thank you for all of the replies!  She is a bit better but still has stomach sloshing.  Going to get second opinion from different gastroenterologist.

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