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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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    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
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    • SilkieFairy
      results from 13 day gluten challenge - does this mean I can't have celiac?

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      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    • Lkg5
      Unexpected gluten exposure risk from cultivated mushrooms

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      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      my IGG is 815 IGA 203  but tTG-Iga is   <0.4!!!!!!!!!!!!!   oh my god- 13 days of agony and the test is negative?  I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has   I am going to write up the history of my issues for the past few years and start a food/symptom diary to bring with me to the GI doctor in March.   I googled like crazy to try to find out what other things might cause these symptoms and the only thing that truly fits besides celiac is NCGS   but I guess there are some other things I maybe should be tested for ...? like SIBO?   I will continue to eliminate any foods that cause me distress (as I have been doing for the past couple of years) and try to keep a record. Can anyone recommend an app or some form or something that would simplify this? I have a very full and busy life and taking the time to write out each symptom name in full would be tedious and time consuming- some sort of page with columns to check off would be ideal. I am not at all tech savvy so that's not something I can make myself ... I'm hoping there's some thing out there that I can just download and print out   do I give up on testing for celiac with such a low number? I am 70 yrs old I have been almost completely off gluten for the most part for about 2 yrs. I had a meal of vital wheat gluten vegan roast,  rolls and stuffing made from home baked bread and an apple pie- and had the worst pain and gas and bloating and odd rumblings in my gut etc - almost went to the ER it was so bad. I was thinking, since I'm spilling a lot of calcium in my urine, that perhaps this was a kidney stone (never had one before but there's always that first time, right?)    Saw my endo on Jan 20th and after hearing the story about the symptoms from eating that holiday meal, she suggested doing a gluten challenge. She said 2 weeks was fine- she said stopping it in the middle if symptoms got bad was fine- In the meantime I'd read that 2 weeks was not enough- called and argued with the nurse about this, but ultimately decided to stop the gluten on the 13th day and get the test done because I was in too much pain and almost suicidal and knew I could not continue.   so.............. that's where I am now I have had no bread since Sunday. I did have some rolled oats today and had some gas and bloating afterwards I did have some wheat germ in a smoothie on Tuesday and had a stomach ache later that night.   but overall I feel so much better! all the joint pain is gone! the nausea is gone. The stomach pain and gas and bloating are going away. Still a bit gassy but no more of that horrible odor. wow, that would clear a room if I was out in public!  I see a GI nurse March 4th  I hope she'll be able to help sort this out! can you think of what my next steps might be?
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