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Behavior Got Worse Since Going gluten-free!


ABQturkey

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ABQturkey Rookie

My daughter is 6 and was diagnosed with celiac disease and has been gluten-free since mid-July. My husband and I have noticed that her behavior has gotten much worse since then. She has always been headstrong but now she flies off the handle over the littlest thing. We never know what's going to set her off or how long one of her "episodes" will last. I feel like she's in her terrible twos! She'll lay on the floor and pound her feet and throw a tremendous fit. Or she'll cry about something and when I ask her what she's crying about she won't answer me. I'm getting so frustrated - has this ever happened to anyone else?


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LOney Rookie

I know exactly what you are talking about. My son was diagnosed approx. 8 months ago when he was 3 1/2 and now being over age 4, he is very fresh, has major fits, and talks back constantly. He was a very sweet, mild boy in the past. My conclusion is that he was always feeling so sick before, he didn't have the strength to fight, now he is full of energy and doesn't quite know what to do with it, and lashes out when something isn't going his way. I am hoping he outgrows it soon - I am at the end of my rope and am losing patience with it. Maybe it is just a phase???? Good luck, let me know if you have any good results? Also - you might want to double check that she isn't getting any gluten. People often say that cc issues cause their kids to behave poorly . . . just a thought.

dilettantesteph Collaborator

I can relate when it comes to my behavior! I was on such a mood roller coaster at first. After about 8 months things started evening out. My son, 11, diagnosed at the same time, not so much. However, when he gets accidental gluten contamination that is the first indication of a problem. I think neuraltransmitter levels are normalizing.

missy'smom Collaborator

I can't speak for the kids but when I've gotten even just a little gluten from CC(cross-contaminated products too) one of my primary symptoms has been emotional outburts, especially if I've eaten that same product several days in a row. I've just burst into tears for no reason. Then I've thought about what was new to my diet and gone back and called the manufacturer, even with gluten-free products.

  • 4 weeks later...
dma Newbie

My Daughter was diagnosed in June, was 6 in July. I could not believe your posting when I read it. I registered for this forum to post my disbelief. We thought we were unique in what we were experiencing. My daughter displays exactly the same behaviours. We do not know what to do. Have you received any other feedback regarding this.

  • 2 weeks later...
ABQturkey Rookie

The only feedback I've received is what you see here. It is a relief to know that we aren't the only ones, but it doesn't help. I did have her tested for other allergies and the only thing was the dairy came back very negligably low as an allergen. I was almost hoping that it was something else like that. I'm looking into the Feingold diet - just dreading it though. At least Smarties and Tootsie Rolls are gluten free, but if I have to take those away as well.... :( But there's something to be said for cutting out additives, preservatives and colors. You are what you eat and all that... I will pray for you and your daughter.

ang1e0251 Contributor

I don't know about your children, but my sister put together that her grandaughter was sensitive to red dye just from her behavior. DS was sitting for her this last year and this normally delightful child would suddenly fly in rages, screaming and striking out even hitting herself against furniture and walls. She would have to held to protect her from herself until most of it past. This seemed to happen without provocation. My sister searched the net & realized parents describing red dye reactions in their children sounded a lot like this little girl. She decided to try cutting it from her dietand BINGO!! That seemed to be the key. Red dye is in an awful lot of products even some chocolates and white frosting! Now if Madison has a little accidentally, the reaction is much less than before. She was a small three when they figured this out.

Remember that once gluten free we sometimes find other sensitivities pop up. I recently realized I was reacting to nitrites/ates in ham, never seemed to have that problem before. This week I gave up coffee as it seems to cause my jaw to tremor. Good luck helping all of your kids, I will be thinking of you.


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    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
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