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Gluten sensitivity


Maddi

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Maddi Community Regular

I'm tested negative to celiac but I seem to be really intolerant to it. I've given up 95% processed foods and only eat processed foods with 1-2 ingredients,  in an attempt to get my health back and I have been doing well until last night... my insomnia, hot flashes, and anxiety all came back out of nowhere. All of which are the symptoms I get when I've been glutened. Yesterday I went out  with my bf and he ate pizza...then we held hands and I then ate apple chips without washing my hands. Could that have gotten me glutened? Also, I have been lazy about rewashing plates at his house and having my own seperate plates and silverware. I used a fork which I usually only way with spoons... (forks have more hidden spaces so I stay away from them). Could this really be from cross contamination?  Do any other non celiacs with a gluten sensitivity react to miniscule amounts of gluten? This is very very frustrating. I know it's worth it though bc anxiety sucks but it is all very frustrating bc you don't know where the source is coming from. 

Large amounts of gluten give me insomnia, panic attacks, anxiety, headaches, tingling extremities, hot flashes, nausea and dizziness. So it is mostly neurological. It's just so hard to believe that I'm this sensitive to such small amounts of gluten. /: it seems almost impossible to avoid it. I've recently started vegetable juicing and making my own water kefir, hoping that it will help me digest foods. Any thoughts? 


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flowerqueen Community Regular
22 minutes ago, Maddi said:

I'm tested negative to celiac but I seem to be really intolerant to it. I've given up 95% processed foods and only eat processed foods with 1-2 ingredients,  in an attempt to get my health back and I have been doing well until last night... my insomnia, hot flashes, and anxiety all came back out of nowhere. All of which are the symptoms I get when I've been glutened. Yesterday I went out  with my bf and he ate pizza...then we held hands and I then ate apple chips without washing my hands. Could that have gotten me glutened? Also, I have been lazy about rewashing plates at his house and having my own seperate plates and silverware. I used a fork which I usually only way with spoons... (forks have more hidden spaces so I stay away from them). Could this really be from cross contamination?  Do any other non celiacs with a gluten sensitivity react to miniscule amounts of gluten? This is very very frustrating. I know it's worth it though bc anxiety sucks but it is all very frustrating bc you don't know where the source is coming from. 

Large amounts of gluten give me insomnia, panic attacks, anxiety, headaches, tingling extremities, hot flashes, nausea and dizziness. So it is mostly neurological. It's just so hard to believe that I'm this sensitive to such small amounts of gluten. /: it seems almost impossible to avoid it. I've recently started vegetable juicing and making my own water kefir, hoping that it will help me digest foods. Any thoughts? 

Hi!  How were you tested for coeliac disease?  If it was a blood test, they are not very reliable (and you may still have coeliac disease - although you need to be eating gluten for at least 6 weeks on a daily basis for you to get a reliable result. The best way of getting checked is by having a biopsy.

cyclinglady Grand Master

Hi Maddie!

I could be starving and have some apple chips in my purse, but I would never eat them without first washing my hands.  You could have been glutened simply from cross contamination.   I make my kid wash her hands when she comes home from school or anywhere where she has had gluten exposure.  Make me feel better, lowers the risk of cross contamination, and we help to avoid the flu and other nasty bugs (school is germie)!   We all wash our hands when we come home from anywhere.  

Not much is known about non-celiac gluten sensitivity, so who knows?  

 

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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