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Tempted To Test Gluten


Lizz7711

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Lizz7711 Apprentice

I've been gluten-free and CF for two months now and I really haven't noticed any major changes. I was only experiencing minor digestive issues which are improved somewhat but not in a big way. When i've inadvertently gotten casein, i"ve noticed right away with body issues (headache, joint pain, sleepiness). Since i've been so good with the gluten, a part of me is tempted to just try a piece of bread. NOT to say I can then have it in my daily life...just to see what happens...almost hoping to have a bad reaction to help me know that my body must be getting better even if I feel the same. Anyone else ever do this? I never had diarrhea before from gluten, or nausea, but i've read alot of people having this reaction when "glutened". Did you have that problem beforehand or was that new after being gluten-free for a while? I'm curious to test this in myself...but also scared, lol!

thanks,

Liz


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MySuicidalTurtle Enthusiast

I do not think two months is enough time to heal. If you want to heal you should not risk anything just to see what would happen.

happygirl Collaborator

Were you diagnosed via bloodwork/biopsy for Celiac?

Lizz7711 Apprentice

That's one of the reasons I thought it wouldn't be so bad to test now as the reaction may not kill me :) I'm not saying it's "smart", but I keep reading about people getting deathly ill...and I just want to know what MY body will do. Maybe my reaction will be more like I have with casein...it would just be nice to know ahead of time.

I do not think two months is enough time to heal. If you want to heal you should not risk anything just to see what would happen.
Lizz7711 Apprentice

Yes, positive Enterolab stool tests...positive blood tests, no biopsy...also have DQ2 gene.

Were you diagnosed via bloodwork/biopsy for Celiac?
Lizz7711 Apprentice

I should add that I have recently been diagnosed with adrenal fatigue and hypothyroid--so i'm assuming that that is how the gluten manifested itself for me. Thing is, none of those symptoms have improved since going gluten-free either, but I am starting hypo meds and have been taking hydrocortisone for adrenal fatigue for past 5 months which has helped incredibly with my energy and ability to handle stress.

Were you diagnosed via bloodwork/biopsy for Celiac?

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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.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      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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