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Confused And Frustrated


Regameleca

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Regameleca Rookie

Hi guys, wondering if anyone could offer any advice or insight?

Basically I've been eating gluten free now for a couple weeks, I went to Italy and had a gluten binge 2 weeks ago but was gluten-free before that. I wanted to reintroduce to see if I was indeed intolerant(which I'm now sure I am) anyway before I went to Italy I felt fantastic but since I've returned I've just been getting worse and worse everyday! Now I'm getting stomach cramps and bloating every night with both D and C and I have this terrible patchy eczema like rash all over my legs, which just isn't getting better. Getting headaches and dizzy too. Is it normal to continue to react like this? Shouldn't I start to feel better, not worse? I feel like I'm getting glutened everyday, but I'm being so cautious and taking no risks at all... I have been making gluten free cakes, is it possible these are too much right now?

Thanks guys, my dr is none too helpful, he had to google celiacs disease when I asked to be tested! Ugh, at least I got him to test me. Any advice you can tell me would be grand:)


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Marilyn R Community Regular

Hi guys, wondering if anyone could offer any advice or insight?

Basically I've been eating gluten free now for a couple weeks, I went to Italy and had a gluten binge 2 weeks ago but was gluten-free before that. I wanted to reintroduce to see if I was indeed intolerant(which I'm now sure I am) anyway before I went to Italy I felt fantastic but since I've returned I've just been getting worse and worse everyday! Now I'm getting stomach cramps and bloating every night with both D and C and I have this terrible patchy eczema like rash all over my legs, which just isn't getting better. Getting headaches and dizzy too. Is it normal to continue to react like this? Shouldn't I start to feel better, not worse? I feel like I'm getting glutened everyday, but I'm being so cautious and taking no risks at all... I have been making gluten free cakes, is it possible these are too much right now?

My guess is that you need to give your poor gut and autoimmune system a rest. You just kicked it into ovedrive. So I'd stick with safe stuff (real, unprocessed food) for awhile and knock alternate grains and additives like guar gum etc off for awhile. I'm not even sure I'd drink coffee. Sage tea is good when you're healing...

Regameleca Rookie

Thanks for that! Top tip, I just so happened to have a big bag of sage tea from turkey in my cupboard. I've had 2 cups today thus far and my tummy feels more soothed already!

Also when healing does exercise get really tough? I cycle to work and back everyday and recently it's become very hard. Annoying!!!

Thanks again!

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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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