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Help...gf But Getting Worse


wwebby

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wwebby Apprentice

Hi everyone,

I'm not officially diagnosed; my gastro doesn't think celiac disease as only the anti-gliadin was high, but my enterolab results were very very high so I went gluten free (and casein free) on Saturday.

Already, I am feeling much much clearer in my head (the "fog" has lifted) and my ears have cleared up, but my stools are getting worse. (sorry for the descriptiveness) I didn't really have stool symptoms before, maybe they were a little soft, pale, and floaty, but not a big deal. But now, they are almost like D and this has been in the days since I quit gluten and casein. Does anyone know what's going on? Why would I be getting worse? I would appreciate your stories/advice/theories. Thanks so much.

--Laura in CT


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Guest gillian502

It sounds like in some ways you're getting better, but the diarrhea of course is not a good sign. That could be a reaction to your change in eating habits, though, which is common. Are you losing weight or feeling worse in other ways? Have you had a colonoscopy? If the diarrhea is a problem for you a colonoscopy and an endoscopy to check for damage to the small intestine is a good idea. Change doctors if you have to, to get this stuff done. I went gluten-free 9 months ago after my diagnosis, and I felt absolutely terrible on this diet for months. I stuck with it, though, and eventually it did get better. The incredible change in my usual eating habits just didn't sit well with my system at first. This could be what's happening to you, but I'd ask the doctor. Perhaps your symptoms are being caused by something else like Colitis or Crohn's, and that's why a positive eating change did help somewhat but not completely. Anytime you change eating habits, your body is going to react, so this may be just temporary!

tarnalberry Community Regular

are you eating anything as substitutes for gluten-filled foods that could exacerbate the problem? are you taking any different supplements?

Lily Rookie

For the first 2-4 weeks I went gluten free, I felt worse than ever. My nutritionist says it was my body detoxifying. I was only eating potatos, rice, carrots and apples. But when I finally started healing, boy did it feel good. Nothing actually hurt. Processed foods made me sick right away again when I added them back in.......even though they say gluten free. I hope you feel better soon so you know you're doing the right thing.

Blessings,

Lily

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
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