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Help...gf But Getting Worse
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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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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!

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

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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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    • Oh, Trish at the GlutenFreeWatchDog tested Planter's honey roasted peanuts three years ago.  The can did not state gluten-free, but showed no gluten ingrediants (per Kraft policy).  Test result: less than 5 part per million which is pretty much gluten-free.  
    • What if it were something else that glutened you?  Maybe you ate too much of a good thing?  I once (three months post dx) ate too much gluten-free fried chicken, vomited, passed out and fractured my back (osteoporosis) in the process.  Paramedics, ER doc and Cardio all thought I was having a heart attack.   No.  It was sheer gluttony and bad bones.  Not good to overload with a damaged gut.    Maybe you did get some contaminated nuts.  Afterall, anything processed is suspect.  What might be well tolerated by some, might be too much for others.  We all have our various levels of gluten intolerance.   The old 20 parts per million is just a guideline, but science does not really know (lack of funding......doe anyone really care enough to find out?)  My hubby has been gluten-free for 15 years.  When I was first diagnosed, I tried to eat the gluten-free foods that I normally gave him.   Problem was he was healed and I was not.  Things like Xanthan Gum in commercial processed gluten-free breads make me feel like I have been glutened, but it is just (and still is) an intolerance.  So no bread for me unless I make it myself using a different gum.   Too lazy, so I do without.   so, ask your doctor if you really want to know or lay off the cashews and test them again in a month using a certified gluten-free nut.  I wish this was easier!    
    • I have intolerances to a few foods now, so I was wondering about that.. I love cashews though, and a month or two ago I was eating them all the time with no problems at all. I mean, could I really have developed an intolerance to them since then? I don't know if they're made on shared lines (it didn't say on the package so I assumed they weren't), but I'll give them a call. I'm really, really sensitive to cross contamination. Even if something is just made in the same facility (but not on shared lines) it will make me sick. If that's not it, then I'm not really sure
    • Research with KP and find a celiac-savvy GI in your area ( read the biographies). and ask your PCP/GP for a referral to that specific GI (not his buddy).  Ask the GI for the rest  of the celiac panel or proceed with an endoscopy/biopsies -- 4 to six.  Keep eating gluten daily until all testing is complete.  Document and request in writing.  Do not worry about symptoms.  There are over 300 of them and some celiacs have none!   Research all that you can about celiac disease.  The University of Chicago has a great celiac website that has testing Information etc.   Poet me know how it works out.  Hope you feel better soon!  
    • I react to both wheat and barley.  I've opted to just go completely gluten free, for the sake of simplicity and my sanity.  I don't have a diagnosis of celiac disease, but I strongly suspect it.  Unfortunately, I'm not willing to endure the misery of staying on gluten long enough to pursue further testing.  I just know I need to avoid the gluten grains, so I do.  
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