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WakeupNurse

Just Confused At This Point, Gluten Free Isn't Helping Me!

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So I'll try to keep this fairy short but I've been diagnosed with a long list of problems throughout the last few years and my doc finally decided maybe it was celiac. My dx & sx include Vit D, Vit B12, and Iron Deficiencies, severe fatigue, peripheral neuropathy, fibromyalgia (recent onset since the stomach stuff has gotten worse it seems), GERD, narcolepsy (not related), and weight loss related to the fact that every time I eat I have the big D within 5-10 minutes. I have hardly any appetite and everything makes me sick. I am on a ton of meds for various ailments but they pretty much decided none of them were causing the distress. So he ran the blood work, in the mean time I went 100% gluten free, two week ago.

Blood work says I don't have celiac, but he said possible still gluten intolerance. My question is, if it is gluten intolerance causing all of this, when will I start to feel better because I still can't get more than 5 bites into a meal without running to bathroom, and am dropping weight like an ethiopian. While I have some weight to lose, I'd prefer not to lose it this way since my neuropathy has since come on since all of this worsened and I know that this is not healthy weight loss. I'm more fatigued than ever because I know that I'm volume & nutrient depleted but can't keep anything around long enough to absorb it! I've been extremely diligent and have a pretty good handle on nutrition concepts so I'm pretty sure I'm not being accidently glutened.

Any ideas that some of you long-timers might have as to what might help would be greatly appreciated!

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Have you tried eating very easy to digest things like white rice, bananas, maybe baked chicken with no spices?

Maybe your system needs some time to heal.


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My sources are unreliable, but their information is fascinating.

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Hi

There was someone with acute celiac at the delphi forum, she was in the hospital being fed into the blood, not the stomach-what do you call it. -anyway, she did have a diagnosis some years earlier but then five years ago or so had gone back on gluten because she had no symptoms. Until this happened.

So there is a chance you have something like that, and there are always some with total villous atrophy with negative blood tests.

Maybe. It will take some to be able to tolerate food by mouth then.

And, I have seen some postings from people that have read about the Specific Carbohydrate Diet, that people with damaged villi do not tolerate any carbs for a while. Not rice water, not commercial yoghurt. Just certain vegetables and meats. (because the enzymes must be made in the tips opf the villi, and if they are even blunted there is a problem with enzymes) Coud make sense.

nora


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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