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Celiac Disease Vs Gluten Sensitivity - Please Help!

cami

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cami Rookie
cami
Posted

After >10 yrs of health issues (mainly diarrhea, bloating, periodic weight loss, loss of energy, anemia, excema etc) which both I and my Dr thought were related to some GI-problem, I believe I have identified the cause... Dr thought IBS first, then some other food intolerance. About a year ago I started to suspect gluten. After removig it totaly from my diet I got SO much better. Called the Dr again, who was supportive and ordered test & a biopsy - went back on gluten for a couple of monthe (which was horrible). Tests came back borderline and the biopsy was clear, som my Dr said: "No celiac disese, but you may be sensitive to gluen anyway, so you might want to cut down..." But whenever I have pasta or bred it starts again. Not directly, but within a week or so. So, I called my Dr again and she said: "Actually there is no such thing as gluten sensitivity... There is celiac disease, which you don't have..." Please help me out:

1) Is it scientifically proven thet non-celiac gluten sensitivity really exists?

2) If yes, can I eat pasta etc every now and then or do I need t be as strict as someone with celiac disease?

I would really appreciate your opinions on this!!!

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Jestgar Rising Star
Jestgar
Posted

I think you already know the answer to this. Gluten makes you sick. You can't eat it. Your doctor can only say that there was no evidence of destruction to your villi on the pieces that they took. There is no way to know what's going on in the rest of your intestine. Also, even if you aren't destroying your intestine, gluten makes you sick. You can't eat it.

tarnalberry Community Regular
tarnalberry
Posted

Well, there's no scientific definition of non-celiac gluten-sensitivity. So technically, there can't be "proof".

There is, however, scientific evidence of villious atrophy concordant with celiac disease that resolves on a gluten free diet in the absence of the celiac genes. There is scientific evidence of varying levels of villious atrophy. There is scientific evidence of false negatives for both the blood test (varying reasons, including insufficient damage to the intestines and high references ranges in some labs) and the biopsy (again, varying reasons, including varying levels of damaged required to be categorized as damage and the chance of missing patchy damage by only taking a few spots to biopsy). And, there is scientific evidence that YOUR BODY does not like - at the least - wheat containing items. (The dietary challenge is a VALID DIAGNOSTIC TOOL.)

The problem with the label "celiac disease" is that some doctors are *very* literal. The classic diagnosis requires specific levels of damage to sufficient amounts of the intestines. Kinda like asking "are you bald?" to someone in the middle of balding. There isn't room in the literal definition for "gluten damages me, but not bad enough to pass your test, yet".

You know you don't do well with wheat - so listen to your body and get rid of it from your diet. Whether it's more than just wheat... well, you haven't talked about reacting to other gluten sources, so my suggestion would be to test them. That runs you the risk of making you feel crappy again, so it's a very personal decision.

Chicklet Rookie
Chicklet
Posted

I have this book ~ Open Original Shared Link and the author makes a case for gluten sensitivity before celiac. It's a good book you might want to see if your library has it or you might want to buy it.

Sensitive or celiac a gluten free diet is a must.

Nancym Enthusiast
Nancym
Posted

Isn't it amazing how our bodies can speak to us so clearly, so compellingly, yet we don't trust them as much as some doctor who spend 11 minutes in medical school on the subject celiac disease, 20 years ago. :P

cami Rookie
cami
Posted
  • Author

Hi everyone,

thank you so much for you replies. Point taken - I should trust my body! I just need to know... Sure, I feel crappy if I eat pasta for a couple of days, but, is it dangerous.. I mean, REALLY dangerous. I'm thinking of the kind of illnesses that I read are connected to celiac disease: cancer, arthrithis etc...??

Jestgar Rising Star
Jestgar
Posted
Hi everyone,

thank you so much for you replies. Point taken - I should trust my body! I just need to know... Sure, I feel crappy if I eat pasta for a couple of days, but, is it dangerous.. I mean, REALLY dangerous. I'm thinking of the kind of illnesses that I read are connected to celiac disease: cancer, arthrithis etc...??

The only way you'll ever really know is by getting one of these. Is it worth it?

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